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		<title>Newsletter Issue 18 March 2005</title>
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&lt;hr /&gt;
&lt;div&gt;==E D I T O R I A L==&lt;br /&gt;
===A new year, new challenges, new plans===&lt;br /&gt;
With the “big sleep” of summer over, cancer consumer action has geared up.  This newsletter brings you a summary of what’s been happening recently, what we plan to work on – on behalf of you, our members and the many people affected by cancer in NSW.  It may seem a bit dry sometimes, when we are going on about something that really doesn’t stir you up - and nothing stirs everyone all the time!  &lt;br /&gt;
The thing about cancer consumer advocacy that we learn as we go along, is that change does not happen over night – we must be patient and accept small steps rather than great leaps.  There is a cancer world out there with very entrenched attitudes.  So, be patient with us, and better still, keep &lt;br /&gt;
feeding in your outstanding issues and tell us what you would like to read about – we are happy to consider all suggestions (send by mail or email).&lt;br /&gt;
&lt;br /&gt;
The big items on our plate for 2005 are the setting up of Cancer Australia, Senator Peter Cook’s Cancer Inquiry (following his own experiences on the cancer journey), the directions which emerged from our own Planning Session, and continuing to help the new Cancer Voices peak groups &lt;br /&gt;
emerging in each Australian state.  Not to mention plodding along to improve support for support groups, and asking for news of the implementation of the Cancer Framework's Standards in each Area Health Service.&lt;br /&gt;
&lt;br /&gt;
My own new hands-on experience of the cancer journey, ten years after initial diagnosis, has made me more aware of a number of issues faced by those of us with advanced cancer.  For six weeks over Christmas and January, I submitted myself to two lots of surgery – one a mastectomy, and the other removal of three isolated breast cancer metastases in my liver, along with 50% of said liver.  The decisions were made after a lot of balancing of possible risks and benefits and some SWOT analysis (seriously).&lt;br /&gt;
&lt;br /&gt;
Questions we should ask include: Where is the multidisciplinary team examining options and making a recommendation?  What are all the possible treatment options? Where do I find reliable info about helping my body to cope with treatment and to live with a new disease status?  Where there is little evidence, should we be influencing researchers to look at those topics?  Should some advanced cancers be regarded as a chronic condition? &lt;br /&gt;
&lt;br /&gt;
Thanks to all those in Cancer Voices who helped me through this extension of the journey - with information, advice, support, flowers and food!  &lt;br /&gt;
&lt;br /&gt;
Sally Crossing, Chair&lt;br /&gt;
&lt;br /&gt;
==AGM 16 FEB 2005==&lt;br /&gt;
&lt;br /&gt;
Held at The Cancer Council NSW, the Annual Report (appears on pages 7 &amp;amp; 8) and Financial Statements for 2004 were presented.  Elections for Office Bearers for 2005 were held, with the following result (nominating member groups in brackets):&lt;br /&gt;
*Chair:  Sally Crossing  (Breast Cancer Action Group NSW)&lt;br /&gt;
*Deputy Chair:  David Sandoe  (Support and Advocacy Group, Prostate Cancer Foundation of Australia)&lt;br /&gt;
*Secretary: Deborah Harrison (Sutherland Shire Cancer Support Group)&lt;br /&gt;
*Treasurer:  Sandra O’Sullivan  (co-opted)&lt;br /&gt;
*Committee:&lt;br /&gt;
**Jane Cruickshank  (Life Force Foundation)&lt;br /&gt;
**John Stubbs  (Leukaemia Foundation Consumer Group)&lt;br /&gt;
**Melanie Cocks  (Active Women Touched by Cancer Celebrating Life)&lt;br /&gt;
**Elisabeth Kochman  (BCAG NSW)&lt;br /&gt;
**Sally Hodgkinson  (BCAG NSW)&lt;br /&gt;
We were delighted that our Patron, the Hon John Fahey AC was able to join the AGM.  His address was very encouraging.  He spoke of the recognition of Cancer Voices representatives as well known cancer &lt;br /&gt;
advocates within the cancer world. &lt;br /&gt;
&lt;br /&gt;
===Meetings:===&lt;br /&gt;
During the year, the CVN Committee welcomes representatives from its member groups to join our six-weekly meetings.  This gives them an opportunity to get to know our work better and decide if they would like closer involvement.  2005 dates are: Wednesday 30th March, 11th May, 22nd June, 3rd August, 14th September, 26th October, 7th December.  For more details contact 02 9523 5200.&lt;br /&gt;
&lt;br /&gt;
==SPEAKING UP==&lt;br /&gt;
===Cancer Voices goes to NZ===&lt;br /&gt;
Cancer Voices New Zealand, with whom we linked informally last year as they began to establish themselves, invited Cancer Voices NSW to address a day-long meeting on 22 March in Wellington.  We had 30 minutes at the start of the program to share our experience and lessons learned with attendees from all over New Zealand, gathered to “strengthen their partnership”.  John Stubbs, CVN committee member made the presentation on our behalf.  (SC) &lt;br /&gt;
&lt;br /&gt;
=== CVN talks to 350 cancer specialists===&lt;br /&gt;
Sally Crossing was invited to give the Introductory Talk to the Australasian Multidisciplinary Scientific&lt;br /&gt;
Meeting, held in Sydney, 25-27 February. The title was Consumer Advocacy – and the opportunity was seized with delight!  It was a great chance to introduce a large number of cancer specialists to what we in Cancer Voices do, how we see the future of cancer consumer advocacy and how we can work together, - same goals, just different perspectives.  Excellent networking scope as well.   The fact that this address was the first for the Meeting, says something about how we are now regarded by the medical profession – with interest and respect.  (SC) (A copy of the address is available via [mailto:info@cancercoices.org.au info@cancercoices.org.au])&lt;br /&gt;
&lt;br /&gt;
==STAKEHOLDERS==&lt;br /&gt;
&lt;br /&gt;
===The Cancer Council NSW===&lt;br /&gt;
Our regular sessions with the Directors of the &lt;br /&gt;
Information &amp;amp; Support, and Advocacy Divisions have begun again. We discuss how we best work together to implement priorities raised by our members.&lt;br /&gt;
&lt;br /&gt;
In March, TCCN began Telephone Group Counselling for lung, brain, advanced cancer, carers &amp;amp; family members and general cancer patients. These will be particularly useful for people living in remote areas or who are isolated for other reasons. For info, call 02 9334 1755, the Helpline 13 11 20 (local call cost) or email [mailto: tgc@nswcc.org.au tgc@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
CVN has continued to provide reps for TCCN’s &lt;br /&gt;
revision of its information booklets over recent months: including Hodgkins’s Disease, Brain Tumours, Lung Cancer, Radiotherapy, Communicating with Kids, Multiple Myeloma, Prostate Cancer, Eating Well and Lifestyle, Testicular Cancer, Emotions and Cancer.&lt;br /&gt;
&lt;br /&gt;
The good progress on Consumer Involvement in &lt;br /&gt;
Research is reported separately.&lt;br /&gt;
&lt;br /&gt;
We very much appreciate the in kind support given by TCCN to help our work: this includes printing and mailing our Newsletter&lt;br /&gt;
&lt;br /&gt;
==2.  Cancer Institute NSW==&lt;br /&gt;
We have had confirmation from the Cancer Institute of our Cancer Voices nominees to their various &lt;br /&gt;
Advisory Committees (AC) and Sub-committees for 2005. These are:&lt;br /&gt;
&lt;br /&gt;
*Clinical Services AC: Sally Crossing&lt;br /&gt;
*Rural Oncology Sub-committee: Terry Smith&lt;br /&gt;
*Radiation Oncology Sub-committee:  Harry Collins&lt;br /&gt;
*Patient Support Sub-committee:  Jane Cruickshank&lt;br /&gt;
*Standard Treatment Protocol S-C: Carly Tucker&lt;br /&gt;
*Complementary Therapy S-C:  John Stubbs, Melanie Cocks&lt;br /&gt;
*Quality &amp;amp; Clinical Effectiveness AC: John Stubbs&lt;br /&gt;
*Research AC: Cheryl Grant&lt;br /&gt;
*Clinical Trials Sub-committee:  Cheryl Grant&lt;br /&gt;
*Cancer Information &amp;amp; Registries AC :  Norman Thompson &lt;br /&gt;
*Population Health &amp;amp; Screening AC : Roberta Higginson&lt;br /&gt;
&lt;br /&gt;
*Cancer Screening sub-committee: TBA&lt;br /&gt;
Cancer Education &amp;amp; Workforce AC:  Elisabeth Kochman&lt;br /&gt;
Various ad hoc working parties will also be provided with interested, informed CVN reps during the year. &lt;br /&gt;
CI funding for Cancer Services in the eight Area Health Services has been flowing through to fund new services and capabilities, which will enable &lt;br /&gt;
implementation of the Cancer Framework.  CI &lt;br /&gt;
funding of research programs is in full swing.  &lt;br /&gt;
&lt;br /&gt;
*Screening:  The CI now manages all screening &lt;br /&gt;
programs in NSW, BreastScreen NSW being the &lt;br /&gt;
latest addition to the stable.  We understand they are looking at a bowel cancer screening program.&lt;br /&gt;
&lt;br /&gt;
==3. AHS Cancer Services==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices continues to ask for detailed advice about how the eight Area Cancer Services are &lt;br /&gt;
performing against the Standards of the Clinical &lt;br /&gt;
Service Framework for Optimising Cancer Care in NSW (the Framework).  Especially now that the AHS are receiving substantial amounts of money to do so, from the Cancer Institute NSW.  We have heard that at least one Cancer Service has received no funding – it seems to be caught up by an AHS which does not see cancer as a priority!&lt;br /&gt;
&lt;br /&gt;
So far, we have only received vague replies to the questions of where, when and on what cancer &lt;br /&gt;
services the new funding is being spent.  CVN and health planners need to know the answers – it is public money, after all - and how each Cancer&lt;br /&gt;
Service is performing, so that gaps and good &lt;br /&gt;
examples can be identified and addressed.  Cancer Voices is interested at a state planning level and to be able to provide our trusty AHS Cancer Service Reps with some information to help them in their local work.&lt;br /&gt;
&lt;br /&gt;
We hope to be able to invite our Area Cancer &lt;br /&gt;
Service reps – all  20 of them - to come to Sydney for a debriefing and sharing of experiences “out there”, in the real world.  This is dependent on &lt;br /&gt;
funding, but we aim to give you lots of notice, and hope you will join us.  Meanwhile, ask your Cancer &lt;br /&gt;
Services Director if CI NSW funding is coming through and advise us if it is not.  Also ask how their Cancer Service is performing against the Framework Standards, using the green NSW Health Framework publication.  (SC)&lt;br /&gt;
&lt;br /&gt;
==CONSUMER REPRESENTATION==&lt;br /&gt;
Another Consumer Advocacy Training (CAT) course was held in Maitland in February, and we welcome new and older Cancer Voices members who graduated then. &lt;br /&gt;
A second 2005 CAT course will be held in Wagga Wagga on May 6 &amp;amp; 7. Contact Sarah Ford on 02 9334 1753 at The Cancer Council NSW for details.&lt;br /&gt;
To date, fifty-eight CAT-trained CVN members have expressed interest in representing you.  Contacting them quickly, and in their interest area, has been a challenge.  Sally Hodgkinson has been working on our database to make this happen more easily.&lt;br /&gt;
Requests for CVN reps from our website have been high over the last few months, but we are usually able to find the right rep for the right job.  Thanks to all those who are out there providing the cancer consumer viewpoint where it needs to be heard.&lt;br /&gt;
Sometimes we are stuck – we had trouble filling a request for three consumer reps to work on a &lt;br /&gt;
radiation oncology curriculum working party – anymore takers?  We are short on CVN reps with an interest in RT, so if you are interested, please let us know.&lt;br /&gt;
We are considering some email broadcast lists to let you know about coming rep positions and hope to have this working before long.  Once the process is working well, I hope someone will take on the job of managing our consumer reps program. (SC)&lt;br /&gt;
&lt;br /&gt;
==National Cancer Clinical Trials Register==&lt;br /&gt;
Three Cancer Voices representatives (John Stubbs, Jane Cruickshank and Sally Crossing) attended a workshop on 23 Feb devoted to the next steps &lt;br /&gt;
towards this register.  Cancer Voices tabled a &lt;br /&gt;
Statement of Support for the concept to inform other attendees of our position.  We worked all day with representatives from the pharmaceutical industry (Roche was the host), Medicines Australia, the National Health &amp;amp; Medical Research Council (NHMRC), cancer organisations and individual clinicians.&lt;br /&gt;
For Cancer Voices, John Stubbs gave the Consumer perspective address, raising the interests of individual patients wanting to find the right trials for themselves, and the broader aims like greater participation rates. &lt;br /&gt;
The NHMRC speaker advised that a national register for all clinical trials in human health interventions is about to be developed and funded.  We expressed concern that this may delay access to the cancer part of such a complex register, especially in light of the quite extensive work already done for cancer through the AWARE program (Cancer Trials NSW).  We would like to see cancer used as the pilot &lt;br /&gt;
project or model for the comprehensive register.  Our interest is in making cancer clinical trials more accessible for patients who might be eligible for them and for their doctors, giving interested people useful information about what’s on offer, and &lt;br /&gt;
increasing Australian participation rates as well. We think they heard our voice!&lt;br /&gt;
Recommendations from the workshop have been presented to the March NHMRC meeting.  (SC)&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
===Consumer Involvement in Research===&lt;br /&gt;
&lt;br /&gt;
After a couple of years’ lobbying via Sally Crossing’s membership of the TCCN Cancer Research &lt;br /&gt;
Committee, a special working party has been set up to work out a formal mechanism for involving &lt;br /&gt;
cancer consumers in assessing research grant applications. The idea is that a consumer panel will assess these using consumer focussed criteria. Chaired by Sally with CVN reps Cheryl Grant, John Stubbs, Pam Bell and Maryanne Maher, as well as interested &lt;br /&gt;
professionals, this work has the potential to develop a model for other organisations which fund &lt;br /&gt;
research. (SC)&lt;br /&gt;
&lt;br /&gt;
===Commonwealth Support for Support Networks &amp;amp; a National Consumer Forum===&lt;br /&gt;
&lt;br /&gt;
At the last Federal election, the Commonwealth Government’s Strengthening Cancer Care initiative was endorsed. This policy states that the Government will raise the priority of cancer, committing $137m to do so. The policy begins with Part 1: Supporting Australians Living with Cancer; under which appears Section V, Building Cancer Support Networks. &lt;br /&gt;
During discussion at the National Cancer Strategies Group (NCSG) meeting in late 2004, Government made a firm commitment for holding a National Cancer Consumer Forum.  This was strongly supported by the Cancer Council of Australia (TCCA) and the Clinical Society of Oncologists (COSA), plus a number of key stakeholders such as NBCC and NCCI. As your consumer representative on the NCSG, I agreed to this.&lt;br /&gt;
&lt;br /&gt;
On 9 February, a small working party chaired by Jane Cruickshank (CVN/NCSG) met at The Cancer Council Australia (TCCA) on February 9, 2005.  Other consumers in attendance were Sally Crossing (CVN/BCAG), Don Baumber (CAN/PCFA-SAC) and John Stubbs (CVN/Leukaemia Foundation). Unfortunately, Clive Deverall (CVWA/NCSG) and David Sandoe (PCFA-SAC) were unable to attend. Representatives of the Department of Health and Ageing Cancer Services Division (DOHA) were Ian Kemp, Chris Dunstone and Dr Rosemary Knight.  Prof Alan Coates (TCCA), Margaret McJannett (TCCA and COSA) and Gill Batt (TCCN) were also present. Cancer Voices tabled a proposal for a Three Tier model which reflects connections, or networks, between local, state and national cancer support groups.&lt;br /&gt;
&lt;br /&gt;
===What we want to achieve===&lt;br /&gt;
Create more opportunities for people involved across CVN, including consumer representatives on the 	AHS committees and CVN members responsible for particular priority 	areas, to be involved and to have responsibility for ensuring an issue gets addressed and communicated to others.&lt;br /&gt;
&lt;br /&gt;
===Specific strategies===&lt;br /&gt;
CVN member/AHS representative prepares a draft response on an issue of concern&lt;br /&gt;
Draft response referred to CVN Committee for comments (circulated via the Chair and via e-mail)&lt;br /&gt;
CVN Committee decides where/how to take up the issue and makes a decision on the draft prepared by the CVN member/AHS representative&lt;br /&gt;
CVN member/AHS representative follows up on issue (eg sends letter, submission, media release)&lt;br /&gt;
CVN member/AHS representative prepares a report for the CVN Newsletter (good points to be picked up as well as issues or problems)&lt;br /&gt;
Develop relationships via CanAssist and TCCN Regional Networks to develop local partnerships for media work.&lt;br /&gt;
Develop a plan for CVN to engage people from rural areas As part of the plan, explore the option of developing partnerships with other groups active in rural areas eg. CWA , Red Cross etc.&lt;br /&gt;
Raise the profile of CVN in the media&lt;br /&gt;
Seek out opportunities for CVN to be visible in the media, including responding to media inquiries. All state/national media inquiries to be handled by the Chairperson with input from people with expertise on the topic&lt;br /&gt;
Local media inquiries and releases to be handled by regional people involved in CVN (eg consumer representatives on AHS), after approval of Chairperson/CVN Committee as appropriate&lt;br /&gt;
Work in partnership with TCCN to develop opportunities for supporting or being part of the media releases of TCCN and TCCA.&lt;br /&gt;
&lt;br /&gt;
4.	Ensure ongoing liaison between CVN 	and TCCN and discussion on key 	issues of concern to CVN&lt;br /&gt;
&lt;br /&gt;
5.	Improved dissemination of Information 	within CVN&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Review the newsletter as the main communication tool within CVN&lt;br /&gt;
Explore other options for communication with members and dissemination of information&lt;br /&gt;
&lt;br /&gt;
6.	A strong and representative national consumer voice&lt;br /&gt;
More authoritative cancer information:  Cancer Voices continued to advocate for a central cancer organisation to be the source of evidenced based, balanced information about cancer.  This is needed not only by people affected by, or worried about cancer, but also by the media, so often the source of alarming and illusory reports.  In 2004 we engaged The Cancer Council Australia, the Cancer Strategies Group and the National Cancer Control Initiative regarding responsibility.  The advent of Cancer Australia may provide the breakthrough.&lt;br /&gt;
&lt;br /&gt;
===PBS and Drug Companies:===&lt;br /&gt;
(i)	CVN participated in a number of workshops regarding the Pharmaceutical Benefits Scheme and how health 	consumers can have their voice heard as the PBAC makes decisions about which new drugs it will subsidise.  We argued for greater transparency and access and are pleased to report that both have improved.&lt;br /&gt;
&lt;br /&gt;
(ii)	The question of relationships with Big Pharma was also taken on board during the year.  To date, CVN policy 	has been to remain completely independent of their financial support to ensure our independence, perceived 	or otherwise.  However, we have willingly taken part in discussions, and given several addresses to industry.&lt;br /&gt;
&lt;br /&gt;
==Implementation of the NSW Cancer Framework:==&lt;br /&gt;
This issue has been a tough one.  Having been closely involved in the development of the Framework, which we see as the best way to improve cancer services across the state, we have been calling for evidence of its implementation.  The advent of the Cancer Institute NSW meant more funds available to the Area Cancer Directors.  Our Area representatives have had a tricky time working out who is actually responsible for what and where, particularly in the absence of central accountability in NSW health.&lt;br /&gt;
A national register of cancer clinical trials:  CVN representatives have taken part in all discussions about the &lt;br /&gt;
devolvement of a national register of clinical trials, which we see as a first step towards improving participation by and information for, patients.  Good progress was made.&lt;br /&gt;
&lt;br /&gt;
==ACTIVITIES==&lt;br /&gt;
&lt;br /&gt;
===Operating Plan:===  &lt;br /&gt;
We scheduled an Operating Plan Workshop in early 2005 so that projects and issues management can be clearly delegated and prioritised.&lt;br /&gt;
&lt;br /&gt;
===Working with Stakeholders:===  &lt;br /&gt;
During the year we consolidated our formal relationship with the Cancer Institute NSW; every CI NSW committee now has at least one Cancer Voices NSW nominated consumer representative to ensure that the broader view of people affected by cancer is heard.  Our reps have worked hard during the CI’s first year of operation and have been complimented on their contribution.&lt;br /&gt;
We continued to work closely with The Cancer Council NSW, especially on those projects which our members identify as being of priority for them.  TCCN has supported us in kind by printing and mailing our quarterly green newsletter, Cancer Voices News, which keeps our members and interested stakeholders up to date with our activities.  We participated in, and presented to, the 2004 Consumer Advocacy Training (CAT) programs developed jointly with TCCN.  There are now around 120 graduates of this excellent course, most of whom became CVN members.&lt;br /&gt;
We learned a lot about how cancer consumers are involved in both the USA – a visit by senior members of the American Cancer Society, and in the UK - a visit by Cancer Voices UK.&lt;br /&gt;
&lt;br /&gt;
===Cancer Consumer Representation:===  &lt;br /&gt;
We farewelled our excellent Consumer Reps Convenor, Carole Sherringham during the year.  We continue to provide (CAT) trained and informed reps in response to the many requests that come to us via our website Consumer Request From.&lt;br /&gt;
Speaking Out:  The Voices are being heard via our Newsletter, the website, invited presentation to conferences and seminars, engagement in discussion and comment on topical issues and publications, and via media interest.  Our newsletter also goes to a list of people we wish to influence or keep in the cancer consumer loop.  Thanks to 2004 editors John Stubbs and Sally Hodgkinson. &lt;br /&gt;
Submissions:  Cancer Voices made submission on all inquiries and stakeholder projects which had most potential impact for people affected by cancer.&lt;br /&gt;
Partnerships:  We continue to build on partnerships whenever possible, as the best means of making difference for our constituents:  these include The Cancer Council NSW, the Cancer Institute NSW, NSW Health, the Area Health Services, NSW politicians, the Directors of Area Cancer Services, the research institutions and the national organisations.&lt;br /&gt;
&lt;br /&gt;
===Management:===  &lt;br /&gt;
Cancer Voices was managed by its Committee which meets, thanks to the good offices of Middleton’s, and in some style, in the CBD every six weeks.  2004 committee members were Max Gardner, Sally Crossing, Jane Cruickshank, John Stubbs, Elisabeth Kochman, Sally Hodgkinson, Norman Thompson, Terry Smith, Melanie Cocks, Sandra O’Sullivan (valued Treasurer) and &lt;br /&gt;
Deborah Harrison (valued Secretary).  At year end, we welcomed David Sandoe in Max’s place and Mary Jefferson representing gynae cancer groups.  We have been a good cross fertilisation of both experience, expertise and ideas.  The Treasurer’s Report, showing a modest but healthy financial situation, will be given separately.&lt;br /&gt;
&lt;br /&gt;
===Membership and Outreach:===  &lt;br /&gt;
Membership grew during 2004 – total full voting members (cancer support and advocacy group) now total 85.  Individual members reached 191, and other associate group members 43.  We began building a database which responds better to our needs.&lt;br /&gt;
&lt;br /&gt;
===The Year Ahead:===&lt;br /&gt;
Things are looking very exciting for 2005.  We can now work through the eight new Area Cancer Services structures at local level.  The Cancer Institute NSW and the Cancer Council NSW have consolidated their respective roles and include us in all activities.  Most exciting is the arrival of serious Commonwealth funding for cancer, a small share of which has been ear-marked to assist cancer support networks.  We look forward to helping the new Cancer Voices around Australia, partly working for a strong basis for a national Cancer Voices Australia.&lt;br /&gt;
Lastly, may I express my own thanks and appreciation to the CVN Committee for helping see us through a successful year, to our members for their input and to our many other partners, friends and supporters.  &lt;br /&gt;
&lt;br /&gt;
Sally Crossing,  Chair							16 Feb 2005&lt;br /&gt;
&lt;br /&gt;
==Cancer Australia==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices Committee Members have been included in the list of interested ‘experts’ who are gathering to discuss the direction and shape of the new national body, Cancer Australia, on 18 March in Canberra. Its broad purpose was outlined in Strengthening Cancer Care, but the devil will be in the detail.&lt;br /&gt;
&lt;br /&gt;
We are seeking adequate cancer consumer representation on the CA board and its committees, to ensure the voices are heard. We hope a revived national cancer consumer group Cancer Voices &lt;br /&gt;
Australia will take on this role in due course. Patient-focussed care initiatives will be our priority. (SC)&lt;br /&gt;
On 9 February, a small working party chaired by Jane Cruickshank (CVN/NCSG) met at The Cancer Council Australia (TCCA).  Other consumers in attendance were Sally Crossing (CVN/BCAG), Don Baumber (CAN/PCFA-SAC) and John Stubbs (CVN/Leukaemia Foundation). &lt;br /&gt;
Unfortunately, Clive Deverall (CVWA/NCSG) and David Sandoe (PCFA-SAC) were unable to attend. &lt;br /&gt;
Representatives of the Department of Health and Ageing, Cancer Services Division (DOHA) were Ian Kemp, Chris Dunstone and Dr Rosemary Knight.  Prof Alan Coates (TCCA), Margaret McJannett (TCCA and COSA) and Gill Batt (TCCN) were also present. &lt;br /&gt;
&lt;br /&gt;
Cancer Voices tabled a proposal for a Three Tier model which reflects connections, or networks, between local, state and national cancer support groups.&lt;br /&gt;
It was agreed that a project officer would be hired, based in TCCA offices in Sydney.  A survey of cancer consumer support models in Australia and overseas will be undertaken in the lead up to a National Cancer Consumer Forum planned for early May 2005. (Ed: We have since heard this has been postponed). The objective is to have a grass roots cancer consumer movement feeding into State based cancer consumer organisations, capped with a national cancer consumer entity.  It is anticipated that this representative body would be a sustainable, respected and valued addition to cancer management and control.&lt;br /&gt;
&lt;br /&gt;
Funding, based on Building Cancer Support Networks, is $2 million over four years, beginning in 2004/05. A second planning meeting with our key stakeholders and cancer agencies from around Australia took place on March 9th. There will be an update of progress in our next newsletter.   Anyone who wishes to be added to the list of invitees to the National Cancer Consumer Forum should email Jane Cruickshank at [mailto: jane_cruickshank@yahoo.com jane_cruickshank@yahoo.com]  (JC) Editor’s note:  On 26 February, the Commonwealth placed an advertisement calling for Funding Applications from bowel, lung and ovarian support groups – see page 6 It omits the word “networks”, a strong focus of the policy, which we find confusing. (SC)&lt;br /&gt;
&lt;br /&gt;
==CANCER SUPPORT GROUPS GRANTS PROGRAM==&lt;br /&gt;
&lt;br /&gt;
===Call for Funding Applications===&lt;br /&gt;
The Australian Government, Department of Health and Ageing is inviting interested organisations to apply for funding under the Cancer Support Groups Grants Program. &lt;br /&gt;
The Cancer Support Groups Grants Program forms part of the Strengthening Cancer Care package which was announced during the 2004 Election.  The Strengthening Cancer Care package outlined a range of initiatives encompassing prevention, treatment, research and support for patients and cancer professionals.&lt;br /&gt;
The Cancer Support Groups Grants Program aims to help reduce the burden of individuals living with cancer through the provision of small seeding grants to community organisations to aid in the development of cancer consumer support groups.  This funding will contribute to salary and administration expenses.  Priority in the first instance will be given to support groups that focus in the areas of bowel, lung and ovarian cancer. Applications (on the appropriate application form) are sought from incorporated community groups which can demonstrate an ability to:&lt;br /&gt;
Operate a cancer consumer support group;&lt;br /&gt;
Establish and sustain partnerships with cancer consumers across states, territories or regional areas of Australia and maintain appropriate accounting mechanisms to manage financial resources.&lt;br /&gt;
An upper limit of $90,000 plus GST (per grant) has been set for these grants. Selection will be based on meeting the selection criteria, the quality of the proposals, and the capacity of the applicants to undertake the activities proposed. Innovative projects are encouraged.&lt;br /&gt;
&lt;br /&gt;
Funding for all projects will be non-recurrent. Applications close at 5pm on 11 April 2005. &lt;br /&gt;
No extensions will be granted&lt;br /&gt;
&lt;br /&gt;
To obtain a copy of the application documentation or seek further information please contact the Cancer Support Groups Grants Program officer or telephone 1800 020 103 or (02) 289 4286 or email: [mailto:cancer@health.gov.au cancer@health.gov.au]&lt;br /&gt;
&lt;br /&gt;
==What’s Happening Nationally==&lt;br /&gt;
&lt;br /&gt;
===The Senate Cancer Inquiry===&lt;br /&gt;
Senator Peter Cook has asked that this Inquiry report by 23 June, on the following main matters: &lt;br /&gt;
The delivery of services and options for 	treatment for persons diagnosed with cancer&lt;br /&gt;
(i) the efficacy of a multi-disciplinary approach to cancer treatment,&lt;br /&gt;
&lt;br /&gt;
(ii) the role and desirability of a case manager/ case co-ordinator to assist patients and/or their primary care givers,&lt;br /&gt;
(iii) differing models and best practice for addressing psycho-social factors in patient care,&lt;br /&gt;
(iv) differing models and best practice in delivering services and treatment options to regional Australia and Indigenous Australians&lt;br /&gt;
&lt;br /&gt;
(v) current barriers to implementation of best practice in the above fields&lt;br /&gt;
How less conventional and complementary cancer treatments can be assessed and judged with particular reference to:&lt;br /&gt;
&lt;br /&gt;
(i) the extent to which less conventional and complementary treatments are researched or are supported by research,&lt;br /&gt;
&lt;br /&gt;
(ii) the efficacy of common but less conventional approaches either as primary treatments or as adjuvant/complementary therapies and&lt;br /&gt;
&lt;br /&gt;
(iii) the legitimate role of government in the field of less conventional cancer treatment.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW has made a submission and &lt;br /&gt;
offered to appear at the Senate Committee Hearings (SC). Submissions are due by 18 March. An electronic copy of our submission can be obtained via [mailto:info@cancervoices.org.au info@cancervoices.org.au]&lt;br /&gt;
&lt;br /&gt;
2.	Better link in people from rural and regional areas to CVN and raise the public profile of CVN in rural areas.&lt;br /&gt;
&lt;br /&gt;
==What is Cancer Voices NSW?==&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW is an independent peak advocacy organisation providing a voice for people affected by cancer in NSW. We are interested in improving all aspects of the cancer journey—focusing on detection, treatment, support and research for the benefit of the 30,000 people diagnosed with cancer each year in our state, and the hundreds of thousands  whose lives are affected by our disease. Members belong to cancer advocacy and support groups. &lt;br /&gt;
&lt;br /&gt;
Cancer Voices is an umbrella coalition for their combined interests and activities. We also welcome &lt;br /&gt;
individuals, carers, and interested cancer health &lt;br /&gt;
professionals as associate members&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Each year CANCER VOICES NSW (CVN) sets priority areas for its work, with input from members.  In February 2005, representatives of CVN met to &lt;br /&gt;
review these priorities and develop an Operational Plan for the following 12 months which identifies what we want to achieve over this period and how it will be done.&lt;br /&gt;
&lt;br /&gt;
In developing this plan we wanted to explore how we continue to initiate change and identify the areas that we are going to give priority to in our work, so that we can keep on track in our work. &lt;br /&gt;
&lt;br /&gt;
We also hope to ensure we share the tasks and &lt;br /&gt;
responsibilities and look to how we communicate information about what CVN is doing. In order to focus and progress the work of CVN set out in the attached insert and to continue to build CVN as a strong voice for consumers, we developed a number of strategies that set out how CVN will work across all priority areas. &lt;br /&gt;
&lt;br /&gt;
These strategies are: (please see page 7)&lt;br /&gt;
&lt;br /&gt;
==AN OPERATIONAL PLAN FOR CANCER VOICES NSW==&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
We also prioritised our Priority Areas, to give us an indication of what we felt is most important.  For each of the Priority Areas we then developed our plan which sets out what we want to achieve over the next 12 months, to February 2006, how we are planning to do this and who will be responsible.  A summary of this is provided in the double sided &lt;br /&gt;
insert in this newsletter.&lt;br /&gt;
&lt;br /&gt;
As CVN is a consumer advocacy group we need to be flexible and responsive to new and emerging issues in relation to cancer research, treatment and issues, so of course our plan will not set out all we will focus on. The implementation of our plan needs to be flexible to allow us to be responsive and react to issues, as well as being proactive in a planned way in our priority areas.&lt;br /&gt;
If you are interested in working with others involved in CVN in any of the priority areas please contact Sally Crossing on 02 9436 1755 or email her at [mailto:crossings@bigpond.com crossings@bigpond.com] .&lt;br /&gt;
A copy of a summary of the CVN Operational Plan is provided to NSW members as an insert to this Newsletter.  A copy of the full version of the Plan may be obtained by e-mailing Sally Crossing at &lt;br /&gt;
[mailto:crossings@bigpond.com crossings@bigpond.com]or Janet Green at [mailto:janet@oin.bu.aust.com janet@oin.bu.aust.com] Janet Green BCAG NSW&lt;br /&gt;
&lt;br /&gt;
Provide support for the development of Cancer Voices in other states&lt;br /&gt;
Provide input to the development of Cancer Australia as a strong national consumer body&lt;br /&gt;
&lt;br /&gt;
==CANCER VOICES NSW ANNUAL REPORT 2004==&lt;br /&gt;
&lt;br /&gt;
2004 saw Cancer Voices NSW consolidate its role in providing a voice for people affected by cancer in our state.  The year also saw us spread our wings and our links, both international (UK and New Zealand) and within Australia. At home we were delighted by the enthusiastic response from other states and territories towards building their own Cancer Voices.&lt;br /&gt;
&lt;br /&gt;
In October we lost our dear friend and colleague Max Gardner AM. Max was a founding member of Cancer Voices NSW, and believed strongly in the value of a state level voice for all people affected by cancer. He brought a great deal of experience and wit from his prostate cancer activities, both of which were invaluable to us.&lt;br /&gt;
&lt;br /&gt;
===Issues for Advocacy===&lt;br /&gt;
Support for Support Groups.  A number of our priority issues in this important area were addresses by the Cancer Council NSW during 2004. The results of a major TCCN sponsored study have underpinned the value of these efforts.&lt;br /&gt;
&lt;br /&gt;
===IPTAAS:===&lt;br /&gt;
Together with CVN member CanAssist, we undertook a campaign to persuade the NSW Government to bring its level of funding for the Isolated Patients Accommodation and Assistance Scheme up to par with the rest of Australia. CVN wrote to both the Minister for Health and Premier; 16,000 people signed our petition; the matter was raised in Parliament twice by the Leader of the Nationals and media coverage was good. To date this relatively small, but important budget item for rural cancer patients has not had the attention it deserves, but we live in hope that 2005 will be the year.&lt;br /&gt;
Spread of Cancer Voices: We have offered the name, which has good credibility throughout the cancer world, in exchange for adoption of our basic objectives. At year end, we had positive responses from Victoria, Western Australia and South Australia.&lt;/div&gt;</summary>
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		<title>Newsletter Issue 30 March 2008</title>
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		<summary type="html">&lt;p&gt;Bobj: Protected &amp;quot;Newsletter Issue 30 March 2008&amp;quot; ([edit=sysop] (indefinite) [move=sysop] (indefinite))&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==Message to Members==&lt;br /&gt;
Welcome to our thirtieth newsletter since Cancer Voices NSW began in October 2000.  Most of these, except the earliest ones, can be found on our website [mailto: www.cancervoices.org.au www.cancervoices.org.au]  and provide the record of what we have tried to do, and what we have done over the last seven years.  We hear of academics writing articles about health consumer advocacy and representation, and wonder if they have ever had the benefit of reading and understanding what organisations like ours actually do, and how we do it!!  The collection of newsletters on our website is a good resource, not only for us, but for anyone interested in this relatively new movement – which allows the voice of people affected by a disease, in our case cancer, to be heard.&lt;br /&gt;
 &lt;br /&gt;
==Welcome to new members and CVN Reps==&lt;br /&gt;
Welcome to new members and CVN Reps, some of whom have joined us via the various training programs – the Consumer Advocacy Training (CAT, an initiative of Cancer Voices NSW, run by The Cancer Council NSW) and the Consumer Research Training program, also run by TCCN – thankyou!.  Graduates of these courses can then become Cancer Voices &lt;br /&gt;
nominees to a range of decision-making &lt;br /&gt;
committees, working parties, and of course our own Area Cancer Services Reps Group.  Do let us know if you are interested in a training course (two days in Sydney and around NSW), and in being active as the eyes, ears and voice of &lt;br /&gt;
people affected by cancer in NSW – aiming &lt;br /&gt;
always to improve the journey for ourselves and the many who follow us.&lt;br /&gt;
Cancer Voices NSW 2008 Committee with the Hon Verity Firth MP at the 2007 CVN NSW AGM&lt;br /&gt;
Held in NSW Parliament House on Wednesday February 27, 2008. L to R Sally Hodgkinson, &lt;br /&gt;
&lt;br /&gt;
* You will be pleased to know that we have reviewed and updated the growing collection of Position Statements, which are posted on the Cancer Voices NSW website – there are now thirteen – see list inside. &lt;br /&gt;
These short statements &lt;br /&gt;
describe the issue, background and Cancer Voices’ recommendations as to what we would like to see done about the issue.  They are &lt;br /&gt;
helpful background for our Reps in their work around the state, and for our stakeholders’ &lt;br /&gt;
understanding of cancer consumer issues.&lt;br /&gt;
&lt;br /&gt;
*Advocacy directions are being shaped by our Area Cancer Services Reps meetings.  In early 2008, the principal issues are access to &lt;br /&gt;
radiotherapy, IPTAAS, supply of medical &lt;br /&gt;
oncologists and access to and quality of palliative care.  These are conveyed to decision-makers at &lt;br /&gt;
various levels.&lt;br /&gt;
&lt;br /&gt;
*Partners: In January I wrote to our two &lt;br /&gt;
principal partners and stakeholders, the Cancer &lt;br /&gt;
Institute NSW and The Cancer Council NSW, with a view to discussing the best way forward in &lt;br /&gt;
areas of mutual interest – which are many!  &lt;br /&gt;
&lt;br /&gt;
John Newsom, Sally Crossing, Hon Verity Firth MP, Elisabeth Kochman, Bev Noble and Peter Brown. Not in picture:	Debbie Smith and Kathy Smith.&lt;br /&gt;
&lt;br /&gt;
Both organisations have responded very positively and we look forward to good outcomes with them during 2008 and beyond.&lt;br /&gt;
&lt;br /&gt;
*Interest in complementary &amp;amp; alternate therapies (CAMs) has regained momentum this year (see inside).  I will visit the Integrative Medicine Institute at the Memorial Sloan-Kettering Cancer Centre in May – and of course the huge MSK Comprehensive Cancer Centre which is probably the ultimate model.&lt;br /&gt;
&lt;br /&gt;
*Acronyms!  We heard the call for some acronym explanation and apologise for being too free with them.  A new year’s resolution is the spell out the full name first with initials in brackets and used thereafter, and to provide a list of the most common ones.  Keep us to this promise!!&lt;br /&gt;
&lt;br /&gt;
*On a national note, while Cancer Voices NSW welcomes the new Government’s emphasis on prevention and screening, we seek reassurance that this does not mean less interest in access and equity for cancer services themselves – all population indicators point to the need for more and better ones!&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Very best wishes for a good year&lt;br /&gt;
SALLY CROSSING AM, Chair&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt; CANCER VOICES NSW - NEWS &amp;lt;/center&amp;gt;==&lt;br /&gt;
&lt;br /&gt;
==Organizational News==&lt;br /&gt;
The Annual General Meeting was held at 5 pm, on 27 February at NSW Parliament House.  We met in the beautifully restored Jubilee Room, the original Parliamentary Library.  We were addressed by the NSW Minister, the Hon Verity Firth MP, who was also our host.  Our second guest speaker was Bruce Hodgkinson, SC, and new Chair of the Cancer Council NSW, who spoke about the directions of our old friend and partner, and future prospects for continued working together.  CVN Patron, the Hon John Fahey AO, cancer survivor and former Premier of NSW, who was overseas on the AGM date, sent a very positive message.&lt;br /&gt;
&lt;br /&gt;
Sally Crossing presented her Annual Report for 2007, which is included in this Newsletter for your information and for the record.  The Treasurer, Sandra O’Sullivan tabled the Financial Statements for the year to 31 December.  These will be forwarded to the NSW Department of Fair Trading, as we are an Incorporated Association. &lt;br /&gt;
&lt;br /&gt;
==The 2008 Committee was elected:==&lt;br /&gt;
Sally Crossing, Sally Hodgkinson, John Newsom, Elisabeth Kochman, Bev Noble, Debbie Smith, Kathy Smith, Peter Brown &lt;br /&gt;
&lt;br /&gt;
===Office bearers:===&lt;br /&gt;
*Chair: Sally Crossing AM&lt;br /&gt;
*Deputy Chairs: Elisabeth Kochman &amp;amp; &lt;br /&gt;
		  Sally Hodgkinson&lt;br /&gt;
*Secretary: Sally Hodgkinson&lt;br /&gt;
*Treasurer: Sandra O’Sullivan (co-opted)&lt;br /&gt;
Its wonderful to welcome keen new Committee members, who are already full of ideas about how we can achieve what our members tell us they want to see happen.   Others are welcome to attend these meetings, particularly if they wish to raise policy or advocacy matters.  &lt;br /&gt;
&lt;br /&gt;
The 2007 Committee met for its last time on 29 January. Next dates are set as 9 April and 27 May.&lt;br /&gt;
&lt;br /&gt;
==Vale Terry Smith==&lt;br /&gt;
The Cancer Voices Committee notes with great sadness, the death in January of Terry Smith.  Terry represented the Greater Southern region for Cancer Voices NSW for several years.  He kept his ear to the ground and reported on local and state level issues, particularly those which impacted upon rural and regional people affected by cancer.  We extend our sympathy to his wife Margaret (also very active in the cause) and his family - thankyou for supporting him to help us, even when he wasn’t well.&lt;br /&gt;
&lt;br /&gt;
==Position Statements==&lt;br /&gt;
The following 13 Position Statements all deal with major issues for the members of Cancer Voices.  They have all been recently updated and&lt;br /&gt;
re-posted on our website. [mailto: www.cancervoices.org.au www.cancervoices.org.au].  Please check them whenever you would like to know what Cancer Voices thinks should happen on the following:  Also do let us know if you or your group would like to add to this list – the strength of these statements relies on their reflecting what you, our members, want to see changed.&lt;br /&gt;
&lt;br /&gt;
*Access to Reliable Information&lt;br /&gt;
*Comprehensive Cancer Centres&lt;br /&gt;
*Access to Radiotherapy Services&lt;br /&gt;
*List of Radiotherapy Sites&lt;br /&gt;
*IPTAAS Reform&lt;br /&gt;
*Multidisciplinary Care&lt;br /&gt;
*Discharge and Survivor Plans &lt;br /&gt;
*Rural and Remote Issues&lt;br /&gt;
*Complementary &amp;amp; Alternate Therapies&lt;br /&gt;
*Financial Challenges&lt;br /&gt;
*Tailored Chemotherapy&lt;br /&gt;
*Consumer Involvement in Research&lt;br /&gt;
*Best Practice Consumer Representation&lt;br /&gt;
(Dying with Dignity &amp;amp; Control)&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==CVN Reps Report==&lt;br /&gt;
A busy start to the year for Cancer Voices 50&lt;br /&gt;
consumer reps who sit on 83 decision-making committees.  We are also  back into reviewing &lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;Newsletter Issue 30 March 2008 &amp;lt;/center&amp;gt;==&lt;br /&gt;
Published by Cancer Voices NSW Inc. page &lt;br /&gt;
publications for cancer organisations, especially the Cancer Council NSW, and providing a number of reps who can offer the consumer view for research projects proposals – it’s the time of year when they must be submitted to the NHMRC.&lt;br /&gt;
&lt;br /&gt;
==Lead the Way Conference &amp;amp; Cancer Voices Reps==&lt;br /&gt;
For Cancer Voices members attending this (see notice below) on 6 &amp;amp; 7 May, there will be a &lt;br /&gt;
special CVN Session when we can get together, at the end of the first day.  A good opportunity to discuss the main issues and how best to progress them – face to face.  And perhaps have a pizza together afterwards?  Looking forward to seeing you there!&lt;br /&gt;
&lt;br /&gt;
==Area Cancer Services Report==&lt;br /&gt;
The ACS Representatives group met again by teleconference, on 5 February. We welcome new members Terry O’Malley for SSESIAHS (South Sydney, East Sydney and Illawarra) and Shaen Fraser for H&amp;amp;NE (Hunter &amp;amp; New England). An emerging issue is the number of medical oncologists (MOs) available in each Area Cancer Service – both pubic and private.  Cancer Voices will consider seeking a population based survey to identify which parts of NSW are most lacking in MOs or visiting MOs. This issue was raised by several ACS Reps during our last teleconference.  Radiotherapy waiting times and treatment rates remain a prime cause for concern (see report below), as do palliative care services. &lt;br /&gt;
Palliative Care Advice has been received that there are proposals to demolish the Nioka &lt;br /&gt;
Palliative Care Unit at Tamworth, and to replace Nioka with undesignated palliative care beds in the general wards of a new hospital, which would be attended by undesignated nursing staff. This is completely at odds and is unacceptable) with the existing situation. The Nioka Unit  has been recently refurbished by significant community donation and has designated nursing staff. &lt;br /&gt;
&lt;br /&gt;
We have also been advised that Blue Gum Lodge at Greenwich (accommodation for rural patients &amp;amp; carers attending Royal North Shore  and Mater Hospitals) is likely to close earlier than originally proposed. We will monitor both issues.&lt;br /&gt;
&lt;br /&gt;
We have arranged with the Chair of the Directors of Area Cancer Services, that &lt;br /&gt;
Cancer Voices NSW will have a regular Agenda Item at their meetings, so we can advise them of our ACS Reps reports and work together on the identified gaps. &lt;br /&gt;
&lt;br /&gt;
Elisabeth Kochman gave a presentation to the Clinical Service Advisory Committee of the CI NSW on 20 Feb, highlighting the work and value of our Area Caner Service Program.  She and Sally Crossing participated in this &lt;br /&gt;
Committee’s think tank, contributing Cancer Voices members’ issues. &lt;br /&gt;
&lt;br /&gt;
CVN has written its annual letter to all Directors of Area Cancer Services to reconfirm the names of our nominees to their Area Cancer &lt;br /&gt;
Services Management Groups, and to update them on the role of our ACS program.  If you would like to get in touch with the CVN rep in your Area, just email info@cancervoices.org.au, and we will forward to them. All our Reps are keen to hear from other CVN members, especially if you have an idea or an experience which needs attention.&lt;br /&gt;
&lt;br /&gt;
The Sydney Morning Herald reported (19 Feb) our ongoing concerns about the redevelopment plans for  Royal North Shore Hospital – no &lt;br /&gt;
Comprehensive Cancer Centre in the $720 million plans, with doctors and consumers locked out of &lt;br /&gt;
meaningful consultation....sound like the next Bathurst Hospital debacle ?&lt;br /&gt;
 &lt;br /&gt;
Thanks, as ever to The Cancer Council NSW for underwriting these teleconferences for us. (SC)&lt;br /&gt;
&lt;br /&gt;
== Radiotherapy (RT) Update==&lt;br /&gt;
Important Meeting &amp;amp; Progress:  On 22 December, Cancer Voices, together with two senior radiation oncologists and Dr Andrew Penman, CEO of THE Cancer Council NSW, met with senior staff of the Minister for Cancer, and with Prof Jim Bishop, CEO of the Cancer Institute NSW. Our purpose was to lay out our key concerns in &lt;br /&gt;
relation to the delivery of RT services in NSW.&lt;br /&gt;
A better understanding was reached of the need for some reform in the areas of performance benchmarks to be used, the need for public &lt;br /&gt;
reporting of RT waiting times, consultation on the NSW RT Plan and its publication, and a &lt;br /&gt;
number of short term measures re specific RT treatment units.  We agreed to follow up these positive discussions with the Minster on 31 March. (SC)&lt;br /&gt;
&lt;br /&gt;
==Consumer Involvement in Research Program==&lt;br /&gt;
This year the two Cancer Voices nominees to the Cancer Council’s Cancer Research Committee are John Newsom and Jane Bennett.  In May, Sally Crossing will step back, after serving for six years on this important committee.  It was through representation on the CRC that the now well entrenched and robust Consumer Review process was developed and implemented.  The next CVN consumer initiative is to explore ways of offering cancer research organisations a process for finding out the research priorities of cancer consumers.  The next CRC meeting will consider our proposal that this be taken on board by the Cancer Council.  Sally’s UK visit elicited a number of &lt;br /&gt;
approaches for identifying where people affected by cancer really want to see research dollars spent, although most of these models were &lt;br /&gt;
top-down, rather than bottom-up – the old medical management model extended.  We will aim for the former of course!&lt;br /&gt;
&lt;br /&gt;
Meanwhile, the Research Grants and other research funding process has begun their annual cycle, and Cancer Voices looks forward to &lt;br /&gt;
providing an informed consumer for a fourth year &lt;br /&gt;
running.  This year will be an important one for &lt;br /&gt;
responding to the requests for involvement or review by those cancer research organisations seeking this as part of their development of their proposals for funding.  Researchers are encouraged to seek our advice via the Request Form on our website, and a number have done so to date. (SC)&lt;br /&gt;
&lt;br /&gt;
==Comprehensive Cancer Centres (CCC)==&lt;br /&gt;
A visit to the daddy of them all – the Memorial Sloan-Kettering Cancer Centre in New York. Sally Crossing, Cancer Voices NSW Chair, has taken the opportunity of a few days in New York in May to renew her acquaintance with Prof Barrie Cassileth, and to visit this famous role model CCC.&lt;br /&gt;
&lt;br /&gt;
It is NSW Government policy (Optimising Cancer Care in NSW, 2001 - 03) that there should be at least one CCC in each AHS, and close links where this is not geographically possible).  We are delighted that the Sydney Cancer Centre is to receive $50 million in Commonwealth funding to establish its own CCC.  The redevelopment of the Royal North Shore Hospital is an opportune time for that Cancer Service (NSCC) to have a CCC, but to date the planners have chosen not to implement Government policy.  CVN again brought this situation to the attention of the media in February&lt;br /&gt;
(SMH)&lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;WHAT’S HAPPENING AT STATE LEVEL&amp;lt;/center&amp;gt;==&lt;br /&gt;
&lt;br /&gt;
==LEAD THE WAY CONFERENCE 6 &amp;amp; 7 MAY 2008==&lt;br /&gt;
Many Cancer Voices NSW members attended the inaugural Cancer Council NSW consumer advocacy conference, held in May 2006 – Speak Out! Consumer Advocacy in Action.  The conference was an exciting opportunity to meet other advocates, be inspired by other people’s campaign stories and learn new skills.&lt;br /&gt;
Now it’s all happening again!  This year the conference is called the “Lead the Way” conference and it will take place on the 6th &amp;amp; 7th May at the State Library of NSW.&lt;br /&gt;
  &lt;br /&gt;
Participants will have the chance to:&lt;br /&gt;
*Be inspired, emboldened and enlivened by other advocates who have taken action in their local communities&lt;br /&gt;
*Increase your skills, knowledge and ideas for action&lt;br /&gt;
*Learn through action&lt;br /&gt;
*Hear more about current issues in cancer prevention and cancer control policy&lt;br /&gt;
*Swap campaign tales with advocates from around NSW. For more information email: [mailto: advocacy@nswcc.org.au advocacy@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
==Cancer Council NSW==&lt;br /&gt;
&lt;br /&gt;
===CAT Courses 2008===&lt;br /&gt;
Two Consumer Advocacy Training (CAT) courses have been held this year, in Lismore and Sydney. Cancer Voices made presentations at both - thanks to Carole Sherringham and John Newsom, respectively.  We will advise you of details of next dates in our June Newsletter.  Any queries and expressions of interest to Kylie Williams at The Cancer Council NSW.&lt;br /&gt;
 &lt;br /&gt;
===Take note!===&lt;br /&gt;
The Cancer Council NSW has developed a 2 hour program, Living Well after Cancer, to address the questions and concerns of cancer survivors. Covering a range of topics and led by a cancer survivor, these sessions will take place in many NSW areas between now and June 2008. Call Annie Miller at 9334 1465 or The Cancer Council Helpline at 13 11 20 for more details.&lt;br /&gt;
The Cancer Council NSW has a new service, Cancer Support Online, for connecting cancer patients and carers via an online community. Posting on the discussion forums is as easy as sending an email. You can also create your own page to share details about your cancer journey with others. For more information and to get online [mailto:www.cancersupportonline.org.au www.cancersupportonline.org.au] contact the Cancer Helpline 13 11 20.&lt;br /&gt;
&lt;br /&gt;
===NSW Consumer Forum at COSA Nov 2008===&lt;br /&gt;
The Clinical Oncology Society of Australia (COSA) holds an Annual Scientific Conference each year, and in a different state.  2008 is NSW’s turn.  Cancer Voices NSW has begun discussions about themes, speakers and Cancer Voices role in the Forum, and is excited about the approach Gill Batt, Director of Information &amp;amp; Support TCCN is taking.  A date for your diaries is 18 November 2008. We will report more detailed plans in June and September newsletters&lt;br /&gt;
&lt;br /&gt;
===Complementary &amp;amp; Alternative Medicine (CAM) Day &amp;amp; Conference===&lt;br /&gt;
A day meeting to discuss what research needs to be done to give us all a better understanding about the value of complementary and alternate medicines is being planned, following a decision at  last year’s COSA meeting.  CVN is seeking consumer representation and input on the design and expectation for this day – an excellent next step to bring interested parties together (see our Position Statement on CAMs on [mailto: www.cancervoices.org.au www.cancervoices.org.au]).   The CAMs Direction of Research Day mentioned in relation to COSA will now be held in November, at the Sydney COSA meeting.		&lt;br /&gt;
This follows $9m federal funding of research into CAMs, via the NHMRC, and the establishment of the University of Western Sydney’s Centre for Complementary Medicine Research and the National Institute of Complementary Medicine (Director of both is Professor Alan Bensoussan).&lt;br /&gt;
&lt;br /&gt;
You may remember the big CAMs day which was held jointly by The Cancer Council MSW and Cancer Voices NSW in October 2005.  A number of recommendations flowed from that, and from the 2005 Senate Cancer Inquiry of 2005, several of which are now being implemented.  Cancer Voices will remain actively involved in developments, as this area is one of importance to our members. (SC)&lt;br /&gt;
&lt;br /&gt;
==Cancer Institute NSW==&lt;br /&gt;
===Latest Cancer Statistics:===&lt;br /&gt;
“The Cancer Institute NSW has released Cancer in New South Wales: Incidence, Mortality and Prevalence Report 2005, which is available on its website: [mailto: www.cancerinstitute.org.au www.cancerinstitute.org.au]. This report is the most comprehensive overview about cancer in NSW.It shows that in 2005, more than 221,000 people were living with cancer in NSW or were cured of the disease.Of these cancer survivors, 64% had breast cancer, melanoma, prostate or bowel cancer.&lt;br /&gt;
&lt;br /&gt;
The most common cancers in NSW are prostate, bowel, breast, melanoma and lung.Of these, only lung cancer still has a poor outlook, with one in eight people alive five years after the diagnosis. Lung cancer has now also equalled breast cancer as the most common cause of cancer death in women.In 2005, these two cancers together were responsible for 32% of cancer deaths in women in NSW. Prostate cancer is the most common cancer in NSW and has the largest increase in incidence over recent years.The lifetime risk of prostate cancer for men is now one in five.&lt;br /&gt;
&lt;br /&gt;
Progress in the control and cure of cancer in NSW over the past 35 years has been remarkable.Lung cancer represented 21% of all cancers in 1972, but only 9% in 2005.However, prostate cancer has increased from 12% of all cancers in 1972 to 31% in 2005.Cancers that have been highlighted in this report as an ongoing concern include lung cancer, bowel cancer, brain cancer, oesophageal cancer, stomach cancer and pancreatic cancer. Overall, this report provides a clear look at who is surviving cancer, where great reductions in cancer deaths have been made and areas where substantial work must still be done&lt;br /&gt;
&lt;br /&gt;
===NSW CanNET Update===&lt;br /&gt;
The CanNET program is jointly funded by Cancer Australia and the Cancer Institute NSW.&lt;br /&gt;
It aims “to improve access to quality, clinically &lt;br /&gt;
effective cancer services throughout Australia”&lt;br /&gt;
Key elements are:&lt;br /&gt;
Active consumer involvement&lt;br /&gt;
Active GP involvement&lt;br /&gt;
Formalising links between cancer services&lt;br /&gt;
Enhances communication and data systems &lt;br /&gt;
Continuous quality review and improvement”&lt;br /&gt;
&lt;br /&gt;
In NSW the pilot program involves the Area Health Services of Northern NSW – Northern Sydney / Central Coast (NSCC); Hunter New England (HNE) and North Coast (NC).&lt;br /&gt;
&lt;br /&gt;
The three project officers are &lt;br /&gt;
NSCC:	Philippa Gately		[mailto:pgately@nsccahs.health,gov.au pgately@nsccahs.health,gov.au]		0400 804 058&lt;br /&gt;
HNE:	Joanne Walton		[mailto Joanne.walton@hnehealth.nsw.gov.au Joanne.walton@hnehealth.nsw.gov.au]	0421 162 039&lt;br /&gt;
NC:	Cath Cosgrave		[mailto: Cath.Cosgrave@ncahs.health.nsw.gv.auCath.Cosgrave@ncahs.health.nsw.gv.au]	6656 5750&lt;br /&gt;
&lt;br /&gt;
Cancer Voices has nominated the following consumer representatives, all Area Cancer Services Reps for CVN. to assist the CanNET Project Officers:&lt;br /&gt;
* NSCC:Kathy Smith, Sally Crossing &amp;amp; Bev Noble &lt;br /&gt;
* HNE:	Annette Clement and Shaen Fraser&lt;br /&gt;
* NC:	Carole Sherringham and Dorothy Hays&lt;br /&gt;
An area of particular interest to Cancer Voices NSW and other cancer consumer organisations is the development and implementation of a Cancer Services Directory. We have been lobbying for it to contain the names of all cancer specialists and their multidisciplinary teams in each Area, but so far this has fallen on deaf ears.  We understand that the Directories will only list multidisciplinary teams, which are great – however, this won’t help referrals which must be made by specialists’ name to get a Medicare refund.  Cancer &lt;br /&gt;
consumers have called for directories of named specialists since 2002, a recommendation supported by the Senate Cancer Inquiry of 2005.  A good example is viewable on www.bcagnsw.org.au, CVN member Breast Cancer Action Group NSW’s (with the NSW Breast Cancer Institute) ground-breaking &lt;br /&gt;
Directory of Breast Cancer Specialists.&lt;br /&gt;
&lt;br /&gt;
==What’s Happening at National Level==&lt;br /&gt;
&lt;br /&gt;
===Consumers Health Forum (CHF):===&lt;br /&gt;
CVN member appointed Vice Chair Cancer Voices NSW has been a member of CHF, the peak national organisation for Australian health consumers, since 2001.  The CHF mission is “Australians shaping health”.  Sally Crossing was nominated by Cancer Voices NSW and elected to serve of the board of CHF in 2002.  This year she has been appointed Vice Chair of the organisation.  Sally is helping organise the CHF Summit to be held on 17 October in Old &lt;br /&gt;
Parliament House, Canberra, with a companion publication celebrating CHF’s 21 years of &lt;br /&gt;
representing the needs of Australians health &lt;br /&gt;
consumers.  Sally has been nominated to attend the Australian 2020 Summit.&lt;br /&gt;
&lt;br /&gt;
===Superannuation and Financial Challenges Progress===&lt;br /&gt;
Senator Nick Sherry, Minister for Superannuation and Corporate Law, introduced an amendment to the legislation to allow access to superannuation before 55/60 without tax.  This is retrospective to 1 July 2007, and was proclaimed on 14 February, three days before Christina Fiddimore4 (44) died of her cancer.  Christina, who with the Breast Cancer Action Group NSW, successfully gained the promised legislative change late last year, has left quite a legacy for many other people with terminal illness who wish to access their super.&lt;br /&gt;
&lt;br /&gt;
A Sydney forum was held on 12 March by Cancer Voices Australia and People Living with HIV/AIDS to identify barriers and potential opportunities to address the costs of living with terminal and chronic illness.  It was dedicated to the memory of Christina Fiddimore, about whom Sally Crossing and Rosanna Martinello spoke.&lt;br /&gt;
&lt;br /&gt;
Meanwhile, CVN member John Burrows reports that his claim to access his super had a favourable response from the ATO.  It’s good to hear that the administrative arrangements are working. (See Dec Newsletter for the campaign story)&lt;br /&gt;
&lt;br /&gt;
===Regulation of CAMs products===&lt;br /&gt;
CVN has called for an alliance between health consumer organisations towards better regulation of CAMs products by the Therapeutic Goods Administration (TGA).  We have had talks with the Australian &lt;br /&gt;
Consumers Association (publishers of CHOICE &lt;br /&gt;
Magazine) and the Consumers Health Forum of &lt;br /&gt;
Australia to this end, and will pursue this necessary change with the new Government.&lt;br /&gt;
&lt;br /&gt;
New Commonwealth Health Minister Replies to Cancer Voices NSW wrote to the Hon Nicola Roxon, MP on 5 December 07 and received an encouraging reply.  Our letter was published in the CVN December Newsletter.  We noted the main areas identified by the ALP Election Policy Improving Health and Well-being – a Health System that Delivers, which are of special interest to us, namely:&lt;br /&gt;
Regulation of Complementary Medicine&lt;br /&gt;
Better assessment process for new diagnostic and medical devices (like PET)&lt;br /&gt;
Pharmaceutical Scheme – affordable access to essential medicines&lt;br /&gt;
&lt;br /&gt;
===Affordable Access to Cancer Drugs===&lt;br /&gt;
A CVN member has reported huge problems when trying to access a non-PBS supported drug for his rare form of cancer.  Her friend is responding well to this drug, but at the cost of $3000 per week.  He has private health insurance with MBF, but they will only consider helping if he attends a private hospital with which they have an agreement.  This is not practical due to distance and his poor health.  CVN has been advised to recommend he asks the pharmaceutical company directly, with the support of his medical &lt;br /&gt;
oncologist, for Compassionate Access.&lt;br /&gt;
&lt;br /&gt;
Your stories please:  CVN would like to hear other stories of this kind – they will help us advocate for a better deal for people in this situation.  Preferably send by email to [mailto:info@cancervoices.org.au info@cancervoices.org.au], or to PO Box 5016, Greenwich NSW 2065&lt;br /&gt;
&lt;br /&gt;
===A Health Rights Charter?===&lt;br /&gt;
The Australian Commission on Safety &amp;amp; Quality in Health Care has developed a draft set of Charter &lt;br /&gt;
Principles which are outlined in a Consultation Paper, 22 Jan 2008.  There are a number of similar Charters which have been adopted in Australia, and this is the most recent.&lt;br /&gt;
&lt;br /&gt;
The principles address Access, Respect, Safety, Communication, Information, Participation, Privacy and Redress.  Cancer Voices NSW has contributed its views via the process offered to members of the Consumers Health Forum (of which we are a member). While we broadly support the draft Principles, there are some details which need to be re-thought.  Look at the Commission’s website [mailto:www.safetyandquality.org www.safetyandquality.org] if you want to know more about the proposal. (SC)&lt;br /&gt;
&lt;br /&gt;
===Access to new technologies===&lt;br /&gt;
Bowel and breast cancer secondaries may metastasise to the liver.  New technologies are with us to treat these, but are not yet accessible to public patients, outside clinical trials.  These are SIR –Spheres (Selective Internal Radiation Therapy, $8-10,000 per treatment) and Radiofrequency Catheter Ablation. Other new technologies are Intensity Modulated Radiotherapy (IMRT) which is important for head and neck cancers;  Tomotherapy, Low Dose Brachytherapy for prostate cancer. None are available to public patients and not always to those who are privately insured.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices round Australia should keep a watching brief about the outcomes of trials and treatment access and be ready to call for better access if the &lt;br /&gt;
outcomes are positive.  Let us know if you have had any experience getting these treatments, by email, preferably to [mailto:info@cancervoices.org.au info@cancervoices.org.au].&lt;br /&gt;
&lt;br /&gt;
===IPTAAS Update===&lt;br /&gt;
Cancer Voices WA reports that WA Senator Judith Adams will be “applying pressure” to the Minister for Health, the Hon Nicola Roxon to act on the 16 recommendations of the Senate Report “Highway to health: better Access for rural Regional and Remote patients”.  Cancer Voices NSW will continue to promote implementation of the recommendation with both the NSW Health Minister and Minister Roxon.&lt;br /&gt;
&lt;br /&gt;
===Consumers Involvement in Research Conference, 6-8 March Perth WA===&lt;br /&gt;
Due to our great interest in the CVN initiated project, implemented by the Cancer Council NSW over the last three years, five consumers were funded by the Cancer Council NSW (and the symposium organisers via a $500 travel scholarship each) to attend this Perth &lt;br /&gt;
conference.  They were Cheryl Grant,Crossing (speaking about the project), James Butler, Jane &lt;br /&gt;
Bennett and Jan Mumford. Two other Cancer Voices consumers were funded to attend the symposium with Cancer Australia funds - John Newsom and John Stubbs.   Thankyou Cancer Council NSW!  We will &lt;br /&gt;
report on outcomes in the June newsletter&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices Australia==&lt;br /&gt;
&lt;br /&gt;
With the election of the Rudd Government the landscape of Australia’s health systems are undergoing change. CVA and State CVs will be working to ensure that the interests of people affected by cancer are not overlooked. We will be in contact with Federal and State Ministers and officials, with the Consumers Health Forum and other health bodies where there are areas of common concern.&lt;br /&gt;
&lt;br /&gt;
Already we can detect a shift of emphasis towards heavy spending on prevention of a wide range of critical and chronic diseases. One of the aims of this new focus is seen as reducing demand for expensive treatment services, especially hospitalisation. We need to be vigilant, ensuring that the treatment needs of patients with non-preventable cancers are not overlooked. Similarly, as cancer is said to be a disease of the aging, we need to protect the interests of people who have passed the stage where preventive measures could affect their cancer outcomes. We will be following our concerns through with Ministries and health officials at all levels.&lt;br /&gt;
&lt;br /&gt;
Last year saw a successful campaign, led by CVN member the Breast Cancer Action Group NSW, to allow people with terminal cancer to have non-taxed access to their superannuation funds. Important though this win is, there is still a long way to relieve the financial burdens on people with cancer who are unable to work – an issue first advocated with the Cancer Voices NSW Executive by Rosemary Lee, (see Position Statement on [mailto:www.cancervoices.org.au www.cancervoices.org.au]).  It is a situation that apples to other major illnesses. CVA and People Living with HIV/AIDS – with the support of The Cancer &lt;br /&gt;
Council Australia – have collaborated to organise in Sydney on 12 March a national symposium of peak health and social welfare bodies, financial institutions and trade unions to identify the most pressing issues and to explore the next steps towards amelioration.&lt;br /&gt;
&lt;br /&gt;
==CVN NSW asks about Private Health Insurance “Portability”==&lt;br /&gt;
&lt;br /&gt;
Editor:  Many people with cancer are concerned about “portability” – ie can they ever change to another private health insurer, or must they stay with the one they have?  We asked an independent authority about this, and the following is his reply.  Apart from the old bug-bear of the 12 months waiting period with no pre-existing condition, once you are in you are entitled to change health funds without having to clock up another 12 months pre – existing medical condition free.  This freedom of choice may become important if the fund you belong to does not have an arrangement with the specialist you have chosen – meaning big gap payments.&lt;br /&gt;
&lt;br /&gt;
Private Health Insurers (Insurers) in Australia are required to operate within the framework of the Private Health Insurance Act, most of which &lt;br /&gt;
became effective on 1 April 2007.&lt;br /&gt;
&lt;br /&gt;
The Act and its related Rules incorporate explicit provisions on a person’s right to commence cover and/ or to transfer cover between Insurers &lt;br /&gt;
irrespective of the person’s state of health (where the person is an Australian citizen or a &lt;br /&gt;
permanent resident living in Australia).&lt;br /&gt;
&lt;br /&gt;
===Pre-existing Medical Conditions:===&lt;br /&gt;
For hospital and in-hospital medical treatment, entitlement to cover for a ‘pre-existing medical condition’ commences immediately following completion of twelve months as a policy-holder of an Insurer.  Subject to ongoing payment of premiums, continued coverage (and hence &lt;br /&gt;
continuing entitlement to benefit following &lt;br /&gt;
completion of twelve months as a policy-holder) may not be refused by the Insurer irrespective of any subsequent deterioration of the person’s state of health.&lt;br /&gt;
&lt;br /&gt;
A person insured under an insurance policy has a pre-existing condition if:&lt;br /&gt;
the person has an ailment, illness or &lt;br /&gt;
condition; and&lt;br /&gt;
(b) in the opinion of a medical practitioner &lt;br /&gt;
appointed by the Insurer that issued the policy, the signs or symptoms of that ailment, illness or &lt;br /&gt;
condition existed at any time in the period of 6 months ending on the day on which the person became insured under the policy.&lt;br /&gt;
&lt;br /&gt;
===Portability of Membership between Health Benefits Funds:===&lt;br /&gt;
Subject to premium payments being current and the twelve month prior coverage provision having been satisfied, irrespective of a policy-holder’s state of health, immediate entitlement to cover must be provided by the Insurer to a person transferring coverage from one Insurer to &lt;br /&gt;
another.&lt;br /&gt;
Exceptions to the above:&lt;br /&gt;
As with all insurance policies, exceptions to the above may apply in certain circumstances. For example, if hospital cover initially is effected subject to a daily or annual excess or with an exclusion for certain conditions (eg pregnancy), entitlement to benefit for amounts within the excess or for the excluded conditions commences only after the twelve month coverage rule has been satisfied for that excess or exclusion, whether with the original or another Insurer.&lt;br /&gt;
&lt;br /&gt;
Also, some Insurers apply extended ‘benefit limitation periods’ during which time a lower level of benefit &lt;br /&gt;
applies (most typically) for rehabilitation or elective &lt;br /&gt;
treatment.&lt;br /&gt;
&lt;br /&gt;
Note:  Different rules to those set out above apply for ‘Extras’ insurance which is provided by many Insurers to cover dental, optical, physiotherapy, etc.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Your Questions Answered: Let us know if you would like information about any specific aspects of private health insurance, and we will get the expert’s answers. Send to [mailto:info@bcagnsw.org.au info@bcagnsw.org.au]&lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;Being Proactive about Follow-up &amp;lt;/center&amp;gt;==&lt;br /&gt;
&lt;br /&gt;
As a follow up to the multidisciplinary team meeting I attended (reported in last issue) I had occasion to have an MRI.&lt;br /&gt;
&lt;br /&gt;
After it was completed, I said to the staff member that I wished to talk to the radiologist who was reporting on the MRI. The lady was not &lt;br /&gt;
impressed and enquired “Why?”&lt;br /&gt;
&lt;br /&gt;
My reply was “Because I want to speak to him or her” (It was none of her business why I wanted to speak to the radiologist !) Several of these exchanges ensued, but I just sat there waiting ! Eventually the lady obviously became sick of this – it was getting late and she probably wanted to go home anyway. Obviously irritated, she said “I’ll see if the radiologist will see you.”&lt;br /&gt;
&lt;br /&gt;
After about 10 minutes the radiologist appeared and I spoke to him about the results of the MRI, which were satisfactory.&lt;br /&gt;
&lt;br /&gt;
It is my view that I was entitled to know the results then and there and not have to wait until I saw my oncologist again in about two weeks.&lt;br /&gt;
&lt;br /&gt;
So if you want to know the results of tests (it does ease the stress of not knowing I believe) – start insisting, just be polite, but insistent.&lt;br /&gt;
&lt;br /&gt;
As it is your disease and your body, you are &lt;br /&gt;
entitled to know the results.  Sally Hodgkinson&lt;br /&gt;
&lt;br /&gt;
==Highlights in This Issue==&lt;br /&gt;
&lt;br /&gt;
*AGM Annual Report &amp;amp; &lt;br /&gt;
Addresses by Minister forCancer and Cancer Council  NSW Chair&lt;br /&gt;
*Consumer Reps Report&lt;br /&gt;
*What’s Happening at State and National Levels&lt;br /&gt;
*Private Health Insurance &lt;br /&gt;
*Acronyms&lt;br /&gt;
&lt;br /&gt;
==ANNUAL REPORT 2007==&lt;br /&gt;
I am pleased to present the 2007 Annual Report for Cancer Voices NSW, the peak coalition for NSW cancer support and advocacy groups.  Founded in 2000, our purpose is to collect, and to act on, the needs and interests of people affected by cancer in our state and beyond.  Over 34,000 people are diagnosed with cancer each year in our state, and we estimate that over 100,000 are living with it.   We continue to be directly informed by our members and to focus on the areas of diagnosis, &lt;br /&gt;
information, treatment, research, support and care.  &lt;br /&gt;
&lt;br /&gt;
Major advocacy issues for us in 2006 continued to be the reform of IPTAAS, better access to &lt;br /&gt;
radiotherapy, PET  scans  and palliative care services, mechanisms for consumer involvement in &lt;br /&gt;
research; collaborative research into tailored treatment, rural and regional service problems; an &lt;br /&gt;
on-line cancer clinical trials register; better information and research into complementary and &lt;br /&gt;
alternate therapies; improved referrals to and support for support groups; realisation  of &lt;br /&gt;
comprehensive cancer centres and multidisciplinary care; more information and assistance for &lt;br /&gt;
financial and legal challenges, establishment of similar Cancer Voices in other states, territories and nationally; faster drug approvals process; easy access to reliable information and representation of patients’ needs at Area Health Service level.&lt;br /&gt;
&lt;br /&gt;
The year’s activities and achievements were again reported in our quarterly newsletter, published in March, June, September and December.  The following summarises the highlights.&lt;br /&gt;
&lt;br /&gt;
===Consumer Representation:  Training and doing ===&lt;br /&gt;
By year end, 50 Cancer Voices representatives sat at 83 Decision-making tables.  This is the main way our reps can make sure that the voices of people affected by cancer are heard by the cancer world.  We believe that informed and trained reps will do this job best. The majority of positions are with the Cancer Institute NSW, the Cancer Council NSW, and Cancer Australia and with cancer &lt;br /&gt;
research organisations.&lt;br /&gt;
&lt;br /&gt;
*Training: Three more Consumer Advocacy Training courses, held by The Cancer Council NSW (TCCN) were offered in 2007, and their graduates invited to join Cancer Voices.  A third Consumers Involvement in Research training course was well attended by Cancer Voices members, graduates of which are placed on the increasing number of research teams interested in the consumer view, the principal ones being the TCCN’s Consumer Review panel and the SREP Grants program.&lt;br /&gt;
&lt;br /&gt;
*ACS Program:  During 2007, our Area Cancer Services Reps group met by teleconference every six weeks.  This valuable program, costs of which are underwritten by the Cancer Council,  enable our 16 Reps around NSW to regularly report local issues which help shape our state level advocacy – it also allows the group to share ideas and support each other.  In mid year, we reached an &lt;br /&gt;
agreement with the Cancer Council’s Regional Advocacy Network to work collaboratively where &lt;br /&gt;
interests where mutual, further increasing the range of informed voices in NSW.. &lt;br /&gt;
&lt;br /&gt;
===The Written Word===&lt;br /&gt;
All NSW politicians received a copy of our Issues leaflet to ensure our members’ needs and ideas were known prior to the NSW State Election on 24 March.  It has been a very useful addition for all communications and continues to be so.   Written submissions to inquiries are an important avenue for the “voice”.  During the year we made substantial submissions to the Senate Inquiry into IPTAAS and to Cancer Australia - briefs on consumer representation, and templates for a directory of &lt;br /&gt;
services and treatment plan, to be made available by CanNET.  The quarterly newsletters of 8-12 pages are designed to enable two-way communication on issues and activities with Cancer Voices members and stakeholders. We also made a submission to the Royal North Shore Hospital Inquiry,&lt;br /&gt;
&lt;br /&gt;
===Speaking Out===&lt;br /&gt;
We attended all relevant seminars and made presentations when invited.  These included two &lt;br /&gt;
presentations to a conference at Imperial College, London, one to the James Lind Alliance also in &lt;br /&gt;
London, to the WA Cancer Consumer Forum in Perth. the Sydney Cancer Centre at RPA, the Trans Tasman Oncology Group, Cancer Council training sessions and to a range of research &lt;br /&gt;
organisations.&lt;br /&gt;
&lt;br /&gt;
*Electronic Communications:  [mailto:www.cancervoices.org.au www.cancervoices.org.au] .  The new look website was launched at our AGM on 21 February 2007, but its management has taken some time to be transferred to our Website Manager, Elisabeth Kochman.  It continues to host past copies of the newsletter and &lt;br /&gt;
updateable Position Statements on major current issues, and requests for representatives and for membership can be submitted on line.&lt;br /&gt;
&lt;br /&gt;
*Media Impact:  Cancer Voices annually advises major media outlets of prime interests and responds to media queries about the patient view of a range of issues.  In 2007 the main topics were access to radiotherapy, establishment of comprehensive cancer centres, return to work issues, nutrition and cancer info and IPTAAS reform.  CVN supported member BCAG NSW in its highly successful campaign to gain superannuation for the terminally ill without taxation. &lt;br /&gt;
  &lt;br /&gt;
===Recognition===&lt;br /&gt;
The profile of Cancer Voices continues to rise, due to recognition of our consistency, commitment, independence and firmly “bottom-up” advocacy.  &lt;br /&gt;
&lt;br /&gt;
===Organisational===&lt;br /&gt;
At December 2006, Cancer Voices members numbered 83 cancer support and advocacy groups (voting members), 194 Individuals and 112 Associate and “for information” members.  Our 21 Feb AGM was held at NSW Parliament House, addressed by Jillian Skinner MP, and Prof Jim Bishop, CEO of the Cancer Institute NSW.  As an entirely volunteer organisation our success depends on members, and particularly members of the Executive Committee, to take on organisation, as well as representational, responsibilities.  Special thanks to Sally Hodgkinson who maintains our membership and consumer reps database, formats the newsletters and authors a number of our position Statements.  &lt;br /&gt;
&lt;br /&gt;
===Financial:===&lt;br /&gt;
The Treasurer’s Report will be presented separately.  Expenses were kept to a minimum due to the valuable volunteer work of members, pro bono services, and printing and mailing assistance by The Cancer Council NSW.   Some financial assistance from the Cancer Institute NSW was appreciated as well.  While membership remains free, donations are encouraged.&lt;br /&gt;
 &lt;br /&gt;
The 2007 CVN Executive Committee, numbered 11, meeting every six weeks at the Chifley Tower offices of UBS Investment Bank and reflected a range of member groups, cancers, health conditions and viewpoints.  Members this year were (varying tenures) David Sandoe, Sally Hodgkinson (Hon Secretary), Elisabeth Kochman, John Newsom, John Allen, Barry Forwell, Deborah Harrison, Beverley Noble, Sandra O’Sullivan (co-opted Treasurer) and Sally Crossing.&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt;National Advocacy&lt;br /&gt;
2007 saw the establishment of Cancer voices in all Australian states and territories, except for NT.  As a founding member of Cancer Voices Australia, Cancer Voices NSW nominated (sequentially) representatives to the CVA Governing Committee: these were David Sandoe, Sally Crossing, Elisabeth Kochman and John Newsom.  John was elected Chair of CVA in October.   Cancer Australia began operations and Cancer Voices NSW reps served on all its decision-making Committees including CANnet.&lt;br /&gt;
&lt;br /&gt;
Reflection and thanks&lt;br /&gt;
As we enter our eighth year, I believe we can feel confident that our voice is respected and considered and that we are included in most decision-making which may impact on people affected by cancer.   This is our main purpose.&lt;br /&gt;
&lt;br /&gt;
We welcome the new NSW Minister for Cancer, the Hon Verity Firth MP, who has been willing to meet us, hear our ideas, and who will host and speak at our 27 Feb 2008 Annual General Meeting.  We also thank the Hon John Fahey, previous Premier of NSW and our Patron, who continues to be an influential survivor. &lt;br /&gt;
&lt;br /&gt;
 As Chair, I thank the 2007 Cancer Voices Committee and our band of very effective consumer representatives.  Thanks are also very much due to our stakeholders and partners for their support, encouragement, inclusivity and respect.  As an America presidential hopeful is currently saying – Can we do it?  (Together) Yes, we can!&amp;lt;/center&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==What is Cancer Voices NSW==&lt;br /&gt;
&lt;br /&gt;
*Cancer Voices Nsw is an independent peak advocacy organisation providing  a voice for&lt;br /&gt;
People affected by cancer in NSW. We are interested  in improving all aspects of the cancer journey—focussing on detection, treatment, support and research for the benefit of the 30,000 people diagnosed with cancer each year in our state, and the hundreds of thousands who lives are affected by our disease. Members belong to cancer advocacy and support groups.&lt;br /&gt;
&lt;br /&gt;
*Cancer Voices is an umbrella coalition for their combined interests and activities. We also welcome individuals, carers and interested cancer health professionals as associate&lt;br /&gt;
members.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices is an umbrella coalition for their combined interests and activities. We also welcome individuals&lt;br /&gt;
&lt;br /&gt;
==Address by the Hon Verity Firth MP, Minister for Cancer, to the Cancer Voices NSW AGM, 27 February 2008==&lt;br /&gt;
(Editor: The text below follows the Minister’s very encouraging introductory remarks: we will print her further comments about the state of play re radiotherapy and rural cancer services in NSW in our June Newsletter)&lt;br /&gt;
&lt;br /&gt;
Good evening to everyone, especially Cancer Voices NSW members and Bruce Hodgkinson, Chair of the Cancer Council NSW. &lt;br /&gt;
&lt;br /&gt;
I am delighted to be able to host your Annual General Meeting here in Parliament House this evening and to have the opportunity to acknowledge your outstanding contribution to cancer advocacy over the past year.&lt;br /&gt;
&lt;br /&gt;
As the Minster responsible for Cancer, I rely heavily on groups such as Cancer Voices NSW to ensure that I hear from the people who are directly affected by cancer in our community, their families and friends. &lt;br /&gt;
&lt;br /&gt;
As I have now met with representatives from Cancer Voices NSW on a number of occasions so I am well aware of your advocacy activities, but I was very impressed to read in your Annual Report that during this year your organisation will have had 50 representatives of Cancer Voices sitting at 83 decision-making tables.   It is clear that with this level of activity, your organisation is making a difference in terms of cancer advocacy. &lt;br /&gt;
&lt;br /&gt;
Your organisation also has the enormous benefit of being underpinned by a large establishment of members which clearly assists in the impact you can make in the community. With a network representing around 4,000 people and their families affected by cancer, your efforts to improve all aspects of the cancer journey come from a strong base. &lt;br /&gt;
&lt;br /&gt;
I would also like to acknowledge that your efforts are all undertaken by members in a voluntary capacity, which makes it even more outstanding.&lt;br /&gt;
&lt;br /&gt;
I would like to make a special mention of your involvement in the many committees and oncology groups of the Cancer Institute NSW.  It has been a wonderful experience for me to work with the Cancer Institute which is going from strength to strength as a success story for the NSW Government … and Cancer Voices NSW has been involved with that story since the Cancer Institute’s inception.&lt;br /&gt;
&lt;br /&gt;
It’s wonderful to hear that Cancer Voices now exists in all states and territories aside from the Northern Territory, to give all Australians a voice on a state level.  I’m sure that given your energy and persistence, by the time you get to your next AGM I will be hearing that you have established Cancer Voices in the NT as well. &lt;br /&gt;
&lt;br /&gt;
All of us in this room understand the challenges of the cancer burden.  Cancer causes almost a third of all deaths in Australia and the projections for the next ten years estimate we will see 31% more cancer cases in the next 10 years.&lt;br /&gt;
&lt;br /&gt;
The prevention and treatment of cancer is a priority for the NSW Government and I will speak some more in a minute about some of the latest developments we have initiated in this battle.&lt;br /&gt;
&lt;br /&gt;
We are investing significant funding to improve the provision of cancer services across NSW so that people facing a cancer diagnosis can be reassured that they will be able to receive the care that they need.  &lt;br /&gt;
&lt;br /&gt;
I know that better access to radiotherapy is a major issue for Cancer Voices and I acknowledge that there is a lot more to be done in this area.&lt;br /&gt;
&lt;br /&gt;
To be continued in the June 2008 Newsletter.&lt;br /&gt;
&lt;br /&gt;
==Address by Mr Bruce Hodgkinson SC, Chair of The Cancer Council NSW==&lt;br /&gt;
&lt;br /&gt;
Partnership with Cancer Voices - Seven years young.  &lt;br /&gt;
The Cancer Council of NSW entered into a Memorandum of Understanding with Cancer Voices NSW, signed in 2003.  Cancer Voices NSW has acted as a pathfinder nationally, and it is pleasing to see the establishment of Cancer Voices Australia, with financial support from all the national and state Cancer Councils (34% from NSW).  We continue in NSW to underwrite several of your activities and costs, as well as supporting consumers to attend conferences.&lt;br /&gt;
&lt;br /&gt;
Undoubtedly a signal achievement, championed by Sally Crossing, has been to give consumer voices a direct say in ranking of research grant proposals.  This is one of many ways in which informed consumers have been integrated into our research program, playing a particularly strong role in our new strategic research &lt;br /&gt;
partnership grants.&lt;br /&gt;
&lt;br /&gt;
Consumer input is consistently sought in other areas of the organisation e.g. on Understanding Cancer Publications, and on project committees (e.g. Cost of Cancer Report, and Pancreatic Cancer Support Group Development)  &lt;br /&gt;
&lt;br /&gt;
Cancer Patient Needs In Focus&lt;br /&gt;
The Cancer Council of NSW has improved its response to patient needs by introducing:&lt;br /&gt;
9 new transport services&lt;br /&gt;
30 new publications&lt;br /&gt;
30 support group facilitators&lt;br /&gt;
Home hospice in 5 regions&lt;br /&gt;
4 new patient accommodation units&lt;br /&gt;
Tele-group counselling&lt;br /&gt;
Call-back service&lt;br /&gt;
●    Long term survivor needs studied.&lt;br /&gt;
&lt;br /&gt;
Better Deal from Government&lt;br /&gt;
Whilst there remains a lot more that can be and should be done, it is important to acknowledge that the government has taken significant steps in the following areas:&lt;br /&gt;
Better regional country cancer services&lt;br /&gt;
Better travel and accommodation support&lt;br /&gt;
Expanded radiotherapy&lt;br /&gt;
Radiotherapy workforce development&lt;br /&gt;
Anti-smoking campaign&lt;br /&gt;
Smoke-free pubs and clubs&lt;br /&gt;
More multidisciplinary care&lt;br /&gt;
&lt;br /&gt;
Getting Serious……&lt;br /&gt;
In getting serious about cancer prevention the following has be undertaken:&lt;br /&gt;
Smoke-free public venues&lt;br /&gt;
Tackling smoking in welfare&lt;br /&gt;
Sun protection in childcare&lt;br /&gt;
●    Leading action on childhood obesity&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==Strategic priorities of TCCNSW (April 07)==&lt;br /&gt;
&lt;br /&gt;
The Cancer Council NSW has set for itself the following goals in cancer support:&lt;br /&gt;
*Cancer information and support in every cancer centre&lt;br /&gt;
*Community hubs support groups and service delivery&lt;br /&gt;
*Mobile information and support unit&lt;br /&gt;
*Campaign to engage GP’s in understanding and using support service&lt;br /&gt;
&lt;br /&gt;
Five ongoing and one new area of strategic focus&lt;br /&gt;
&lt;br /&gt;
*Research - $13m in calendar year 2008 (increased from approximately 10 million in calendar year 2007)&lt;br /&gt;
*Services for patients and carers – up from $1.95 in FY2003 to $5.14m in FY 2008, an 262% increase&lt;br /&gt;
*Cancer Awareness and Prevention Advocacy for the cancer cause&lt;br /&gt;
*Fundraising&lt;br /&gt;
*Health care in the Community – a new area of focus with particular emphasis on gatekeeper doctors (GP’s and specialist) engaged in a programme of training GPs to be more aware of available information and support services. &lt;br /&gt;
&lt;br /&gt;
==Conclusion==&lt;br /&gt;
The history of consumer movement in cancer is yet young.   It has been well led by Cancer Voices NSW in this State, and we pay particular respect to the energy and leadership of Sally Crossing who was rightly recognised through the award of an AM for her foundation role in the consumer movement in cancer. &lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW has shown great leadership throughout its history and now has significant influence in the wide ranging cancer debate. As an organisation it is punching well above its weight – of this its office holders and members should rightly be proud.&lt;br /&gt;
&lt;br /&gt;
==THANKS==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW greatly appreciates the kind assistance of the NSW Cancer Council in printing and posting our newsletters.&lt;br /&gt;
In early February CVA attended the Northern Territory launch of CanNET. We were also able to make contact with people who might form a Cancer Voices NT and to identify ways in which we could have greater indigenous input into key CVA activities that could affect them.&lt;br /&gt;
&lt;br /&gt;
The complexities of the NT experience have reminded us that there is still a long way to go before we achieve equitable and holistic solutions to the &lt;br /&gt;
problems of providing treatment for really remote patients, especially indigenous people. We will be working on building alliances to follow the issues through.&lt;br /&gt;
&lt;br /&gt;
As CVA widens it contacts with national clinical research bodies, we receive more and more requests for “consumers” to give advice to their governing bodies and research teams. This builds on the pioneering work done by Cancer Voices NSW with The Cancer Council NSW. John Newsom Chair CVA&lt;br /&gt;
&lt;br /&gt;
===Medicines Australia Briefing===&lt;br /&gt;
&lt;br /&gt;
Medicines Australia (MA) is the industry association for over 40 pharmaceutical companies operating and marketing in Australia. From time to time MA invites consumer groups, together with some company &lt;br /&gt;
representatives to brief them on issues of interest to both cancer patients and pharmaceutical companies.&lt;br /&gt;
&lt;br /&gt;
On 27 November, John Newsom, Peter Brown and Sally Crossing heard about how the 2007 reforms to the Pharmaceutical Benefits Scheme will work — basically bringing down the prices of quite a few drugs and improving access to new ones. Another topic outlined details of how the MA code of Conduct now covers ‘educational events’ which the industry either sponsors, or to which it directly invites doctors who can prescribe their products. Issues around this area have been aired in recent media; transparent reporting as required by the ACCC, is seen as a welcome first step. The reports can be found each March and September on the MA website www.medicinesaustralia.com.au&lt;br /&gt;
&lt;br /&gt;
This was a good opportunity for us to ask a &lt;br /&gt;
number of questions, and to put the broad &lt;br /&gt;
consumer view on issues of mutual interest.&lt;br /&gt;
&lt;br /&gt;
A Joint Policy Conference will be held by Medicines Australia and the Department of Health and Ageing on 25-27 November. A result of our attendance and advocacy at the first of these two years ago, was the development of the Consumer Impact Process which now occurs prior to Pharmaceutical Benefits Advisory &lt;br /&gt;
Committee Meetings, when decisions are made about which new drugs will be subsidised by the PBS.&lt;br /&gt;
&lt;br /&gt;
===Consumer Medicine Information (CMI)===&lt;br /&gt;
The lack of CMI printouts available from &lt;br /&gt;
Pharmacists dispensing prescription drugs, including cancer drugs, has been a matter of great concern for Cancer Voices and particularly for member group Breast Cancer Action Group NSW. We are delighted to report that the pharmaceutical company Novartis has agreed to the BCAG NSW proposal that the CMI leaflets should be included inside the packaging of &lt;br /&gt;
pharmaceutical company products. This will commence in February 2008. We hope other ‘big Pharma’ will follow this good corporate citizen — there is nothing worse than staring at a prescription drug’s label, most of which is covered by the pharmacy label, with little or no idea of its contents, how and when to take it or its side effects. We believe this is unsafe and definitely not ‘quality use of medicine’. It’s the old mantra — information when and where you need it leads to &lt;br /&gt;
better health outcomes.&lt;br /&gt;
&lt;br /&gt;
*Cancer Australia (CA)&lt;br /&gt;
&lt;br /&gt;
Sally Crossing attended the CA’s Quality and &lt;br /&gt;
Professional Development National Advisory Group meeting on 29 February. The issues of accreditation of services and credentialing of cancer specialists was discussed again. Of most immediate interest is the proposal, initiated by Cancer Voices NSW as a result of its member’s concerns for a Treatment and Care Plan to help cancer patients through their journeys from diagnosis onwards. Our members tell us this is a major missing ingredient in their being able to cope.&lt;br /&gt;
&lt;br /&gt;
Prof. Peter Boyle of the International Agency for Research on Cancer, and a well known cancer epidemiologist, spoke to the meeting about the impact of different cancers around the world—they vary a great deal between resource rich and resource poor countries. Treatment also varies markedly: he mentioned that resource rich countries treat 52% of cancer &lt;br /&gt;
patients with Radiotherapy —  in NSW we only &lt;br /&gt;
manage 34%.&lt;br /&gt;
&lt;br /&gt;
===Consumers Health Forum of Australia News===&lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson has been appointed on the nomination of CVN via the Consumers Health Forum as the consumer representative to RORIC in the Department of Health and Ageing. RORIC is the Radiation Oncology Reform Implementation Committee.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==LIST OF ACRONYMS==&lt;br /&gt;
&lt;br /&gt;
*CVN	Cancer Voices NSW&lt;br /&gt;
*CVA	Cancer Voices Australia&lt;br /&gt;
*CHF	Consumers Health Forum of Australia&lt;br /&gt;
*CI NSW Cancer Institute NSW&lt;br /&gt;
*TCCN	The Cancer Council NSW&lt;br /&gt;
*TCCA	The Cancer Council Australia&lt;br /&gt;
*NSWH	NSW Health Department&lt;br /&gt;
*AHS	Area Health Service (8 in NSW)&lt;br /&gt;
*ACS	Area Cancer Service (one in each AHS)&lt;br /&gt;
*DACS	Directors of Area Cancer Services&lt;br /&gt;
*CA	Cancer Australia&lt;br /&gt;
*PBAC	Pharmaceutical Benefits Advisory Committee&lt;br /&gt;
*PBS	Pharmaceutical Benefits Scheme&lt;br /&gt;
*TGA	Therapeutic Goods Administration&lt;br /&gt;
*NHMRC National Health &amp;amp; Medical Research Council&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Hope this helps your travels around the cancer maze: these are the main organisations we relate to, some more than others, but all important in the cancer world.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Contact:&lt;br /&gt;
Cancer Voices NSW&lt;br /&gt;
A voice for People Affected by Cancer&lt;br /&gt;
PO Box 5016&lt;br /&gt;
Greenwich NSW 2065&lt;br /&gt;
Tel/Fax 09436 1755&lt;br /&gt;
Email: info@cancervoices.org.au&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_34,_March_2009</id>
		<title>Newsletter Issue 34, March 2009</title>
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				<updated>2009-12-07T07:32:14Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Protected &amp;quot;Newsletter Issue 34, March 2009&amp;quot; ([edit=sysop] (indefinite) [move=sysop] (indefinite))&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==Message to Members==&lt;br /&gt;
&lt;br /&gt;
2009 has got off to a flying start for Cancer Voices NSW and the interests of people affected by cancer in our state.  A number of our issues and campaigns have borne fruit, or are well and truly in the process of doing so. These include:  with the Cancer Council NSW:  Research Priorities of Cancer Consumers Forum; the &lt;br /&gt;
Pharmacogenomics Research Grant and the Private Health Insurance Improvement Plan; with the Cancer &lt;br /&gt;
Institute – the Consumer Forum held on 26 February; the Cancer Services Directory with CanNET; Cancer &lt;br /&gt;
Registry interest in collecting recurrence statistics; the NSW Auditor-General’s investigation of NSW Health’s management of radiotherapy services in NSW; intense Central Coast advocacy and Petition of 18,500 signatures for public radiotherapy facilities; and a number of good things at national level (see inside). As well as this, our Consumer Reps Program grows monthly, ensuring that the voices are heard wherever decisions about us are being made.&lt;br /&gt;
&lt;br /&gt;
These positive steps, in response to Cancer Voices identified needs, make it all seem worth while!  So &lt;br /&gt;
encouraged, and with your much valued support, we launch forth on the next exciting 12 months. &lt;br /&gt;
&lt;br /&gt;
In this newsletter you will find the Annual Report for 2008, and the usual reports under the headings of Cancer Voices NSW Action; What’s Happening at State Level, What’s Happening at National Level, and other items and articles we think you will find interesting.&lt;br /&gt;
&lt;br /&gt;
With Cancer Voices NSW Newsletter No 34, we think its time to ask again for your feedback about our coverage.  We have aimed to use it as the main vehicle for letting our members and interested others know what we have been doing in the preceding three months.  Importantly, it is also our opportunity to ask you for you views and needs.  And we thank those who do send us their group and individual thoughts and ideas on issues raised.  Please keep doing so, as we rely on this being a two way process, to be sure our efforts are guided by your needs.&lt;br /&gt;
&lt;br /&gt;
If you and/or your support or advocacy group have a particular interest in an issue - whether it’s to do with &lt;br /&gt;
diagnosis, treatment, research, care or support - let us know.  We can put you in touch with interested others, to work up plans for addressing it.  This may first become a draft Position Statement which we can publish here for comment by other Cancer Voices members.  Very democratic and effective!&lt;br /&gt;
&lt;br /&gt;
Thanks as ever to all those who gave their time, commitment and often, passion last year.  They were efforts not wasted, and our success in getting our voices heard is the result. Best wishes to all Sally Crossing AM, Chair&lt;br /&gt;
&lt;br /&gt;
See page 2 for names of those  attending the Cancer Institute Consumer  Forum on 26 February, 2009&lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;Consumer Advocacy Training  - Apply ASAP for April CAT in Sydney!&amp;lt;/center&amp;gt; ==&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt;General Advocacy Training Workshop 17th and 18th April 2009 - Woolloomooloo-&lt;br /&gt;
&lt;br /&gt;
Applications close 17th March (extended date for CVN members – but get in soon!))&lt;br /&gt;
&lt;br /&gt;
Advocacy training for YoungAdults (18-40 yrs of age) 19th and 20th June- Woolloomooloo- Applications close 19th May&lt;br /&gt;
&lt;br /&gt;
To apply: Contact Kelly Williams at [mailto:kwilliams@nswcc.org.au kwilliams@nswcc.org.au]  or Tel 02 9334 1748&amp;lt;/center&amp;gt;&lt;br /&gt;
 &lt;br /&gt;
==Radiotherapy Call – In : March 2009==&lt;br /&gt;
&lt;br /&gt;
As someone with a close connection to cancer, you may be aware of problems accessing radiotherapy treatment, and that delays in accessing radiotherapy can compromise their wellbeing. Poor patient access to radiotherapy has been a &lt;br /&gt;
longstanding concern for Cancer Council NSW &amp;amp; Cancer Voices NSW. The Call In will help provide information about the patient experience of radiotherapy.&lt;br /&gt;
&lt;br /&gt;
Throughout March, Cancer Council is urging those who have had radiotherapy, are currently having radiotherapy, or are waiting for radiotherapy, or their carers to call 13 11 20 and tell their story. These stories will help Cancer Council to advocate for the needs of radiotherapy patients in the future. &lt;br /&gt;
&lt;br /&gt;
The promotion of the Call In is imperative to its success, and we need your help.would be much appreciated if you could promote the call in through your networks.An email flyer can be obtained by emailing [mailto:katies@nswcc.org.au katies@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices NSW Committee News==&lt;br /&gt;
&lt;br /&gt;
===AGM 3 Feb 2009===&lt;br /&gt;
The Annual General Meeting of Cancer Voices NSW Inc was held on 3 February 2009 at the Cancer Institute NSW.  It is our policy to seek to have our AGMs hosted by major stakeholders. Professor Jim Bishop, Chief Cancer Officer and CEO of the Cancer Institute NSW addressed us following the formal business. He noted a number of exciting initiatives being, or soon to be, progressed by the Cancer Institute, and we discussed how Cancer Voices could best participate.&lt;br /&gt;
&lt;br /&gt;
The Annual Report for 2008 is published in this newsletter.  Financial statements are available to all voting member groups on request and have been lodged with the NSW Department of Fair Trading. &lt;br /&gt;
&lt;br /&gt;
The 2009 Office Bearers and Committee were elected as follows:&lt;br /&gt;
*Chair:  Sally Crossing AM&lt;br /&gt;
*Deputy Chairs: (1) Sally Hodgkinson (2) Elisabeth Kochman&lt;br /&gt;
*Treasurer (co-opted) Sandra O’Sullivan&lt;br /&gt;
*Secretary: Sally Hodgkinson&lt;br /&gt;
*Committee Members:  John Newsom, John Conroy, Bev Noble, Peter Brown, Kathy Smith &lt;br /&gt;
*CVA Nominee:  John Newsom&lt;br /&gt;
&lt;br /&gt;
Our team worked very well together throughout 2008 and is most welcome back!  We are always looking for new recruits who would like to help us make more differences for people affected by cancer.  If you are interested, let us know and come along to an Executive Committee meeting as an observer to start with.&lt;br /&gt;
&lt;br /&gt;
===Meetings for 2009 are=== &lt;br /&gt;
March 4; April 22; June 3; July 15; August 26; Oct 7; Nov 18; Dec 16. and are held in the Offices of UBS, Chifley Tower commencing at 4.45pm.&lt;br /&gt;
&lt;br /&gt;
===Meeting of Joint Executives:  Cancer Voices NSW and Cancer Council===&lt;br /&gt;
This took place on 16 December 08.  We discussed a number of areas of mutual interest and decided how each party could best help move these forward. They were:&lt;br /&gt;
*Consumer Involvement in Research&lt;br /&gt;
*Consumer Advocacy Training Courses&lt;br /&gt;
*Consumer Engagement Policy&lt;br /&gt;
*A Treatment and Care / Survivorship  Plan&lt;br /&gt;
*Addressing the Financial Impact of Cancer&lt;br /&gt;
*Engagement with GPs re cancer skills, referrals to support groups&lt;br /&gt;
*Cancer Services Planning&lt;br /&gt;
&lt;br /&gt;
===Website Upgrade===&lt;br /&gt;
We like the look of our present website, but find the workings too sophisticated for us to mange ourselves.  Cancer Voices has contracted with Bob Jansen of Turtle Lane Studio to rebuild our website on the Wikimedia platform, so we can easily update it, add onto it and eventually make it very interactive.  Bob is a CVN member, CVN Consumer Rep and a melanoma survivor, as well as a whizz in this field.  We will of course let you know when the re-build is complete and will continue the existing site until we are all happy with the new one.&lt;br /&gt;
&lt;br /&gt;
==CONSUMER REPS REPORT ==&lt;br /&gt;
Nothing about us without us!&lt;br /&gt;
&lt;br /&gt;
===Update===&lt;br /&gt;
The voices are being heard via 61 CVN consumer reps &lt;br /&gt;
nominated to 128 committees, working parties, and research projects for 53 separate organisations. &lt;br /&gt;
===Training Opportunities ===&lt;br /&gt;
&lt;br /&gt;
====Consumer Advocacy Training 2009====&lt;br /&gt;
General Advocacy Training Workshop 17th and 18th April 2009 - Woolloomooloo- Applications close 17th March (extended date for CVN members – but get in soon!)&lt;br /&gt;
Advocacy training for young(18-40 yrs of age) 19th and 20th June- Woolloomooloo- close 19th May.Advocacy training for Aboriginal people August (date TBA) - Western Sydney.&lt;br /&gt;
&lt;br /&gt;
We do encourage you to do these valuable courses if you are thinking of getting involved.  Its enjoyable, very focused and is a pathway to the joys of advocacy and providing the “voices”.&lt;br /&gt;
&lt;br /&gt;
====Refresher Training Day 6 April====&lt;br /&gt;
Several experienced CVN consumer reps have taken up the opportunity to attend a day long session looking at Effective Advocacy Skills and Strategies, especially lobbying, &lt;br /&gt;
negotiation and media skills.  It is run by the Public Interest Advocacy Centre.  Two places have been sponsored by the Cancer Council NSW and others by the Breast Cancer Action Group NSW – THANKYOU .&lt;br /&gt;
&lt;br /&gt;
====Consumer Forum, Cancer Institute NSW====&lt;br /&gt;
Following a similar training day held in November 2006, with considerable input from CVN, the Cancer Institute offered another to its consumer representatives, both individual and those nominated by Cancer Voices NSW.  This was held on 26 February, postponed from 2 December.  The 20 attendees found it a valuable way to become updated about what is expected of cancer consumer reps, information about the Cancer Institute's activities and the NSW cancer world and. It was a much needed opportunity to meet each other as well.  Sally Crossing spoke on “Consumer Participation – what’s it all about?&amp;quot;, and she and John Newsom were on hand for &lt;br /&gt;
spirited Q &amp;amp; A about working as consumer reps.&lt;br /&gt;
&lt;br /&gt;
====Area Cancer Services Reps Report====&lt;br /&gt;
The first teleconference meeting for 2009 was held on 24 February.  Lots of news to exchange after the break, both from the regions and from the state view point.  We are watching the South East Sydney Illawarra’s Review of their cancer plan, in conjunction with the Cancer Institute and international reviewers – it may provide good processes for other ACS.  Annette Clement (HNE ACS) and James Butler (SW ACS) are working up a proposal for CVN to ask that cancer patients be treated as “Category 2” when they attend Emergency Departments of hospitals –this would ensure attention within 30 minutes. Thanks to James for raising this necessary reform.&lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING AT STATE LEVEL?==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW ACTION&lt;br /&gt;
&lt;br /&gt;
===Radiotherapy===&lt;br /&gt;
The Auditor General’s welcome investigation of NSW Health’s management of radiotherapy services in our state has been visiting the regions and RT facilities.  Orange/ Bathurst, Lismore, Penrith and St George in Sydney.  As part of this process, Cancer Voices ACS Reps and some others have joined Cancer Council hosted local meetings to raise issues with the A-G’s office.  Thanks to those ten or twelve CVN members who have helped put the regional view to this important Inquiry.  It is due to report by mid 2009, and we await the findings with great interest – hoping of course that the sorry situation of RT services in NSW will be exposed to public view.  That will give us, and others, a good basis for pressing the NSW Government to address the lack of adequate public RT facilities for people with cancer in our state.&lt;br /&gt;
&lt;br /&gt;
Two publications, of which Sally Crossing is a co-author are about to come out, outlining a plan for better NSW RT services. &lt;br /&gt;
&lt;br /&gt;
===PUBLIC RT FOR CENTRAL COAST MOVES TWO STEPS CLOSER===&lt;br /&gt;
&lt;br /&gt;
The fight for public radiotherapy facilities for the Central Coast advanced this month with the petition that was run by CVN in conjunction with Belinda Neal MP, Federal Member for Robertson, being tabled on the 10 February, 2009.  This original lodgement contained over 17,000 signatures and shortly a second lodgement in Federal Parliament will bring this figure closer to 18,500.&lt;br /&gt;
&lt;br /&gt;
This is a number we are justly proud of considering the short duration of the petition and the time of year it was conducted.  Thanks to everyone who helped out.&lt;br /&gt;
&lt;br /&gt;
On Friday 20 February, 2009, Marie Andrews MP State Member for Gosford, announced that Premier Rees had provided a “wish list” to the Federal Government’s Health and Hospitals Fund, and on that list was a public R/T unit for the Coast.&lt;br /&gt;
&lt;br /&gt;
18,500 people are hoping Mr. Rees’ gets his wish !&lt;br /&gt;
&lt;br /&gt;
Kathy Smith&lt;br /&gt;
&lt;br /&gt;
===Workforce gaps ===&lt;br /&gt;
(i)  Medical oncologists&lt;br /&gt;
&lt;br /&gt;
Good news on this front as well.  As a result of discussions and correspondence with the Medical Oncology Society of Australia (MOGA), the MOGA Board agreed to fund a survey of its members to ascertain medical oncologist workforce gaps.  MOGA has also taken up our recommendation that it produce a Directory of its members on its website so that referring doctors and patients can see by whom and where medical oncology services are offered.  We congratulate and support MOGA’s taking on both projects – they will ultimately be of great benefit to patients, the medical oncology &lt;br /&gt;
profession and workforce planners.&lt;br /&gt;
&lt;br /&gt;
(ii)  Palliative care teams&lt;br /&gt;
&lt;br /&gt;
More good news – another step forward in our project to identify where the shortages of palliative care are greatest within NSW.  A series of reports regarding workforce gaps for palliative care has at last been made available to us.  These are detailed by each Area Health Service.  Although the data is 2006, it will be very useful as we advocate for improved funding and employment in palliative care – where it is most needed.  If you would like this data for your own Area Health Service, please contact us through [mailto:info@cancervoices.org.au info@cancervoices.org.au].&lt;br /&gt;
&lt;br /&gt;
===Garling Inquiry===&lt;br /&gt;
Sally Crossing and Sally Hodgkinson were invited to meet Deborah Hyland, Director of the Special Service Commission, NSW Health to discuss our views on the Garling Inquiry into NSW Public Hospitals  This followed our submission to the Inquiry made late last year.The 3 March meeting covered aspects raised in our submission and how they would be addressed by Government if the Garling Report is accepted. The Health Minister, John Della Bosca, is due to announce the NSW Government's decision abouta NSW Health Action Plan based on the report this month. Cancer Voices NSW will be advised of opportunities to further consult as this is developed.&lt;br /&gt;
&lt;br /&gt;
A guiding principle is equity of access - music to Cancer Voices NSW ears! Very briefly - the report is very large - recommendationsspecialinterest to us were: further IPTAAS reform, discharge summaries to patients, carers and GPs, an independent Bureau of Health Information which would publish access and availability data about services, multidisciplinary care for all, e-health introduce tion, digital radiology reading services to link remote locations, and greater liaison with GPs.&lt;br /&gt;
&lt;br /&gt;
We also raised the long-standing problems of lack of sufficient radiotherapy services in NSW, that numbers ofoncologists were well down and that palliative care services were patchy and under-funded. These problems were recognised, as was their budgetary significance.&lt;br /&gt;
&lt;br /&gt;
During discussion about the need to give cancer patients a Category 2 status when they use Emergency Departments at public hospitals, meaning attention within 30 minutes, Ms Hyland advised us of the existence of, and plans for, Medical Assessment Units. We will provide a list of where these are located, so if you do find yourself in Emergency and your hospital has such a unit, you can ask to be referred immediately. &lt;br /&gt;
&lt;br /&gt;
The report also recommends community participation in local hospitals. We asked, knowing that NSW is the only remaining Australian state without an independent health consumer network to represent the needs of the consumers of health services, if there might be a change of NSW Health views on this. We understand that a change of government is the most likely catalyst in the foreseeable future.&lt;br /&gt;
&lt;br /&gt;
Visit [mailto:http;//www.healthactionplan.nsw.gov.au www.healthactionplan.nsw.gov.au] for more information about the process.website also enables contributions to be made directly by the public.&lt;br /&gt;
&lt;br /&gt;
Sally Crossing&lt;br /&gt;
&lt;br /&gt;
===Consumer Involvement in Research===&lt;br /&gt;
Good news on two counts here&lt;br /&gt;
&lt;br /&gt;
'''1.	Pharmacogenomics Grant established:'''&lt;br /&gt;
&lt;br /&gt;
Our Pharmacogenomics proposal to the Cancer Council NSW, via their Cancer Research Committee, has borne fruit.  The Research Program Grant in Pharmacogenomics will support research teams in overcoming barriers to the effectiveness of chemotherapy. The Cancer Council will advertise a $300,000 program grant for a collaborative study to progress this kind of research in NSW, to take place in 2010.  You will remember that we have been urging this as a priority over the last couple of years, towards more tailored, or personalised chemotherapy treatment, as well as an excellent aid to more accurate prognoses.&lt;br /&gt;
&lt;br /&gt;
'''2.  Research Priorities:'''  &lt;br /&gt;
&lt;br /&gt;
Our proposal for understanding the research priorities of cancer consumers has also had the green light.  There is to be a Consumer Research Priorities Forum on 14 &lt;br /&gt;
&lt;br /&gt;
May to canvas such priorities.  We have been able to contribute the priorities established by interested Cancer Voices members last year as a starting point, so thanks to all those who contributed to that survey.  A flyer with details will be enclosed in this newsletter – we &lt;br /&gt;
encourage you to attend if you have thought about what research would really benefit people affected by cancer, and the general community &lt;br /&gt;
&lt;br /&gt;
'''3.  Centre for Basic and Translation Research.'''&lt;br /&gt;
&lt;br /&gt;
Cancer Voices is pleased to be formally supporting the application  by the Centenary Institute of Cancer Medicine and Cell Biology to the Education Investment Fund for funds to support the development of the Centre for Basic and Translational Cancer Research.&lt;br /&gt;
&lt;br /&gt;
===Superannuation Mark 2===&lt;br /&gt;
&lt;br /&gt;
This campaign is on hold for CVN while we look for a better resourced organisation to campaign for extension of untaxed access to super for those under 60, who cannot certify that they will die within 12 months.  This is very important as more of us will live with, rather than die of, our cancers for longer periods, but not be able to work. CVN has raised this with the Chronic Illness Alliance.&lt;br /&gt;
&lt;br /&gt;
===A better private health Insurance deal===&lt;br /&gt;
&lt;br /&gt;
Cancer Voices, our pro bono consultant and the Cancer Council met to talk about a partnership to further this project.  The Cancer Council was  very receptive and will work with us on this. The proposal is being further refined for eventual operation in NSW at first – national possibilities are also recognised.&lt;br /&gt;
&lt;br /&gt;
===Website for legal problems===&lt;br /&gt;
&lt;br /&gt;
For information about travel insurance, work, wills and other legal challenges for people with cancer, visit WorkWelfareWills at [http://www.chronicillness.org.au www.chronicillness.org.au]&lt;br /&gt;
&lt;br /&gt;
==The Voices being heard – Round-up==&lt;br /&gt;
===Meeting new Minister for Cancer===&lt;br /&gt;
Cancer Voices met the new Minister assisting the Minister for Health (Cancer), the Hon Jodi McKay, Member for Newcastle, on 28 January.  This was an excellent opportunity to introduce Cancer Voices NSW and our interests to her, as listed in the new Cancer Voices NSW Issues leaflet.  &lt;br /&gt;
&lt;br /&gt;
===Media attention===&lt;br /&gt;
The editors of Crikey/Croaky.com now regularly invite Sally Crossing to comment on issues of interest to people affected by cancer as they arise. This is a fertile relationship as it enables our views to be included in leading public discussion.  It also attracts other media interest, from radio and newspapers.&lt;br /&gt;
&lt;br /&gt;
Sally’s “Dying Well” article, timed to coincide with the 3 Feb Angel Place, Intellligence Squared big debate about the need for euthanasia legislation, was published by Crikey and praised by readers (copies available via&lt;br /&gt;
[mailto:info@cancervoices.org.au info@cancervoices.org.au].  Although it expresses her own view, it also reflected those of the CVN Position Statement, discussed in this newsletter and posted on our website.  The Debate, attended by three CVN Exec. Committee members, found in favour of the proposition by 75%.&lt;br /&gt;
&lt;br /&gt;
===Speaking===&lt;br /&gt;
On 20 Jan 09, the Cancer Council NSW celebrated Prof Afaf Girgis’ twenty years of service, mostly through what we now call CheRP (Centre for Health Research &amp;amp; Psycho-oncology)   Together with Prof Martin Tattersall and Dr Andrew Penman, CEO of the Cancer Council, Sally Crossing was asked to talk about the impact of Afaf’s work on people affected by cancer.  Interestingly, Afaf was one of the first Australians to investigate training programs provided by the National Breast Cancer Coalition in the USA – way back in 1995.  This in turn gave rise to the National Breast Cancer Centres’ Consumer Advocacy Training courses, which brought the first cancer consumers together to think about how we could make a difference for people like ourselves. This is where Cancer Voices came in – lobbying the Cancer Council NSW in 2001 to offer Consumer Advocacy Training based on the NBCC model.  The rest is history !&lt;br /&gt;
&lt;br /&gt;
==Cancer Council NSW==&lt;br /&gt;
&lt;br /&gt;
===Health Strategies Division===&lt;br /&gt;
The work of this Division within the Cancer Council which is of most interest to people affected by cancer relates to their policy and advocacy projects Editor &lt;br /&gt;
&lt;br /&gt;
Our Policy &amp;amp; Advocacy Unit is working tirelessly to secure political support for essential expenditure in the 09/10 NSW State Government Budget.Written for this crucial lead-up to budget discussions in Cabinet, our submission contains seven immediate strategies to improve radiotherapy, colorectal cancer screening, B Positive project and tobacco retail licensing for example. Evidence for systems change was also communicated in our submission to the National Preventive Health Task Force. CVN readers will be eagerly awaiting a position paper on radiotherapy.Its release is imminent.&lt;br /&gt;
&lt;br /&gt;
If you are unable to obtain any of the documents mentioned abovethe CCNSWsite, please feel free to contact Alexia Trikilis on 02 9334 1753 or &lt;br /&gt;
[mailto:alexiat@nswcc.org.au alexiat@nswcc.org.au] to obtain copies..&lt;br /&gt;
&lt;br /&gt;
(Editor:  This Division also runs the Consumer Advocacy Training Courses for Cancer Voices and Regional Advocacy Network representatives, as well as co-ordinating the RANS themselves. CVN has an agreement with the Cancer Council NSW, that wherever possible we work closely with RAN cancer consumers, many of whom are already active for both organisations in slightly different ways.&lt;br /&gt;
&lt;br /&gt;
==Cancer Institute NSW==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW congratulated Professor Jim Bishop AO, Chief Cancer Officer and CEO, Cancer Institute NSW, on his appointment as the new Chief Medical Officer for the Federal Department of Health and Ageing.  We are sad to see him go – but not till the end of March, as the Cancer Institute has made such strides in improving the cancer journey since its establishment in 2003. We look forward to welcoming and working with his replacement in due course.&lt;br /&gt;
&lt;br /&gt;
===CanNET===&lt;br /&gt;
CanNET cancer services directory – a win!&lt;br /&gt;
(Ed:  CVN members will remember that we have advocated persistently for a NSW cancer services directory with names and contact details of service providers, especially cancer specialists.  Although we have not seen the final product, we believe it will go a long way to addressing this well-identified consumer need. In breast cancer this is already available through the Directory at www.bcagnsw.org.au and www.bci.org.au, a consumer initiative.   The plan is to expand the CanNET directory beyond the Northern NSW Cancer Network to all cancer services in our state.  We warmly welcome this initiative, supported by both the Cancer Institute NSW and Cancer Australia. (It’s so good to be heard and even better when it’s implemented!)&lt;br /&gt;
&lt;br /&gt;
From CanNET:  “Northern NSW Cancer Network (CanNET) has been established to improve access to quality, clinically-effective cancer services throughout Australia, particularly for specific population groups that currently have poorer outcomes. It is one of seven demonstration cancer networks being funded by Cancer Australia. In NSW CanNET is also funded by the Cancer Institute NSW. &lt;br /&gt;
&lt;br /&gt;
As a component of the CanNET project a services directory is being developed by all states and territories. Mandatory criteria for inclusion in the services directory were identified and cover specialist cancer services, multidisciplinary care and availability of other general services such as chemotherapy and diagnostic services. &lt;br /&gt;
&lt;br /&gt;
The NSW directory will be web-based and hosted on the Cancer Institute NSW website.  The services directory will allow for the search to be based on the type of cancer and location. The Directory of Services is targeted at GPs, cancer clinicians and consumers and will provide up to date information on the closest and most appropriate MDT for a particular cancer type. The multidisciplinary team listings will include specialist names and a contact number. Other inclusions cover services such as palliative care, accommodation, parking, travel, support groups etc.&lt;br /&gt;
&lt;br /&gt;
The Directory of Services is inclusive of all providers and services across the spectrum of cancer control (private/public; primary/specialist) and will include links to services and teams outside the area of the network where that is necessary for best practice . It is anticipated that the &lt;br /&gt;
Directory will be ready by mid- year.” &lt;br /&gt;
&lt;br /&gt;
===Cancer Institute NSW Standard Cancer Treatments Program: CI-SCaT===&lt;br /&gt;
Invitation to participate in a Consumer Reference Committee&lt;br /&gt;
&lt;br /&gt;
The Cancer Institute NSW Standard Treatments Program &lt;br /&gt;
(CI-SCaT), a single web based repository of standardised, evidence based cancer treatment protocols, is a unique resource that provides health professionals with comprehensive, current and relevant protocols that they can use in their units at no cost to the user.The CI-SCaT website is currently being redeveloped and all information is being reviewed. It is hoped that the new site will provide more clinical functionality at the point of care and that these benefits will ultimately lead to a more streamlined patient journey and, therefore, improved patient outcomes.&lt;br /&gt;
&lt;br /&gt;
The CI-SCaT team would like to invite consumers to provide input into the development and become involved in the review of patient information and resources. Our aim is to:&lt;br /&gt;
* develop resources that can help health professionals to maximise limited teaching time and enable patients to better manage their cancer and cancer treatment and side effects; and &lt;br /&gt;
* complement existing resources e.g. Cancer Council&lt;br /&gt;
	&lt;br /&gt;
For further information please contact Karen Eaton. &lt;br /&gt;
&lt;br /&gt;
Phone(02) 8374 5714 or email [mailto:Karen.Eaton@cancerinstitute..org.au Karen.Eaton@cancerinstitute..org.au]&lt;br /&gt;
&lt;br /&gt;
If you would like to view the current website please go to [http://www.treatment.cancerinstitute.org.au www.treatment.cancerinstitute.org.au]&lt;br /&gt;
&lt;br /&gt;
''(Editor:  CVN met and discussed this proposal with Karen Eaton on 26 Feb.  We will follow up some ideas directly with her.  Meanwhile, do let us know if you would like to be a part of the Consumer Review Team – we believe it will make a big difference.)''&lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING AT NATIONAL LEVEL?==&lt;br /&gt;
&lt;br /&gt;
===Chronic Illness Alliance===&lt;br /&gt;
Cancer Voices NSW decided last year to join the Chronic illness Alliance (CIA), in view of the increasing chronicity (lovely word) of our disease, cancer.  Many more of us are living with, rather than dying of (though we still do that too) our cancer.  Sally Crossing was invited to nominate for the CIA’s 2009 Board and was duly elected by the membership.  She attended the CIA Strategic Planning Day in Melbourne on 30 January.  We see this as a good alliance as many of our interests overlap and certainly link.&lt;br /&gt;
WorkWelfareWills:  The first useful thing is to suggest you visit the CIA website to check up on the facts about access to Centrelink, travel insurance, superannuation, making wills and directives etc.  At the moment some of this info is for Victoria, but the majority comes under federal law. The CIA is keen to expand information to all Australian states and territories, and we are encouraging them to do so.  They are assisted in this project by John Berrill of Maurice Blackburn Cashman, lawyers. Visit WorkWelfareWills at www.chronicillness.org.au&lt;br /&gt;
&lt;br /&gt;
===Prostate Support &amp;amp; Advocacy Committee=== &lt;br /&gt;
The “SAC” of the Prostate Cancer Foundation held its &lt;br /&gt;
national conference in Brisbane late last year and plans &lt;br /&gt;
another in March this year.  One of the outcomes was a decision to revisit the NSW “Chapter” of the many prostate cancer support groups in this state.  Members will also be attending the Cancer Councils’s CAT courses.  We have been in close contact with the SAC ever since our CVN co-founder Max Gardner chaired that group, and have been asked to talk to their meetings from time to time about the best way to further their aims.  This state focus is welcomed by Cancer Voices NSW.  John Conroy, the nominee of the Northern Beaches Prostate Cancer Support Group is a CVN Executive Committee member, so we have a good conduit though which to network..&lt;br /&gt;
Streamlining approval processes&lt;br /&gt;
This has been a particular interest for CVN.  Through experience on the various “health technology assessment&amp;quot; (HTA) committees, and advice from the Health Consumers Forum, we had noted that processes of the three federal agencies – the Therapeutic Goods Administration (TGA), the Medical Services Advisory committee (MSAC) and the Pharmaceutical Advisory committee (PBAC), were often long and uncoordinated.  CVN followed contacts made at the November Joint Medicines Policy Meeting in Canberra (November 08) and were assured that reform was on its way.  We have been advised that the Federal Government is now undertaking a formal review of these processes, with particular focus on the advent of pharmacogenomic tests and targeted drugs.  Very good news for all.&lt;br /&gt;
&lt;br /&gt;
===CMI===&lt;br /&gt;
The TGA will provide all Consumer Medicine Information (CMI) sheets on its website from I July – this means you can check any prescribed drug for almost all you need to know about taking it, and its side effects.  A central repository for this was one of the three prongs of our campaign to make them available to all health consumers.  Our calls were heard!&lt;br /&gt;
&lt;br /&gt;
===NHHRC===&lt;br /&gt;
The National Health &amp;amp; Hospitals Reform Commission has sent us, as a submitting organisation, a copy of their voluminous initial report.  The focus of our response to Crikey has been that the Federal Government should include health consumers in the mix of those deciding on what aspects to implement.&lt;br /&gt;
&lt;br /&gt;
===Cancer Voices Australia===&lt;br /&gt;
In February the National Health Hospitals Reform Commission (NHHRC) released its interim report. It will be making its final report to the Minister for Health and Ageing in June.&lt;br /&gt;
The report is not about cancer and it is not about acute care. In fact, the word “cancer” appears only once in the 116 “Reform Directions”. The one “Reform Direction” that affects us directly should go some way towards pleasing those who have experienced long waits for treatments such as radiotherapy. It reads as follows:&lt;br /&gt;
4.1   We propose development and adoption of national Access Guarantees for planned procedures and national Access Targets for emergency care. For example: a national access guarantee for patients requiring coronary artery surgery or cancer treatment (measured in weeks/days); National Access Guarantees should be developed incorporating clinical, economic and community perspectives through vehicles like citizen juries.&lt;br /&gt;
The report has responded to some think-tank proposals that our health system should refocus on “wellness” rather than be obsessed by “illness”. &lt;br /&gt;
&lt;br /&gt;
The delivery of integrated services is intensively discussed.  Their report  is strong on the enhancement of  primary and community level services.  We cancer patients who frequently traverse the boundary between in-community and advanced hospital services will need to be vigilant to ensure that no current acute services are compromised.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices Australia’s executive will be meeting for two days in May when the reform package will be a major agenda item. Any comments or suggestions can be sent by the end of April to [mailto:john.stubbs@cancer.org.au john.stubbs@cancer.org.au] or [mailto:jnewsom@optusnet.com.au jnewsom@optusnet.com.au].&lt;br /&gt;
&lt;br /&gt;
John Newsom, Chair and CVN NSW Nominee&lt;br /&gt;
&lt;br /&gt;
==Cancer Australia==&lt;br /&gt;
CA has published four booklets about consumer engagement&lt;br /&gt;
and peer  facilitated support groups commissioned through the Health Issues Centre in Melbourne. [http://www.canceraustralia.gov.au www.canceraustralia.gov.au]&lt;br /&gt;
&lt;br /&gt;
===HOT TOPICS===&lt;br /&gt;
* Public health: $10bn cost of cancer&lt;br /&gt;
The Cancer Institute has, for the first time, calculated the human and economic cost of cancer. As the number of cases more than doubles, NSW will face a $10 billion annual bill for health care, lost wages and profits.  The State Government-funded study even puts a figure on the money lost in taxes to Treasury - $24 billion by 2016. Minister Assisting the Minister for Health on Cancer Jodi McKay, said the disease would “double dip” the state. “Cancer not only will increase the cost of health care, but it also will  erode the economy’s ability to pay for health care,” she said. Prostate cancer cases are predicted to increase 52.5% in the next 10 years, followed by breast cancer (39%), colorectal cancer (28%), melanoma (25%) and lung cancer (11%). Daily Telegraph, 4/2/09, p15&lt;br /&gt;
&lt;br /&gt;
==NEW BOOK RECOMMENDATIONS==&lt;br /&gt;
&lt;br /&gt;
*The Patient - One Man’s Journey through the Australian Health Care Systemby Dr Mohamed Khadra &lt;br /&gt;
Publisher: William Heinemann Australia 250pages $34.95 ISBN 978 1 74166 654 0 (pbk) &lt;br /&gt;
&lt;br /&gt;
The Patient needs to be read by every patient, doctor, nurse, health administrator and Health Minister in Australia.  While the Patient is a fictionalised account of a bladder cancer patient, author Mohamed Khadra had thyroid cancer.  The non fiction account of his own time experiencing the Australian Hospital system is woven into the story of &lt;br /&gt;
Johnathon Brewster, the bladder cancer patient.&lt;br /&gt;
Mohamed Khadra is Professor of Urology at Sydney University who has practiced as a surgeon.&lt;br /&gt;
&lt;br /&gt;
To me this book advances the need for patients to be their own advocates, but for people in the Jonathon Brewster situation this is often very difficult, especially if neither they nor their family have any real experience of the medical/hospital system. The attitude of the private specialist to Brewster and other patients left me appalled that someone could treat someone with such callousness, and seemingly such poor surgical techniques, and continue to get away with it. However I recognise private specialists do have to make a living, but this no excuse for his attitude and apparent incompetence.&lt;br /&gt;
&lt;br /&gt;
Nurses by and large do not get a favourable report either, though there were some who demonstrated empathy, with Brewster’s situation. Brewster’s work colleagues and bosses also showed no empathy. &lt;br /&gt;
&lt;br /&gt;
Unfortunately the work life/illness balance is often a &lt;br /&gt;
casualty of a cancer diagnosis. Certainly more could be done/must be done to demystify cancer in the workplace. OK, cancer is neither the flu nor a broken leg, but rejection/avoidance of the cancer patient is intolerable, despite the need for the business to continue to operate profitably. Fear of cancer is a paramount fear in the community, but should it us make less tolerant of our work colleagues who are suffering? The answer is no, but we all need to be less complacent, more empathetic, and sympathetic to our work colleagues, and be willing to give up a bit of our time to at least offer to help, if not the actual patient, then his or her carers who suffer similarly from a diagnosis of cancer.&lt;br /&gt;
&lt;br /&gt;
Khadra’s book is well written, an easy read, and can be read in one sitting, though with an inevitable black ending. One result from reading The Patient for me is to continue to work even harder for the implementation of the principles set out in the Charter of Cancer Consumer Values as produced by Cancer Voices NSW.  Cancer Voices NSW is the peak coalition for cancer support and advocacy groups in NSW. It provides the independent voice of people affected by cancer, working to improve the cancer experience. While CVN &lt;br /&gt;
cannot help individuals specifically, it aims to improve the situation for all by working with other stakeholders like the Cancer Institute NSW, and The Cancer Council NSW. In summary an excellent read.  Sally Hodgkinson&lt;br /&gt;
&lt;br /&gt;
*Positive: Finding life in the midst of cancer&lt;br /&gt;
Sally Collings.  Publisher: Harper Collins 2009&lt;br /&gt;
&lt;br /&gt;
Positive brings together a collection of voices: cancer survivors, carers, partners, parents, siblings.  Together their stories map out the terrain of the upside of cancer, an upside which appears against all expectations, and seemingly, against the odds: the opportunity to draw together (as friends, as a couple, as a family and sometimes as a cancer advocacy group); the torrent of support, love and prayers that are unleashed; the impetus to go deeper and embrace the strength, fears and purpose that lie within each of us.&lt;br /&gt;
&lt;br /&gt;
Another good read for people like us – and it’s based on our own words including mine, which may make me bit biased!  A number of other familiar “cancer voices’ have contributed, including Mohamed Khadra.&lt;br /&gt;
I think it would interest many behavioural psychologists and cancer specialists – unstructured but carefully considered thoughts, untrammelled by the dreaded questionnaires. &lt;br /&gt;
&lt;br /&gt;
Sally Crossing&lt;br /&gt;
&lt;br /&gt;
==Dates for the Diary:==&lt;br /&gt;
* Vulval Awareness Day Sat March 28 2009&lt;br /&gt;
International Gyn Awareness Day 10th September:  Contact Kath Mazzella - Founder/Life MemberInc. [http://www..gain.org.au www..gain.org.au] Gynaecological Awareness Information Network&lt;br /&gt;
&lt;br /&gt;
==Visit by Dr Bill Evans Medical Oncologist from the Ontario Cancer Centre, Canada to NSW==&lt;br /&gt;
&lt;br /&gt;
Dr Bill Evans who is President of the Juravinski Cancer Centre in Hamilton Ontario Canada, visited the Cancer Institute on February 18, 2009 as a part of an international review team established to review the Cancer Plan for the Sydney South East &amp;amp; Illawarra Area Cancer Service.&lt;br /&gt;
&lt;br /&gt;
In addition to his work with SESIAHS Dr Evans gave a very interesting talk to a number of people from the Cancer Institute, NSW Health as well as some Cancer Voices NSW Representatives.&lt;br /&gt;
&lt;br /&gt;
Dr Evans said that Cancer Care Ontario was in some ways like the NSW Cancer Institute. It was an independent government agency with responsibility for:&lt;br /&gt;
&lt;br /&gt;
* Planning provincial cancer services&lt;br /&gt;
* Operating some programs province wide, including screening, prevention and drug funding&lt;br /&gt;
&lt;br /&gt;
Cancer Care Ontario has one big advantage over NSW in that it has a protected budget from the Ministry of Health. In other words its funds cannot be siphoned off into other parts of the health system.&lt;br /&gt;
&lt;br /&gt;
Cancer Care Ontario’s mission is driving quality, &lt;br /&gt;
accountability, and innovative performance.&lt;br /&gt;
&lt;br /&gt;
The Juravinski Cancer Centre at Hamilton sees some 6000 new cancer patients per year. There are 10 linacs on site. It is very much a patient centred cancer centre. For example there are 500 volunteer drivers to bring patients into the centre, a patient lodge etc. A second Cancer Care Centre is being developed.&lt;br /&gt;
&lt;br /&gt;
A major issue with Dr Evans is Indicator Development and Standards and Guidelines. He says “you cannot manage what you cannot measure”. (This has implications for NSW in relation to the Garling Enquiry recommendation of developing a Bureau of Health Information). He says that 80% of patients are to be seen within two weeks for radiotherapy in his Cancer Care Centre. Waiting lists and targets for access to cancer procedures, eg RT, Medical oncology, surgery etc are published monthly. They are publicly reported especially at a Press Conference, which the Minister generally attends, held in April (Cancer Month), and then released to the local press.&lt;br /&gt;
&lt;br /&gt;
The Cancer Quality Council of Ontario includes patient &lt;br /&gt;
representatives. &lt;br /&gt;
&lt;br /&gt;
Dr Evans mentioned that in his view the key success factors were:&lt;br /&gt;
&lt;br /&gt;
* Senior level commitment&lt;br /&gt;
* Data sources and data mining tools&lt;br /&gt;
* Information management systems&lt;br /&gt;
&lt;br /&gt;
Dr Evans also said that the future of Radiotherpay is via higher technology eg. IMRT &amp;amp; IGRT. &lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson&lt;br /&gt;
&lt;br /&gt;
==CVN ANNUAL REPORT 2008==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW has completed its eighth successful year of providing a voice for people affected by cancer in New South Wales.  Since 2000, our purpose has been to collect, and to act on, the needs and interests of people affected by cancer in our state and beyond.  Nearly 40,000 people are diagnosed with cancer each year in our state, and we estimate that over 100,000 are living with it.   Cancer is the greatest cause of death in Australia, so our task is a large and important one.  We continue to be directly informed by our members and to focus on the areas of diagnosis, information, treatment, research, support and care.  &lt;br /&gt;
Major advocacy issues for us in 2008  were, better access to radiotherapy, PET  scans and palliative care services; the further reform of IPTAAS; rural and regional service problems; optimal workforce levels of cancer specialists; better information and research into complementary and alternate therapies; improved referrals to and support for support groups; realisation of comprehensive cancer centres, multidisciplinary care, cancer specialist directories and treatment &amp;amp; care plans for all cancer patients; more information and assistance for financial and legal challenges, improved  drug approvals process – including “orphan” drugs; a better co-ordinated health technology assessment process (HTA); private health insurance packages for cancer,  Access to Superannuation Mark II campaign; directing research towards consumer priorities; collaborative research into tailored treatment,  easy access to reliable information and representation of patients’ needs at Area Health Service level. &lt;br /&gt;
&lt;br /&gt;
===Highlights===&lt;br /&gt;
Considerable progress has been made in most of these areas, through our consumer representatives program and in partnership with other stakeholders.  Highlights were the agreement of the NSW Auditor-General to examine NSW Health’s management and planning of radiotherapy services, the decision by the Cancer Council to fund and encourage Pharmacogenomics research and to mount a Consumer Priorities in Research Day, the development of a consumer friendly website for information about cancer clinical trials, two papers on radiotherapy problems in NSW,  the agreement by the TGA to host a website for all CMIs by June 2009, and a study by MOGA to examine and the shortage of medical oncologists. &lt;br /&gt;
&lt;br /&gt;
The year’s activities and achievements were again reported in our quarterly newsletter, published in March, June, September and December.  The following is a brief summary.&lt;br /&gt;
&lt;br /&gt;
===Consumer Representation: Training and doing=== &lt;br /&gt;
At December 2008, 59 Cancer Voices trained nominees sat at 117 decision-making tables to make sure that the voices of people affected by cancer are heard by the cancer world.  Many of the positions are with the Cancer Institute NSW, the Cancer Council NSW, the Area Cancer Services and cancer research organisations.   We worked closely on projects with the Cancer Council, the Medical Oncology Group of Australia and the Royal College of Pathologists of Australia during the year.  We served at the national level - John Newsom, our nominee to Cancer Voices Australia was elected its Chair.  Sally Crossing became Vice Chair, and for 6 months, Chair of the Consumers Health Forum of Australia. &lt;br /&gt;
&lt;br /&gt;
Four Consumer Advocacy Training courses, held by The Cancer Council NSW (TCCN) in Sydney, Tamworth and Maitland, were offered in 2008, and their graduates invited to join Cancer Voices.  A fourth Consumers Involvement in Research training course was well attended by Cancer Voices members, graduates of which are placed on the increasing number of research teams interested in the consumer view. Cancer Voices reps participated in Consumer Research Review activities for Cancer Australia, Cancer Council NSW and the National Breast Cancer Foundation. A group of Cancer Voices reps who have undertaken consumer research training are involved with the Garvan Institute advising researchers on the development of their projects.&lt;br /&gt;
&lt;br /&gt;
===ACS Program===  &lt;br /&gt;
The Area Cancer Services Reps group met by teleconference every six weeks.  This valuable program enables our 16 Reps around NSW to report local issues which help shape our state level advocacy, informs our reports to the Directors of Area Cancer Services (DACS) and to support each other.  &lt;br /&gt;
&lt;br /&gt;
===The Written Word===&lt;br /&gt;
 We updated and reprinted the Cancer Voices Issues leaflet in November.  This is used with all correspondence and for meetings attended by CVN.   The Charter of Cancer Consumer Values was also reviewed and reprinted for distribution.  Written submissions to inquiries and on request remain an important avenue for the “voice” and several were made during the year, including the Garling Inquiry into NSW Health and the National Health &amp;amp; Hospitals Commission Inquiry.  All Position Statements were updated in February and placed on the website, with four more developed during the year – Best Practice Consumer Participation, Participation in MDC meetings, Dealing with Pharma and Dying with Dignity.   Advice on a number of informational and survey documents was provided to those who requested it. Cancer Voices participated in the Accommodation Review for Rural Cancer patients &amp;amp; Carers undertaken by the NSW Cancer Council. In addition Cancer Voices members have reviewed a number of Cancer Council booklets during 2008.&lt;br /&gt;
&lt;br /&gt;
Some members have become peer-reviewed and published co–authors during 2008.  CVN has provided the consumer input to the Australian Clinical Trials Online website, developed during the year.  The quarterly 8 page newsletters are designed to enable two-way communication on issues and activities with Cancer Voices members and stakeholders.  They were edited by Sally Crossing, formatted by Sally Hodgkinson, proof-read by Elisabeth Kochman, printed and mailed by the Cancer Council NSW and posted on our website.&lt;br /&gt;
 &lt;br /&gt;
===Speaking Out===&lt;br /&gt;
We attended seminars and conferences in our interest areas to keep up to date and put the cancer consumer view.  Presentations were made at a number of these: in NSW, South Australia, Queensland, Canberra, Northern Territory and Western Australia.  A highlight of the year was the pre-COSA Cancer Consumer Forum: Nothing about us without us!, co-hosted by Cancer Voices NSW and the Cancer Council and attended by 80 registrants.  We presented the outcomes of this to a plenary session of the Sydney COSA ASM. &lt;br /&gt;
&lt;br /&gt;
===Electronic Communications [http://www.cancervoices.org.au www.cancervoices.org.au]=== &lt;br /&gt;
The website has been managed on a pro bono basis by Ian Haigh of Moondesign for the last two years, and we thank him.  We are now investigating a method for us to manage it ourselves and make it more interactive, with the help of Dr Bob Jansen, CVN member and IT expert.&lt;br /&gt;
&lt;br /&gt;
===Media Impact===&lt;br /&gt;
Cancer Voices always responds to requests to provide the consumer view on issues as they arise in the media.  Last year the main topics were: access to radiotherapy - especially the excellent job done by Kathy Smith in the Central Coast, Complementary &amp;amp; Alternative Medicines (CAMS), access to  PET scans, access to cancer drugs, planning for cancer centres, cancer screening, ownership of our genes, nutrition and cancer information and IPTAAS reform.  We have regularly commented on topical issues in Crikey.com during the year.&lt;br /&gt;
&lt;br /&gt;
===Organisational===&lt;br /&gt;
 At December 2008, Cancer Voices members numbered  83 cancer support and advocacy groups (voting members), 233 individuals and 133 Associate and “for information” members.  Our Feb 08 AGM was held at NSW Parliament House, addressed by the Hon Verity Firth MP, Minster for Cancer.  As an entirely volunteer organisation our success depends on the efforts of members, consumer representatives and particularly members of the Executive Committee.&lt;br /&gt;
&lt;br /&gt;
===Financial===&lt;br /&gt;
The Treasurer’s Report will be presented separately.  The valuable volunteer work of members, pro bono services, and printing, mailing and teleconference assistance by the Cancer Council NSW helped keep expenses to a minimum.  Some financial assistance from the Cancer Institute NSW was much appreciated.  During the year we gained Income Tax Exemption from the ATO and are have begun to re-explore Gift Deductible Recipient status. &lt;br /&gt;
&lt;br /&gt;
The 2008 CVN Executive Committee, numbered nine, and met every six weeks at the CBD offices of UBS Investment Bank.  It reflected a range of member groups, cancers, health conditions and viewpoints.  Members this year were  Sally Hodgkinson (Hon Secretary), Elisabeth Kochman, John Newsom, Peter Brown, Beverley Noble, Kathy Smith, John Conroy, Sandra O’Sullivan (co-opted Treasurer) and Sally Crossing (Chair).  &lt;br /&gt;
&lt;br /&gt;
===Reflection and thanks===&lt;br /&gt;
2008 was a good year for effective cancer consumer advocacy.  Cancer Voices NSW feels confident that our voice is respected and considered and that we are included in most decision-making which impacts on people affected by cancer.  We welcome the new NSW Minister for Cancer, the Hon Jodi McKay MP, who has been willing to meet us and hear our ideas and issues.  We also thank the Hon John Fahey, previous Premier of NSW and our Patron, who continues to be an influential survivor.&lt;br /&gt;
&lt;br /&gt;
Thanks especially to the 2008 Cancer Voices Executive Committee and our large band of very effective and informed consumer representatives.  Thanks are also very much due to our stakeholders and partners for their support, encouragement, inclusivity and respect.  &lt;br /&gt;
&lt;br /&gt;
SALLY CROSSING AM, Chair&lt;br /&gt;
&lt;br /&gt;
==Cancer Consumer Advocacy a little family history==&lt;br /&gt;
&lt;br /&gt;
Some people have asked us how did this movement come about – below are the steps in chronological order, for the record.  What will we add this year ?&lt;br /&gt;
&lt;br /&gt;
* 1994:  Breast Cancer Action Group (VIC)&lt;br /&gt;
* 1997:  Breast Cancer Action Group NSW 1997&lt;br /&gt;
* 1999:  Breast Cancer Network Australia&lt;br /&gt;
* 2000:  Cancer Voices NSW established: first in Australia&lt;br /&gt;
* 2004:  A vision for a Cancer Voices in each state &amp;amp; territory&lt;br /&gt;
* 2004 CVN approached other Cancer Councils yto get the ball rolling&lt;br /&gt;
* 2005-08 Cancer Voices in ACT, WA, Vic. Tas, SA &amp;amp; Qld&lt;br /&gt;
* International links with Cancer VOICES UK &amp;amp; Cancer VOICES NZ&lt;br /&gt;
* 2005-08 Development of a national level Cancer Voices Australia—launched February 2007.&lt;br /&gt;
&lt;br /&gt;
==THANKS==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW greatly appreciates the kind &lt;br /&gt;
assistance of the Cancer Council NSW in printing &lt;br /&gt;
&amp;amp; posting our newsletters&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_35_June</id>
		<title>Newsletter Issue 35 June</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_35_June"/>
				<updated>2009-12-07T07:31:49Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Protected &amp;quot;Newsletter Issue 35 June&amp;quot; ([edit=sysop] (indefinite) [move=sysop] (indefinite))&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==CVN Committee News==&lt;br /&gt;
Your Executive Committee met on 4 March and 6 May.  Our next meeting is 9 June.  CVN members are welcome to make suggestions for consideration at these meetings.  We have picked up on the concern expressed via the ACS Reps Program and individual members about the poor experiences cancer patients are having when they present at Emergency Department of hospitals.  Your voices have been heard and we are onto it!&lt;br /&gt;
&lt;br /&gt;
We are always keen to meet CVN members who would like to participate in the work of the CVN Committee – the best way is to come to a meeting and see if what we do presses your buttons!&lt;br /&gt;
&lt;br /&gt;
We welcome new Committee member, Sharyn Owen.  &lt;br /&gt;
&lt;br /&gt;
===A cycling Team for CVN?===&lt;br /&gt;
At our March meeting, Grant Chellew spoke to us about a proposal for a Cancer Voices Cycling Team – a subset of the Sydney Cycling Club.  This could be a good awareness raising opportunity and may even add to our limited coffers.  The idea is based on the very successful Cancer Voices SA team which wears a smart Cancer Voices SA jersey, and became prominent during international cyclist and cancer survivor, Lance Armstrong’s recent visit.  Visit the CVSA website www.cancervoicessa.org.au to see a video clip of TV coverage, and the CV cyclists in action (photo page 4).&lt;br /&gt;
&lt;br /&gt;
===Annual Issues Survey &amp;amp; Donations Insert===&lt;br /&gt;
It’s that time of year again.  &lt;br /&gt;
Issues Survey: This newsletter will carry our Annual Survey regarding your issues – this is important to us as it contributes to advocacy on your behalf.  Pleas fill it in next time your Support Group meets, or as individual – extra pages can be attached – the more we hear from you, the better!&lt;br /&gt;
&lt;br /&gt;
*Donations:  It’s also time to ask for donations – the form is on the back of the Issues Survey.   CVN does not ask for membership fees, and does not accept money from the &lt;br /&gt;
pharmaceutical industry.  We manage to operate due to the generosity of our members, the free time and resources given by our Executive Committee and the considerable in kind assistance which the Cancer Council NSW provides.  The Cancer Institute NSW also contributes to some operations expenses, for which we are most grateful.  Anything beyond this means we can do more for people affected by cancer. &lt;br /&gt;
&lt;br /&gt;
===Prostate Cancer Support Groups===&lt;br /&gt;
We are inviting all prostate cancer support groups to swell &lt;br /&gt;
the voices of people affected by cancer, &lt;br /&gt;
particularly as their cancer is now the most diagnosed of them all.  &lt;br /&gt;
&lt;br /&gt;
===Website Update===&lt;br /&gt;
We mentioned our decision to build a new Cancer Voices NSW website on the Wiki Media platform.  The idea is to make it more manageable for us, and more interactive for our members and others.  You can view it, and start engaging in discussion, if you wish.  Each website page is followed by a Discussion Page where you will be able to tell us &lt;br /&gt;
directly about your issues, interests, suggestions, concerns etc.&lt;br /&gt;
&lt;br /&gt;
The new website will continue to offer all our Newsletters, Position Statements, Membership Application Form and&lt;br /&gt;
Request for Consumer Representative Form, as well as our &lt;br /&gt;
leaflets and other info about Cancer Voices NSW including  activities and advocacy.  Our thanks to Bob Jansen, CVN member and principal of Turtle Lane Studios. Bob is &lt;br /&gt;
patiently guiding us towards website independence .&lt;br /&gt;
&lt;br /&gt;
==&lt;br /&gt;
CONSUMER REPS IN ACTION&lt;br /&gt;
“Nothing about us without us!”==&lt;br /&gt;
===Update===&lt;br /&gt;
The voices are being heard via 61 Cancer Voices consumer reps, nominated to 119 committees, working parties and research projects for 28 separate organisations. &lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training===&lt;br /&gt;
Cancer Voices NSW recommends that anyone interested in taking part, speaking up, writing about their ideas or concerns, being a CVN consumer representative – in general joining the action to improve things for people affected by cancer — should sign up for some kind of advocacy training.  2009 is proving to be a very good year for the standard two-day “CAT” (see page 3) and the Research Training courses (27-28 August) with the Cancer Council NSW, an “upskilling” PIAC course and one for  Cancer Institute NSW consumer reps.  Email (mailto: info@cancervoices.org.au info@cancervoices.org.au) if you would like to be put on a waiting list for future courses, or sign up for those mentioned below.&lt;br /&gt;
&lt;br /&gt;
There has been quite a bit of training about in the last few months, and more to come in the second half of the year.  Our thanks as ever to the Cancer Council NSW for continuing to run these essential courses for people who would like to become CVN consumer reps – as well as undertake activities with the Cancer Council more directly.&lt;br /&gt;
&lt;br /&gt;
===Consumers Research Forum, 14 May===&lt;br /&gt;
Thirty consumers, the majority of whom were from Cancer Voices NSW and its member groups, took part in a half day Forum in Sydney on 14 May, hosted by the Cancer Council NSW at Westpac Place.  This was the result of our advocacy with the Cancer Council to seek the broader view on what consumers really want to have researched.  The outcome will inform the Cancer Council and other cancer research funding and developing organisations, by highlighting the kind &lt;br /&gt;
of research topics which people affected by cancer most want to see funded.  Both CVN and BCAG NSW contributed the results of their member surveys as starter points for discussion.  We hosted the five topic tables and reported back at morning’s end.  The outcome will be published in our September newsletter and on the website.&lt;br /&gt;
.  We hope this will become an &lt;br /&gt;
annual event and be emulated in other states as well.&lt;br /&gt;
&lt;br /&gt;
“While a lot of us would have sat back and felt sorry for &lt;br /&gt;
ourselves after being diagnosed, Mr Howe fought a good fight against the disease and used his experience to help &lt;br /&gt;
others that found themselves in a similar situation. Along with his loving wife Elsie, Mr Howe was a rock for local cancer patients in their hours of need and he lobbied politicians &lt;br /&gt;
to provide a better services for patients in the bush.&lt;br /&gt;
In a statement released by Dubbo Base Hospital nursing unit manager Margaret Ross, Mr Howe was described as a&lt;br /&gt;
gentleman and a friend and someone who could be found to give support and information to individual patients.&lt;br /&gt;
&lt;br /&gt;
That sentiment was echoed by local political leaders Greg Matthews, Dawn Fardell and Mark Coulton, who all knew of Mr Howe's tenacity and passion for helping local cancer &lt;br /&gt;
patients.&amp;quot;&lt;br /&gt;
&lt;br /&gt;
I should like to paraphrase a final line in the blog by &lt;br /&gt;
concurring with the view that &amp;quot;not only will Dubbo be a &lt;br /&gt;
poorer place for Don's passing, Cancer Voices NSW will also be poorer. None of us must let his good work fade.”&lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson &lt;br /&gt;
Honorary Secretary Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==RADIOTHERAPY CAMPAIGN UPDATE==&lt;br /&gt;
===Cancer Council NSW Helpline Radiotherapy Call - In ===&lt;br /&gt;
Throughout the month of March, the Cancer Council urged cancer patients and carers to call the Cancer Council NSW Helpline (13 11 20)and share their experience of &lt;br /&gt;
radiotherapy.The information gained will be used to help the Cancer Council to advocate for improving the system as a whole, so that it can better serve the needs of &lt;br /&gt;
radiotherapy patients in the future. The call-in was a success&lt;br /&gt;
with 267 people calling throughout the month. &lt;br /&gt;
A report of the findings will be released later in the year. &lt;br /&gt;
(Note:  Cancer Voices assisted in the promotion of the RT call-in and thanks its members who provided information to the Cancer Council NSW).&lt;br /&gt;
&lt;br /&gt;
===NSW Auditor-General’s Report on Radiotherapy &lt;br /&gt;
Services  ===&lt;br /&gt;
This report is sure to make the headlines and is expected in the second half of June (around 23 June, we understand). It was instigated on the initiative of the Cancer Council and Cancer Voices NSW, both organisations being very concerned for several years about the failure of NSW Health to plan for and fund radiotherapy services where they are needed – now and in the future.  Our efforts were always frustrated by the Department’s refusal to make available either the 2003-2006 State RT Services Plan (eventually viewed in 2008) or the &lt;br /&gt;
current 2007–2010 RT Services Plan.&lt;br /&gt;
&lt;br /&gt;
The NSW Auditor-General has investigated the situation across NSW, interviewing Cancer Voices members and others in the “hot spots” where RT services are either lacking or are not properly funded.  We look forward to welcoming the Report and its recommendations. &lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;Launch of the Radiotherapy Roadmap 20 May, 2009&amp;lt;/center&amp;gt;==&lt;br /&gt;
Cancer Voices took part in the Launch of Improving Radiotherapy –where to from here?  A Roadmap for the NSW Government. This seminal paper was developed by the Cancer Council, with assistance from leading radiation oncologists and Cancer Voices NSW.  It will be available on our new website and that of the Cancer Council. It fills the gap left by the non-release of the NSW Health’s Plan for RT Services in NSW, and shows the way to a statewide RT service which would make it possible for cancer patients to &lt;br /&gt;
get the RT they need. This publication is co-badged by &lt;br /&gt;
Cancer Voices NSW and the Cancer Council. Sally Crossing spoke for CVN’s views, as did Angela Bain from the Central Coast a cancer patient whose access and experience of &lt;br /&gt;
Radiotherapy was not what it should have been. The launch had good media coverage, with the possibility of an &lt;br /&gt;
investigative story to follow.  This is great progress and hopefully will increase the pressure for Government action to improve access to radiotherapy treatment for NSW cancer patients.  &lt;br /&gt;
&lt;br /&gt;
PS. The launch was reported by ABC TV, Channel 9, several &lt;br /&gt;
Radio city &amp;amp; regional stations and at [linkto:www.smh.com.au www.smh.com.au]&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices media release to the media on 20 May:==&lt;br /&gt;
&lt;br /&gt;
===RADIOTHERAPY SERVICES IN NSW – Where are they going?===&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW warmly welcomes the Cancer Council NSW’s new Roadmap for Improving Radiotherapy in NSW, launched today.&lt;br /&gt;
&lt;br /&gt;
“We were thrilled to work with the Cancer Council to produce a ‘map’ to bring NSW cancer services up to standard” said Sally Crossing AM, Chair of Cancer Voices NSW.  “Cancer patients in our state are not able to get the radiotherapy treatment they should have.  Yet radiotherapy is cost &lt;br /&gt;
effective and should be a major part of many cancer &lt;br /&gt;
patients’ treatment”.  &lt;br /&gt;
&lt;br /&gt;
The Roadmap recommends immediate relief solutions as well as longer-term infrastructure and workforce changes.  It &lt;br /&gt;
recognises our state’s gap in planning for cancer treatment, clearly lists the shortages and problems we face AND answers the question “Where to from here?”&lt;br /&gt;
&lt;br /&gt;
NSW Cancer patients demand that the NSW Government &lt;br /&gt;
responds positively and quickly, starting with the coming State Budget.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
===The Voices being heard===&lt;br /&gt;
*Submissions:  Cancer Voices made a submission to the Senate Genetics Inquiry and to the Health Technology Assessment Review (Dept of Health &amp;amp; Ageing), and contributed to that of the Garvan Research Institute.  Also to the &lt;br /&gt;
Consumers Health Forum Strategic Plan.   &lt;br /&gt;
*Speaking:  Cancer Voices reps spoke at the April CAT course, the Consumers Research Forum 14 May, the NSW Division of GPs Annual Conference, the UNSW Graduate &lt;br /&gt;
Policy Studies Program 5 May, &lt;br /&gt;
*Meetings: With the Acting Chief Cancer Officer, NSW, Prof Rob Sanson-Fisher, the Medical Oncology Group of Australia, the Royal College of Pathologists Australasia, Research with Respect (Pat Maddock form USA); Australian Clinical Trials Online; Chronic Illness Alliance; Clinical Trials NSW, Ian &lt;br /&gt;
Gawler Sydney presentation, NSW Opposition Health Think &lt;br /&gt;
Tank; Joint Executives – CC NSW &amp;amp; CVN, various CC NSW and CI NSW working parties.&lt;br /&gt;
*Events:  Farewell to Prof Jim Bishop at CI NSW, Cancer Council NSW Research Awards.&lt;br /&gt;
*Publications:  The report from the CVN – CC NSW Consumer Forum 2008 was published in full in Wongi Yabber Feb 2008.  Wongi Yabber is the newsletter of the Australian Cancer &lt;br /&gt;
Network and is read by most decision-makers in the cancer world.  Our Report summarised the consumer issues &lt;br /&gt;
identified for action by the November 2008 Consumer Forum.&lt;br /&gt;
*Media:  In response to comments around the publication of two major studies on PSA testing, CVN released a media statement.  (see page 8)&lt;br /&gt;
&lt;br /&gt;
CVN reps Sally Crossing, and Kathy Smith made themselves available for media response for the Launch of the Radiotherapy Roadmap on 20 May. &lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING AT STATE LEVEL?==&lt;br /&gt;
===Cancer Council NSW===&lt;br /&gt;
Involving consumers in research&lt;br /&gt;
The Cancer Council NSW reports “The Research Strategy and &lt;br /&gt;
Scientific Development Unit have spent some time in the first quarter meeting with their new researchers for 2009 to discuss the year ahead. Through these meetings Cancer Council NSW has been informing researchers about some of the activities that Cancer Voices NSW and Cancer Council NSW are doing to bring the voice of the consumer to cancer research. &lt;br /&gt;
&lt;br /&gt;
The key message from Cancer Council NSW has been that they value the involvement of consumers in the research grants program and intend to develop the relationship &lt;br /&gt;
between consumers, Cancer Council NSW and researchers over the coming year. &lt;br /&gt;
&lt;br /&gt;
The researchers have all been veryin activities such as the forthcoming Consumer Research Forum, as well as the continuing Consumer Research Training and Consumer Review Panel and are all very supportive of these initiatives.Cancer Pharmacogenomics research was first raised as a priority for Cancer Council NSW by Cancer Voices NSW consumer representatives at the Cancer Research Committee meeting held on 22 November 2006. A Research Program Grant in Cancer Pharmacogenomics was advertised widely. A grant will be awarded for a period of up to 5 years with support of up to $300,000 p.a. and successful applicants will be notified in time for research to commence early in 2010.&lt;br /&gt;
The assessment of the applications will not be until the second half of 2009 and Cancer Council NSW will&lt;br /&gt;
 request consumer participation in this process.”&lt;br /&gt;
&lt;br /&gt;
===Cancer Support Group Network Update  Cancer support groups:===&lt;br /&gt;
&lt;br /&gt;
 A guide to setting up and maintaining a group, has been revised and will be ready for distribution to all 275 support groups in NSW in early June. &lt;br /&gt;
&lt;br /&gt;
Another Cancer Support Group Leader training workshop is planned for Friday 6 November 2009 at Cancer Council &lt;br /&gt;
Woolloomooloo. Information and registration forms will be mailed with the release of the new Guide book.&lt;br /&gt;
&lt;br /&gt;
==Cancer Institute NSW==&lt;br /&gt;
===Professor Jim Bishop===&lt;br /&gt;
Prof Bishop concluded his time as Chief Cancer Officer and CEO at the Cancer Institute NSW at his farewell on 17 April 2009 and has now taken up his new position as Chief Medical Officer in the Federal Department of Health and Ageing. In the interim, Professor Rob Sanson-Fisher from the University of Newcastle will be Acting Chief Cancer Officer while the selection process is underway to find a permanent replacement for Prof Bishop.&lt;br /&gt;
&lt;br /&gt;
===CI-SCaT website===&lt;br /&gt;
The standard cancer treatment website received over 6 million hits in 2008 or over 512,000 per month.  Around 50,000 patient information sheets were downloaded.  A re-build of the IT platform will allow a higher level of reporting.&lt;br /&gt;
&lt;br /&gt;
===Cancer Research===&lt;br /&gt;
A substantive review of the cancer research program has been completed.  In total $110.6 million has been committed to cancer research from the Cancer Institute NSW since this program began. The research program has had a deliberate strategy to support prevention, clinical research, psycho-oncology and cancer control as well as basic cancer biology and provides evidence of substantial investment in people and infrastructure.&lt;br /&gt;
&lt;br /&gt;
===Cancer Information===&lt;br /&gt;
Dr Yequn Chen, previously the Director of Cancer &lt;br /&gt;
Surveillance at the Alberta Cancer Board has joined the Cancer Institute to be director of Cancer Information and &lt;br /&gt;
Registries.  &lt;br /&gt;
&lt;br /&gt;
The Chair in Cancer Epidemiology establishment process is progressing well with the University of Sydney.&lt;br /&gt;
&lt;br /&gt;
The major achievement has been the publication of the Cancer Incidence and Mortality Report 2006.  Other reports recently published or ready for publication include:&lt;br /&gt;
*Cancer Lives at Risk : Cancer 2007 — 2036&lt;br /&gt;
*Liver Cancer in NSW&lt;br /&gt;
*Oesophageal Cancer in NSW&lt;br /&gt;
*Prostate Cancer in NSW&lt;br /&gt;
*Kidney Cancer in NSW&lt;br /&gt;
&lt;br /&gt;
==BreastScreen==&lt;br /&gt;
The new $825,000 central BreastScreen Reading and Radiology Training and Education Centre was opened earlier this year by Minister Jodi McKay MP. The new facility provides &lt;br /&gt;
a superior digital mammography screen reading centre, a &lt;br /&gt;
centralised picture archiving and communications system (PACS) to be integrated with a new information system, and a Radiology Training, Research and Education Centre.&lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING NATIONALLY?==&lt;br /&gt;
===Good News Federal Budget===&lt;br /&gt;
&lt;br /&gt;
The federal Budget had a lot of good news for cancer. For details see Minsiter for Health, Nicola Roxon’s website&lt;br /&gt;
&lt;br /&gt;
The highlights of the Federal budget were as follows:&lt;br /&gt;
*New Sydney Cancer Centre			$100 m&lt;br /&gt;
*Garvan St Vincents				$ 70 m&lt;br /&gt;
*Ten Regional Cancer Centres			$650 m&lt;br /&gt;
*Cancer Drugs (Avastin, Sutent &amp;amp; Herceptin)	$600 m&lt;br /&gt;
*CanNET roll-out				$ 15 m&lt;br /&gt;
*Lung Cancer Care				$ 6.8 m&lt;br /&gt;
&lt;br /&gt;
==Government funds Cancer Genomic Research $27.5m===&lt;br /&gt;
&lt;br /&gt;
ED:  CVN has been waiting for this announcement and warmly welcomes it – with well-founded Pharmacogenomics cancer research in Australia, our access to effective cancer therapies will be speeded up.&lt;br /&gt;
&lt;br /&gt;
“The Australian Government, through the NHMRC, will provide $27.5 million over five years for research into pancreatic and ovarian cancer as its contribution to the International Cancer Genomics Consortium. That will be part of a total funding package of over $40 million.&lt;br /&gt;
&lt;br /&gt;
The Consortium is one of the most ambitious biomedical research efforts –and one of the most exciting international collaborations - since the Human Genome Project. It spans 24 countries, and is expected to deliver significant benefits &lt;br /&gt;
in detecting, preventing and treating many types of cancer. The aim is to understand in detail the changes in DNA that give rise to fifty of the world’s most common cancers. For cancer to occur, individual cells in our body suffer genetic mutations that, usually many years later, result in cancers. The Consortium will seek to work out what the initial events in cells are that lead to cancer. This genomic information will accelerate efforts to develop better ways of diagnosing, treating and preventing cancer.&lt;br /&gt;
&lt;br /&gt;
This is a truly international collaboration, where &lt;br /&gt;
Australia will be sharing research with other participating countries, including Canada, China, India, Singapore, the United Kingdom, and the United States. The partnership that I am announcing today is between the Australian Government through the NHMRC (and we are lucky that Professor Warwick Anderson, NHMRC CEO, sits on the executive of the ICGC), the University of Queensland, the NSW Cancer Council, Silicon Graphics and Applied Biosystems, a division &lt;br /&gt;
of Life Technologies Corporation.&lt;br /&gt;
&lt;br /&gt;
It is an outstanding example of how the Commonwealth and states, non-government agencies and the private sector, can work together to enable Australia to punch above its weight in the international fight against cancer. As a result, our world class researchers at the Institute for Molecular Bioscience here in Brisbane, the Garvan Institute in Sydney, and the Peter MacCallum Cancer Centre in Melbourne, will team&lt;br /&gt;
with collaborators from across the world. This will be &lt;br /&gt;
exciting, groundbreaking research, that promises to bring us significant steps further in understanding, preventing and treating cancer.”&lt;br /&gt;
(Excerpt from a recent Speech by the Hon Nicola Roxon MP, Minister for Health &amp;amp; Ageing)&lt;br /&gt;
&lt;br /&gt;
=== More sense from pathology reports===&lt;br /&gt;
ED: CVN has a long-standing interest in the readability, portability and comprehensiveness of our pathology reports.  We see them as our most important piece of information &lt;br /&gt;
about our own cancer, and encourage all cancer patients to make sure they have a copy in their own records.  CVN fully supports this project with the Royal College of Pathologists Australasia and stakeholders)&lt;br /&gt;
&lt;br /&gt;
In contrast to the US and UK, Australia has no national framework for the development and dissemination of &lt;br /&gt;
structured pathology reporting protocols.The National Round Table (NRT) was established to develop this national &lt;br /&gt;
framework in addition to a number of cancer specific &lt;br /&gt;
Structured Pathology Reporting (SPR) standards. (Sally &lt;br /&gt;
Crossing, for Cancer Voices NSW took part in the recent NRT.&lt;br /&gt;
 &lt;br /&gt;
The project is lead by the Royal College of Pathologists of Australasia (RCPA), the Cancer Institute NSW, and Cancer Australia. Expert, multidisciplinary committees have &lt;br /&gt;
developed five specific cancer-reporting protocols (Colorectal, Lung, Lymphoma, Melanoma and Prostate) and a generic Framework for the Development of SPR Protocols &lt;br /&gt;
&lt;br /&gt;
The aim of the project is to improve the completeness and usability of pathology reports for clinicians, and improve &lt;br /&gt;
decision support for cancer treatment. Other benefits include facilitating reporting skills for trainee or new pathologists and enabling data items to be extracted for electronic health records, clinical information systems, clinical audits, cancer notification and research. &lt;br /&gt;
&lt;br /&gt;
Structured reporting of cancer cases in anatomical pathology and haematology is likely to contribute to better cancer control through improvements in clinical management and treatment planning, cancer notification, registration and aggregated analyses, and research.&lt;br /&gt;
For further information about the project please visit (linkto: www.cancerinstitute.org.au/cancer_inst/profes/struct_path.html www.cancerinstitute.org.au/cancer_inst/profes/struct_path.html )&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices Australia==&lt;br /&gt;
Cancer Voices NSW has nominated a new representative to the Committee of Cancer Voices Australia (CVA), following John Newsom’s decide to step back recently. Kathy Smith has agreed to take our views to the forum for the Cancer Voices or\ganisations around Australia.  &lt;br /&gt;
&lt;br /&gt;
Sally Crossing, as interim CVN nominee and Chair of CVN, took part in a CVA teleconference on 16 April – from the back of a bus full of birders traveling to SW Queensland!  She had submitted a one page report of CVN activities as requested, and CVN comments on the CVA draft Charities &lt;br /&gt;
Policy.  CVA held a two day face-to face Committee &lt;br /&gt;
meeting in Sydney on 29 and 30 May.  CVN submitted &lt;br /&gt;
a briefing paper on CVA internal matters about which we are seeking agreement and clarification. &lt;br /&gt;
&lt;br /&gt;
The CVN Executive Committee was invited to join the other states’ CVA Representatives for dinner on 29 May, a good opportunity to met them and share CV experiences.&lt;br /&gt;
&lt;br /&gt;
==Interesting Bits and Pieces==&lt;br /&gt;
&lt;br /&gt;
===STATISTICAL ILLITERACY:  INFORMED CONSENT &amp;amp; SHARED DECISION-MAKING ===&lt;br /&gt;
(Ed - SC:  CVN  has long been concerned about the impact of statistical illiteracy, not only on ourselves, but particularly amongst those who advise us.  BCAG members Sue &lt;br /&gt;
Lockwood, Rosetta Manaszewicz and Sally Crossing, and more recently Nicola Bruce, have been writing and talking &lt;br /&gt;
about this conundrum for years.  We have been published (The Lancet) and asked to speak about it from the patient view. We asked John Conroy, a Cancer Voices NSW member&lt;br /&gt;
 and mathematician to give us the gist of this 96 page article which looks at the problem very comprehensively).&lt;br /&gt;
&lt;br /&gt;
An article titled “Helping doctors and patients make sense of health statistics” which appeared in a recent issue of the journal Psychological Science in the Public &lt;br /&gt;
interest (Gigerenzer et al, Vol 8. No 2 2008) argued that ‘many doctors, patients, journalists and politicians alike do&lt;br /&gt;
do not understand what health statistics mean or draw wrong &lt;br /&gt;
conclusions without noticing’&lt;br /&gt;
not understand what health statistics mean or draw wrong conclusions without noticing’ This raises concern for patients who rely on or need to interpret information given by health &lt;br /&gt;
professionals when they are asked to sign informed consent agreements or when they need to make decisions about their treatment. It also raises concern for patients who want to check the reliability of or interpret health statements presented by politicians or journalists and others. It’s suggested that the remedy lies in teaching statistics from early primary school and that this should also play a larger part in medical training. The paper emphasises that clinicians and ethics committees should ensure that informed consent is properly informed, and that clinicians must ensure that decision making shared with patients is based on clear understandings on both sides. &lt;br /&gt;
&lt;br /&gt;
It also points to a need for educators and curriculum makers to guarantee that school graduates are statistically literate and able to look critically at statements made by journalists, politicians, advertisers, the claims of gambling syndicates, and the like.  Above all, consumers must be persistent in their demands to know exactly the meaning of statistics&lt;br /&gt;
 being quoted to them.&lt;br /&gt;
&lt;br /&gt;
John Conroy OAM Cancer Voices NSW&lt;br /&gt;
Cancer Voices NSW Statement (23 March 09) &lt;br /&gt;
&lt;br /&gt;
===The PSA – Controversy:  Patient View===&lt;br /&gt;
Cancer Voices NSW, like many others organisations in the cancer world, has been waiting with interest for the &lt;br /&gt;
results of the two large, international randomised trials &lt;br /&gt;
looking at PSA as a screening tool.  The PSA test is used widely in Australia as a test for prostate cancer, now the most diagnosed cancer among Australians, but not for screening, due to lack of solid evidence.  There is concern that PSA testing leads to over-diagnosis and over-treatment, particularly as treatment often leads to major on-going physical problems for men.  &lt;br /&gt;
&lt;br /&gt;
We have been waiting in the hope that the PSA screening, and even the PSA testing, controversy would be &lt;br /&gt;
resolved by the results of the ERSPC (Europe) and the PLCO (USA) studies which were reported in last week’s, New &lt;br /&gt;
England Journal of Medicine.  The NEJM’s Editorial expresses doubt that we know enough to change policy either way, &lt;br /&gt;
as the new evidence (ERSPC) suggests that screening per se makes only a little difference to deaths.  Our interest also relates to the negative message the public may get about PSA tests (as opposed to screening) and the ramification these outcomes may have for the screening of other cancers. &lt;br /&gt;
&lt;br /&gt;
===Value of the patient perspective===&lt;br /&gt;
Cancer Voices must look at this from the cancer consumer view point- and particularly of the prostate cancer consumer – rather than that of researchers, epidemiologists, &lt;br /&gt;
clinicians or health economists.&lt;br /&gt;
&lt;br /&gt;
The big question for us is – how can the individual or his &lt;br /&gt;
doctor, know if he falls into the “harm” category – over-diagnosis and possible over-treatment, or not?  We &lt;br /&gt;
suggest this is still unanswerable.  The “desperate &lt;br /&gt;
dilemma” of treating or not treating remains, and few will be willing to do nothing.&lt;br /&gt;
&lt;br /&gt;
We also suggest that few individual men will want to wait for their prostate cancer to develop more compelling symptoms, with consequently less chance of effective treatment and recovery.  &lt;br /&gt;
&lt;br /&gt;
What is of most interest to prostate cancer patients is years of survival and quality of life, whereas the studies’ endpoint is death.  What cancer consumers want are studies that focus on less harmful treatment, better diagnostic tests and &lt;br /&gt;
better use of current tests and biopsies.  We call for &lt;br /&gt;
continued and increased research into identifying which cancers are the ones which are likely to require treatment, and greater specialisation in prostate cancer surgery so that nerve-sparing procedures might become more successful.&lt;br /&gt;
&lt;br /&gt;
We recognise the conundrums – the messages for screening policy, the cost-effectiveness of screening and / or testing, and the balance between benefits, survival and harms.  We especially ask that the consumer view is factored into the &lt;br /&gt;
decision-making processes, from national policy right through to individual levels.&lt;br /&gt;
&lt;br /&gt;
==From the newspapers:==&lt;br /&gt;
&lt;br /&gt;
===Public health: Australians refused insurance because of poor genes===&lt;br /&gt;
Australians have been refused insurance protection because of their genetic makeup, researchers have shown in the first study in the world to provide proof of genetic discrimination. Most cases were found to relate to life insurance.  In one instance, a man with a faulty gene linked to a greater risk of breast and prostate cancer was denied income protection and trauma insurance that would have let him claim if he developed other forms of cancer. The findings have led to renewed calls by experts for policies to ensure the &lt;br /&gt;
appropriate use of genetic test results by the insurance &lt;br /&gt;
industry.&lt;br /&gt;
&lt;br /&gt;
The Director of the Centre for Genetics Education at Royal North Shore Hospital, Kristine Barlow-Stewart, said the &lt;br /&gt;
research also showed consumers needed to be better informed about their rights.  Associate Professor Barlow-Stewart and her colleagues surveyed more than 1000 people who had attended clinical genetic services about their &lt;br /&gt;
experiences of discrimination.  An expert assessment panel should be established to advise on which tests are &lt;br /&gt;
sufficiently well understood to be used for insurance &lt;br /&gt;
purposes, she said. Under industry guidelines, insurers &lt;br /&gt;
cannot compel people to have a genetic test, but those who have been tested must reveal their results. It is only legal for companies to use this information if they can justify their decisions.   &lt;br /&gt;
&lt;br /&gt;
===Detection: Bowel cancer tests flawed from faulty kits===&lt;br /&gt;
The federal Government has been forced to defend its bowel cancer screening program after almost half a million people received a faulty bowel cancer testing kit and will need to take the test again.  It emerged yesterday that 475,000 &lt;br /&gt;
Japanese-made testing kits provided to Australians since December last year were not accurately diagnosing the disease.  The kits were provided to all 50-, 55- and 65-year olds as part of the Department of Health and Ageing’s National Bowel Cancer Screening program.  But while the department said last night that Australians could have “full confidence” in its self-testing cancer program, health experts said the regime had serious limitations and needed to be overhauled.  The Department of Health and Ageing released a statement, pledging that new test kits would be made available as a soon as possible. &lt;br /&gt;
&lt;br /&gt;
===Support: Cancer patients refused benefits===&lt;br /&gt;
Centrelink refused to pay sickness allowance to a man dying from cancer because he had set aside money to pay for his funeral and some work debts. The welfare agency also &lt;br /&gt;
denied the disability pension to a woman with advanced &lt;br /&gt;
leukaemia because there was a chance she might recover.&lt;br /&gt;
The cases of “Mr A” and “Mrs B” have been exposed in a Commonwealth Ombudsman report that examines how public servants assess claims from severely ill or dying patients.  The Ombudsman, Professor John McMillan, said the examples were among many that highlighted the problems that occurred when social security law was applied strictly.  “People can face onerous activity and/or reporting requirements for Newstart, youth or sickness allowances, during a time that is already difficult for them and their families,” he said yesterday.&lt;br /&gt;
&lt;br /&gt;
His report recommends a new benefit for patients who require lengthy treatment or recovery periods, and a list of severe conditions that would automatically qualify them for the payment.&lt;br /&gt;
&lt;br /&gt;
==IAN GAWLER in Sydney 12 May 2009==&lt;br /&gt;
Ian Gawler has been successfully running programs to help people with cancer and other serious diseases for 25 years&lt;br /&gt;
.I thought it was time I heard it for the horse’s mouth, so joined a big audience at Crows Nest, a Sydney suburb.  The self help concepts of following a plant based and fish diet,&lt;br /&gt;
meditating, finding meaning and purpose in life, accessing good information-providing groups, regular &lt;br /&gt;
D were exploreexercise and Vitamin d and commended.  More information about residential retreats, courses, books and CDs at [linkto: www.gawler.org] (SC).&lt;br /&gt;
&lt;br /&gt;
==Consumer Advocacy Training==&lt;br /&gt;
&lt;br /&gt;
===Sydney CAT Day – 17 April===&lt;br /&gt;
A special welcome to those 15 CAT attendees who are new CVN members  - we look forward to your input and  your views.  Kathy did an excellent job presenting on CVN, and her own Central Coast radiotherapy advocacy, on our behalf to the Sydney CAT course. Not only did the message go across loud and clear, but she attracted a record number of new CVN members – on the spot!  A new star in the CVN firmament, as well as an extremely effective CVN representative on the Central Coast.&lt;br /&gt;
&lt;br /&gt;
===PIAC &amp;quot;Upskilling&amp;quot; Day 6 April ===&lt;br /&gt;
&lt;br /&gt;
This was attended by four cancer consumer advocates, from Cancer Voices NSW and from the Breast Cancer Action Group NSW (some of us working with both).  Thanks to the Cancer Council NSW and to BCAG NSW for making this possible by paying our fees.&lt;br /&gt;
I found the day an excellent boost to my own skills – we all need this from time to time!  I recommend we make it an annual opportunity for our consumer representatives who would benefit from a refresher course.&lt;br /&gt;
The three sessions covered - Lobbying, Negotiation and &lt;br /&gt;
Media Influence - three vital areas for the successful &lt;br /&gt;
consumer advocate.  We were delighted to welcome &lt;br /&gt;
the PIAC trainer, who also runs the CAT programs, as a &lt;br /&gt;
Cancer Voices NSW member.  She has also run a very &lt;br /&gt;
successful CAT course for Cancer Voices SA, in Adelaide &lt;br /&gt;
recently.&lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training – to come===&lt;br /&gt;
 The Cancer Council will be offering three more Advocacy Training courses this year. The details are:&lt;br /&gt;
*21st &amp;amp; 22nd August - Advocacy Training for Aboriginal People - Location - Western Sydney. Applications are sought from Aboriginal people with an interest in becoming active in speaking out for better cancer prevention or treatment.&lt;br /&gt;
*25th &amp;amp; 26th September - General Advocacy Training - (Location TBA). Applications are sought from anyone with an interest in becoming active in speaking out for better cancer prevention or treatment. &lt;br /&gt;
*30th and 31st October - General Advocacy Training - (Location TBA). Applications are sought from anyone with an interest in becoming active in speaking out for better cancer prevention or treatment. &lt;br /&gt;
To apply, please head to [linkto:www.cancercouncil.com.au/advocates/workshops  www.cancercouncil.com.au/advocates/workshops]&amp;gt; or contact Katie Sheehan on 9334 1406 or [mailto:katies@nswcc.org.au katies@nswcc.org.au] to be sent an application in the mail.&lt;br /&gt;
&lt;br /&gt;
*Consumer Research Training — 27-28 August (see page 1) For an application form please contact Nysha Thomas on 02 9334 1993 or email [mailto:nyshat@nswcc.org.au nyshat@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
===Cancer Institute NSW – Consumer &amp;amp; Community ===&lt;br /&gt;
*Representatives Training 26 Feb &lt;br /&gt;
Nineteen people attended this valuable training workshop on 26 February 2009, over half of whom were Cancer Voices members.  The March CVN newsletter reported on the day.  Now a summary report has been uploaded to the Cancer Institute NSW website, please follow the link to download a copy: [http://www.cancerinstitute.org.au/cancer_inst/nswog/representatives/index.html http://www.cancerinstitute.org.au/cancer_inst/nswog/representatives/index.html]&lt;br /&gt;
We hope these courses will also become&lt;br /&gt;
&lt;br /&gt;
==CONSUMER REPS REPORTS==&lt;br /&gt;
&lt;br /&gt;
===ACS Report===&lt;br /&gt;
The Area Cancer Service Reps met by teleconference&lt;br /&gt;
on 7 April and 20 May.  We welcome two new ACS Reps – both in the Greater Southern Area Cancer Service – Julianne Whyte from Corowa and Michael Coley from Gunning. We are hoping that the Director of Greater Southern ACS will also welcome them onto the Area Cancer Management Group.&lt;br /&gt;
 &lt;br /&gt;
Main topics are the ongoing ones of access to palliative care&lt;br /&gt;
services and the issue of triage practices for cancer patients &lt;br /&gt;
presenting at Emergency Departments.These two meetings will inform the CVN report to the Next meeting of the Directors of Area Cancer Services (DACS) at CI NSW on 10 June.&lt;br /&gt;
&lt;br /&gt;
===Cancer patients at Emergency Departments (ED) ===&lt;br /&gt;
CVN is developing a Position Statement for information and &lt;br /&gt;
discussion.  We are also attempting to find out what the range of practices are within the Area Health Services, with a view to advocating for a best practice system to be put in place.  Thanks to those CVN members who have shared their ED experiences with us – more would be very helpful.  Annette Clement and James Butler have taken the lead on this issue for CVN. Please send info to [mailto:info@cancervoices.org.au info@cancervoices.org.au]&lt;br /&gt;
&lt;br /&gt;
==VALE Don Howe== &lt;br /&gt;
Don Howe, who within the constraints of constant treatment for myeloma was an active Cancer Voices NSW member based in the rural NSW city of Dubbo, passed away on Friday 24 April 2009, following a sudden heart attack.&lt;br /&gt;
&lt;br /&gt;
Don worked hard for rural cancer patients particularly in &lt;br /&gt;
relation to improving IPTAAS, which was the bane of his &lt;br /&gt;
existence, but he saw it as much worse for people who were &lt;br /&gt;
not able to agitate, in part because they did not know the &lt;br /&gt;
system, or they did not wish to offend the administering &lt;br /&gt;
bureaucrats.&lt;br /&gt;
&lt;br /&gt;
For some time Don was associated with the Western Region Advisory Network of the NSW Cancer Council, and he also reviewed a number of publications for the NSW Cancer Council from a consumer perspective, following nomination by Cancer Voices NSW to this task.&lt;br /&gt;
&lt;br /&gt;
Don and his wife Elsie migrated from the UK in 1966, and had been living in Dubbo&lt;br /&gt;
&lt;br /&gt;
I should like to quote what was said about Don in a blog &lt;br /&gt;
associated with the Dubbo Liberal the local Dubbo &lt;br /&gt;
newspaper, by Lynton Grace which expresses very well what we all felt about Don .&lt;br /&gt;
&lt;br /&gt;
Don &amp;amp; Elsie Howe&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
“While a lot of us would have sat back and felt sorry for&lt;br /&gt;
ourselves after being diagnosed, Mr Howe fought a good fight against the disease and used his experience to help others that found themselves in a similar situation. Along with his loving wife Elsie, Mr Howe was a rock for local cancer &lt;br /&gt;
patients in their hours of need and he lobbied politicians to provide a better services for patients in the bush.&lt;br /&gt;
In statement released by Dubbo Base Hospital nursing unit manager Margaret Ross, Mr Howe was described as a&lt;br /&gt;
gentleman and a friend and someone who could be found to give support and information to individual patients.&lt;br /&gt;
That sentiment was echoed by local political leaders Greg Matthews, Dawn Fardell and Mark Coulton, who all knew of Mr Howe's tenacity and passion for helping local cancer &lt;br /&gt;
patients.&amp;quot;I should like to paraphrase a final line in the &lt;br /&gt;
blog byconcurring with the view that &amp;quot;not only will Dubbo be a poorer place for Don's passing, Cancer Voices NSW will also be poorer. However none of us must let his good work fade.”&lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson &lt;br /&gt;
Honorary Secretary Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==Nothing About Us Without Us==&lt;br /&gt;
Lots of action to report this newsletter, particularly in the area of achievements by Cancer Voices NSW for &lt;br /&gt;
people affected by cancer. Several projects for which we had advocated are being realised this year:&lt;br /&gt;
&lt;br /&gt;
$300,000 grant by CC NSW to encourage a collaborative NSW research program in the field of Pharmacogenomics. This addresses CVN’s current top research priority.&lt;br /&gt;
The Medical Oncology Workforce study being undertaken by MOGA. CVN approached MOGA to gather information about medical oncologist workforce gaps in NSW, and now around Australia.&lt;br /&gt;
The Directory of Medical Oncologists: MOGA has also responded positively to this call from CVN.&lt;br /&gt;
A consumer friendly website enabling access to cancer clinical trials:  This has been developed and will be launched towards the end of the year. &lt;br /&gt;
The NSW Auditor-General’s investigation on NSW Health’s management of the state’s radiotherapy services report due 23 June .&lt;br /&gt;
A Roadmap to Improve NSW Radiotherapy Services, launched the Cancer Council NSW on 20 May.&lt;br /&gt;
Consumer Research Forum – to identify the research priorities of people affected by cancer, 14 May. &lt;br /&gt;
Comprehensive cancer centres for NSW – federal funding for the New Sydney Cancer Centre and some regional cancer centres.&lt;br /&gt;
&lt;br /&gt;
These activities address needs identified by the Cancer Voices Area Cancer Services Reps program, our reps working on Consumer Involvement in Research project, as well as from issues submitted by CVN members.  To see so much positive action and good outcomes makes us feel confident that we are on the right track in both content and partnership approach.  Please keep telling us what you need, helping us make those things become a reality.&lt;br /&gt;
&lt;br /&gt;
There remain many issues yet to have happy ending, but we will keep working on them.  The moral of the advocacy story seems to be good well-founded arguments, positive relationships, persistence and committed advocates. Cancer Voices NSW farewelled Prof Jim Bishop, CEO of the Cancer Institute NSW and Chief Cancer &lt;br /&gt;
Officer, as he left for Canberra (see page 5) in April.  We have very much appreciated Prof Bishop’s &lt;br /&gt;
understanding of the value of hearing the consumer perspective in all CI NSW activities which could impact on &lt;br /&gt;
people affected by cancer. We first met Prof Bishop when he was the Cancer Director at RPA, with a vision &lt;br /&gt;
to improve cancer services in this state. The establishment of the CI NSW in 2003 and its development since certainly effected that vision. We have advocated for a consumer to be part of the Selection Panel deciding on the new CEO, and hope that it will be someone from Cancer Voices NSW – the voice of people affected by cancer in this state.  Meanwhile, we look forward to working with the Acting CEO – Prof Rob Sanson–Fisher.&lt;br /&gt;
&lt;br /&gt;
Very best wishes to all our members and other interested readers!&lt;br /&gt;
Sally Crossing AM, Chair&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt;==Consumer Research Training==&amp;lt;/center&amp;gt;&lt;br /&gt;
&amp;lt;center&amp;gt;Interested in taking part in evaluating applications for research funding or for being a “Rep” on research &lt;br /&gt;
studies ? The next annual course will be held on&lt;br /&gt;
Thursday 27 &amp;amp; Friday 28 August 2009.&lt;br /&gt;
If you are interested in attending, please contact Nysha Thomas at the Cancer Council NSW &lt;br /&gt;
&lt;br /&gt;
Tel: 02 9334 1993 or by email to [mailto:nyshat@nswcc.org.au nyshat@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
==ONE THING IN COMMON==&lt;br /&gt;
Real People Tell their Stories of Living with &lt;br /&gt;
Cancer&lt;br /&gt;
&lt;br /&gt;
The second edition of the 1997 book is now available&lt;br /&gt;
&lt;br /&gt;
One Thing in Common is a collection of 53 stories from people whose lives have been touched by cancer.  These personal stories are a testament to resilience.  They aim to provide encouragement and hope to others facing the challenge of a cancer diagnosis.&lt;br /&gt;
&lt;br /&gt;
&amp;quot;When I was diagnosed with cancer and everything seemed so bleak reading the book  enabled me to see that many people do survive and there is plenty of hope&amp;quot;   &lt;br /&gt;
&lt;br /&gt;
Please send $20 to: Cansupport, &lt;br /&gt;
L2 Bldg. 36, Dept Clinical Oncology, &lt;br /&gt;
RNSH,  Pacific Highway,&lt;br /&gt;
ST LEONARDS NSW, 2065.  &amp;lt;/center&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==THANKS==&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt; Cancer Voices NSW greatly appreciates the kind assistance of the Cancer Council NSW in printing and posting our newsletters&lt;br /&gt;
&lt;br /&gt;
==CONTACT==&lt;br /&gt;
Cancer Voices NSW&lt;br /&gt;
A Voice for People Affected by Cancer&lt;br /&gt;
PO Box 5016 Greenwich 2065&lt;br /&gt;
Tel/Fax 02 9436 1755&lt;br /&gt;
Email: [mailto:nfo@cancervoices.org.au nfo@cancervoices.org.au]&lt;br /&gt;
Website: (linkto: www.cancervoices.org.au www.cancervoices.org.au)&lt;br /&gt;
Pancreatic Cancer Support&lt;br /&gt;
 &lt;br /&gt;
The support of the Cancer Council NSW of the NSW Pancreatic Network, www.pancreatic.net.au has enabled Australia to be chosen to lead the research into pancreatic cancer as a part of the International Cancer &lt;br /&gt;
Genome Consortium. This is a global project to genotype 50 cancers by highest incidence. Groundbreaking &lt;br /&gt;
research which has the potential to enable progress in screening and novel targeted therapies to name just a few of the benefits. This is an exciting project which will generate new areas of research and will, for &lt;br /&gt;
pancreatic cancer, significantly raise its research profile. We need people to register so that consumers can be involved in research directions and voicing their needs.&lt;br /&gt;
&lt;br /&gt;
For information on a range of support services available for people affected by pancreatic cancer; &lt;br /&gt;
patients, carers and family, please phone the Cancer Helpline: 131120&lt;br /&gt;
&lt;br /&gt;
GYNAE CANCER FORUM&lt;br /&gt;
Healing the, Body &amp;amp; Spirit&lt;br /&gt;
Thursday 18 June, 6.45 pm&lt;br /&gt;
SAN Cancer Support Centre, Sydney Adventist Hospital, 185 Fox Valley Rd, Wahroonga&lt;br /&gt;
Tel 9487 9061&lt;br /&gt;
Email:	mailto:Nerolie.Gate@sah.org.au Nerolie.Gate@sah.org.au]&amp;lt;/center&amp;gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_36_September</id>
		<title>Newsletter Issue 36 September</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_36_September"/>
				<updated>2009-12-07T07:31:35Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Protected &amp;quot;Newsletter Issue 36 September&amp;quot; ([edit=sysop] (indefinite) [move=sysop] (indefinite))&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==MESSAGE TO MEMBERS==&lt;br /&gt;
So much to report this quarter that the newsletter has grown to twelve pages!  Not all of this will be of interest to all our members and other readers, but we want to make sure that it’s there for those who are, and that it’s on the record.  You are most welcome to comment on any of it, and we hope you do.&lt;br /&gt;
&lt;br /&gt;
The biggest news is the arrival of our new wiki media website.  This has been &lt;br /&gt;
developed over the last few months by Cancer Voices member and IT professional, Bob Jansen.  Bob has been patiently teaching the two Sallies (Crossing and Hodgkinson) how it works and how to make changes. Visit it at the usual website address www.cancervoices.org.au.  After every core information page, there is another page open for discussion – all you have to do is visit and make your comments.  Being able to do this means you can quickly tell us of issues for cancer consumers, survivors, and patients which need immediate attention.  It also means we can give you info about activities, or ask your advice, more quickly.  All the newsletters are posted on the website, and they are all searchable by topic, so you can find anything we have talked about since 2001.  &lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW is really getting into communications – we are investigating the use of Facebook and Twitter, initially for a specific campaign – Radiotherapy Facilities on the central Coast.  Thanks to CVN member Sharyn Owen for guidance.&lt;br /&gt;
&lt;br /&gt;
===Using the Cancer Voices brand?===&lt;br /&gt;
It is Cancer Voices policy that we will share the Cancer Voices “brand’ (which we own) with those cancer consumer based organisations which agree to adopt our objectives, and can operate, or have plans to &lt;br /&gt;
operate independently of any other organisations.   It is important for the credibility of our voice that we to protect the meaning and value of our name.  &lt;br /&gt;
&lt;br /&gt;
To date we have shared our name with all the Australian states and territories, except the Northern &lt;br /&gt;
Territory.  We have also begun to use it regionally when there is a specific campaign which need a focus for the voice of people affected by cancer, and when local Cancer Voices members want to use it on these same terms. An example is the very successful campaign for public radiotherapy facilities on the Central Coast, led by Kathy Smith for “Cancer Voices Central Coast”.  We are also considering sharing the name with &lt;br /&gt;
cancer groups who would like to start an advocacy arm, under the Cancer Voices “brand’ and umbrella, eg “Gynae Cancer Voices”.  To help them start up we could offer them their own section on our website, space in our newsletter and advise on how to get going effectively with limited resources.  Those limited resources are usually a few committed consumers who really want to make a difference.  Food for thought!  &lt;br /&gt;
&lt;br /&gt;
In 2010, Cancer Voices turns ten! This is quite a milestone for us, our partners and all those who make &lt;br /&gt;
decisions about people affected by cancer.  The voice has been clear and consistent for almost a decade.  We will need to think of a good way to celebrate – let us know your ideas for an EVENT.&lt;br /&gt;
&lt;br /&gt;
In September I will have several meetings while visiting the UK (mainly for pleasure purposes) – with the Macmillan Cancer Relief Fund, the European Cancer Patients Council and the James Lind Alliance (of which CVN is a member – Google JLA to find out more).  It’s so useful to hear what other cancer consumer organisations are doing, and vice versa for them. Best wishes to all our readers!		&lt;br /&gt;
Sally Crossing AM, Chair&lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;HIGHLIGHTS&lt;br /&gt;
&lt;br /&gt;
News &amp;amp; Issues&lt;br /&gt;
&lt;br /&gt;
•Gene Patents Inquiry&lt;br /&gt;
&lt;br /&gt;
•Highlights of ASCO &lt;br /&gt;
             2009 &lt;br /&gt;
&lt;br /&gt;
•Emergency Department Blues&lt;br /&gt;
&lt;br /&gt;
•Access to PET Scans&lt;br /&gt;
&lt;br /&gt;
•Radiotherapy Campaign&lt;br /&gt;
&lt;br /&gt;
•IPTAAS&lt;br /&gt;
&lt;br /&gt;
•Clinical Trials&lt;br /&gt;
&lt;br /&gt;
•Consumer Research &lt;br /&gt;
Forum&lt;br /&gt;
&lt;br /&gt;
•Honours Roll grows&amp;lt;/center?==&lt;br /&gt;
&lt;br /&gt;
Thanks very much to those who made donations toward F/Y 2009 – 2010.  Every dollar is much appreciated and will be used carefully and wisely.&lt;br /&gt;
Thanks also for your issues updates, which we add to the list of the priorities for people affected by cancer – this guides all our efforts.&lt;br /&gt;
&lt;br /&gt;
===Invitation to Prostate Cancer Groups===&lt;br /&gt;
We have invited all NSW prostate cancer support groups to swell the voices of people affected by cancer, by joining CVN, particularly as their cancer is now the most diagnosed of them all.  We welcome those who have done so.  Sally Crossing has been invited to speak at the November Prostate Cancer Conference.  This will be a good opportunity to meet more of this active cohort, and to discuss their interests and needs in the area of advocacy. &lt;br /&gt;
&lt;br /&gt;
==Consumer Advocacy Training== &lt;br /&gt;
&lt;br /&gt;
The Cancer Council &amp;amp; CVN are offering two more Advocacy Training courses in 2009, &lt;br /&gt;
both at the Cancer Council NSW,  Woolloomooloo, on &lt;br /&gt;
&lt;br /&gt;
25th &amp;amp; 26th September–(closing date 28 Aug) and 30th and 31st October -(closing date 30 Sept) &lt;br /&gt;
To apply, please head to www.cancercouncil.com.au/advocates/workshops or contact Katie &lt;br /&gt;
Sheehan on 9334 1406 or [mailto:katies@nswcc.org.au katies@nswcc.org.au] to be sent an application in the mail.  &lt;br /&gt;
&lt;br /&gt;
==CVN Committee News==&lt;br /&gt;
&lt;br /&gt;
Your Executive Committee met on 10 May, 15 July and 26 August.  Our next meeting is 7 October.  CVN members are welcome to make suggestions for consideration at these meetings.  Your voices have been heard and we are onto it!&lt;br /&gt;
&lt;br /&gt;
Do consider coming to a CVN Committee meeting – CVN members always welcome.  We are keen to meet CVN members who would like to participate in the work of the CVN Committee – the best way is to come to a meeting and see if what we do presses your buttons!  People often join because of a particular single issue and then broaden their interest. &lt;br /&gt;
&lt;br /&gt;
===Website Update===&lt;br /&gt;
Go to www.cancervoices.org.au and check out the new interactive Cancer Voices NSW website.  It will remain a work in progress, as we can update and refine it at any time.  Do send us any comments and suggestions via the website Discussion Pages, or though info@canervoices.org.au.&lt;br /&gt;
&lt;br /&gt;
===A Cycling Team for CVN?===&lt;br /&gt;
Anyone interested in joining the Cycling Cancer Voices should visit our website (What’s New?) and let us know.  There is a core group who are part of the Sydney Cycling Club and they would be delighted to contact you.  This concept is an offshoot of the dynamic group closely associated with Cancer Voices South Australia, and the Livestrong concept.&lt;br /&gt;
&lt;br /&gt;
===Annual Issues Survey &amp;amp; Donations Insert - thanks!===&lt;br /&gt;
Thanks very much to those who made donations toward F/Y 2009 – 2010.  Every dollar is much appreciated and will be used carefully and wisely.&lt;br /&gt;
Thanks also for your issues updates, which we add to the list of the priorities for people affected by cancer – this guides all our efforts.&lt;br /&gt;
&lt;br /&gt;
===Invitation to Prostate Cancer Groups===&lt;br /&gt;
We have invited all NSW prostate cancer support groups to swell the voices of people affected by cancer, by joining CVN, particularly as their cancer is now the most diagnosed of them all.  We welcome those who have done so.  Sally Crossing has been invited to speak at the November Prostate Cancer “SAC” Conference.  This will be a good opportunity to meet more of this active cohort, and to discuss their interests and needs in the area of advocacy.&lt;br /&gt;
&lt;br /&gt;
==Vale Chris O’Brien==&lt;br /&gt;
More than two and a half years after diagnosis and many operations, Chris O’Brien’s brain tumour had its way. He died at home on 4 June 2009.&lt;br /&gt;
&lt;br /&gt;
There are many things that could be said about Chris O’Brien. He was a renowned head and neck surgeon. He was Director of the Sydney Cancer Centre until his illness forced him to “retire”. What is less known about him is that he was a member of Cancer Voices NSW and, only a few months before he died, was the principal speaker at the Cancer Voices Forum at the Clinical Oncological Society of Australia’s Annual Scientific Meeting in November last year.&lt;br /&gt;
&lt;br /&gt;
That he was a significant influence in setting the new directions in cancer research and treatment in Australia was made clear at his State funeral. A Requiem Mass was held at St Mary’s Cathedral on the morning of 11 June. Presiding was His Eminence, George Cardinal Pell while the Principal Celebrant was Chris’s Parish Priest, Father Kevin Bates SM. Her Excellency the Governor General,  Ms Quentin Bryce, gave the second reading. Politicians, both Federal and State and of all parties were among the mourners.&lt;br /&gt;
&lt;br /&gt;
Giving one of the Eulogies, the Prime Minister, the Honourable Kevin Rudd, paid a simple tribute, “He was the best you could have.” It became clear that Chris and the PM had had many conversations over the past two years. Chris’s influence could be seen in the Government’s decision to create Cancer Centres of excellence in rural areas of Australia. Although Chris had insisted that nothing be named after him, Mr Rudd confessed that this wish would be set aside. Indeed, the enormous cancer centre being created now at Royal Prince Alfred Hospital and perhaps his greatest monument, is already being identified as “The Chris O’Brien Cancer Centre”.&lt;br /&gt;
&lt;br /&gt;
Having been a patient at the Sydney Cancer Centre myself I was deeply touched by the solicitude shown throughout the service to the bereaved family by the Centre’s Chief Nurse, Kevin Cox. But appropriately, Gail O’Brien, Chris’s wife, had the most telling last words: “Goodbye doctor gorgeous!” &lt;br /&gt;
'''John Newsom, attended the State Funeral representing Cancer Voices NSW'''&lt;br /&gt;
Sally Crossing and Chris O’Brien November 2008&lt;br /&gt;
&lt;br /&gt;
==Consumer Reps in Action==&lt;br /&gt;
''“Nothing about us without us!”''&lt;br /&gt;
&lt;br /&gt;
===Update===&lt;br /&gt;
The voices are being heard via 62 Cancer Voices consumer reps, nominated to 122 committees, working parties and research projects for 29 separate organisations. &lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW recommends that anyone interested in taking part, speaking up, writing about their ideas or concerns, being a CVN consumer &lt;br /&gt;
representative – in general joining the action to improve things for people affected by cancer, should sign up for some kind of advocacy training.  2009 is  proving to be a very good year for the standard two-day “CAT” and the Research Training courses (August) with Cancer Council NSW; an “upskilling” PIAC course and one for Cancer Institute NSW consumer reps. Email (info@cancervoices.org.au) if you would like to be put on a waiting list for future versions of these, or sign up right now for the last two CAT courses for this year (page 1).&lt;br /&gt;
&lt;br /&gt;
Our thanks as ever to the Cancer Council NSW for continuing to run these essential courses for people who would like to become CVN consumer reps – as well as undertake activities with the Cancer Council more directly.&lt;br /&gt;
&lt;br /&gt;
==Consumer Reps Reports==&lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training 2009===&lt;br /&gt;
There will be two more Advocacy Training courses this year - on 25th &amp;amp; 26th September and &lt;br /&gt;
30th and 31st October (se page 1).  Do consider registering.  If you are already a CVN nominee to a &lt;br /&gt;
committee or research study (or would like to be), and have not yet done this excellent course, let us know directly, as we now have some reserved places for people like you on each course. &lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW highly recommends attending one of these courses for anyone interested in cancer &lt;br /&gt;
consumer advocacy.  They will give you a good idea of the possibilities and skills involved in being a CVN “representative” – someone nominated by CVN to help influence decision-makers in the interests of people affected by cancer.  This may be via our Area Cancer Services Reps group, or any of the sixty plus “tables” at which our nominees sit.…the sky’s the limit!  You may also wish to combine this interest with Cancer Council advocacy.  Contact details on page 1.&lt;br /&gt;
&lt;br /&gt;
===ACS Report===&lt;br /&gt;
The Area Cancer Service Reps met by teleconference on 18 May and 30 June.–&lt;br /&gt;
&lt;br /&gt;
Julianne Whyte from Corowa is preparing a Cancer Voices position paper on PET Scans – see page 11 and Annette Clement from Hunter &amp;amp; New England is heading the Emergency Dept Position paper team – see page 12 Thanks to both. &lt;br /&gt;
&lt;br /&gt;
Main topics are the ongoing ones of access to palliative care services and the issue of triage practices for cancer patients presenting at Emergency Departments. On going issues relate to access to public radiotherapy facilities in rural areas, &lt;br /&gt;
especially on the Central Coast; as well as ongoing staffing issues relating to radiotherapy at St George Hospital.&lt;br /&gt;
&lt;br /&gt;
==IPTAAS ==&lt;br /&gt;
We have written to the NSW Health Minister regarding inclusion of patients travelling for clinical trials and for consulting the most appropriate (not nearest) specialist.&lt;br /&gt;
&lt;br /&gt;
===Consumers Involvement in Research Program – with Cancer Council NSW Summary of CVN Participation===&lt;br /&gt;
Representation: CVN nominees on all relevant committees, including the Cancer Research Committee, the STREP Grant Steering Committee, the CLEAR Steering Committee.&lt;br /&gt;
Input into setting direction in research, eg the Pharmacogenomics Grant ($300,000), the Consumer Research Priorities Forum, STREP grants, CAM priority setting.&lt;br /&gt;
Input into and participating in research evaluation for funding:  Consumer Research Training and the Consumer Review Panel. &lt;br /&gt;
&lt;br /&gt;
===Consumer Research Training:=== &lt;br /&gt;
Another two day course was held on 27 and 28 August, attended by 25 consumers. SC spoke about the general purpose of the training enabling consumers to truley participate. Cancer Voices will welcome the new “graduates” to join our register of consumers who want to be involved in research projects – we are always looking for more, as the demand increases every year. (if you have attended this course and would like to use your new understanding, please let us know – we can place you in a research area of interest to you.&lt;br /&gt;
&lt;br /&gt;
I've got an iphone 3G 16gb and something terrible happened to it. My phone fell of the toilet bowl and it doesn't function anymore. My phone is still under warranty. I'm planning to bring it to the Genius bar to get it replaced. My question is how much do I have to pay to get it replaced. I live in Australia so I wanna know the price in AUD. Will the apple store replace my phone that has been damaged by water? or will they just fix it?&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
________________&lt;br /&gt;
 &amp;lt;a href=&amp;quot;http://unlockiphone22.com&amp;quot;&amp;gt;cheap iphone unlock&amp;lt;/a&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Radiotherapy Campaign Update==&lt;br /&gt;
&lt;br /&gt;
===PUBLIC R/T FOR CENTRAL COAST===&lt;br /&gt;
&lt;br /&gt;
On 9 June campaigners for public radiotherapy facilities for the Central Coast met with the NSW Minister for Health, and local MP Mr John Della Bosca.  At that meeting the Minister advised that there was to be an announcement made within the following two weeks and that this announcement would be very pleasing to campaigners.&lt;br /&gt;
&lt;br /&gt;
Mr. Della Bosca went on to discuss timeframes for construction and commissioning of such facilities and was extremely encouraging in every way possible that this project would be going ahead in a timely manner.&lt;br /&gt;
&lt;br /&gt;
However, once again, time passed and - surprise, surprise - no announcement.  We then wrote to the Minister on 29 July, 2009 asking for an update on the situation and, at the time of writing this (17/8/09) have received no acknowledgement of that letter nor any other advice.&lt;br /&gt;
&lt;br /&gt;
We are now in the process of putting this campaign on the CVN website, facebook and twitter and last week we went to the media stressing that we want an acknowledgement and response to our request for information and we want commitment to timeframes for funding, construction and completion.&lt;br /&gt;
&lt;br /&gt;
Should such commitment not be forthcoming from either the State or Federal Government we see no alternative but to call a public rally and we will do so.  Kathy Smith&lt;br /&gt;
&lt;br /&gt;
===NSW Auditor-General’s Report on Radiotherapy Services===  &lt;br /&gt;
This was instigated on the initiative of the Cancer Council and Cancer Voices NSW, both organisations being very concerned for several years about the failure of NSW Health to plan for and fund radiotherapy services where they are needed – now and in the future.  Our efforts were always frustrated by the Department of Health’s refusal to first make  the 2003- 2006 State RT Plan available, and now the 2006 – 2011 Plan.&lt;br /&gt;
&lt;br /&gt;
The A-G’s report, tabled in NSW Parliament on 23 June, recommends that the current Plan is released immediately.  CVN has written to NSW Health for reassurance that the other 20+ recommendations are addressed as soon as possible.  To see the full report, go to the website of the NSW Audit office.&lt;br /&gt;
&lt;br /&gt;
===Publication of the Catch Up RT Plan in NSW to 2012===&lt;br /&gt;
&lt;br /&gt;
An article with this title has been published in the Journal of Medical Imagining and Radiation Oncology 53 (2009) 419-430. Sally Crossing is one of the authors, the lead being Dr Graeme Morgan.&lt;br /&gt;
&lt;br /&gt;
In 2008 there were 42 linear accelerators in NSW rather than the 62 recommended, based on population and clinical need.  The article calls for forward planning to begin immediately as 76 linear accelerators will be required for NSW in 2015 and 81 in 2017.  &lt;br /&gt;
&lt;br /&gt;
As we know, NSW Health has yet to release its Radiotherapy Plan for 2007, despite the fact that we are half way through that period.&lt;br /&gt;
&lt;br /&gt;
This peer reviewed article adds further weight to the campaign for NSW Government to commit to a plan to bring radiotherapy services in NSW up to speed, and as soon as possible (SC).  &lt;br /&gt;
 &lt;br /&gt;
==The Voices being heard==&lt;br /&gt;
&lt;br /&gt;
===Speaking:=== &lt;br /&gt;
Senate Community Affairs Committee Public Hearing, 5 August:  Sally Crossing invited to join an evidence &lt;br /&gt;
giving panel with Prof Ian Olver (CEO Cancer Council Australia), Prof Bruce Mann (President, COSA) and Janet Green for the Breast Cancer Action Group NSW.  Two Senators were cancer survivors &lt;br /&gt;
themselves.  See Cancer Voices NSW Statement to the Inquiry on page 10.&lt;br /&gt;
&lt;br /&gt;
Sally spoke at the National Health &amp;amp; Medical Council’s (NHMRC) twenty year celebration at University of Sydney on 26 June, as part of the final panel discussion about the future.  Also to the Clinical Trials Participation Workshop on 10 June and the Consumer Involvement in Research Training Program on 27 August.&lt;br /&gt;
&lt;br /&gt;
===Meetings:===  &lt;br /&gt;
*CanNET, National Steering Committee, 11-12 July, Melbourne&lt;br /&gt;
*Directory of Cancer Services &amp;amp; NSW CanNET Forum, 19 &amp;amp; 24 June &lt;br /&gt;
*Clinical Trials NSW, 10 June&lt;br /&gt;
*CC NSW Members Assembly, 15 June&lt;br /&gt;
*CI NSW EviQ Consumer Forum: SC &amp;amp; SAH part of panel &lt;br /&gt;
*24 June Multidisciplinary Teams Meeting&lt;br /&gt;
*CC NSW Consumer Advocacy Training meeting Melanoma Network 13 August&lt;br /&gt;
*Consumers Health Forum of Aust  (CHF) – meeting new Director Carol Bennett 11 August&lt;br /&gt;
*Health Technology Assessment  (HTA) Review Consultation, Melbourne: invited to participate by CHF&lt;br /&gt;
*Dying with Dignity, 4 &amp;amp; 26 August&lt;br /&gt;
*Personalised Medicine, Garvan institute, 25 August&lt;br /&gt;
*Regular CI NSW meetings of NSWOGS and Clinical Services Advisory Committee &lt;br /&gt;
*CC NSW meetings re CAT courses, CLEAR Study, Radiotherapy, booklet reviews&lt;br /&gt;
*Chronic Illness Alliance Board meetings&lt;br /&gt;
*Comprehensive Cancer Centres Prof Martin Berry &lt;br /&gt;
&lt;br /&gt;
===Events/ Conferences:===  &lt;br /&gt;
Highlights of ASCO 15/16 August, Canberra – &lt;br /&gt;
S Hodgkinson represented CVN, sponsored by Cancer Council NSW see report page 11&lt;br /&gt;
&lt;br /&gt;
===Submissions:===&lt;br /&gt;
Two Abstracts submitted for COSA Conference in November (SC)&lt;br /&gt;
&lt;br /&gt;
===Publications:===  &lt;br /&gt;
A Catch Up Plan for Radiotherapy in NSW 2012&lt;br /&gt;
&lt;br /&gt;
===Media:===&lt;br /&gt;
Gene patents – ABC TV and Crikey coverage; Sally Crossing interviewed for New Idea, CV Central Coast media release, and subsequent interviews by Kathy Smith, 13 August. &lt;br /&gt;
&lt;br /&gt;
==What’s Happening at State Level==&lt;br /&gt;
&lt;br /&gt;
===Cancer Council NSW===&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW congratulates Melanie Trethowan on two counts.  Firstly on being elected to the Cancer Council NSW Board, and secondly as Chair of its Members Assembly.  Melanie is a CVN member of long-standing, being particularly active for us when serving as the Area Cancer Service Rep for Greater Western.   &lt;br /&gt;
&lt;br /&gt;
===Joint Executives Meeting 26 May Outcomes:===&lt;br /&gt;
An refreshed Memorandum of Understanding was signed by Sally Crossing for Cancer Voices NSW and Andrew Penman for the Cancer Council NSW.  It reconfirms and clarifies the relationship between the two organisations - see page 5.  This will be circulated to all Cancer Council staff who work with consumers, or who have an interest in the needs and views of people affected by cancer.&lt;br /&gt;
&lt;br /&gt;
===Communication:===  &lt;br /&gt;
a better way of keeping CVN in touch with the policies and programs of the Cancer Council was agreed on.  CVN will be invited to speak to staff gatherings about working in partnership, our role and purpose.&lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training:===  &lt;br /&gt;
Our need for, input to and support for this program was confirmed by a written agreement with CC NSW.  This clarifies the understanding and expectations of both parties.&lt;br /&gt;
&lt;br /&gt;
===Involving Consumers in Research===&lt;br /&gt;
Cancer Voices has been working in partnership with the Cancer Council on this project since 2001.  Our aims were to ensure the consumer voice is clearly heard in the direction of cancer research and which research is funded.  A major priority for us was seeing Pharmacogenomics research in NSW encouraged. The Cancer Council has responded to our requests in a very meaningful and committed way – this partnership is one that should serve as a good model to other research funding organisations.  See report of the Consumer Research Priorities Forum on page 3&lt;br /&gt;
&lt;br /&gt;
==Memorandum of Understanding Between The Cancer Council NSW and Cancer Voices NSW==&lt;br /&gt;
&lt;br /&gt;
===Preamble:===&lt;br /&gt;
This Memorandum of Understanding (MOU) renews a longstanding and productive relationship between the Cancer Council NSW (CCNSW) and Cancer Voices NSW (CVN), updating and replacing the previous MOU dated 30 May 2003.&lt;br /&gt;
&lt;br /&gt;
Each organisation recognises the distinct and important role of the other.  In finding common goals and projects, the two organisations anticipate greater benefits for the people of NSW in cancer care and control.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
===Organisational roles:===&lt;br /&gt;
The vision of CCNSW is “cancer defeated”.  Its vision will be realised when lives are not cut short by cancer, nor their quality diminished.  Its mission is “to defeat cancer through engaging the community”.  Its field of action and interest is broad, including, but not limited to, improving the outcomes for people affected by a diagnosis of cancer.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW is the peak independent voice for people affected by cancer in NSW.  A coalition of support and advocacy groups founded in 2000, its purpose is to represent, and to act on, the needs and interests of people affected by cancer, working in partnership with decision-makers.  It focuses on the areas of diagnosis, information, treatment, research, support and care, providing an informed consumer voice and view.&lt;br /&gt;
&lt;br /&gt;
===Agreement===&lt;br /&gt;
&lt;br /&gt;
In signing this MOU, CCNSW commits to seek the input and contribution of CVN on projects and initiatives which have impact for people affected by cancer.  This may be via inviting CVN consumer representatives to join working parties, committees, seminars etc, or by CCNSW formally seeking CVN advice on issues of mutual interest.  &lt;br /&gt;
&lt;br /&gt;
CCNSW also agrees to consider those proposals put forward by CVN for possible implementation by CCNSW and/or its partner organisations.  This MOU does not commit CCNSW to undertaking the recommendations of CVN, rather to seek its input and to consider its proposals.  &lt;br /&gt;
&lt;br /&gt;
CVN agrees, to the best of its ability, to provide appropriate, and preferably trained, consumer representatives to participate on appropriate CC NSW working parties and committees and to provide support to those representatives, via mechanisms to communicate with them. &lt;br /&gt;
&lt;br /&gt;
CVN will strive to ascertain and advocate for the issues and concerns of those affected by cancer in NSW, and present these to CCNSW on a regular basis.&lt;br /&gt;
&lt;br /&gt;
This MoU will be circulated to relevant CC NSW staff members and CVN members.  In signing this MOU, both organisations commit their leadership teams to meeting at least twice per year to exchange perspectives and learn from each other, particularly but not exclusively confined to lessons learned from mutual projects and initiatives implemented together. &lt;br /&gt;
 &lt;br /&gt;
===Signed and agreed on 8 July 2009:===&lt;br /&gt;
&lt;br /&gt;
*Andrew Penman, CEO, Cancer Council NSW&lt;br /&gt;
*Sally Crossing AM, Chair Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==Other Cancer Council NSW News==&lt;br /&gt;
&lt;br /&gt;
===New Legal Service for Patients===&lt;br /&gt;
Cancer Council NSW is pleased to announce the launch of a new pilot initiative - the Cancer Patients' Legal Service (CPLS).  The project will offer free legal services to cancer patients and their carers in a range of areas, including powers of attorney, early access to superannuation, mortgages, employment and discrimination law.  This is a joint project with PILCH NSW, (Public Interest Law Clearing House NSW) and services will be made available with the generous support of our law firm partners Herbert Geer, Thomson Playford Cutlers and Gilbert &amp;amp; Tobin.  If you need legal assistance, please call the Helpline on 13 11 20.&lt;br /&gt;
(Editor’s note:  this concept was first raised with CC NSW by Cancer Voices NSW – we are delighted that it has come to fruition in a very important area for people affected by cancer – Thankyou Cancer Council!)&lt;br /&gt;
&lt;br /&gt;
===Patient Accommodation Taskforce===&lt;br /&gt;
Consumer representatives Sally Hodgkinson and Kathy Smith have joined the NSW Patient Accommodation Taskforce.  The Taskforce has been established to implement the recommendations of “Accommodating Change”, the review of accommodation services completed by Cancer Council NSW, Can Assist and the Cancer Institute during 2008.&lt;br /&gt;
&lt;br /&gt;
Work in progress includes improving coordination of travel and accommodation arrangements for patients by establishing a central information point for bookings.&lt;br /&gt;
&lt;br /&gt;
The full recommendations of the review will be distributed in a summary report in August, available on the Cancer Council website www.cancercouncil.org.au&lt;br /&gt;
&lt;br /&gt;
The review has also stimulated the formation of a national peak body for hospital-allied accommodation providers.  Foundation members are Ronald McDonald House Charities, The Leukaemia Foundation, Can Assist and Cancer Council NSW.  &lt;br /&gt;
&lt;br /&gt;
===Cancer Council NSW Patient Transport===&lt;br /&gt;
The late Don Howe and Kathy Smith provided valuable input into the development of a draft Patient Transport Strategy for Cancer Council NSW.  The strategy combines advocacy, direct assistance and community engagement to ensure that the charitably provided resources of Cancer Council are used to maximum effect.  It will inform work to improve patient transport over the next three years.&lt;br /&gt;
&lt;br /&gt;
In 2008-09, Cancer Council services transported 1,554 people to treatment over a total distance of almost one million kilometres.  Cancer Council also has three minibuses and one station wagon on the road daily plus eight partnership agreements with Community Transport Groups in areas where transport to treatment is most needed.  Direct assistance complements advocacy to improve subsidies through the Transport for Health Policy and IPTAAS&lt;br /&gt;
&lt;br /&gt;
===Caring for Kids During Cancer===&lt;br /&gt;
Cancer Council has trialled an innovative service for patients who are parents of children aged 0-14.  Throughout 2008 Cancer Council funded professional nanny services on a part-time basis for patients whose needs were assessed by social workers.  Cancer Council also placed a volunteer “advocate” with one family, who helped the family to gain access to unclaimed Centrelink benefits and to identify sustainable options for life beyond their cancer experience.  The trial project demonstrated unmet needs that are not serviced by the health or welfare sectors.  Approximately fifty families per year from the Sydney region may be in this difficult situation.  &lt;br /&gt;
&lt;br /&gt;
===Help With the High Cost of Cancer===&lt;br /&gt;
Cancer Council is gathering data about patients’ experience of the high cost of cancer.  The Practical Support Unit is seeking information from patients and health professionals to inform it in the following areas:&lt;br /&gt;
&lt;br /&gt;
*	The prevalence of concern about financial issues among cancer patients&lt;br /&gt;
*	The prevalence of financial disadvantage among cancer patients&lt;br /&gt;
*	Common out-of-pocket expenses and/or financial challenges &lt;br /&gt;
*	Awareness and usage of Medicare and PBS Safety Nets&lt;br /&gt;
Please contact Graham Newling, Practical Support Unit Manager at Cancer Council if you wish to tell your story. [mailto:grahamn@nswcc.org.au grahamn@nswcc.org.au] or 9334-1923&lt;br /&gt;
&lt;br /&gt;
===Get Behind Bowel Screening===&lt;br /&gt;
Get Behind Bowel Screening is Cancer Council’s new campaign to help us bring urgently needed attention to the need for free bowel screening for all Australians over 50. Bowel cancer kills 80 Australians each week and is the second most common cancer in Australia. By making bowel cancer screening available to all Australians over 50, more than a third of lives could be saved. Visit www.getbehindbowelscreening.com.au to send the pre-prepared email to your local Member of Parliament and put pressure on the Government to get behind bowel screening. So far over 11,500 emails have been sent. &lt;br /&gt;
&lt;br /&gt;
===Cancer Voices Reviewers of Cancer Council NSW Understanding Cancer Series===&lt;br /&gt;
Understanding Cancer is a series of more than 40 publications for people with cancer, their families and friends. The series, which includes A5 booklets, A4 information sheets and A4 booklets, provides easy-to-read information about specific types of cancer, treatments, and emotional and practical issues. &lt;br /&gt;
&lt;br /&gt;
Each publication is reviewed about every two years, with input from leading clinicians, relevant health professionals, and consumers.  Reviewers are asked to make comments and suggestions on clinical accuracy and appropriateness of content rather on checking for style and design. Usually the booklets are emailed or posted to the reviewer who them marks up their comments and suggestions and returns them within about a three week deadline.&lt;br /&gt;
&lt;br /&gt;
The Cancer Council enjoys a close relationship with Cancer Voices and tries hard to source their consumer reviewers through them. Consumer reviewers are required to have experienced the cancer since the last time the booklet was reviewed (ie, usually within the last two years). If you are interested in being a Cancer Voices consumer reviewer for Cancer Council publications, please contact Sally Hodgkinson on ph: (02) 9958 6570 or email: sallyh8@tech2u.com.au , so that she can add you to her reviewers list.&lt;br /&gt;
&lt;br /&gt;
This September is turning blue for boys! With one in two Australian men being diagnosed with cancer before the age of 85, it’s time we all face up to cancer in men.  Proudly supported by the Cancer Council, Blue September aims to raise awareness about cancers that affect tens of thousands of Australian men each year.   Go to www.blueseptember.org to find out more about Blue September events, promotions and prizes.&lt;br /&gt;
&lt;br /&gt;
==Cancer Institute NSW News==&lt;br /&gt;
&lt;br /&gt;
Sally Crossing attended the Clinical Services Advisory Committee 19 August.  This is a statutory Committee considering high level issues for CI NSW and meets twice a year..  On behalf of CVN, Sally tabled a report of current issues for cancer consumers.  As a result of discussion, CVN will engage more closely with CI NSW about the best process for consumer participation with the CI NSW, particularly in those committees and projects which have impact for people affected by cancer.  &lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW gratefully acknowledges the continued funding assistance of $4000 from the Cancer Institute NSW for 2009-10.&lt;br /&gt;
&lt;br /&gt;
===Multidisciplinary Care and Clinical Networks in NSW, Consultation Workshop===&lt;br /&gt;
The workshop was held on 24 June 2009 and focussed on CanNET and MDT programs with around 80 people attending. Cancer Australia has announced a further $15m over 4 years for CanNET2 with identified themes of CPD, Shared Care Models, role design and minimum caseloads.&lt;br /&gt;
&lt;br /&gt;
===Cancer Patient Satisfaction Survey for 2008===&lt;br /&gt;
The report was released in July 2009 and the survey showed largely the same results as for 2007.&lt;br /&gt;
&lt;br /&gt;
===Cancer Research Grants===&lt;br /&gt;
Cancer research in NSW received a boost with $23 million in new funding from the Cancer Institute NSW announced by the Minister Assisting the Minister for Health (Cancer) the Hon Jodi McKay MP. 82 cancer researchers and specialists will receive grants of up to $1.8 million towards cancer research initiatives across the State.&lt;br /&gt;
&lt;br /&gt;
===Clinical Trials Business Development Centre – new website===&lt;br /&gt;
The NSW Clinical Trials Business Development Centre (ClinicalTrialsNSW), an initiative of the New South Wales Government and co-located at the Australian Technology Park with the Cancer Institute NSW, is the first point of contact for sponsors and researchers wishing to find out more about what Sydney and regional NSW, Australia can offer for clinical development. The Centre has launched a new website. http://www.clinicaltrials.org.au/&lt;br /&gt;
&lt;br /&gt;
==NHMRC Clinical Trials Centre – 20 Years Celebration, 26 June 2009==&lt;br /&gt;
Making it happen:  keeping Australia at the forefront. Sally Crossing AM&lt;br /&gt;
&lt;br /&gt;
Thankyou very much for inviting a consumer to join this eminent panel!  I hope I can do some justice to the interests of all those people who will benefit by clinical trials research for the next 20 years of the Clinical Trials Centre.&lt;br /&gt;
&lt;br /&gt;
As a cancer survivor of 14 years standing, diagnosed with metastases five years ago and doing well to date, my longevity is no doubt due to the outcomes of clinical trials some years ago.  But I am here now as the Chair of Cancer Voices NSW, the voice of people affected by cancer in this state.  I have been invited to mention our advocacy &amp;amp; activities in research to date – consumer involvement which can be replicated by all disease groups.&lt;br /&gt;
&lt;br /&gt;
As consumers we are very interested in supporting clinical trials research and have successfully put forward a number of initiatives to promote it. &lt;br /&gt;
&lt;br /&gt;
*Some years ago we were at the forefront of calls for the creation of the Australia &amp;amp; New Zealand Clinical Trials Register.  We lobbied for a cancer related register as a pilot, thinking it would expand later, but got the whole thing – thanks NHMRC!  &lt;br /&gt;
&lt;br /&gt;
*More recently we advocated for consumer friendly access to information about open clinical trials, based on the ANZCTR, for the benefit of ourselves, for advising clinicians and for the greater good –increased participation in trials.  This has come about via a NHMRC funded Clinical Trial itself, and the website will be available to all round the end of the year – a ground-breaker.  &lt;br /&gt;
&lt;br /&gt;
*Over the last five years we Cancer Voices NSW consumers have formally participated in the decisions of research funding organisations like the Cancer Council, the Garvan, the NBCF, Cancer Australia – supported by training and collaborative studies published in peer reviewed journals. &lt;br /&gt;
&lt;br /&gt;
*We also provide – on request - trained, informed consumers to researchers who value the consumer view in their studies, sometimes as Investigators.  &lt;br /&gt;
*And lastly we scope the research priorities of people affected by cancer – most recently revisited in May – coming up with 177 research topics!  Our number one priority remains the application of pharmacogenomics to personalised cancer treatment.  But that leaves quite a few others to promote.  &lt;br /&gt;
&lt;br /&gt;
We are keen, we are here and we are effective.&lt;br /&gt;
So, to keep Australia at the forefront of clinical trials research, let us help you to help us.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==What’s Happening Nationally==&lt;br /&gt;
&lt;br /&gt;
Cancer Consumer Advocates’ Honour Roll&lt;br /&gt;
&lt;br /&gt;
The “family” of leading cancer consumer advocates in the Australian cancer world has been growing rapidly.  This reflects their increasing influence on behalf of people affected by cancer, wherever decisions about them are being made.  It also reflects the recognition of their value in effecting change by the cancer and broader communities.  &lt;br /&gt;
&lt;br /&gt;
Some advocates have been honoured for their work in specific cancers, for example, prostate, breast and gynaecological cancers- others for their generic efforts, or indeed a mix of both.&lt;br /&gt;
&lt;br /&gt;
The list below (in date order) are those known to the Cancer Voices movement – if there are others, please let us know at [mailto:info@cancervoices.org.au info@cancervoices.org.au], so we can include them on our own honour roll.&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt;&lt;br /&gt;
Clive Deverall AM (WA)&lt;br /&gt;
Max Gardner AM (NSW) (deceased)&lt;br /&gt;
Sally Crossing AM (NSW) &lt;br /&gt;
Lyn Swinburne AM (VIC)&lt;br /&gt;
John Conroy OAM (NSW) &lt;br /&gt;
Sue Lockwood  AM (VIC)&lt;br /&gt;
Ian Roos OAM (VIC)&lt;br /&gt;
Kath Mazzella OAM (WA)&amp;lt;/center&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Media Release—I July 2009==&lt;br /&gt;
'''Support For People Living with Cancer'''&lt;br /&gt;
“Rudd Government initiatives that come into effect from today recognise the challenges cancer patients face and help them get the medicines and treatment they need.&lt;br /&gt;
&lt;br /&gt;
===MRI rebate===&lt;br /&gt;
A new Medicare rebate is available from today for Magnetic Resonance Imaging (MRI) scans used for the initial staging of rectal cancer.  This use of MRI helps the treating doctors to decide on the best treatment to recommend to the patient. Radiotherapy, chemotherapy and surgery, alone or in combination, are used to treat rectal cancer.  MRI before treatment starts will assist patients with rectal cancer to choose treatments that will help and avoid side effects of unnecessary therapy.  More than 5,000 Australians are newly diagnosed with rectal cancer every year.  The new Medicare rebate will be based on a schedule fee of $403.20.  This means that the rebate for outpatients will be $342.75 and for inpatients will be $302.40. There are currently 120 Medicare-eligible MRI units in Australia, an increase of seven units in the past .&lt;br /&gt;
&lt;br /&gt;
===Avastin===&lt;br /&gt;
From today, Australians living with cancer will have access to the drug bevicuzimab (Avastin®) through the Pharmaceutical Benefits Scheme (PBS).  The drug is used for the treatment of colorectal cancer, also known as bowel cancer, and has been shown to prolong life and control symptoms.  The Rudd Government's decision to list this drug on the PBS will make a real difference to the lives of many Australians suffering from bowel cancer.  Around 1,710 additional people will begin using Avastin® for the treatment of colorectal cancer in the first full financial year of PBS listing.  Bowel cancer accounts for approximately 14 per cent of all cancer registrations and is the second most common cancer in Australia.  The listing will cost around $310.7 million between 2009-10 and 2012-13&lt;br /&gt;
&lt;br /&gt;
===PET services===&lt;br /&gt;
Positron Emission Tomography (PET) is a relatively new form of medical imaging, used mainly to inform clinical decisions on how or whether to treat previously diagnosed cancer.&lt;br /&gt;
The Government is providing $6.8 million over four years to enable patients accessing PET services at Royal North Shore Hospital, Westmead Hospital and Austin Health to claim Medicare benefits for eligible services provided at these facilities.  The Government has committed $3.5 million to buy a PET machine and associated radiopharmaceuticals at Royal North Shore Hospital, which is a major oncology centre for more than one million people..&lt;br /&gt;
&lt;br /&gt;
===Radiation oncology training===&lt;br /&gt;
From today, the Government is providing $6 million over three years to support the training of radiation oncology medical physicist registrars. Medical physics is a specialised field and these professionals are responsible for the setup, maintenance and calibration of linear accelerators - the machines used to provide radiation treatment for cancer patients.  These initiatives aim to address a workforce shortage and ensure that trained professionals are available to assist with the delivery of cancer treatment. Medical physicists are one of the key professional groups involved in the delivery of radiation oncology treatment..”&lt;br /&gt;
&lt;br /&gt;
===Cancer Australia===&lt;br /&gt;
CanNET :”Linking regional and metropolitan cancer services for better outcomes”&lt;br /&gt;
Cancer Australia has released it final Evaluation Report on the Cancer Services Network National development Program (CanNET).  It provided seed funding to the six states and the Northern Territory to build evidence for multidisciplinary team diagnosis and treatment through managed clinical networks. (Feb 07 – May 09).  Funding for CanNET 2 was announced in the recent federal budget, which was welcomed by all Cancer Voices.  Sally Crossing, as a member of the National CanNET Steering Group, together with other consumers was able to put the consumer view on the need for a national directory of services template, and to call for consumers to have the option of participating in multidisciplinary team meetings if they so wished.  She also advocated for the concept of a Treatment and Care Plan for cancer patients, but was not successful in that.&lt;br /&gt;
&lt;br /&gt;
The Cancer Institute NSW had carriage of the NSW part of CanNET 1, which centred on the three Area Cancer Services north of Sydney – Northern Sydney Central Coast, Hunter New England and Northern Rivers. Cancer Voices was concerned that the committee oversighting NSW CanNET did not include a Cancer Voices nominee.  This has been heeded and CanNET 2 will definitely seek our participation – confirmed in a recent CI NSW letter.&lt;br /&gt;
This will be interesting as consumer involvement was not a feature of the NSW project, as it was in Victoria and South Australia.  Regardless, a number of good changes were achieved, especially closer clinical networking and the promise of a Directory of Cancer Services, based on multidisciplinary teams.&lt;br /&gt;
&lt;br /&gt;
===Supporting support groups===&lt;br /&gt;
Cancer Australia has new funding of $2.6m for Round 3 (2009-2013) of the Building Cancer Support Networks Program. The grants, which are to encourage better support networks are quite valuable – up to $40,000.  If your support group would like to know more about this assistance, or if you are interested in applying for funding to start one, visit the website at www.canceraustralia.gov.au or contact the Program Manager. Virginia Brown: T 02 6289 1372, email:  virginiabrown@canceraustralia.gov.au.  Cancer Australia was unable to provide further details at time this newsletter went to press, but we do encourage you to contact them for the criteria and apply for funding.&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices Australia==&lt;br /&gt;
Cancer Voices NSW’s new representative, &lt;br /&gt;
Kathy Smith reports:&lt;br /&gt;
&lt;br /&gt;
Lobbying of the Federal Government continues on the issue of proposed Intravenous Chemotherapy Supply Program and its adverse implications for consumers.  Outcome of actions to date is looking very promising and a turn around of the government position is hoped for shortly.&lt;br /&gt;
&lt;br /&gt;
The issue of rural/regional access to clinical trials was discussed at the CVA teleconference on 28 July, 2009.  How can we better accommodate trials in these areas without the levels of bureaucracy we have currently?&lt;br /&gt;
&lt;br /&gt;
CVA is also looking at the potential threat to the future of clinical trials in Australia with regard to some hindrances posed by ethics processes and privacy laws.  Were  privacy laws ever intended to put up the obstacles that we are now interpreting into them or are we being overly cautious to the detriment of research advancement?&lt;br /&gt;
&lt;br /&gt;
One stumbling block is perceived to be indemnity -  i.e. does the local hospital or the AHS bear responsibility for allowing the trial to go ahead if something goes wrong?&lt;br /&gt;
&lt;br /&gt;
This is one of the issues that should be addressed with the federally funded proposed Rural Cancer Centres as they, hopefully, become involved in clinical trials.&lt;br /&gt;
&lt;br /&gt;
In future newsletters, we will update on these and other issues being covered by Cancer Voices Australia. Kathy Smith (CVN Nominee to CVA)&lt;br /&gt;
&lt;br /&gt;
===NOTE:===  &lt;br /&gt;
Cancer Voices NSW is seeking a CVA listing of national issues, to which all Australian Cancer Voices can contribute.  This could be circulated with invitations for and /or contributions to make sure our voice is truly national on these issues. CVN policy is to make our views on those national issues which are of interest our concern tour members, known to both CVA and the relevant decision-makers.  More voices, more impact.&lt;br /&gt;
&lt;br /&gt;
==Patent Nonsense – should your genes be patented?==&lt;br /&gt;
Cancer Voices NSW Statement to the Senate Community Affairs Committee’s Inquiry  into &lt;br /&gt;
Gene Patents, Sydney, 5 August 2009&lt;br /&gt;
&lt;br /&gt;
We are supportive of our member group - the Breast Cancer Action Group NSW’s (BCAG NSW) submission, noting the recent major threats regarding access to and ownership of breast cancer genes, posed by enforcement of gene patents.  Cancer Voices NSW is concerned that such threats will arise for other cancers and asks the Inquiry to recommend that the Australian Government amend legislation to preclude them.  &lt;br /&gt;
&lt;br /&gt;
As an ethical principle, we do not believe that genes, as natural parts of the human body, should be patentable.  We strongly recommend that Australian patent law be amended so that no part of the human body can be patented.&lt;br /&gt;
&lt;br /&gt;
We note that international case studies show that enforcement of gene patents reduces access and drives up testing costs dramatically for patients.  Enforcement also hinders scientific research and the sharing of important medical knowledge (Luigi Palombi:  Gene Cartels Biotech Patents in the Age of Free Trade, Scribe Publications 2009).We have seen no evidence that offering patents is necessary to encourage the identification or isolation of human genes.&lt;br /&gt;
&lt;br /&gt;
I would like to highlight the following two points:&lt;br /&gt;
&lt;br /&gt;
===High risk cancer families:===  &lt;br /&gt;
Currently some people from high risk cancer families can access genetic tests for gene mutations associated with their cancer through public familial cancer centres and testing facilities.  Commercial monopolies over cancer genes, achievable through patenting, are likely to lead to increased costs, as evidenced by the projected charges by Genetic Technologies P/L which has an international patent for the BrCa 1 and Br Ca 2 genes.  A longer term outcome would be increased health care costs for cancer treatment that may well have been avoided.&lt;br /&gt;
&lt;br /&gt;
===Medical research &amp;amp; pharmacogenomics:===  &lt;br /&gt;
Cancer Voices is very aware of the need for access to genetic material by medical researchers.  We see the development of pharmacogenomics, or personalised treatment though the use of genetic testing of our tumour tissue, to be the light on the hill for we cancer patients.  Personalised cancer treatment, using the recent surge in knowledge about human genes, will improve patient outcomes and reduce wastage of ineffective drugs and the overall costs of health care.  We are all hoping that researchers will make progress quickly so that we, as well as those who follow us, can benefit.  I firmly include myself among those hopers!  To this end we have successfully encouraged the Cancer Council NSW to fund a collaborative study, and have warmly welcomed the International Cancer Genome Consortium, supported by the Australian Government to the tune of $20m. That project aims to speed up delivery of personalised treatment. We are concerned that if genes and genetic material can be patented, and if those patents are enforced, this vital area of medical research will be more costly, slower and less translatable to the end beneficiaries.&lt;br /&gt;
Cancer Voices NSW, in our role of representing the interests of people affected by cancer strongly supports an amendment of the Patents Act, to prohibit the granting of patents over such natural materials as human genes.  Apart from the ethical aspects, the understanding of the role of genes in cancer is an exciting new field with enormous potential for us all.  We do not want to see it compromised by patent monopolies over human genes, limiting badly needed opportunities in diagnosis, prognosis and treatment of cancer (and many other diseases).  &lt;br /&gt;
&lt;br /&gt;
In parallel, we also commend the establishment of a National Genetic Framework as proposed by the Royal College of Pathologists of Australasia, to ensure that Australia has appropriate regulations of genetic testing in place. &lt;br /&gt;
&lt;br /&gt;
SALLY CROSSING AM, Chair Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==Position Statements==&lt;br /&gt;
Cancer Voices members have identified the two issues following as being important for people affected by cancer.  These Position Statements will be posted on our website and used in advocacy, once you have had an opportunity to comment and review.  Please let us know via [mailto:info@cancervoices.org.au info@cancervoices.org.au], or via the website. www:cancervoices.org.au&lt;br /&gt;
&lt;br /&gt;
===1. Access to Positron Emission Tomography Issue===&lt;br /&gt;
Access to Positron Emission Tomography (PET)is denied to many cancer patients due to cost, when not Medicare rebated, and to distance.  &lt;br /&gt;
&lt;br /&gt;
===Background===&lt;br /&gt;
PET is an exceptional functional imaging procedure that provides a more accurate picture of the extent of cancer and response to therapy compared to more routine tests that are commonly relied upon to guide critical treatment decisions. PET not only supports better patient outcomes by allowing more personalised delivery of cancer care, it helps save scarce healthcare dollars. &lt;br /&gt;
For example, in 2007 the Medical Services Advisory Committee (MSAC) review found, adding PET to treatment planning  in one cancer alone (recurrent colorectal cancer) could decrease costs Australia wide by between $6,113,000 and $10,187,000. At the same time 20 to 35% of patients could avoid surgery. &lt;br /&gt;
&lt;br /&gt;
===Current situation:===&lt;br /&gt;
•	MSAC has also reported that PET is likely to be cost saving in staging lung cancer and oesophageal cancer as well as in the evaluation of recurrent ovarian cancer and potentially melanoma. 	&lt;br /&gt;
•	MSAC has knocked back evidence for a number of other common cancers, including breast, several of these decisions being questioned by experts and consumers. .&lt;br /&gt;
•	The MSAC process of data collection, from only 7 designated sites in Australia,  to measure the usefulness, effectiveness and cost effectiveness of PET in other cancers has been reported to be unsatisfactory.&lt;br /&gt;
•	There are unacceptable time frames for the implementation of a MSAC recommendation for a cancer indication. In many cases this can be up to 40 weeks.   MSAC consideration also takes too long.&lt;br /&gt;
•	Rural and remote cancer patients suffer a greater disadvantage both in access but also investigation and treatment options. &lt;br /&gt;
It is highly plausible that cancer outcomes&lt;br /&gt;
 would improve disproportionately for rural and remote patients if they better access to PET/CT and the treatment benefits that follow from more precise characterization of each person’s cancer and therapeutic response.&lt;br /&gt;
&lt;br /&gt;
===Recommendations:===&lt;br /&gt;
•	The current Terms of Reference and data collection processes for the MSAC of PET/CT needs to be reconsidered in the light of national and international literature that proves without doubt that this technology has the powerful potential to positively influence the management of cancer for many of the major cancers, and deliver better patient outcomes now and in the future.  This should be a component of the Health Technology Assessment (HTA) Review, to which Cancer Voices NSW has made a submission.&lt;br /&gt;
The Federal government must be urged to&lt;br /&gt;
 grant affordable access to PET/CT for all cancer types where effectiveness is apparent, with particular emphasis on equity and access for rural and remote patients. Julianne Whyte,  August 2009&lt;br /&gt;
&lt;br /&gt;
===2.Emergency Department Guidelines for Cancer Patients===&lt;br /&gt;
&lt;br /&gt;
Issue: The delayed assessment and treatment of Febrile Neutropenic Oncology patients (FNOP) presenting to Emergency Departments of hospitals (ED) is of serious concern, and may be life-threatening.&lt;br /&gt;
&lt;br /&gt;
===Present Position:===&lt;br /&gt;
&lt;br /&gt;
Guidelines for the Implementation of the Australian Triage Scale recommend Triage Category 3 (to be seen in 30 minutes - Situational Urgency ) for immune-suppressed Oncology patients who are on chemotherapy (or who have completed Chemotherapy recently) and who present with a fever. These patients are requested to attend the nearest ED if they develop a temperature of 38 degrees or higher. Treatment with chemotherapy markedly reduces the white cell count which reduces the immune system’s ability to fight infections. Deaths of FNOP have occurred due to lack of action on presentation at EDs.&lt;br /&gt;
&lt;br /&gt;
The Australian Triage Scale also recommends that FNOP patients who exhibit severe respiratory distress, very severe pain or lethargy with fever be treated as Category 2 – (to be seen in 10 minutes).  FNOP are usually acutely ill (although some may not appear so) and unless assessed and treated promptly the outlook can be fatal. The death rate for these patients is 5 %. &lt;br /&gt;
&lt;br /&gt;
Oncologists maintain that best practice treatment for FNOP is prompt assessment with the first dose of antibiotics to be commenced within 60 minutes of presentation.&lt;br /&gt;
&lt;br /&gt;
The Australasian College for Emergency Medicine states:  “It is neither clinically or ethically acceptable to routinely expect any patient or group of patients to wait longer than 2 hours for medical attention. Prolonged waiting times for undifferentiated patients presenting for emergency care is viewed as a failure of both access and quality.”   Many FNOP experience waiting times of up to 5 hours or more before assessment and up to 14 hours before the first dose of antibiotics. &lt;br /&gt;
&lt;br /&gt;
Some cancer patients are issued with a card which displays a telephone number (manned 24 hourly) to be used by ED staff if necessary, to access advice on the emergency treatment of Febrile Neutropenia.  Often no notice is taken of the card by ED staff.&lt;br /&gt;
&lt;br /&gt;
FNOP presenting to some private/district hospitals, especially those in rural and remote areas are often further disadvantaged, especially if the staff do not understand the seriousness of the situation and the use of the card.  Rapid taking of blood for neutrophil count can have a significant positive impact on early management decisions. &lt;br /&gt;
&lt;br /&gt;
===Recommendations===  &lt;br /&gt;
&lt;br /&gt;
Adult patients attending ED should be asked if they are a cancer patient on chemotherapy.  If “yes” this would immediately flag the likelihood of a FNOP, and also the very few cancer patients who have an infection and neutropenia but no fever. &lt;br /&gt;
&lt;br /&gt;
Require Triage Category 3 (seen in 30 mins) for all FNOP and Triage Category 2 (within 10 minutes) for those in severe pain, severe respiratory distress or extreme lethargy with fever.&lt;br /&gt;
&lt;br /&gt;
The first dose of antibiotics to the given within one hour of presentation.&lt;br /&gt;
&lt;br /&gt;
Each ED, even the smallest outreach clinic, should be able to initiate treatment within the timeframes above.  For remote area patients, consider giving chemotherapy with a first dose of oral antibiotic, after telephone advice from an Oncology Department, with strict instructions that the patient must then attend an appropriate hospital for further treatment.&lt;br /&gt;
&lt;br /&gt;
Educate all ED staff re the seriousness of the FNOP condition.&lt;br /&gt;
&lt;br /&gt;
Provide cancer patients on chemotherapy with a “Medical Alert” cancer card advising emergency details for ED staff.&lt;br /&gt;
Annette Clement 		August 2009&lt;br /&gt;
&lt;br /&gt;
Each ED, even the smallest outreach clinic, should be able to initiate treatment within the timeframes above. For remote area patients, consider giving &lt;br /&gt;
chemotherapy with a first dose of oral antibiotic, after telephone advice from an Oncology Department, with strict instructions that the patient must then attend an appropriate hospital for further treatment.&lt;br /&gt;
&lt;br /&gt;
Educate all ED staff re the seriousness of the FNOP condition.&lt;br /&gt;
&lt;br /&gt;
Provide cancer patients on chemotherapy with a &lt;br /&gt;
“Medical Alert” cancer card advising emergency &lt;br /&gt;
details for ED Staff. Annette Clement August 2009&lt;br /&gt;
&lt;br /&gt;
==Interesting Bits and Pieces==&lt;br /&gt;
IPOS (International Psycho-oncology Society) has endorsed the concept that Distress be named the 6th Vital Sign in Oncology. In routine medical practice Vital Signs are utilized by health professionals in order to assess basic functioning. &lt;br /&gt;
&lt;br /&gt;
They are an essential part of patient's case presentation and generally include: Body Temperature, Pulse (or heart rate), Blood pressure, and Respiratory rate. In 1999, due to the significant impact on patients, Pain was endorsed as the 5th Vital Sign. &lt;br /&gt;
&lt;br /&gt;
Prevalence rates of Distress in cancer patient populations have been well documented in the literature. The impact of distress on cancer patients, families and the community is a primary concern for clinicians, scientists, educators, and IPOS.  &lt;br /&gt;
&lt;br /&gt;
==Review==&lt;br /&gt;
Understanding your Rights – A practical guide for people with cancer, their families and friends.&lt;br /&gt;
Cancer Council NSW&lt;br /&gt;
&lt;br /&gt;
This is an extremely valuable guide for cancer patients and carers.  Thanks to the Cancer Council NSW for the consideration and effort that has gone into this booklet.  Understanding your Rights addresses nearly all the questions which cancer patients will ask at some stage of their complex journeys.  This Guide reflects most of the issues raised by the members of Cancer Voices NSW, and no doubt of callers to the Helpline.  It is an invaluable resource for us all.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
===Report from the Highlights of ASCO (American Society of Clinical Oncologists) held in Canberra 15 &amp;amp; 16 August.===&lt;br /&gt;
&lt;br /&gt;
The ASCO conference was held in mid 2009. ASCO allows certain papers/abstracts to be discussed at four sites around the world. MOGA (Medical Oncologists Group of Australia) organised the Canberra conference which was well attended. The Cancer Council NSW sponsored my attendance.&lt;br /&gt;
&lt;br /&gt;
The theme at ASCO in 2009 was ‘personalised medicine the right drug for the right patient with the right disease’. There was also some concentration on the cost of cancer care particularly in the US setting. However this concern also applies to Australia as the new drugs—especially the monoclonal antibodies are increasingly costly.&lt;br /&gt;
&lt;br /&gt;
The theme of personalised medicine was commented on by a number of speakers, though one speaker considered that personalised  medicine was being held up by the lack of trained molecular pathologists, as well as  lack of training in this important in this important field. Patients should be selected/treated on the basis of molecular histology.&lt;br /&gt;
&lt;br /&gt;
There was generally overall agreement that the primary endpoint in clinical trials should be overall survival rather than disease free survival that is often used, or progression free survival.&lt;br /&gt;
&lt;br /&gt;
The issue of supportive care—across the spectrum of care from symptom management eg. Nausea to fertility preservation issues for the younger cancer patient. In the US there is  patient developed website www.fertilityhope.org that sets out the risks and options for patients who wish to preserve their fertility. In the US there is little insurance for IVF. The situation in Australia is different as Medicare does provide assistance, but IVF here, is largely governed by state law. (If in this situation it is worth a look, as it has an on–line risk calculator and survivor stories, even though the advice/financial assistance is directed at US cancer patients.) A risk calculator is being developed in NSW and the National Breast and Ovarian Cancer Centre is developing information for GPs on this issue.&lt;br /&gt;
&lt;br /&gt;
A key issue in the USA is the cost of cancer treatment, especially in relation to the cost of drugs can have a median cost of $US3,000 a month,, which is beyond the ability of many people to pay. He added that integrated cancer care is the desirable way to go, but it must take into account the cost of cancer care especially the new drugs. &lt;br /&gt;
Sally Hodgkinson&lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;THANKS&lt;br /&gt;
Cancer Voices NSW greatly appreciates the assistance provided by the Cancer Council in the printing and posting of this Newsletter&lt;br /&gt;
Stop Press&lt;br /&gt;
&lt;br /&gt;
Central Coast Radiotherapy Services&lt;br /&gt;
&lt;br /&gt;
The NSW Government announces radiotherapy services on the Central Coast a priority&lt;br /&gt;
&lt;br /&gt;
See insert media release dated 31 August 2009&amp;lt;/center&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==A CVN Campaign Success&lt;br /&gt;
STOP PRESS NO.2==&lt;br /&gt;
Federal Ministers Roxon &amp;amp; Snowdon announced on 28 August that Cancer patients in Bendigo, Wodonga, Coffs Harbour, Port Macquarie and  Hobart will now be able to benefit from new cancer treatments as part of clinical cancer trials. They announced funding of $450,000 to increase regional  access to the cancer clinical trials undertaken by Australia’s existing  Multi-site Collaborative National Cancer Clinical &lt;br /&gt;
Trials Groups.&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_37_December</id>
		<title>Newsletter Issue 37 December</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_37_December"/>
				<updated>2009-12-07T07:31:21Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Protected &amp;quot;Newsletter Issue 37 December&amp;quot; ([edit=sysop] (indefinite) [move=sysop] (indefinite))&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;=Message to Members=&lt;br /&gt;
&lt;br /&gt;
Next year Cancer Voices will be celebrating ten years of providing the voice of people affected by cancer in NSW.  We should feel pretty proud of the differences we have made –and indeed we do!&lt;br /&gt;
&lt;br /&gt;
The key to our success has been the commitment, time and support given to making that difference by a great group of cancer consumers – survivors all – who have given so much to making sure the voices, are heard.  And whenever an issue is raised by our members and reps, we work out an advocacy plan to address it.  Sometimes the results are immediate- sometimes they take years.  You will see in this Newsletter that there are now 62 of us sitting at 126 decision-making “tables’ around NSW and some nationally.  Quite a few of these are engaged in our latest area of interest – proving the consumer perspective on research studies.  Wherever we can, we work in partnership with those “stakeholders” who can make positive changes for people affected by cancer.&lt;br /&gt;
&lt;br /&gt;
Your Committee is thinking of how we should best do the celebrating, starting the year with our Annual General Meeting on 10 February. Good ideas are most welcome!&lt;br /&gt;
&lt;br /&gt;
Do come to our Annual General Meeting – a good chance for us to get together and think about the year past and the one ahead.  Please also consider nominating for the Executive Committee 2010 .  You will need to be nominated at the AGM by a voting member group, but you can also tell us of your interest and attend meetings “ex officio” to start with if this suits.  We meet in the Sydney CBD, in very smart offices, courtesy of UBS Investment Bank. continued page 2&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
November saw the Annual Scientific Meeting of the Clinical Oncology Group of Australia (COSA) at Surfers Paradise which I attended for CVN, and at which I busily networked.  For consumers this began on 16 November with the AGM of Cancer Voices Australia, followed by the Queensland Consumer Forum, hosted by Cancer Voices QLD. It was good to meet and re-meet so many others working to provide the “voice”. &lt;br /&gt;
&lt;br /&gt;
In September I also managed some holidays, which were handy for meeting Cancer Voices type organisations in both the UK and Singapore (see report inside). &lt;br /&gt;
&lt;br /&gt;
A big welcome to several new CVN members – from the September and October Consumer Advocacy Training courses, and from the PCFA November Conference of prostate cancer support groups. The more voices, the more views we can reflect and the better we will be heard! –&lt;br /&gt;
&lt;br /&gt;
Very best wishes for the holiday season &amp;amp; a happy and healthy new year - to all our members and many other interested readers! Sally Crossing AM, &lt;br /&gt;
Cancer Voices 2009 AGM Wednesday February 10, 2010 — see page 2&lt;br /&gt;
&lt;br /&gt;
Message to members continued from page 1&lt;br /&gt;
&lt;br /&gt;
November saw the Annual Scientific Meeting of the Clinical Oncology Group of Australia (COSA) at Surfers paradise which I attended for CVN, and at which I busily networked. For consumers this began on 16 November with the AGM of Cancer Voices Australia, followed by the Queensland Consumer Forum, hosted by Cancer Voices Qld. It was good to meet and re-meet so many others working to provide the “voice”.&lt;br /&gt;
&lt;br /&gt;
In September I also managed some holidays, which were handy for meeting Cancer Voices type organisations in both the UK and Singapore (see report inside).&lt;br /&gt;
&lt;br /&gt;
A big welcome to several new CVN members—from the September and October Consumer Advocacy training courses and from the PCFA November Conference of prostate cancer support groups. The more voices, the more views we can reflect and the better we will be heard !&lt;br /&gt;
&lt;br /&gt;
Very best wishes for the holiday season and a happy and healthy New Year — to all our members and many other interested readers ! 				&lt;br /&gt;
&lt;br /&gt;
=HIGHLIGHTS=&lt;br /&gt;
&lt;br /&gt;
AGM - 10 Feb 2010&lt;br /&gt;
&lt;br /&gt;
*New Cancer Minister&lt;br /&gt;
&lt;br /&gt;
*Lifehouse Cancer Centre&lt;br /&gt;
&lt;br /&gt;
*Website completed&lt;br /&gt;
&lt;br /&gt;
*Plans for CAT Training&lt;br /&gt;
&lt;br /&gt;
*Research Priorities&lt;br /&gt;
&lt;br /&gt;
*Radiotherapy Update &lt;br /&gt;
&lt;br /&gt;
*End of life Issues&lt;br /&gt;
&lt;br /&gt;
=NOTICE OF ANNUAL GENERAL MEETING=&lt;br /&gt;
Cancer Voices NSW Inc invites you to attend its 2009 AGM on &lt;br /&gt;
10 February 2010 at 5 pm, at the Cancer Council NSW (Level 6)&lt;br /&gt;
153 Dowling Street Woolloomooloo (Sydney)&lt;br /&gt;
&lt;br /&gt;
Dr Andrew Penman CEO CCNSW, will speak briefly about the partnership between the &lt;br /&gt;
Cancer Council NSW &amp;amp; Cancer Voices NSW.&lt;br /&gt;
&lt;br /&gt;
Nominations for the Committee and for Office Bearers are also invited.  &lt;br /&gt;
Nominees should be supported by their voting member cancer support or advocacy group,&lt;br /&gt;
on the form provided with this newsletter. Please complete and mail to PO Box 5106, Greenwich NSW 2065 by 1 February 2010, or bring on the day.&amp;lt;/center&amp;gt;&lt;br /&gt;
&lt;br /&gt;
=New CANCER VOICES NSW WEBSITE opens for business!=&lt;br /&gt;
www.cancervoices.org.au&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
We are very pleased to advise that our new interactive website is now fully functional and open for business.  Anything you need to check about Cancer Voices is there on the website. And you can now tell us your issues, needs and ideas directly, and in discussion with others. &lt;br /&gt;
&lt;br /&gt;
“Page” headings include: &lt;br /&gt;
◊	Objectives&lt;br /&gt;
◊	Achievements&lt;br /&gt;
◊	Issues Leaflet &lt;br /&gt;
◊	Charter of Cancer Consumer Values &lt;br /&gt;
◊	Position Statements- see list inside&lt;br /&gt;
◊	Newsletters since 2001 &lt;br /&gt;
◊	Membership Form &lt;br /&gt;
◊	Request a Consumer Rep Form &lt;br /&gt;
◊	Glossary – incl acronyms &lt;br /&gt;
&lt;br /&gt;
Discussion with Cancer Voices:  Following each topic page, you will see a Discussion Page – this is where you can tell us what's on our mind, what you would like us to focus on in our advocacy and engagement.&lt;br /&gt;
&lt;br /&gt;
You can “log in” (top right button), or just visit.  You may occasionally find some junk messages sent by robots on the Discussion pages.  Just ignore and we will regularly delete them, but not your messages. This will be monitored over the next few months.  Your feedback is always welcome!&lt;br /&gt;
&lt;br /&gt;
CVN Newsletters are nearly all searchable now – that means you can enter a key word / words and the website will search for all mentions of that word in our newsletters.&lt;br /&gt;
&lt;br /&gt;
We suggest you add www.cancervoices.org.au  to your list of Favourites on your Google (or other search engine) home page. This will make it an easy one-click operation for access.&lt;br /&gt;
&lt;br /&gt;
=Meeting the new Minister for Cancer   – Hon Barbara Perry MP=&lt;br /&gt;
&lt;br /&gt;
CVN met our new Cancer Minister, the Hon Barbara Perry MP, and her cancer policy advisor on 25 November at NSW Parliament House. &lt;br /&gt;
&lt;br /&gt;
The purpose was to introduce ourselves, our issues, objectives and role and to talk about how we might work best together. We took the opportunity to brief the Minister on the progress made on the plans for a comprehensive cancer centre in Gosford – including public radiotherapy facilities – our big win for 2009.  &lt;br /&gt;
&lt;br /&gt;
Minister Perry expressed interest in the issue of febrile neutropaenia patients (FNOP) presenting to hospital Emergency Departments. Other issues raised included Palliative Care and IPTAAS, and the delay in the release of the latest version of the Department of Health’s Radiotherapy Plan. We also talked about how best CVN consumers could work with the Cancer Institute NSW, that reports to the NSW Minister for Cancer.&lt;br /&gt;
&lt;br /&gt;
=CVN Committee News=&lt;br /&gt;
&lt;br /&gt;
Your Executive Committee met on 28 August, 7 October and 25 November.  The next meeting will be the AGM  (see notice on page 1,for details) in February 2010.&lt;br /&gt;
&lt;br /&gt;
==AGM on 10 February 2010.==&lt;br /&gt;
CVN members, groups and individuals are welcome, especially our excellent consumer representatives – out there making sure the voices are heard.&lt;br /&gt;
&lt;br /&gt;
We are making plans for next year’s advocacy and celebration of a decade of providing the independent voice.  New Committee members are most welcome to help us make 2010 a memorable year.&lt;br /&gt;
&lt;br /&gt;
=Consumer Reps in Action “Nothing about us without us!”=&lt;br /&gt;
&lt;br /&gt;
==Update==&lt;br /&gt;
The voices are being heard via 62 Cancer Voices consumer reps, nominated to 126 committees, working parties and research projects for 34 separate organisations. &lt;br /&gt;
A very big thankyou to Sally Hodgkinson who has the complex task of keeping track of our consumer reps, and doing searches to marry up the most suitable reps with the requests received from stakeholder organisations and researchers.&lt;br /&gt;
&lt;br /&gt;
==Consumer Advocacy Training Review of the CAT Program==&lt;br /&gt;
&lt;br /&gt;
This program was an initiative of Cancer Voices NSW and the first was held way back in 2001. The “CAT” course has underpinned CVN’s Consumer Reps Program and empowered many NSW cancer consumers with the tools and skills of advocacy.  The Cancer Council NSW has managed and supported these regular advocacy training sessions, initially for CVN itself, then to include its own community advocates.  We thank them for the on-going support of the CAT Program. &lt;br /&gt;
&lt;br /&gt;
CVN and CC NSW agreed to review the purpose and contents of the course to make sure that they offer what is needed by people interested in advocacy and by the two organisaions.&lt;br /&gt;
&lt;br /&gt;
CVN and CC NSW met on 3 November (during the running of the Melbourne Cup). A first step will be to survey all CAT graduates via the Zoomerang internet facility (about 85% of participants have email, so this will be the quickest and most efficient method) before our next meeting on 15 December.&lt;br /&gt;
&lt;br /&gt;
CVN is keen that we are able to give more notice of these advocacy training opportunities.  We invite readers to send expressions of interest to us ASAP about doing a CAT course in 2010. When we have your contact details, especially email address if you have one, we can then advise you directly about upcoming dates and venues, which should make participation planning a lot easier. &lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW recommends that anyone interested in taking part, speaking up, writing about their ideas or concerns, being a CVN consumer representative – in general, joining the action to improve things for people affected by cancer, should sign up for advocacy training.  Graduates of CAT course have preference in being nominated as a cancer consumer representative by CVN. &lt;br /&gt;
&lt;br /&gt;
==Consumer Advocacy Training 2010 - Expressions of Interest==&lt;br /&gt;
Yes, I am interested in attending a CAT course in 2010&lt;br /&gt;
Name:&lt;br /&gt;
Address:&lt;br /&gt;
Email:				Tel:&lt;br /&gt;
&lt;br /&gt;
NOTE: Please email or mail this information to us ASAP. The website will also enable expressions of interest to be indicated so we will be able to let you know what is on offer in 2010.&lt;br /&gt;
&lt;br /&gt;
You can also apply direct to the Cancer Council.  Special places are allocated  for Cancer Voices NSW members. &lt;br /&gt;
Go to &amp;lt;http://www.cancercouncil.com.au/advocates/workshops&amp;gt; or contact (Tel) 9334 1406 or advocacy@nswcc.org.au to be sent an application in the mail.&lt;br /&gt;
&lt;br /&gt;
==Cancer Institute NSW – Consumer &amp;amp; Community Representatives Training 2010==&lt;br /&gt;
We are in discussion with the CI NSW regarding the best way of upskilling the consumers who work on their various committees, as part of a review of &lt;br /&gt;
consumer engagement with the CI NSW.  &lt;br /&gt;
&lt;br /&gt;
=Consumer Reps Reports=&lt;br /&gt;
&lt;br /&gt;
==ACS Report==&lt;br /&gt;
In the last quarter, the Area Cancer Service Reps met by teleconference on 2 September, 13 October and 9 December.&lt;br /&gt;
&lt;br /&gt;
===Issues arising for the ACS Group:===&lt;br /&gt;
*	Cancer patients at hospital Emergency Departments:  &lt;br /&gt;
CNV has written to the Chair of the College of Emergency Medicine, enclosing the recommendations of our Position Statement (published in June CVN Newsletter and now on the website).  This will also be sent to the Heads of Hospital Emergency Departments throughout NSW.&lt;br /&gt;
&lt;br /&gt;
*	Need for PET scans for more cancers&lt;br /&gt;
Following development of the Position Paper on PET Scans, published in Sept newsletter - thankyou Julianne Whyte - we will continue to raise this issue at federal level and encourage Cancer Voices Australia to do so too.&lt;br /&gt;
&lt;br /&gt;
*	Palliative care: Funding cuts&lt;br /&gt;
While funding of palliative care service throughout NSW is low, the situation in Northern Sydney is very concerning.  The NSCC Area Health Service has cut funding for community palliative care services – ie the service which comes to your home – by 40%!  CVN has been in discussion with Hope–Hammond Care which provides the service and have expressed our distress about this untenable and unfeeling situation.  Following a meeting with the AHS CEO, Mr Matthew Daly, already cancelled and rescheduled, we will decide whether to begin a media and political campaign. &lt;br /&gt;
&lt;br /&gt;
*	Chemo costs to public patients.  &lt;br /&gt;
Our Northern Rivers ACS Rep, Carole Sherringham reports that some public patients in her ACS are being charged for their chemo, while others are not.  Cancer Voices would like to know if others have experienced charges for their chemotherapy drugs received as public patients in public hospitals.&lt;br /&gt;
&lt;br /&gt;
==LET US KNOW!==&lt;br /&gt;
&lt;br /&gt;
CHEMO COSTS FOR PUBLIC PATIENTS – Have you been charged?&lt;br /&gt;
&lt;br /&gt;
Please let us know if you have been charged, or if you know others who have been, for chemotherapy drugs received at public hospitals, as a public patient.  If you have been charged, please tell us:&lt;br /&gt;
&lt;br /&gt;
how much, for what drugs, what cancer, when, &lt;br /&gt;
and at which hospital.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW needs your info to build a case about this if it is common, or indeed if uncommon!&lt;br /&gt;
Email this info, with your name (which we won’t use) and contact to info@cancervoices.org.au &lt;br /&gt;
or mail to PO Box 5106, Greenwich NSW 2065&lt;br /&gt;
&lt;br /&gt;
==VALE Michael Gilhaus :==&lt;br /&gt;
We sadly farewell Michael who introduced us to the joys of cycling after or with cancer.  Through Michael and his association with Cancer Voices SA, we have set up a Cancer Voices NSW Cycling Group, based on members of the Sydney Cycling Club who have experienced cancer.  He will be sorely missed by many.&lt;br /&gt;
&lt;br /&gt;
=CVN &amp;amp; Lifehouse at RPA – the Chris O’Brien Cancer Centre=&lt;br /&gt;
Cancer Voices has been invited to provide the informed consumer view in the development of the new cancer centre of excellence at the Lifehouse Chris O’Brien Cancer Centre.  This will be through participating in the decisions of the Expert User Group.  &lt;br /&gt;
&lt;br /&gt;
CVN has supported the concept of a specialised comprehensive cancer centre for Sydney for some years - see our Position Statement on the CVN website. &lt;br /&gt;
&lt;br /&gt;
Recent federal ($150m) and some NSW funding is about to make the dream a reality. We know that the idea of walking into a building where our entire treatment, information and support needs will be looked after by a specialist multidisciplinary team will inspire confidence and relief for people diagnosed with cancer, knowing they are in the best of hands.  A centre which combines this with cancer research and professional training is an unbeatable recipe for best practice outcomes for everyone involved.&lt;br /&gt;
&lt;br /&gt;
CVN also supports the development of comprehensive cancer centres in other major centres – and some are happening -  with cross linkage and outreach to rural and regional areas.  We do not believe that the development of a major centre of excellence in NSW will in any way reduce cancer services, but rather will enhance them.&lt;br /&gt;
&lt;br /&gt;
=RADIOTHERAPY CAMPAIGN UPDATE=&lt;br /&gt;
&lt;br /&gt;
NSW Auditor-General’s Report on Radiotherapy Services Recommendations for NSW Health (16)  &lt;br /&gt;
&lt;br /&gt;
The A-G’s Report made 16 Recommendations for NSW Health to improve radiotherapy services in this state.  As part of our advocacy to improve access to radiotherapy for NSW cancer patients, CVN was an integral part of the group which sought the A-G’s investigation of NSW Health management and planning of RT services.&lt;br /&gt;
&lt;br /&gt;
Fourteen of these, including the very long awaited Radiotherapy Plan for NSW, are due for implementation by June 2010 or by December 2010, and two by December 2009.  CVN we will monitor progress and report any improvements to the best of our ability, and in partnership with the Cancer Council NSW.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW was invited to provide our views to the NSWH consultants who are working out how Recommendation 8 can be implemented – this is due in December 09 – and states:&lt;br /&gt;
&lt;br /&gt;
That NSW “monitors and benchmarks by December 2009 operational performance measures for radiotherapy treatment centres including for quality, patient safety, waiting times, throughput, cost of treatment and outcomes”.&lt;br /&gt;
&lt;br /&gt;
NSWH supported this Recommendation, but used its usual escape clause of “dependent on resources”.  This will probably mean that Rec 8 will not happen, but hope springs eternal!  Other jurisdictions are able to provide and monitor benchmarks, and list them publicly and regularly on their websites – eg. Ontario and British Columbia in Canada.  &lt;br /&gt;
&lt;br /&gt;
==Why is it so hard for NSW ?==&lt;br /&gt;
&lt;br /&gt;
The other December delivery is Recommendation 4:&lt;br /&gt;
That NSWH “develops a centralised booking systems by December 2009 for all radiotherapy treatment centres within a service network”&lt;br /&gt;
&lt;br /&gt;
This recommendation doesn’t sound very challenging.  We wonder why it is not already in existence.  Fully operational centralised systems -  and the CI NSW’s Business Improvement Toolkit made a good start - should mean reduced waiting times and more efficient use of the facilities we have.  Cancer Voices sees the implementation of both these Recommendations, and in full, as being most important first steps in bringing NSW up to speed in providing adequate radiotherapy service to NSW cancer patients.&lt;br /&gt;
&lt;br /&gt;
Cancer Voices continues to work with the Cancer Council NSW, and some senior radiation oncologists towards convincing the NSW Government and Department of Health to plan and fund better radiotherapy services. &lt;br /&gt;
&lt;br /&gt;
The new Cancer Council publication  Roadblocks to radiotherapy – stories behind the statistics, a companion volume to Improving radiotherapy: where to from here? (of which Sally Crossing for Cancer Voices was a co-author) demonstrates very clearly with what NSW cancer patients are currently coping .&lt;br /&gt;
&lt;br /&gt;
=RT HOT SPOTS:  Central Coast Public Radiotherapy Project Progress=	&lt;br /&gt;
&lt;br /&gt;
As announced in the media release enclosed with September’s CVN Newsletter, a project management company has been appointed to progress the planning and development of public radiotherapy services on the Central Coast.  Things have progressed well since then.&lt;br /&gt;
&lt;br /&gt;
A campaign calling for public RT for this region has been underway since early 2007 and at last there is concrete (no pun intended) evidence that the NSW Government is going to do something about providing such services, most likely as part of a comprehensive cancer centre, if federal funding is received.&lt;br /&gt;
&lt;br /&gt;
Various committees have been formed to investigate and plan expanded cancer services for the Central Coast region (a region with a population of well over 300,000 residents) and the findings and recommendations are due to be reported to the NSW Treasury in January 2010.  Things are well underway for this time schedule to be met and campaigners are confident of (and quietly excited about) a positive outcome for the local cancer community. CVN has two representatives on the principal committee – Kathy Smith and Sally Hodgkinson, so the needs and views of people affected by cancer will continue to be heard.. 	 Kathy Smith&lt;br /&gt;
&lt;br /&gt;
=The Voices being heard=&lt;br /&gt;
&lt;br /&gt;
==Submissions:==&lt;br /&gt;
Cancer Institute NSW Stakeholder Consultation Review.   &lt;br /&gt;
&lt;br /&gt;
==Speaking:==&lt;br /&gt;
Sally Crossing was invited to address the staff of the Cancer Council NSW on 3 Dec at their regular Keep in Touch gathering.  This was a good opportunity to let all those working at the Woolloomooloo head office know about what we do and how we can best work together.&lt;br /&gt;
&lt;br /&gt;
Sally C also gave her annual address to Year 2 medical students at Sydney University on Advocacy, 2 Nov.&lt;br /&gt;
&lt;br /&gt;
Kathy Smith spoke to the Prostate Cancer Foundation’s Support &amp;amp; Advocacy Groups’ conference in Newcastle on 13 November.  CVN is keen to reach more men’s cancer support groups, especially prostate cancer.  We have only four prostate cancer CVN member groups.  Kathy convinced them that joining forces and voices would help their needs as much as it will help Cancer Voices- if not more! We welcome several new prostate cancer support groups as full CVN members and look forward to working with them.&lt;br /&gt;
&lt;br /&gt;
Kathy also spoke to the attendees of both the September and October Consumer Advocacy Training courses about the benefits of being a CVN member. &lt;br /&gt;
John Newsom spoke to the Consumer Research Training course in August.&lt;br /&gt;
&lt;br /&gt;
==Major Meetings:== &lt;br /&gt;
Joint Executive Meeting with the Cancer Council NSW on 26 November, postponed to December 8&lt;br /&gt;
CVN – CC NSW Review of Consumer Advocacy Training Course on 3 November &amp;amp; 15 Dec&lt;br /&gt;
Cancer Institute NSW Stakeholder Consultation Review 3 Dec&lt;br /&gt;
Dying with Dignity NSW – Board meeting&lt;br /&gt;
Chronic Illness Alliance Board meeting&lt;br /&gt;
Palliative Care in Northern Sydney – meeting 1 September&lt;br /&gt;
MOGA Workforce projects meetings&lt;br /&gt;
Australian Clinical Trials On-line meetings&lt;br /&gt;
Health Technologies Assessment Forum, Melbourne 8 September&lt;br /&gt;
PBAC Consumer Forum 13 November&lt;br /&gt;
Pharmacogenomics research at UNSW – Collaboration Options meeting &lt;br /&gt;
Consumer Review Panel, CC NSW Annual Project Grants Review   22 Oct and 27 Nov&lt;br /&gt;
Cancer Australia Research Review&lt;br /&gt;
NBCF Research Review &lt;br /&gt;
NBCF Annual Project Grants&lt;br /&gt;
Pharmacogenomics Research Grant – CC NSW Review Committee 22 Oct &amp;amp; 27 Nov&lt;br /&gt;
NBOCC Transition to Palliative Care Focus group organised&lt;br /&gt;
NSWH Quality &amp;amp; Safety Advisory Group (Garling Report) 24 Nov.&lt;br /&gt;
Commonwealth Safety &amp;amp; Quality Workshop 21 September&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==COSA presentation:==&lt;br /&gt;
Three posters presented with CVN authorship: &lt;br /&gt;
“Consumer Input into research: the Australian Cancer Trials Website”; and “Development and Evaluation of the Australian Cancer Trials online Website and decision support tools”; Consumer Research Priorities with NSWCC. &lt;br /&gt;
&lt;br /&gt;
==Media / Publications:==&lt;br /&gt;
Dying Well -The Weekend Austalian26 Sept/&lt;br /&gt;
VE Newspoll results 27 Oct – SC quote and radio 2 UE&lt;br /&gt;
BreastScreen SMH 26 Oct&lt;br /&gt;
Croaky-Crikey 12 Nov – invited comment on the screening over-diagnosis discussion&lt;br /&gt;
ABC Science online, 10 Nov – interview on same topic  &lt;br /&gt;
&lt;br /&gt;
==Events: ==&lt;br /&gt;
Community Day &amp;amp; AGM at Liverpool Cancer Centre 6 November&lt;br /&gt;
Clinical Oncology Group of Australia’s Annual Scientific Meeting, 16-19 November&lt;br /&gt;
Cancer Council Release of Pancreatic Cancer DVD — 29 November&lt;br /&gt;
Cancer Institute NSW’s Christmas Party 3 Dec&lt;br /&gt;
Cancer Council NSW Members Assembly and AGM 8 December.&lt;br /&gt;
Breast Cancer Action Group NSW AGM 10 December focus on Lung, Colorectal, Breast and Ovarian. The initial phase is to investigate the potential causes of differences in survival rates based on readily available data. The Cancer Institute NSW is participating in this study.&lt;br /&gt;
&lt;br /&gt;
==Cancer Research Funding==&lt;br /&gt;
The Cancer Institute will be providing $10.3M in cancer research funding across several different categories: $102,235 for clinical education scholarships, clinical conference grants and clinical study grants; $8.4M for research innovation grants, career development fellowships and clinical research fellowships; $1.7M for translational health service research grants.&lt;br /&gt;
&lt;br /&gt;
==Stakeholder Consultation==&lt;br /&gt;
CVN has participated in the CI NSW’s review on better ways to consult with its stakeholders, providing a submission in response to their Discussion paper.  We are meeting with the Acting CEO, Prof Rob Sanson-Fisher and senior staffers to discuss how Cancer Voices NSW can be most meaningfully engaged within the new structure of consultation, and generally with the CI NSW.  We will be raising the matter of consumer training as well.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
=WHAT’S HAPPENING NATIONALLY?=&lt;br /&gt;
&lt;br /&gt;
==CVA National Level Issues List==&lt;br /&gt;
This is the list of national issues which Cancer Voices NSW has put to Cancer Voices Australia at their invitation. They were discussed a the recent CVA AGM.  We will monitor progress on them, assist wherever possible and report back to you.  &lt;br /&gt;
&lt;br /&gt;
Comprehensive Cancer Centres&lt;br /&gt;
*Health Technologies Assessment Review &lt;br /&gt;
*PATS / IPTAAS Review&lt;br /&gt;
*Pharmaceutical Benefits Schedule Process and Decisions &lt;br /&gt;
*Reform of Gene Patent Law&lt;br /&gt;
*Dying with Dignity &amp;amp; Control&lt;br /&gt;
*National Bowel Screening Program&lt;br /&gt;
*Intravenous Chemo Supply Program&lt;br /&gt;
*E-Health Introduction&lt;br /&gt;
*National Rural &amp;amp; Remote Issues&lt;br /&gt;
*Access to Superannuation&lt;br /&gt;
*Cancer Workforce Shortages&lt;br /&gt;
*Directories of Cancer Specialists&lt;br /&gt;
*Increase access to and info about Clinical Trials&lt;br /&gt;
*Access to PET Scans&lt;br /&gt;
*Consumer Involvement in Research&lt;br /&gt;
*Consumer Advocacy Training&lt;br /&gt;
*Lymphoedema garments and bandages - Medicare&lt;br /&gt;
*Medicare rebates for MRI&lt;br /&gt;
&lt;br /&gt;
=Cancer Voices visits Singapore=&lt;br /&gt;
I took the opportunity during my recent Singapore visit to meet up with cancer consumer related organisations.&lt;br /&gt;
&lt;br /&gt;
This took place via a very nice Cantonese lunch on Orchard Road on 24 September. People attending were Lim Choo Hin, Voices for cancer Survivors, Serene Goh and Serene Wee of Can Care, Florence Kim Yin Yuke of Reach for Recovery, and Susan Lim and Janet Ling of the Singapore Cancer Society &lt;br /&gt;
(welfare and public education).&lt;br /&gt;
&lt;br /&gt;
The biggest cancer in Singapore is bowel cancer – number one for men, and second for women.  The cancers focussed on by the SCC are bowel, breast, voices (head &amp;amp; neck) and prostate.&lt;br /&gt;
&lt;br /&gt;
As advocacy is not something practised to any extent in Singapore, they were all interested to hear about what we have done and are doing in Australia.  I gave them the two Cancer Voices NSW leaflets and explained how we gather the needs and ideas of people affected by cancer, and then act on them – wherever decisions are made.&lt;br /&gt;
&lt;br /&gt;
Advocacy is very much influenced by the kind of health system of each country. I gather that in Singapore, each person (public or private) contributes a certain amount of their salary each year to their own “health account”. This can then be used when needed. Many cancer patients exhaust their accounts before treatment is finished.&lt;br /&gt;
&lt;br /&gt;
=Cancer Voices visits London=&lt;br /&gt;
I had three very good meetings while in London.  They gave me insights into the fate of Cancer Voices UK, how the European Cancer Patients Council was faring, and the degree of consumer involvement in research in the UK.&lt;br /&gt;
&lt;br /&gt;
First I met Carol Gibbons, who is the User Support &amp;amp; Involvement Project Manager(cgibbons@macmillan.org.au) for Macmillan Cancer Relief Trust, the biggest cancer charity in the UK. It was with the encouragement of Macmillan that the first Cancer Voices UK was set up in 2000 – earlier in the same year as we established ourselves in Australia. It was they who coined our name – and gave approval for its use by us! Sadly, Cancer Voices UK no longer exists as an organisation, although the term is sometimes used for Macmillan advocates.  A lesson for us in Australia – maintain your independence or disappear.&lt;br /&gt;
Sally Crossing &amp;amp; Carol Gibbons&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==Sally Crossing &amp;amp; Carol Gibbons==&lt;br /&gt;
On 17 September, I joined Lynn Faulds-Wood for coffee at the National Gallery –a good mix of business and culture.  Lyn is famous for her well known Spotty Campaign for bowel cancer awareness.  She is also President of the European Cancer Patients’ Coalition, (ECPC) a peak organisation for cancer consumer organisations throughout Europe. &lt;br /&gt;
Lynn Faulds-Woods &amp;amp; Sally Crossing&lt;br /&gt;
&lt;br /&gt;
This involves maintaining a high profile (Lynn initially made her name as TV presenter, so it comes easily), developing relationships with interested politicians in all member countries, as well as with their national organisations. For more info see website www.ecpc-online.org&lt;br /&gt;
&lt;br /&gt;
==About ECPC== 	  &lt;br /&gt;
Established in 2003, The European Cancer Patient Coalition is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers. It has been established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.&lt;br /&gt;
&lt;br /&gt;
Advocacy is mainly effected by the ECPC through top level political influence.  Lyn was keen to understand how we went about our work.  At my suggestion, Lynn had met Ashleigh Moore of CV SA in Dublin recently. She would also like to offer her Spotty Campaign for use in Australia and has mentioned this to our Cancer Councils.&lt;br /&gt;
&lt;br /&gt;
On 18 September I met Hazel Thornton, with whom I have corresponded, and met before, about areas of mutual interest over some years.  Hazel has written a number of very perceptive articles on the subjects of the consumer role in research, published in leading peer reviewed journals.  She also works closely with Sir Iain Chalmers, president of the James Lind Alliance (which Cancer Voices NSW recently joined).&lt;br /&gt;
&lt;br /&gt;
=Position Statements on CVN Website Dec 2009=&lt;br /&gt;
The following 18 Position Statements are available on our website www.cancervoices.org.au.  More will be added as CVN members raise issues of importance with us, and help us to discuss and develop them.  The next step is to publish a draft Statement in this newsletter for further comment before posting them on the website for reference when needed.  We have found this process to work very well and it helps greatly in our advocacy work.  &lt;br /&gt;
&lt;br /&gt;
You are most welcome to make suggestions for further Position Statements, or indeed to make comments on those posted – via the Discussion Page which follows their listing, or directly to us at info@cancervoices.org.au, or by mail to PO Box 5106, Greenwich.  NSW 2065. &lt;br /&gt;
Best Practice Consumer Representation .&lt;br /&gt;
Access to Reliable Information &lt;br /&gt;
Tailored Chemotherapy for Cancer Patients &lt;br /&gt;
Radiotherapy Issues &lt;br /&gt;
Emergency Department Issues &lt;br /&gt;
Research Issues for Cancer Consumers &lt;br /&gt;
Comprehensive Cancer Centres for NSW &lt;br /&gt;
Access to PET Scans &lt;br /&gt;
Dying with Dignity &amp;amp; Control &lt;br /&gt;
Relationships with Pharma &lt;br /&gt;
Outstanding IPTAAS Issues (Isolated Patients’ Accommodation and Assistance Scheme) &lt;br /&gt;
Rural and Remote Cancer Issues &lt;br /&gt;
Complementary and Alternative Therapies in the Treatment of Cancer &lt;br /&gt;
Discharge or Survivor Plans for Cancer Patients Post Treatment &lt;br /&gt;
Radiotherapy Sites in NSW &lt;br /&gt;
Rehabilitation &lt;br /&gt;
Consumer Medicine Information Access (CMIs)&lt;br /&gt;
Cancer Workforce Shortages &lt;br /&gt;
&lt;br /&gt;
=End of Life Issues=&lt;br /&gt;
&lt;br /&gt;
New poll shows massive jump in support for voluntary euthanasia&lt;br /&gt;
&lt;br /&gt;
A new opinion poll from a Dying with Dignity media release reveals there has been a massive surge in support in New South Wales for Voluntary Euthanasia.  The Newspoll of New South Wales found support for Voluntary Euthanasia, had increased 12% on the last survey in 2007.  The survey found support in NSW at 87%, with 10% opposed and 3% don’t know.&lt;br /&gt;
&lt;br /&gt;
The poll also revealed an increase in support across the country, with 85% of Australians in support, 9.5% opposed and 6% don’t know, and an increase of 5% on the last survey conducted in 2007.&lt;br /&gt;
&lt;br /&gt;
The survey, which was commissioned by Dying with Dignity NSW found support was highest among the 18-24 year-olds with 88.3% backing the proposal.&lt;br /&gt;
&lt;br /&gt;
Dying with Dignity NSW spokesman Dr Robert Marr said the substantial increase in support among NSW residents was particularly encouraging.  “With such massive support across the country, the results of this poll send a message to the country’s lawmakers that the time has come for a full debate on the issue,” Dr Marr said.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
Yolanda Grey writes to CVN (excerpt) on” Happiness, Control and Survivorship”: “As far as public interest goes, the views of cancer survivors are credible and respectable as they have a unique perspective on life, on “fighting for life” and everything it encompasses. Survivors, and the disabled and/or elderly are at a unique stage in life – something an “ordinary” person wouldn’t be able to appreciate or comprehend. And in saying this it highlights the change in the thinking of “survivors” compared with people who haven’t had a cancer diagnosis.&lt;br /&gt;
&lt;br /&gt;
I honestly think this topic deserves discussion, not assumptions, censorship and prohibition, and I am pleased to see that Cancer Voices NSW has come forward to be part of this debate. Members can too - you can prepare a &amp;quot;living will&amp;quot; and discuss the issue with your family and friends. Even consider joining Dying with Dignity NSW to learn more about the issue. But without the participation of all in NSW (and Australia) the legalisation of voluntary euthanasia will remain a topic that parliamentarians ignore for fear of the &lt;br /&gt;
Sally Crossing, a leading cancer consumer advocate who lives with her disease said “People like me who are thinking about the end of their lives, want reassurance that they will have a choice to die with dignity and control – to die well, not badly.  This poll confirms that most of the community thinks this way too.”&lt;br /&gt;
&lt;br /&gt;
Yolanda Grey writes to CVN (excerpt) on” Happiness, Control and Survivorship”: “As far as public interest goes, the views of cancer survivors are credible and respectable as they have a unique perspective on life, on “fighting for life” and everything it encompasses. Survivors, and the disabled and/or elderly are at a unique stage in life – something an “ordinary” person wouldn’t be able to appreciate or comprehend. And in saying this it highlights the change in the thinking of “survivors” compared with people who haven’t had a cancer diagnosis.&lt;br /&gt;
&lt;br /&gt;
I honestly think this topic deserves discussion, not assumptions, censorship and prohibition, and I am pleased to see that Cancer Voices NSW has come forward to be part of this debate. Members can too - you can prepare a &amp;quot;living will&amp;quot; and discuss the issue with your family and friends. Even consider joining Dying with Dignity NSW to learn more about the issue. But without the participation of all in NSW (and Australia) the legalisation of voluntary euthanasia will remain a topic that parliamentarians ignore for fear of the minority.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==Importance of Advance Care Directives==&lt;br /&gt;
Every competent adult has the legal right to accept or refuse any recommended health care.  This is relatively easy when people are well and can speak for themselves (not always so!).  Unfortunately during severe illness people are often unconscious or otherwise unable to communicate their wishes – at the very time when many critical decisions need to be made.&lt;br /&gt;
&lt;br /&gt;
By completing an Advance Health Care Directive, you can make your wishes known before this happens.  It comes into effect ONLY if you are unable too make your own decisions.  Dying with Dignity NSW offers a comprehensive form through which you can make your wishes very clear.  Telephone them or go to their website www.dwdnsw.org.au&lt;br /&gt;
&lt;br /&gt;
=Cancer of unknown primary (CUP)= &lt;br /&gt;
&lt;br /&gt;
CUP is invisible.  I know.  I was diagnosed with it in February this year and haven’t met anyone with a similar diagnosis or even been given so much as a patient information sheet on the topic although there are booklets aplenty on almost every other cancer.  It hardly features on cancer support organisation websites in Australia except in the statistics.&lt;br /&gt;
&lt;br /&gt;
Why doesn’t it get talked about? It is the 7th most common cancer group in Australia and one of the top three killers (1), higher than both breast and prostate cancers.  I’m not particularly fussed with statistics as they do not relate to the person and their individual cancer, but they serve a purpose here. My belief, to mix a metaphor, is that CUP is in the ‘too hard basket’.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
CUP featured on ABC Radio National’s Health Report in 2008 after a research monograph was released by the Cancer Institute NSW.  Professor Jim Bishop, then CEO of the Institute said…..'we thought we should look at this because this is a cancer which is hidden in the medical literature; all doctors know about it and patients who get this know about this, but no one talks about it’.&lt;br /&gt;
http://www.abc.net.au/rn/healthreport/stories/2008/2279761.htm.  &lt;br /&gt;
&lt;br /&gt;
So what is CUP?  According to the Cancer Australia website, CUP ‘is diagnosed when cancer is found, having spread elsewhere in the body, but the place where the cancer began (the primary site) cannot be identified’.&lt;br /&gt;
http://www.canceraustralia.gov.au/about-cancer/cancer-information/cancer-types-and-issues.aspx&lt;br /&gt;
&lt;br /&gt;
CUP is a group made up of very different cancers, with different histories, patterns of spread etc.  However there is some research - the monograph mentioned above (2) - which suggests that maybe some groups in the CUP spectrum could represent a new type of cancer or share some genetic characteristics rather than being a group defined by lack of a primary either from a genuine lack of one or from poor follow up. &lt;br /&gt;
&lt;br /&gt;
I was originally diagnosed as having undifferentiated metastatic cancer of the neck.  In other words the cells taken from the enlarged lymph node in my neck did not resemble any others to indicate where it had come from.  After the operation - a neck dissection, and further pathology to the removed nodes and tissues, I was re-diagnosed as having metastatic adenocarcinoma of the neck.  Adenocarcinoma refers to cancer that begins in epithelial tissue that lines structures in the body.  Many glands are made up of the tissue.  Often the cancer is in the breast, lung, prostate, or pancreas. &lt;br /&gt;
&lt;br /&gt;
So instead of starting radiation to the metastatic neck cancer after the surgery, the hunt began for the primary. After being scoped, poked, prodded, having bits removed and tested and feeling that my body belonged to the hospital, there was no sign of the primary. I then went ahead with 30 radiation treatments to the known cancer in the neck. To date the primary remains elusive.  It may still be active.  It may just be too small to see. It may be that my body has dealt with it and it has gone.  The latest CT scan showed no other affected sites.&lt;br /&gt;
&lt;br /&gt;
When I was first diagnosed, my health professional instincts kicked in and I got on the internet to see what information I could find. I didn’t come up with much initially. &lt;br /&gt;
&lt;br /&gt;
For most of the time I haven’t felt well enough to pursue it. Three months after radiation I have a little more energy but I remain deeply frustrated. At times I have been despairing.  Where is the information about CUP for patients?  Where is there any recognition that this cancer group exists except in the stats?  What research is being done?   Where can people get support? Who even talks about this cancer?&lt;br /&gt;
&lt;br /&gt;
Quite by chance I found a website in the UK for people with CUP http://www.cupfoundjo.org/about_us/index.html.  It has been a lifeline to know that this site exists. It includes a report on the first ever conference devoted to CUP – in London in October 2009. &lt;br /&gt;
&lt;br /&gt;
Are you fed up of being invisible?  I am. We may have very different cancers but I believe we share things in common – invisibility, lack of information, lack of support, lack of a clear treatment path. I would like to hear from anyone in this cancer group to see what we do share. We can pool our knowledge and become visible.&lt;br /&gt;
&lt;br /&gt;
Jane Barrett&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
If you want to help, please email Cancer Voices and they will pass your email on to me. Together we can make a difference. &lt;br /&gt;
&lt;br /&gt;
References &lt;br /&gt;
1.Australian Institute of Health and Welfare, Australasian Association of Cancer Registries. Cancer in Australia: an overview, 2008, Cancer Series number 46, December 2008&lt;br /&gt;
2. Tracey E, Glass P, Roder D, Currow D, Jelfs P, Bishop J. Unknown Primary Cancer in New South Wales, May 2008, Cancer Institute NSW Monograph, April 2008&lt;br /&gt;
&lt;br /&gt;
=Excerpt from Martin Berry’s Address at Liverpool Cancer Centre AGM &amp;amp; Community Day 6 Nov 09=&lt;br /&gt;
(Dr Martin Berry, was Director of Area Cancer Services, SWS AHS and a long-standing friend and member of Cancer Voices NSW.  Sally Hodgkinson represented Cancer Voices at the 6 Nov AGM &amp;amp; Community Day, and our role and value were acknowledged during the formalities)  &lt;br /&gt;
&lt;br /&gt;
“I have been in a privileged position with the capacity to make a difference for the South West Sydney community over the past 15 years.  Over that time, my main focus has been on building a cancer service to deliver the best of care through building teams, new services and implementing cutting-edge technology.&lt;br /&gt;
&lt;br /&gt;
Now is the time to re-think our directions.  Cancer services for the 21st century -- how should it be different?&lt;br /&gt;
We need to re- orient our thinking to ask: what do our customers want and expect from us?  Do we meet their expectations?  Do we, and why do we, have outcomes that might fall short of best practice?  The health service and cancer service cannot and should not go it alone.  We need to embrace the input and support of the communities that we serve.&lt;br /&gt;
&lt;br /&gt;
As a person who has worked in cancer services for the past 32 years.  I have had to humbly confront a number of realisations, which for so long I had been generally ignorant.  Patients heal themselves.  I am an agent of that healing process; I am a guest in their lives.  So often I hear: “the patient failed the treatment. “  The reality is, in this situation, the treatment failed to heal the patient.&lt;br /&gt;
&lt;br /&gt;
When cancer strikes, it can cause physical and emotional disruption that can tear a person’s life apart.  They can lose control, feel lost and fearful.  I see my task as providing the means for that person to restore control over their lives and promote healing.  We often hear stories about patients who become passive recipients of a highly technical, impersonal and fragmented machine called healthcare.  We see personhood dissolved into patienthood.&lt;br /&gt;
&lt;br /&gt;
We must ask ourselves: “are our patients becoming increasingly overwhelmed by a paternalistic system that never asked the question:  What does the patient want and need?”  We need to re-think what personhood, family and community means to our lives and the lives of others.  How can we translate our care to be always conscious of humanity and compassion?”&lt;br /&gt;
(This was Martin Berry’s last activity as Director of the Liverpool Cancer Centre. He will continue as a consultant. His place as Director has been taken by Professor Geoff Delany.)&lt;br /&gt;
&lt;br /&gt;
=COSA 09 Report=&lt;br /&gt;
&lt;br /&gt;
Sally Crossing represented CVN at the Clinical Oncology Society of Australia’s Annual Scientific Meeting on the Gold Coast, 16 – 19 November.   She was sponsored by the Australian Clinical Trials Online study group, for which she presented a poster “Consumer input into research: the ACTO Website”.  &lt;br /&gt;
&lt;br /&gt;
The conference theme was Cancer Services and Our Community:  Awareness, Access , Action (triple A rating?). The specific cancers on which it focused this year were brain and lung. There were a number of talks about chemo brain, and chemo side effects which were very pertinent to many of our worries.  The full program is available on the COSA website, www.cosa2009.org.&lt;br /&gt;
&lt;br /&gt;
This is always an excellent way to hear about latest developments in cancer research in Australia and to meet and re-meet cancer care professionals and bureaucrats.  And to tell them about Cancer Voices and the needs and ideas of people affected by cancer.  Now you know why you couldn’t get an appointment with your oncologist that week – they were all in Queensland!   &lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW, through Sally Crossing, co-authored and presented three posters at COSA, two with the University of Sydney and one with the Cancer Council NSW.&lt;br /&gt;
&lt;br /&gt;
On Monday 16 November, following the Annual General Meeting of Cancer Voices Australia (attended by the Cancer Voices from host state Queensland, Victoria, South Australia and New South Wales) Kathy Smith and Sally took part in the Consumer Forum.  Leonie Young, Chair of CV Queensland, hosted this session of very good speakers who picked up on the main themes of the next few days.  &lt;br /&gt;
&lt;br /&gt;
Another consumer related meeting was that of the consumers who work on the various Clinical Oncology Groups (ANZBCTG, ANZUP, AGITG, ALTG, ANZGOG, &lt;br /&gt;
COGNO – breast, urogenital &amp;amp; prostate, gastro-intestinal, lung, gynaecological and neuro cancers respectively!), informally known as the clinical trials “COGS”.  Currently, most are invited as individuals to join each COG’s Consumer Advisory Group, and are not nominated by cancer consumer organisations.  The meeting decided to form an email network, and possibly have regular face to face meetings and establish links with other consumer groups for feedback.&lt;br /&gt;
&lt;br /&gt;
The next three days were full of interesting presentations, discussions, and great opportunities to network – I managed to have a chat to all our stakeholders and decision-makers over coffee, lunch and the conference dinner, and returned home tired, but replete! (SC).&lt;br /&gt;
Sally Crossing and the ACTO poster at COSA 2009&lt;br /&gt;
&lt;br /&gt;
=Cancer Voices Australia AGM 16 Nov&lt;br /&gt;
Kathy Smith CVN Rep and Sally Crossing attended the CVA Annual General Meeting on the Gold Coast Queensland prior to the COSA meeting (see above). The CVA Chair for 2010 is Ian Roos from Victoria.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
=CLEAR vision on what causes cancer Help Us find the answer=&lt;br /&gt;
(CVN has a representative on the CLEAR study)&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
The Cancer Council NSW is calling out for cancer patients across NSW to join Australia’s most comprehensive study on the causes of cancer. They have made it even easier to enrol as you can complete the consent form and questionnaire on-line, at www.clearstudy.com.au&lt;br /&gt;
&lt;br /&gt;
Launched in 2006, the Cancer Lifestyle and Evaluation of Risk (CLEAR) study will unlock answers on how lifestyle and genetic factors that influence cancers such as melanoma, in the NSW community.&lt;br /&gt;
&lt;br /&gt;
The recruitment goal over the first five years of the study is 10,000 participants; 5000 people recently diagnosed with cancer and 5000 partners. Participants are asked to complete a questionnaire about various aspects of their lifestyle and provide a blood sample for laboratory analyses. &lt;br /&gt;
The biobank will provide a resource to test current and future hypotheses on the environmental, genetic and infectious factors that might influence the risk of cancer.&lt;br /&gt;
&lt;br /&gt;
However to date, one third of this number has signed up to the study, and Cancer Council urges NSW&lt;br /&gt;
residents aged 18 and over, who have been diagnosed with cancer in the past eighteen months to join up.&lt;br /&gt;
&lt;br /&gt;
“We understand the eighteen months after a cancer diagnosis is an incredibly tough time,” says Associate Professor Freddy Sitas, Director of the Cancer Council NSW’s Cancer Research Division.&lt;br /&gt;
&lt;br /&gt;
But we are asking these patients to help us find some really important information that will hopefully prevent other people from the hearing the words ‘you’ve got cancer’.&lt;br /&gt;
&lt;br /&gt;
Thanks to research we know at least one third of cancers are due to lifestyle factors, such as smoking, excessive sun exposure and obesity and that certain genes are linked to certain cancer. But to prevent more cancers we need more information and that is what the CLEAR study is designed to do.&lt;br /&gt;
&lt;br /&gt;
For more information, visit: www.clearstudy.com.au, or call 1800 500 894&lt;br /&gt;
&lt;br /&gt;
=Consumer Involvement in Research – CVN Reps in action=&lt;br /&gt;
&lt;br /&gt;
Our program towards having the voice heard by cancer researchers, underpinned by our work with the Cancer Council NSW over the last five years, is bearing lots of fruit.  The overarching purpose is to further research which is truly relevant to people affected by cancer.&lt;br /&gt;
&lt;br /&gt;
At the end of 2009, Cancer Voices NSW nominees joined the teams of nearly 50 research studies.  Our nominees are preferably graduates of the Consumer Research Training course, held each year by the Cancer Council NSW.  Being able to place them in real current research situations gives value to this training.  Graduates may also serve on the CCNSW’s annual Consumer Review Panel which considers the funding of project grant proposals. Current Chair of the panel is James Butler – a big job well done, James!&lt;br /&gt;
&lt;br /&gt;
The only major cancer research funder in our state with no CVN consumer input is the Cancer Institute NSW.  We hope to rectify this situation in the near future.&lt;br /&gt;
&lt;br /&gt;
==Where the Voices are heard:==&lt;br /&gt;
39 CVN members currently serve on committees associated with the following research groups, institutions and universities:&lt;br /&gt;
&lt;br /&gt;
National Breast &amp;amp; Ovarian Cancer Centre, National Breast Cancer Foundation, Cancer Australia, Trans Tasman Radiation Oncology Group, Medical Oncology Group of Australia, CeMPED (USyd), CHeRP (CCNSW and Univ Newcastle), Prince of Wales Oncology Group, AGITCG, PoCOG (USyd), CCORE, Universities of Western Sydney, Sydney, NSW and Wollongong, Cancer Council NSW, Victorian Cancer Agency, &lt;br /&gt;
Millennium Institute, Garvan Institute, and &lt;br /&gt;
St Vincent’s Medical Research Institute (Vic) &lt;br /&gt;
&lt;br /&gt;
=Consumers Research Priorities Forum=&lt;br /&gt;
&lt;br /&gt;
Last newsletter we promised to let you know about the research priorities identified by the cancer consumers who met on 14 May.  As there were 177, we have decided to further analyse and publish them in a journal article, as well as put them on our website.  Here are the headings through which they were gathered – not yet prioritised, in order of numbers of topics identified for research.  The fact that some of these have in been researched does not mean that more research in those areas should not be on the consumer priorities list – but will reinforce researchers' interest in those areas.&lt;br /&gt;
Treatment (44)&lt;br /&gt;
Carers &amp;amp; Family(41)&lt;br /&gt;
Prevention (41)&lt;br /&gt;
End of life &amp;amp; Palliative Care (33)&lt;br /&gt;
Screening &amp;amp; Diagnosis (17)&lt;br /&gt;
&lt;br /&gt;
For people affected by cancer, the most important probably fall under the headings of Treatment, &lt;br /&gt;
Carers &amp;amp; Family and End of Life &amp;amp; Palliative Care, so we shall analyse these first.  It’s a big job, but the result will be very useful when advising researchers. and research funders of those areas of research most &lt;br /&gt;
relevant to consumers. &lt;br /&gt;
&lt;br /&gt;
=Personalised Treatment for Cancer: CCNSW Research Grant= &lt;br /&gt;
&lt;br /&gt;
This has been a major research priority for Cancer Voices for some time, as newsletter readers will &lt;br /&gt;
recognise. We have sought ways to increase the speed and focus of the translation of scientific knowledge about the human genome to a tool for ensuring that cancer drugs are as targeted as possible—ie. we will eventually only take those drugs which can be shown to positively affect our particular cancers. This area of study also has implications for determining which cancers at diagnosis are likely to develop and which will not, with a big impact on choice of therapy as a result.&lt;br /&gt;
&lt;br /&gt;
CVN had recommended that this area of research should be fast tracked by means of a substantial grant and this was agreed by the CCNSW last year. CVN were pleased that this year the CCNSW was able to offer the NSW research community a $300,000 grant for a collaborative approach to address this priority.&lt;br /&gt;
&lt;br /&gt;
CVN has participated in the Review of applicants ensuring that consumer involvement is a feature of the successful collaboration, and that we will have an ongoing role within the winning recipient’s work. We have also asked that our initiative and involvement be formally acknowledged.&lt;br /&gt;
&lt;br /&gt;
=WHAT’S HAPPENING AT STATE LEVEL ?=&lt;br /&gt;
==Cancer Council NSW==&lt;br /&gt;
Involving Consumers in the Research Program&lt;br /&gt;
CVN is seeking a review of this program to clarify expectations and our involvement in the program. It has developed into such an important one for both people affected by cancer, our informed consumer representatives, for researchers and of course for the Cancer Council itself. After five years we think it is time to take stock and plan for the next five.&lt;br /&gt;
&lt;br /&gt;
==Radiotherapy patients speak out==&lt;br /&gt;
The Cancer Council has published the results of the March Radiotherapy CALL IN, advertised in our newsletter and in which a number of CVN members took part.  258 individuals called in and their experiences, many very disturbing, have been collated in Roadblocks to radiotherapy – stories behind the statistics.  The challenges of travel to distant services, both physical, psychological and financial, of all-day waiting, equipment breakdown and little advice or support are well evidenced. This report will bring home a clear message to the NSW Government that its time to fix the system.  For a &lt;br /&gt;
copy cal the Cancer Council on 02 9334 1900 or visit their website www.cancercouncil.org.au.&lt;br /&gt;
&lt;br /&gt;
Government that it is time to fix the system. For a copy call the Cancer Council on 02 9334 1900 or visit their website www.cancercouncil.org.au.&lt;br /&gt;
&lt;br /&gt;
==Cancer Helpline Issues==&lt;br /&gt;
The Cancer Council has again shared with Cancer Voices the de-identified list of problems reported by people ringing their excellent Helpline.  This is invaluable in keeping our advocacy grounded and complements the kind of feedback our members send in.&lt;br /&gt;
&lt;br /&gt;
==Cancer Information Centres==&lt;br /&gt;
As part of its drive to provide better access to information and support services for cancer patients, their families and friends, Cancer Council has opened a series of Cancer Council Information Centres. Cancer Council has worked with hospitals and cancer treatment centres over the past 18 months to establish the centres close to where patients are receiving their treatment.&lt;br /&gt;
&lt;br /&gt;
The Centres have been designed to help anyone affected by cancer to easily access information about cancer and its treatments, and find out about the range of support services available to them throughout their cancer journey. In addition to a range of printed resources, including the Understanding Cancer booklets, the Centres have internet-connected computers so visitors can search for information on cancer-related websites. There are also DVDs, books and access to the Cancer Council’s main library.&lt;br /&gt;
&lt;br /&gt;
Visitors can talk to specially trained Cancer Council volunteers, who are more than happy to lend a listening ear and help visitors find the resources they need. A telephone is provided in all Centres for anyone who wants to call the Cancer Council Helpline and speak to an experienced oncology professional about any aspect of cancer.&lt;br /&gt;
&lt;br /&gt;
Patients, their carers, families and friends are welcome to call in as often as they choose. Appointments are not required and all resources are free.&lt;br /&gt;
&lt;br /&gt;
There are currently five Cancer Council Information Centres operating at the following locations, and more will be opened during the next 12 months:&lt;br /&gt;
&lt;br /&gt;
Calvary Mater Hospital in Newcastle. Level 3, outside the Medical Centre. Open weekdays&lt;br /&gt;
Tamworth Oncology Clinic at Tamworth Regional Hospital. Open Monday, Wednesday, Thursday and Friday.&lt;br /&gt;
Cancer Therapy Centre Liverpool Hospital. Open weekdays&lt;br /&gt;
Southern Highlands Private Hospital Specialist Centre, 2 Holmdale Street Bowral. Open Monday Wednesday and Thursday&lt;br /&gt;
Riverina Cancer Care Centre in Wagga Wagga. Open Monday-Thursday.&lt;br /&gt;
&lt;br /&gt;
For more information about Information Centres or any other services provided by Cancer Council, visit www.cancercouncil.com.au&lt;br /&gt;
Cancer Council has developed a new look  Cancer Information &amp;amp; Support Kit. All newly diagnosed NSW cancer patients should get one. It includes the new booklet &lt;br /&gt;
Understanding Your Rights and Responsibilities,&lt;br /&gt;
Food and Cancer,&lt;br /&gt;
Emotions and Cancer,&lt;br /&gt;
Helpline contacts,&lt;br /&gt;
A Cancer Care Diary and other useful information. &lt;br /&gt;
It was launched by Professor Ian Olver on 18 November, 2009.&lt;br /&gt;
&lt;br /&gt;
Dr Andrew Penman (CEO CCNSW) Prof Ian Olver (CEO CCA), Sally Crossing (Chair CVN) &amp;amp; Dr Kendra Sundquist Manager (CCNSW)&lt;br /&gt;
&lt;br /&gt;
=Cancer Institute NSW=&lt;br /&gt;
&lt;br /&gt;
==A New CEO?==&lt;br /&gt;
We are expecting news about the CI NSW’s new CEO at any minute.&lt;br /&gt;
&lt;br /&gt;
==New eBulletin: incite==&lt;br /&gt;
The CI NSW has launched incite, a quarterly electronic journal about its news and activities. This can be read at http://www/incite/cancerinstitute.org.au.  Unfortunately there will not be any hard copies printed for those who are without internet access. &lt;br /&gt;
&lt;br /&gt;
==Launch of eviQ==&lt;br /&gt;
eviQ the Cancer Institute NSW standard cancer treatment website was launched on October 20.  eviQ Cancer Treatments Online provides accurate, current, relevant, and evidence based information about clinical cancer treatments and replaces its forerunner, CI-SCaT, which has been in existence for the last 4 years. The new eviQ offers additional functionality and information for front line clinicians across NSW and the rest of Australia. It includes increased safety information and faster access for busy clinicians. The site receives around 600,000 hits a month.  See it at www.cancerinsitute.org.au&lt;br /&gt;
&lt;br /&gt;
==International Study==&lt;br /&gt;
An International Cancer Benchmarking Partnership (ICBP), led by the UK Department of Health, has been initiated inviting 15 countries and jurisdictions to participate from Europe, Canada and Australia. This study provides an exceptional opportunity to compare cancer survival outcomes and to better understand the potential causes of reported differences among the participating countries. Victoria and NSW have been invited to the partnership. The international comparison will firstly focus on four tumour types, namely Lung, Colorectal, &lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==How to contact CVN==&lt;br /&gt;
PO Box 5016, GREENWICH NSW 2068&lt;br /&gt;
Email: info@cancervoices.org.au&lt;br /&gt;
Website: www.cancervoices.org.au&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW is the peak coalition for NSW cancer support and advocacy groups. Founded in 2000,our purpose is to represent, and to act on, the needs and interests of people affected by cancer in our state, working in partnership with decision makers. We focus on the areas of diagnosis, information, treatment, research, support and care, providing an informed consumer voice and view.&lt;br /&gt;
&lt;br /&gt;
= 2009 THANK YOUS=&lt;br /&gt;
&lt;br /&gt;
==NEWSLETTER:==&lt;br /&gt;
Cancer Voices NSW thanks the small voluntary editorial team which has produced four issues of this newsletter in 2009. They are:  Editor:  Sally Crossing; Format: Sally Hodgkinson;  Proof reading Elisabeth Kochman. We also thank all our regular contributors and stakeholders, of course, our many appreciative readers.&lt;br /&gt;
&lt;br /&gt;
==WEBSITE:==&lt;br /&gt;
A special thanks this year to Bob Jansen of Turtle lane Studios, who has been extraordinarily patient as we leant the ropes of our new self-managed website which he created for and with us.  Bob can be contacted at .www.bob.jansen@turtleland.com.au&lt;br /&gt;
&lt;br /&gt;
==THE VOICES:==&lt;br /&gt;
And thanks to our many and valued consumer representatives – out there making sure the voice of people affected by cancer is heard wherever decisions are made. &lt;br /&gt;
&lt;br /&gt;
As ever, we thank the Cancer Council NSW for printing, packing and mailing this newsletter – invaluable help!  (in case you were wondering why your CVN Newsletter comes in a Cancer Council envelope – this is the reason!)&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements</id>
		<title>Position Statements</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements"/>
				<updated>2009-11-17T10:04:11Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Click on one of the links below to download the position statement.&lt;br /&gt;
Cancer Voices NSW publishes these short papers so that our views on the topics can be accessed easily.  Comments and suggestions are welcomed via the Discussion Page which follows.  &lt;br /&gt;
&amp;lt;br&amp;gt;&amp;lt;br&amp;gt;&lt;br /&gt;
*Best Practice Consumer Representation ([http://www.turtlelane.com.au/cancervoices/images/0/06/Best_Practice_Consumer_Representation.pdf PDF Version])&lt;br /&gt;
*Access to Reliable Information ([http://www.turtlelane.com.au/cancervoices/images/1/18/Reliableinformation.pdf PDF Version])&lt;br /&gt;
*Tailored Chemotherapy for Cancer Patients ([http://www.turtlelane.com.au/cancervoices/images/b/b6/Tailoredchemo.pdf PDF Version])&lt;br /&gt;
*Radiotherapy Issues ([http://www.turtlelane.com.au/cancervoices/images/6/6d/Radiotherapyissues.pdf PDF Version])&lt;br /&gt;
* Emergency Department Issues ([http://www.turtlelane.com.au/cancervoices/images/5/54/ED_issues.pdf PDF Version])&lt;br /&gt;
*Research Issues for Cancer Consumers ([http://www.turtlelane.com.au/cancervoices/images/b/b5/Researchissues.pdf PDF version])&lt;br /&gt;
*Comprehensive Cancer Centres for NSW ([http://www.turtlelane.com.au/cancervoices/images/3/3f/Cancercenters.pdf PDF Version])&lt;br /&gt;
* Access to PET Scans ([http://www.turtlelane.com.au/cancervoices/images/6/6e/Access_to_PET_Scans.pdf PDF Version])&lt;br /&gt;
* Dying with Dignity &amp;amp; Control ([http://www.turtlelane.com.au/cancervoices/images/0/05/Dying_with_Dignity_%26_Control.pdf PDF Version])&lt;br /&gt;
* Relationships with Pharma ([http://www.turtlelane.com.au/cancervoices/images/2/2a/Pharma_Feb_09.pdf PDF Version])&lt;br /&gt;
*Outstanding IPTAAS Issues (Isolated Patients’ Accommodation and Assistance Scheme) ([http://www.turtlelane.com.au/cancervoices/images/e/ee/Outstandingissues.pdf  PDF Version])&lt;br /&gt;
*Rural and Remote Cancer Issues ([http://www.turtlelane.com.au/cancervoices/images/0/08/Ruralandremoteissues.pdf PDF Version])&lt;br /&gt;
*Complementary and Alternative Therapies in the Treatment of Cancer ([http://www.turtlelane.com.au/cancervoices/images/b/b3/Complimentaryandalternative.pdf PDF Version])&lt;br /&gt;
*Discharge or Survivor Plans for Cancer Patients Post Treatment ([http://www.turtlelane.com.au/cancervoices/images/8/8f/Discharged.pdf PDF Version])&lt;br /&gt;
*Radiotherapy Sites in NSW ([http://www.turtlelane.com.au/cancervoices/images/a/a1/Radiotherapysites.pdf PDF Version])&lt;br /&gt;
*Rehabilitation ([http://www.turtlelane.com.au/cancervoices/images/2/22/Rehab.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
* Cancer Workforce Shortages ([http://www.turtlelane.com.au/cancervoices/images/c/cf/POSITION_STATEMENT_Cancer_Workforce_Shortages.pdf PDF Version])&lt;br /&gt;
* CMI Reform ([http://www.turtlelane.com.au/cancervoices/images/5/51/Position_Statement_CMI_Reform.pdf PDF Version])&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:Position_Statement_CMI_Reform.pdf</id>
		<title>File:Position Statement CMI Reform.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:Position_Statement_CMI_Reform.pdf"/>
				<updated>2009-11-17T10:03:45Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
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		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:POSITION_STATEMENT_Cancer_Workforce_Shortages.pdf</id>
		<title>File:POSITION STATEMENT Cancer Workforce Shortages.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:POSITION_STATEMENT_Cancer_Workforce_Shortages.pdf"/>
				<updated>2009-11-17T10:02:15Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW</id>
		<title>Talk:Cancer Voices NSW</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW"/>
				<updated>2009-10-29T08:41:59Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Sorry, as the entry page of this wiki, you may not add any discussion to this page. We have done this to try and control the rubbish that some people want to insert here using automated programs.&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW</id>
		<title>Talk:Cancer Voices NSW</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW"/>
				<updated>2009-10-29T08:41:35Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Protected &amp;quot;Talk:Cancer Voices NSW&amp;quot; ([edit=sysop] (indefinite) [move=sysop] (indefinite))&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Sorry, as the entry page of this wiki, you may not add any discussion to this page. We have doe this to try and control the rubbish that some people want to insert here using automated programs.&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW</id>
		<title>Talk:Cancer Voices NSW</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW"/>
				<updated>2009-10-29T08:41:20Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Sorry, as the entry page of this wiki, you may not add any discussion to this page. We have doe this to try and control the rubbish that some people want to insert here using automated programs.&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW</id>
		<title>Talk:Cancer Voices NSW</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW"/>
				<updated>2009-10-27T09:32:24Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Blanked the page&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Bobj</id>
		<title>User:Bobj</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Bobj"/>
				<updated>2009-10-27T06:41:29Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;* [[MediaWiki:Sidebar]]&lt;br /&gt;
&amp;lt;nowiki&amp;gt;&lt;br /&gt;
Original MediaWiki:Sidebar&lt;br /&gt;
&lt;br /&gt;
* navigation&lt;br /&gt;
&lt;br /&gt;
** mainpage|mainpage-description&lt;br /&gt;
&lt;br /&gt;
** Issues Leaflet|Issues Leaflet&lt;br /&gt;
&lt;br /&gt;
** currentevents-url|currentevents&lt;br /&gt;
&lt;br /&gt;
** Current Action|Current Action&lt;br /&gt;
&lt;br /&gt;
** Position Statements|Position Statements&lt;br /&gt;
&lt;br /&gt;
** Objectives|Objectives&lt;br /&gt;
&lt;br /&gt;
** How to Join|How to Join&lt;br /&gt;
&lt;br /&gt;
** Consumer representatives?|Consumer representatives?&lt;br /&gt;
&lt;br /&gt;
** Charter of Values|Charter of Values&lt;br /&gt;
&lt;br /&gt;
** Newsletters|Newsletters&lt;br /&gt;
&lt;br /&gt;
** Contact us&lt;br /&gt;
&lt;br /&gt;
** helppage|help&lt;br /&gt;
&lt;br /&gt;
* stuff&lt;br /&gt;
&lt;br /&gt;
** portal-url|portal&lt;br /&gt;
&lt;br /&gt;
** currentevents-url|currentevents&lt;br /&gt;
&lt;br /&gt;
** recentchanges-url|recentchanges&lt;br /&gt;
&lt;br /&gt;
** randompage-url|randompage&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
* SEARCH&lt;br /&gt;
&lt;br /&gt;
* TOOLBOX&lt;br /&gt;
&lt;br /&gt;
* LANGUAGES&lt;br /&gt;
&amp;lt;/nowiki&amp;gt;&lt;br /&gt;
&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
[[TestSMW]]&lt;br /&gt;
&lt;br /&gt;
==EmailForm Extension==&lt;br /&gt;
* [http://www.mediawiki.org/wiki/Extension:EmailForm#Usage http://www.mediawiki.org/wiki/Extension:EmailForm#Usage]&lt;br /&gt;
*[[MediaWiki:EmailForm]]&lt;br /&gt;
 This page is a special page used by the EmailForm extension to provide configurationdetails for each email form.&lt;br /&gt;
 &lt;br /&gt;
 The special page, MediaWiki:EmailForm, has one line for each page with an email form on it. Each line specifies the settings for that page, separated by the '|' character. The format of each line is:&lt;br /&gt;
 page name | send to email address | prefix for subject&lt;br /&gt;
 &lt;br /&gt;
 *page name - Name of the page that the form is on, e.g. Contact me&lt;br /&gt;
 *send to email address - Email address used as a target for the form, e.g. To: eat-this@spam.bot&lt;br /&gt;
 * prefix for subject - Prefix for the start of the email's subject. The first 60 characters of the message contents are appended to create the Subject: field.&lt;br /&gt;
 &lt;br /&gt;
 Example:&lt;br /&gt;
 &lt;br /&gt;
  Contact me | eat-this@spam.bot | (from contact form)&lt;br /&gt;
 &lt;br /&gt;
  Request help | eat-this@spam.bot | (from help form)&lt;br /&gt;
&lt;br /&gt;
* [[BJ:TrialEmailForm]]&lt;br /&gt;
* [http://tlsserver.dyndns.biz/cancervoices/index.php/BJ:TrialEmailForm?action=edit BJ:TrialEmailForm Edit]&lt;br /&gt;
&lt;br /&gt;
==Improved Access Control Extension==&lt;br /&gt;
*[http://www.mediawiki.org/wiki/Extension:Improved_Access_Control Improved Access Control]&lt;br /&gt;
*[[Usergroup:AdminGroup]]&lt;br /&gt;
&lt;br /&gt;
[[File:Arts Content for the Digital Era Strategy.pdf]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW</id>
		<title>Talk:Cancer Voices NSW</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW"/>
				<updated>2009-10-22T08:33:36Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Blanked the page&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements</id>
		<title>Position Statements</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements"/>
				<updated>2009-10-20T07:15:10Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Click on one of the links below to download the position statement.&lt;br /&gt;
Cancer Voices NSW publishes these short papers so that our views on the topics can be accessed easily.  Comments and suggestions are welcomed via the Discussion Page which follows.  &lt;br /&gt;
&amp;lt;br&amp;gt;&amp;lt;br&amp;gt;&lt;br /&gt;
*Best Practice Consumer Representation ([http://www.turtlelane.com.au/cancervoices/images/0/06/Best_Practice_Consumer_Representation.pdf PDF Version])&lt;br /&gt;
* ED Issues ([http://www.turtlelane.com.au/cancervoices/images/5/54/ED_issues.pdf PDF Version])&lt;br /&gt;
* Access to PET Scans ([http://www.turtlelane.com.au/cancervoices/images/6/6e/Access_to_PET_Scans.pdf PDF Version])&lt;br /&gt;
* Dying with Dignity &amp;amp; Control ([http://www.turtlelane.com.au/cancervoices/images/0/05/Dying_with_Dignity_%26_Control.pdf PDF Version])&lt;br /&gt;
* Emergency Dept Triage ([http://www.turtlelane.com.au/cancervoices/images/a/af/Emergency_Dept_Triage.pdf PDF Version])&lt;br /&gt;
* Pharma Feb 09 ([http://www.turtlelane.com.au/cancervoices/images/2/2a/Pharma_Feb_09.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
*Outstanding IPTAAS Issues (Isolated Patients’ Accommodation and Assistance Scheme) ([http://www.turtlelane.com.au/cancervoices/images/e/ee/Outstandingissues.pdf  PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Radiotherapy Issues ([http://www.turtlelane.com.au/cancervoices/images/6/6d/Radiotherapyissues.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Rural and Remote Cancer Issues ([http://www.turtlelane.com.au/cancervoices/images/0/08/Ruralandremoteissues.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Research Issues for Cancer Consumers ([http://www.turtlelane.com.au/cancervoices/images/b/b5/Researchissues.pdf PDF version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Access to Reliable Information ([http://www.turtlelane.com.au/cancervoices/images/1/18/Reliableinformation.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Complementary and Alternative Therapies in the Treatment of Cancer ([http://www.turtlelane.com.au/cancervoices/images/b/b3/Complimentaryandalternative.pdf PDF Version])&lt;br /&gt;
*Rehabilitation ([http://www.turtlelane.com.au/cancervoices/images/2/22/Rehab.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Discharge or Survivor Plans for Cancer Patients Post Treatment ([http://www.turtlelane.com.au/cancervoices/images/8/8f/Discharged.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Tailored Chemotherapy for Cancer Patients ([http://www.turtlelane.com.au/cancervoices/images/b/b6/Tailoredchemo.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Radiotherapy Sites in NSW ([http://www.turtlelane.com.au/cancervoices/images/a/a1/Radiotherapysites.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Comprehensive Cancer Centres for NSW ([http://www.turtlelane.com.au/cancervoices/images/3/3f/Cancercenters.pdf PDF Version])&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements</id>
		<title>Position Statements</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements"/>
				<updated>2009-10-20T07:14:22Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Click on one of the links below to download the position statement.&lt;br /&gt;
Cancer Voices NSW publishes these short papers so that our views on the topics can be accessed easily.  Comments and suggestions are welcomed via the Discussion Page which follows.  &lt;br /&gt;
&amp;lt;br&amp;gt;&amp;lt;br&amp;gt;&lt;br /&gt;
*Best Practice Consumer Representation ([http://www.turtlelane.com.au/cancervoices/images/0/06/Best_Practice_Consumer_Representation.pdf PDF Version])&lt;br /&gt;
* ED Issues ([http://www.turtlelane.com.au/cancervoices/images/5/54/ED_issues.pdf PDF Version])&lt;br /&gt;
* Access to PET Scans ([http://www.turtlelane.com.au/cancervoices/images/6/6e/Access_to_PET_Scans.pdf PDF Version])&lt;br /&gt;
* Dying with Dignity &amp;amp; Control ([http://www.turtlelane.com.au/cancervoices/images/0/05/Dying_with_Dignity_%26_Control.pdf PDF Version})&lt;br /&gt;
* Emergency Dept Triage ([http://www.turtlelane.com.au/cancervoices/images/a/af/Emergency_Dept_Triage.pdf PDF Version])&lt;br /&gt;
* Pharma Feb 09 ([http://www.turtlelane.com.au/cancervoices/images/2/2a/Pharma_Feb_09.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
*Outstanding IPTAAS Issues (Isolated Patients’ Accommodation and Assistance Scheme) ([http://www.turtlelane.com.au/cancervoices/images/e/ee/Outstandingissues.pdf  PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Radiotherapy Issues ([http://www.turtlelane.com.au/cancervoices/images/6/6d/Radiotherapyissues.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Rural and Remote Cancer Issues ([http://www.turtlelane.com.au/cancervoices/images/0/08/Ruralandremoteissues.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Research Issues for Cancer Consumers ([http://www.turtlelane.com.au/cancervoices/images/b/b5/Researchissues.pdf PDF version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Access to Reliable Information ([http://www.turtlelane.com.au/cancervoices/images/1/18/Reliableinformation.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Complementary and Alternative Therapies in the Treatment of Cancer ([http://www.turtlelane.com.au/cancervoices/images/b/b3/Complimentaryandalternative.pdf PDF Version])&lt;br /&gt;
*Rehabilitation ([http://www.turtlelane.com.au/cancervoices/images/2/22/Rehab.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Discharge or Survivor Plans for Cancer Patients Post Treatment ([http://www.turtlelane.com.au/cancervoices/images/8/8f/Discharged.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Tailored Chemotherapy for Cancer Patients ([http://www.turtlelane.com.au/cancervoices/images/b/b6/Tailoredchemo.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Radiotherapy Sites in NSW ([http://www.turtlelane.com.au/cancervoices/images/a/a1/Radiotherapysites.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Comprehensive Cancer Centres for NSW ([http://www.turtlelane.com.au/cancervoices/images/3/3f/Cancercenters.pdf PDF Version])&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:Best_Practice_Consumer_Representation.pdf</id>
		<title>File:Best Practice Consumer Representation.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:Best_Practice_Consumer_Representation.pdf"/>
				<updated>2009-10-20T07:13:41Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: uploaded a new version of &amp;quot;File:Best Practice Consumer Representation.pdf&amp;quot;&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:Pharma_Feb_09.pdf</id>
		<title>File:Pharma Feb 09.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:Pharma_Feb_09.pdf"/>
				<updated>2009-10-20T07:11:49Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:Emergency_Dept_Triage.pdf</id>
		<title>File:Emergency Dept Triage.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:Emergency_Dept_Triage.pdf"/>
				<updated>2009-10-20T07:11:04Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:Dying_with_Dignity_%26_Control.pdf</id>
		<title>File:Dying with Dignity &amp; Control.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:Dying_with_Dignity_%26_Control.pdf"/>
				<updated>2009-10-20T07:10:18Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:Access_to_PET_Scans.pdf</id>
		<title>File:Access to PET Scans.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:Access_to_PET_Scans.pdf"/>
				<updated>2009-10-20T07:09:29Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:Best_Practice_Consumer_Representation.pdf</id>
		<title>File:Best Practice Consumer Representation.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:Best_Practice_Consumer_Representation.pdf"/>
				<updated>2009-10-20T07:08:25Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=File:ED_issues.pdf</id>
		<title>File:ED issues.pdf</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=File:ED_issues.pdf"/>
				<updated>2009-10-20T07:07:36Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_35_June</id>
		<title>Newsletter Issue 35 June</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_35_June"/>
				<updated>2009-10-15T10:39:28Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: /* Cancer Institute NSW – Consumer &amp;amp; Community */&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==CVN Committee News==&lt;br /&gt;
Your Executive Committee met on 4 March and 6 May.  Our next meeting is 9 June.  CVN members are welcome to make suggestions for consideration at these meetings.  We have picked up on the concern expressed via the ACS Reps Program and individual members about the poor experiences cancer patients are having when they present at Emergency Department of hospitals.  Your voices have been heard and we are onto it!&lt;br /&gt;
&lt;br /&gt;
We are always keen to meet CVN members who would like to participate in the work of the CVN Committee – the best way is to come to a meeting and see if what we do presses your buttons!&lt;br /&gt;
&lt;br /&gt;
We welcome new Committee member, Sharyn Owen.  &lt;br /&gt;
&lt;br /&gt;
===A cycling Team for CVN?===&lt;br /&gt;
At our March meeting, Grant Chellew spoke to us about a proposal for a Cancer Voices Cycling Team – a subset of the Sydney Cycling Club.  This could be a good awareness raising opportunity and may even add to our limited coffers.  The idea is based on the very successful Cancer Voices SA team which wears a smart Cancer Voices SA jersey, and became prominent during international cyclist and cancer survivor, Lance Armstrong’s recent visit.  Visit the CVSA website www.cancervoicessa.org.au to see a video clip of TV coverage, and the CV cyclists in action (photo page 4).&lt;br /&gt;
&lt;br /&gt;
===Annual Issues Survey &amp;amp; Donations Insert===&lt;br /&gt;
It’s that time of year again.  &lt;br /&gt;
Issues Survey: This newsletter will carry our Annual Survey regarding your issues – this is important to us as it contributes to advocacy on your behalf.  Pleas fill it in next time your Support Group meets, or as individual – extra pages can be attached – the more we hear from you, the better!&lt;br /&gt;
&lt;br /&gt;
*Donations:  It’s also time to ask for donations – the form is on the back of the Issues Survey.   CVN does not ask for membership fees, and does not accept money from the &lt;br /&gt;
pharmaceutical industry.  We manage to operate due to the generosity of our members, the free time and resources given by our Executive Committee and the considerable in kind assistance which the Cancer Council NSW provides.  The Cancer Institute NSW also contributes to some operations expenses, for which we are most grateful.  Anything beyond this means we can do more for people affected by cancer. &lt;br /&gt;
&lt;br /&gt;
===Prostate Cancer Support Groups===&lt;br /&gt;
We are inviting all prostate cancer support groups to swell &lt;br /&gt;
the voices of people affected by cancer, &lt;br /&gt;
particularly as their cancer is now the most diagnosed of them all.  &lt;br /&gt;
&lt;br /&gt;
===Website Update===&lt;br /&gt;
We mentioned our decision to build a new Cancer Voices NSW website on the Wiki Media platform.  The idea is to make it more manageable for us, and more interactive for our members and others.  You can view it, and start engaging in discussion, if you wish.  Each website page is followed by a Discussion Page where you will be able to tell us &lt;br /&gt;
directly about your issues, interests, suggestions, concerns etc.&lt;br /&gt;
&lt;br /&gt;
The new website will continue to offer all our Newsletters, Position Statements, Membership Application Form and&lt;br /&gt;
Request for Consumer Representative Form, as well as our &lt;br /&gt;
leaflets and other info about Cancer Voices NSW including  activities and advocacy.  Our thanks to Bob Jansen, CVN member and principal of Turtle Lane Studios. Bob is &lt;br /&gt;
patiently guiding us towards website independence .&lt;br /&gt;
&lt;br /&gt;
==&lt;br /&gt;
CONSUMER REPS IN ACTION&lt;br /&gt;
“Nothing about us without us!”==&lt;br /&gt;
===Update===&lt;br /&gt;
The voices are being heard via 61 Cancer Voices consumer reps, nominated to 119 committees, working parties and research projects for 28 separate organisations. &lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training===&lt;br /&gt;
Cancer Voices NSW recommends that anyone interested in taking part, speaking up, writing about their ideas or concerns, being a CVN consumer representative – in general joining the action to improve things for people affected by cancer — should sign up for some kind of advocacy training.  2009 is proving to be a very good year for the standard two-day “CAT” (see page 3) and the Research Training courses (27-28 August) with the Cancer Council NSW, an “upskilling” PIAC course and one for  Cancer Institute NSW consumer reps.  Email (mailto: info@cancervoices.org.au info@cancervoices.org.au) if you would like to be put on a waiting list for future courses, or sign up for those mentioned below.&lt;br /&gt;
&lt;br /&gt;
There has been quite a bit of training about in the last few months, and more to come in the second half of the year.  Our thanks as ever to the Cancer Council NSW for continuing to run these essential courses for people who would like to become CVN consumer reps – as well as undertake activities with the Cancer Council more directly.&lt;br /&gt;
&lt;br /&gt;
===Consumers Research Forum, 14 May===&lt;br /&gt;
Thirty consumers, the majority of whom were from Cancer Voices NSW and its member groups, took part in a half day Forum in Sydney on 14 May, hosted by the Cancer Council NSW at Westpac Place.  This was the result of our advocacy with the Cancer Council to seek the broader view on what consumers really want to have researched.  The outcome will inform the Cancer Council and other cancer research funding and developing organisations, by highlighting the kind &lt;br /&gt;
of research topics which people affected by cancer most want to see funded.  Both CVN and BCAG NSW contributed the results of their member surveys as starter points for discussion.  We hosted the five topic tables and reported back at morning’s end.  The outcome will be published in our September newsletter and on the website.&lt;br /&gt;
.  We hope this will become an &lt;br /&gt;
annual event and be emulated in other states as well.&lt;br /&gt;
&lt;br /&gt;
“While a lot of us would have sat back and felt sorry for &lt;br /&gt;
ourselves after being diagnosed, Mr Howe fought a good fight against the disease and used his experience to help &lt;br /&gt;
others that found themselves in a similar situation. Along with his loving wife Elsie, Mr Howe was a rock for local cancer patients in their hours of need and he lobbied politicians &lt;br /&gt;
to provide a better services for patients in the bush.&lt;br /&gt;
In a statement released by Dubbo Base Hospital nursing unit manager Margaret Ross, Mr Howe was described as a&lt;br /&gt;
gentleman and a friend and someone who could be found to give support and information to individual patients.&lt;br /&gt;
&lt;br /&gt;
That sentiment was echoed by local political leaders Greg Matthews, Dawn Fardell and Mark Coulton, who all knew of Mr Howe's tenacity and passion for helping local cancer &lt;br /&gt;
patients.&amp;quot;&lt;br /&gt;
&lt;br /&gt;
I should like to paraphrase a final line in the blog by &lt;br /&gt;
concurring with the view that &amp;quot;not only will Dubbo be a &lt;br /&gt;
poorer place for Don's passing, Cancer Voices NSW will also be poorer. None of us must let his good work fade.”&lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson &lt;br /&gt;
Honorary Secretary Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==RADIOTHERAPY CAMPAIGN UPDATE==&lt;br /&gt;
===Cancer Council NSW Helpline Radiotherapy Call - In ===&lt;br /&gt;
Throughout the month of March, the Cancer Council urged cancer patients and carers to call the Cancer Council NSW Helpline (13 11 20)and share their experience of &lt;br /&gt;
radiotherapy.The information gained will be used to help the Cancer Council to advocate for improving the system as a whole, so that it can better serve the needs of &lt;br /&gt;
radiotherapy patients in the future. The call-in was a success&lt;br /&gt;
with 267 people calling throughout the month. &lt;br /&gt;
A report of the findings will be released later in the year. &lt;br /&gt;
(Note:  Cancer Voices assisted in the promotion of the RT call-in and thanks its members who provided information to the Cancer Council NSW).&lt;br /&gt;
&lt;br /&gt;
===NSW Auditor-General’s Report on Radiotherapy &lt;br /&gt;
Services  ===&lt;br /&gt;
This report is sure to make the headlines and is expected in the second half of June (around 23 June, we understand). It was instigated on the initiative of the Cancer Council and Cancer Voices NSW, both organisations being very concerned for several years about the failure of NSW Health to plan for and fund radiotherapy services where they are needed – now and in the future.  Our efforts were always frustrated by the Department’s refusal to make available either the 2003-2006 State RT Services Plan (eventually viewed in 2008) or the &lt;br /&gt;
current 2007–2010 RT Services Plan.&lt;br /&gt;
&lt;br /&gt;
The NSW Auditor-General has investigated the situation across NSW, interviewing Cancer Voices members and others in the “hot spots” where RT services are either lacking or are not properly funded.  We look forward to welcoming the Report and its recommendations. &lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;Launch of the Radiotherapy Roadmap 20 May, 2009&amp;lt;/center&amp;gt;==&lt;br /&gt;
Cancer Voices took part in the Launch of Improving Radiotherapy –where to from here?  A Roadmap for the NSW Government. This seminal paper was developed by the Cancer Council, with assistance from leading radiation oncologists and Cancer Voices NSW.  It will be available on our new website and that of the Cancer Council. It fills the gap left by the non-release of the NSW Health’s Plan for RT Services in NSW, and shows the way to a statewide RT service which would make it possible for cancer patients to &lt;br /&gt;
get the RT they need. This publication is co-badged by &lt;br /&gt;
Cancer Voices NSW and the Cancer Council. Sally Crossing spoke for CVN’s views, as did Angela Bain from the Central Coast a cancer patient whose access and experience of &lt;br /&gt;
Radiotherapy was not what it should have been. The launch had good media coverage, with the possibility of an &lt;br /&gt;
investigative story to follow.  This is great progress and hopefully will increase the pressure for Government action to improve access to radiotherapy treatment for NSW cancer patients.  &lt;br /&gt;
&lt;br /&gt;
PS. The launch was reported by ABC TV, Channel 9, several &lt;br /&gt;
Radio city &amp;amp; regional stations and at [linkto:www.smh.com.au www.smh.com.au]&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices media release to the media on 20 May:==&lt;br /&gt;
&lt;br /&gt;
===RADIOTHERAPY SERVICES IN NSW – Where are they going?===&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW warmly welcomes the Cancer Council NSW’s new Roadmap for Improving Radiotherapy in NSW, launched today.&lt;br /&gt;
&lt;br /&gt;
“We were thrilled to work with the Cancer Council to produce a ‘map’ to bring NSW cancer services up to standard” said Sally Crossing AM, Chair of Cancer Voices NSW.  “Cancer patients in our state are not able to get the radiotherapy treatment they should have.  Yet radiotherapy is cost &lt;br /&gt;
effective and should be a major part of many cancer &lt;br /&gt;
patients’ treatment”.  &lt;br /&gt;
&lt;br /&gt;
The Roadmap recommends immediate relief solutions as well as longer-term infrastructure and workforce changes.  It &lt;br /&gt;
recognises our state’s gap in planning for cancer treatment, clearly lists the shortages and problems we face AND answers the question “Where to from here?”&lt;br /&gt;
&lt;br /&gt;
NSW Cancer patients demand that the NSW Government &lt;br /&gt;
responds positively and quickly, starting with the coming State Budget.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
===The Voices being heard===&lt;br /&gt;
*Submissions:  Cancer Voices made a submission to the Senate Genetics Inquiry and to the Health Technology Assessment Review (Dept of Health &amp;amp; Ageing), and contributed to that of the Garvan Research Institute.  Also to the &lt;br /&gt;
Consumers Health Forum Strategic Plan.   &lt;br /&gt;
*Speaking:  Cancer Voices reps spoke at the April CAT course, the Consumers Research Forum 14 May, the NSW Division of GPs Annual Conference, the UNSW Graduate &lt;br /&gt;
Policy Studies Program 5 May, &lt;br /&gt;
*Meetings: With the Acting Chief Cancer Officer, NSW, Prof Rob Sanson-Fisher, the Medical Oncology Group of Australia, the Royal College of Pathologists Australasia, Research with Respect (Pat Maddock form USA); Australian Clinical Trials Online; Chronic Illness Alliance; Clinical Trials NSW, Ian &lt;br /&gt;
Gawler Sydney presentation, NSW Opposition Health Think &lt;br /&gt;
Tank; Joint Executives – CC NSW &amp;amp; CVN, various CC NSW and CI NSW working parties.&lt;br /&gt;
*Events:  Farewell to Prof Jim Bishop at CI NSW, Cancer Council NSW Research Awards.&lt;br /&gt;
*Publications:  The report from the CVN – CC NSW Consumer Forum 2008 was published in full in Wongi Yabber Feb 2008.  Wongi Yabber is the newsletter of the Australian Cancer &lt;br /&gt;
Network and is read by most decision-makers in the cancer world.  Our Report summarised the consumer issues &lt;br /&gt;
identified for action by the November 2008 Consumer Forum.&lt;br /&gt;
*Media:  In response to comments around the publication of two major studies on PSA testing, CVN released a media statement.  (see page 8)&lt;br /&gt;
&lt;br /&gt;
CVN reps Sally Crossing, and Kathy Smith made themselves available for media response for the Launch of the Radiotherapy Roadmap on 20 May. &lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING AT STATE LEVEL?==&lt;br /&gt;
===Cancer Council NSW===&lt;br /&gt;
Involving consumers in research&lt;br /&gt;
The Cancer Council NSW reports “The Research Strategy and &lt;br /&gt;
Scientific Development Unit have spent some time in the first quarter meeting with their new researchers for 2009 to discuss the year ahead. Through these meetings Cancer Council NSW has been informing researchers about some of the activities that Cancer Voices NSW and Cancer Council NSW are doing to bring the voice of the consumer to cancer research. &lt;br /&gt;
&lt;br /&gt;
The key message from Cancer Council NSW has been that they value the involvement of consumers in the research grants program and intend to develop the relationship &lt;br /&gt;
between consumers, Cancer Council NSW and researchers over the coming year. &lt;br /&gt;
&lt;br /&gt;
The researchers have all been veryin activities such as the forthcoming Consumer Research Forum, as well as the continuing Consumer Research Training and Consumer Review Panel and are all very supportive of these initiatives.Cancer Pharmacogenomics research was first raised as a priority for Cancer Council NSW by Cancer Voices NSW consumer representatives at the Cancer Research Committee meeting held on 22 November 2006. A Research Program Grant in Cancer Pharmacogenomics was advertised widely. A grant will be awarded for a period of up to 5 years with support of up to $300,000 p.a. and successful applicants will be notified in time for research to commence early in 2010.&lt;br /&gt;
The assessment of the applications will not be until the second half of 2009 and Cancer Council NSW will&lt;br /&gt;
 request consumer participation in this process.”&lt;br /&gt;
&lt;br /&gt;
===Cancer Support Group Network Update  Cancer support groups:===&lt;br /&gt;
&lt;br /&gt;
 A guide to setting up and maintaining a group, has been revised and will be ready for distribution to all 275 support groups in NSW in early June. &lt;br /&gt;
&lt;br /&gt;
Another Cancer Support Group Leader training workshop is planned for Friday 6 November 2009 at Cancer Council &lt;br /&gt;
Woolloomooloo. Information and registration forms will be mailed with the release of the new Guide book.&lt;br /&gt;
&lt;br /&gt;
==Cancer Institute NSW==&lt;br /&gt;
===Professor Jim Bishop===&lt;br /&gt;
Prof Bishop concluded his time as Chief Cancer Officer and CEO at the Cancer Institute NSW at his farewell on 17 April 2009 and has now taken up his new position as Chief Medical Officer in the Federal Department of Health and Ageing. In the interim, Professor Rob Sanson-Fisher from the University of Newcastle will be Acting Chief Cancer Officer while the selection process is underway to find a permanent replacement for Prof Bishop.&lt;br /&gt;
&lt;br /&gt;
===CI-SCaT website===&lt;br /&gt;
The standard cancer treatment website received over 6 million hits in 2008 or over 512,000 per month.  Around 50,000 patient information sheets were downloaded.  A re-build of the IT platform will allow a higher level of reporting.&lt;br /&gt;
&lt;br /&gt;
===Cancer Research===&lt;br /&gt;
A substantive review of the cancer research program has been completed.  In total $110.6 million has been committed to cancer research from the Cancer Institute NSW since this program began. The research program has had a deliberate strategy to support prevention, clinical research, psycho-oncology and cancer control as well as basic cancer biology and provides evidence of substantial investment in people and infrastructure.&lt;br /&gt;
&lt;br /&gt;
===Cancer Information===&lt;br /&gt;
Dr Yequn Chen, previously the Director of Cancer &lt;br /&gt;
Surveillance at the Alberta Cancer Board has joined the Cancer Institute to be director of Cancer Information and &lt;br /&gt;
Registries.  &lt;br /&gt;
&lt;br /&gt;
The Chair in Cancer Epidemiology establishment process is progressing well with the University of Sydney.&lt;br /&gt;
&lt;br /&gt;
The major achievement has been the publication of the Cancer Incidence and Mortality Report 2006.  Other reports recently published or ready for publication include:&lt;br /&gt;
*Cancer Lives at Risk : Cancer 2007 — 2036&lt;br /&gt;
*Liver Cancer in NSW&lt;br /&gt;
*Oesophageal Cancer in NSW&lt;br /&gt;
*Prostate Cancer in NSW&lt;br /&gt;
*Kidney Cancer in NSW&lt;br /&gt;
&lt;br /&gt;
==BreastScreen==&lt;br /&gt;
The new $825,000 central BreastScreen Reading and Radiology Training and Education Centre was opened earlier this year by Minister Jodi McKay MP. The new facility provides &lt;br /&gt;
a superior digital mammography screen reading centre, a &lt;br /&gt;
centralised picture archiving and communications system (PACS) to be integrated with a new information system, and a Radiology Training, Research and Education Centre.&lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING NATIONALLY?==&lt;br /&gt;
===Good News Federal Budget===&lt;br /&gt;
&lt;br /&gt;
The federal Budget had a lot of good news for cancer. For details see Minsiter for Health, Nicola Roxon’s website&lt;br /&gt;
&lt;br /&gt;
The highlights of the Federal budget were as follows:&lt;br /&gt;
*New Sydney Cancer Centre			$100 m&lt;br /&gt;
*Garvan St Vincents				$ 70 m&lt;br /&gt;
*Ten Regional Cancer Centres			$650 m&lt;br /&gt;
*Cancer Drugs (Avastin, Sutent &amp;amp; Herceptin)	$600 m&lt;br /&gt;
*CanNET roll-out				$ 15 m&lt;br /&gt;
*Lung Cancer Care				$ 6.8 m&lt;br /&gt;
&lt;br /&gt;
==Government funds Cancer Genomic Research $27.5m===&lt;br /&gt;
&lt;br /&gt;
ED:  CVN has been waiting for this announcement and warmly welcomes it – with well-founded Pharmacogenomics cancer research in Australia, our access to effective cancer therapies will be speeded up.&lt;br /&gt;
&lt;br /&gt;
“The Australian Government, through the NHMRC, will provide $27.5 million over five years for research into pancreatic and ovarian cancer as its contribution to the International Cancer Genomics Consortium. That will be part of a total funding package of over $40 million.&lt;br /&gt;
&lt;br /&gt;
The Consortium is one of the most ambitious biomedical research efforts –and one of the most exciting international collaborations - since the Human Genome Project. It spans 24 countries, and is expected to deliver significant benefits &lt;br /&gt;
in detecting, preventing and treating many types of cancer. The aim is to understand in detail the changes in DNA that give rise to fifty of the world’s most common cancers. For cancer to occur, individual cells in our body suffer genetic mutations that, usually many years later, result in cancers. The Consortium will seek to work out what the initial events in cells are that lead to cancer. This genomic information will accelerate efforts to develop better ways of diagnosing, treating and preventing cancer.&lt;br /&gt;
&lt;br /&gt;
This is a truly international collaboration, where &lt;br /&gt;
Australia will be sharing research with other participating countries, including Canada, China, India, Singapore, the United Kingdom, and the United States. The partnership that I am announcing today is between the Australian Government through the NHMRC (and we are lucky that Professor Warwick Anderson, NHMRC CEO, sits on the executive of the ICGC), the University of Queensland, the NSW Cancer Council, Silicon Graphics and Applied Biosystems, a division &lt;br /&gt;
of Life Technologies Corporation.&lt;br /&gt;
&lt;br /&gt;
It is an outstanding example of how the Commonwealth and states, non-government agencies and the private sector, can work together to enable Australia to punch above its weight in the international fight against cancer. As a result, our world class researchers at the Institute for Molecular Bioscience here in Brisbane, the Garvan Institute in Sydney, and the Peter MacCallum Cancer Centre in Melbourne, will team&lt;br /&gt;
with collaborators from across the world. This will be &lt;br /&gt;
exciting, groundbreaking research, that promises to bring us significant steps further in understanding, preventing and treating cancer.”&lt;br /&gt;
(Excerpt from a recent Speech by the Hon Nicola Roxon MP, Minister for Health &amp;amp; Ageing)&lt;br /&gt;
&lt;br /&gt;
=== More sense from pathology reports===&lt;br /&gt;
ED: CVN has a long-standing interest in the readability, portability and comprehensiveness of our pathology reports.  We see them as our most important piece of information &lt;br /&gt;
about our own cancer, and encourage all cancer patients to make sure they have a copy in their own records.  CVN fully supports this project with the Royal College of Pathologists Australasia and stakeholders)&lt;br /&gt;
&lt;br /&gt;
In contrast to the US and UK, Australia has no national framework for the development and dissemination of &lt;br /&gt;
structured pathology reporting protocols.The National Round Table (NRT) was established to develop this national &lt;br /&gt;
framework in addition to a number of cancer specific &lt;br /&gt;
Structured Pathology Reporting (SPR) standards. (Sally &lt;br /&gt;
Crossing, for Cancer Voices NSW took part in the recent NRT.&lt;br /&gt;
 &lt;br /&gt;
The project is lead by the Royal College of Pathologists of Australasia (RCPA), the Cancer Institute NSW, and Cancer Australia. Expert, multidisciplinary committees have &lt;br /&gt;
developed five specific cancer-reporting protocols (Colorectal, Lung, Lymphoma, Melanoma and Prostate) and a generic Framework for the Development of SPR Protocols &lt;br /&gt;
&lt;br /&gt;
The aim of the project is to improve the completeness and usability of pathology reports for clinicians, and improve &lt;br /&gt;
decision support for cancer treatment. Other benefits include facilitating reporting skills for trainee or new pathologists and enabling data items to be extracted for electronic health records, clinical information systems, clinical audits, cancer notification and research. &lt;br /&gt;
&lt;br /&gt;
Structured reporting of cancer cases in anatomical pathology and haematology is likely to contribute to better cancer control through improvements in clinical management and treatment planning, cancer notification, registration and aggregated analyses, and research.&lt;br /&gt;
For further information about the project please visit (linkto: www.cancerinstitute.org.au/cancer_inst/profes/struct_path.html www.cancerinstitute.org.au/cancer_inst/profes/struct_path.html )&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices Australia==&lt;br /&gt;
Cancer Voices NSW has nominated a new representative to the Committee of Cancer Voices Australia (CVA), following John Newsom’s decide to step back recently. Kathy Smith has agreed to take our views to the forum for the Cancer Voices or\ganisations around Australia.  &lt;br /&gt;
&lt;br /&gt;
Sally Crossing, as interim CVN nominee and Chair of CVN, took part in a CVA teleconference on 16 April – from the back of a bus full of birders traveling to SW Queensland!  She had submitted a one page report of CVN activities as requested, and CVN comments on the CVA draft Charities &lt;br /&gt;
Policy.  CVA held a two day face-to face Committee &lt;br /&gt;
meeting in Sydney on 29 and 30 May.  CVN submitted &lt;br /&gt;
a briefing paper on CVA internal matters about which we are seeking agreement and clarification. &lt;br /&gt;
&lt;br /&gt;
The CVN Executive Committee was invited to join the other states’ CVA Representatives for dinner on 29 May, a good opportunity to met them and share CV experiences.&lt;br /&gt;
&lt;br /&gt;
==Interesting Bits and Pieces==&lt;br /&gt;
&lt;br /&gt;
===STATISTICAL ILLITERACY:  INFORMED CONSENT &amp;amp; SHARED DECISION-MAKING ===&lt;br /&gt;
(Ed - SC:  CVN  has long been concerned about the impact of statistical illiteracy, not only on ourselves, but particularly amongst those who advise us.  BCAG members Sue &lt;br /&gt;
Lockwood, Rosetta Manaszewicz and Sally Crossing, and more recently Nicola Bruce, have been writing and talking &lt;br /&gt;
about this conundrum for years.  We have been published (The Lancet) and asked to speak about it from the patient view. We asked John Conroy, a Cancer Voices NSW member&lt;br /&gt;
 and mathematician to give us the gist of this 96 page article which looks at the problem very comprehensively).&lt;br /&gt;
&lt;br /&gt;
An article titled “Helping doctors and patients make sense of health statistics” which appeared in a recent issue of the journal Psychological Science in the Public &lt;br /&gt;
interest (Gigerenzer et al, Vol 8. No 2 2008) argued that ‘many doctors, patients, journalists and politicians alike do&lt;br /&gt;
do not understand what health statistics mean or draw wrong &lt;br /&gt;
conclusions without noticing’&lt;br /&gt;
not understand what health statistics mean or draw wrong conclusions without noticing’ This raises concern for patients who rely on or need to interpret information given by health &lt;br /&gt;
professionals when they are asked to sign informed consent agreements or when they need to make decisions about their treatment. It also raises concern for patients who want to check the reliability of or interpret health statements presented by politicians or journalists and others. It’s suggested that the remedy lies in teaching statistics from early primary school and that this should also play a larger part in medical training. The paper emphasises that clinicians and ethics committees should ensure that informed consent is properly informed, and that clinicians must ensure that decision making shared with patients is based on clear understandings on both sides. &lt;br /&gt;
&lt;br /&gt;
It also points to a need for educators and curriculum makers to guarantee that school graduates are statistically literate and able to look critically at statements made by journalists, politicians, advertisers, the claims of gambling syndicates, and the like.  Above all, consumers must be persistent in their demands to know exactly the meaning of statistics&lt;br /&gt;
 being quoted to them.&lt;br /&gt;
&lt;br /&gt;
John Conroy OAM Cancer Voices NSW&lt;br /&gt;
Cancer Voices NSW Statement (23 March 09) &lt;br /&gt;
&lt;br /&gt;
===The PSA – Controversy:  Patient View===&lt;br /&gt;
Cancer Voices NSW, like many others organisations in the cancer world, has been waiting with interest for the &lt;br /&gt;
results of the two large, international randomised trials &lt;br /&gt;
looking at PSA as a screening tool.  The PSA test is used widely in Australia as a test for prostate cancer, now the most diagnosed cancer among Australians, but not for screening, due to lack of solid evidence.  There is concern that PSA testing leads to over-diagnosis and over-treatment, particularly as treatment often leads to major on-going physical problems for men.  &lt;br /&gt;
&lt;br /&gt;
We have been waiting in the hope that the PSA screening, and even the PSA testing, controversy would be &lt;br /&gt;
resolved by the results of the ERSPC (Europe) and the PLCO (USA) studies which were reported in last week’s, New &lt;br /&gt;
England Journal of Medicine.  The NEJM’s Editorial expresses doubt that we know enough to change policy either way, &lt;br /&gt;
as the new evidence (ERSPC) suggests that screening per se makes only a little difference to deaths.  Our interest also relates to the negative message the public may get about PSA tests (as opposed to screening) and the ramification these outcomes may have for the screening of other cancers. &lt;br /&gt;
&lt;br /&gt;
===Value of the patient perspective===&lt;br /&gt;
Cancer Voices must look at this from the cancer consumer view point- and particularly of the prostate cancer consumer – rather than that of researchers, epidemiologists, &lt;br /&gt;
clinicians or health economists.&lt;br /&gt;
&lt;br /&gt;
The big question for us is – how can the individual or his &lt;br /&gt;
doctor, know if he falls into the “harm” category – over-diagnosis and possible over-treatment, or not?  We &lt;br /&gt;
suggest this is still unanswerable.  The “desperate &lt;br /&gt;
dilemma” of treating or not treating remains, and few will be willing to do nothing.&lt;br /&gt;
&lt;br /&gt;
We also suggest that few individual men will want to wait for their prostate cancer to develop more compelling symptoms, with consequently less chance of effective treatment and recovery.  &lt;br /&gt;
&lt;br /&gt;
What is of most interest to prostate cancer patients is years of survival and quality of life, whereas the studies’ endpoint is death.  What cancer consumers want are studies that focus on less harmful treatment, better diagnostic tests and &lt;br /&gt;
better use of current tests and biopsies.  We call for &lt;br /&gt;
continued and increased research into identifying which cancers are the ones which are likely to require treatment, and greater specialisation in prostate cancer surgery so that nerve-sparing procedures might become more successful.&lt;br /&gt;
&lt;br /&gt;
We recognise the conundrums – the messages for screening policy, the cost-effectiveness of screening and / or testing, and the balance between benefits, survival and harms.  We especially ask that the consumer view is factored into the &lt;br /&gt;
decision-making processes, from national policy right through to individual levels.&lt;br /&gt;
&lt;br /&gt;
==From the newspapers:==&lt;br /&gt;
&lt;br /&gt;
===Public health: Australians refused insurance because of poor genes===&lt;br /&gt;
Australians have been refused insurance protection because of their genetic makeup, researchers have shown in the first study in the world to provide proof of genetic discrimination. Most cases were found to relate to life insurance.  In one instance, a man with a faulty gene linked to a greater risk of breast and prostate cancer was denied income protection and trauma insurance that would have let him claim if he developed other forms of cancer. The findings have led to renewed calls by experts for policies to ensure the &lt;br /&gt;
appropriate use of genetic test results by the insurance &lt;br /&gt;
industry.&lt;br /&gt;
&lt;br /&gt;
The Director of the Centre for Genetics Education at Royal North Shore Hospital, Kristine Barlow-Stewart, said the &lt;br /&gt;
research also showed consumers needed to be better informed about their rights.  Associate Professor Barlow-Stewart and her colleagues surveyed more than 1000 people who had attended clinical genetic services about their &lt;br /&gt;
experiences of discrimination.  An expert assessment panel should be established to advise on which tests are &lt;br /&gt;
sufficiently well understood to be used for insurance &lt;br /&gt;
purposes, she said. Under industry guidelines, insurers &lt;br /&gt;
cannot compel people to have a genetic test, but those who have been tested must reveal their results. It is only legal for companies to use this information if they can justify their decisions.   &lt;br /&gt;
&lt;br /&gt;
===Detection: Bowel cancer tests flawed from faulty kits===&lt;br /&gt;
The federal Government has been forced to defend its bowel cancer screening program after almost half a million people received a faulty bowel cancer testing kit and will need to take the test again.  It emerged yesterday that 475,000 &lt;br /&gt;
Japanese-made testing kits provided to Australians since December last year were not accurately diagnosing the disease.  The kits were provided to all 50-, 55- and 65-year olds as part of the Department of Health and Ageing’s National Bowel Cancer Screening program.  But while the department said last night that Australians could have “full confidence” in its self-testing cancer program, health experts said the regime had serious limitations and needed to be overhauled.  The Department of Health and Ageing released a statement, pledging that new test kits would be made available as a soon as possible. &lt;br /&gt;
&lt;br /&gt;
===Support: Cancer patients refused benefits===&lt;br /&gt;
Centrelink refused to pay sickness allowance to a man dying from cancer because he had set aside money to pay for his funeral and some work debts. The welfare agency also &lt;br /&gt;
denied the disability pension to a woman with advanced &lt;br /&gt;
leukaemia because there was a chance she might recover.&lt;br /&gt;
The cases of “Mr A” and “Mrs B” have been exposed in a Commonwealth Ombudsman report that examines how public servants assess claims from severely ill or dying patients.  The Ombudsman, Professor John McMillan, said the examples were among many that highlighted the problems that occurred when social security law was applied strictly.  “People can face onerous activity and/or reporting requirements for Newstart, youth or sickness allowances, during a time that is already difficult for them and their families,” he said yesterday.&lt;br /&gt;
&lt;br /&gt;
His report recommends a new benefit for patients who require lengthy treatment or recovery periods, and a list of severe conditions that would automatically qualify them for the payment.&lt;br /&gt;
&lt;br /&gt;
==IAN GAWLER in Sydney 12 May 2009==&lt;br /&gt;
Ian Gawler has been successfully running programs to help people with cancer and other serious diseases for 25 years&lt;br /&gt;
.I thought it was time I heard it for the horse’s mouth, so joined a big audience at Crows Nest, a Sydney suburb.  The self help concepts of following a plant based and fish diet,&lt;br /&gt;
meditating, finding meaning and purpose in life, accessing good information-providing groups, regular &lt;br /&gt;
D were exploreexercise and Vitamin d and commended.  More information about residential retreats, courses, books and CDs at [linkto: www.gawler.org] (SC).&lt;br /&gt;
&lt;br /&gt;
==Consumer Advocacy Training==&lt;br /&gt;
&lt;br /&gt;
===Sydney CAT Day – 17 April===&lt;br /&gt;
A special welcome to those 15 CAT attendees who are new CVN members  - we look forward to your input and  your views.  Kathy did an excellent job presenting on CVN, and her own Central Coast radiotherapy advocacy, on our behalf to the Sydney CAT course. Not only did the message go across loud and clear, but she attracted a record number of new CVN members – on the spot!  A new star in the CVN firmament, as well as an extremely effective CVN representative on the Central Coast.&lt;br /&gt;
&lt;br /&gt;
===PIAC &amp;quot;Upskilling&amp;quot; Day 6 April ===&lt;br /&gt;
&lt;br /&gt;
This was attended by four cancer consumer advocates, from Cancer Voices NSW and from the Breast Cancer Action Group NSW (some of us working with both).  Thanks to the Cancer Council NSW and to BCAG NSW for making this possible by paying our fees.&lt;br /&gt;
I found the day an excellent boost to my own skills – we all need this from time to time!  I recommend we make it an annual opportunity for our consumer representatives who would benefit from a refresher course.&lt;br /&gt;
The three sessions covered - Lobbying, Negotiation and &lt;br /&gt;
Media Influence - three vital areas for the successful &lt;br /&gt;
consumer advocate.  We were delighted to welcome &lt;br /&gt;
the PIAC trainer, who also runs the CAT programs, as a &lt;br /&gt;
Cancer Voices NSW member.  She has also run a very &lt;br /&gt;
successful CAT course for Cancer Voices SA, in Adelaide &lt;br /&gt;
recently.&lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training – to come===&lt;br /&gt;
 The Cancer Council will be offering three more Advocacy Training courses this year. The details are:&lt;br /&gt;
*21st &amp;amp; 22nd August - Advocacy Training for Aboriginal People - Location - Western Sydney. Applications are sought from Aboriginal people with an interest in becoming active in speaking out for better cancer prevention or treatment.&lt;br /&gt;
*25th &amp;amp; 26th September - General Advocacy Training - (Location TBA). Applications are sought from anyone with an interest in becoming active in speaking out for better cancer prevention or treatment. &lt;br /&gt;
*30th and 31st October - General Advocacy Training - (Location TBA). Applications are sought from anyone with an interest in becoming active in speaking out for better cancer prevention or treatment. &lt;br /&gt;
To apply, please head to [linkto:www.cancercouncil.com.au/advocates/workshops  www.cancercouncil.com.au/advocates/workshops]&amp;gt; or contact Katie Sheehan on 9334 1406 or [mailto:katies@nswcc.org.au katies@nswcc.org.au] to be sent an application in the mail.&lt;br /&gt;
&lt;br /&gt;
*Consumer Research Training — 27-28 August (see page 1) For an application form please contact Nysha Thomas on 02 9334 1993 or email [mailto:nyshat@nswcc.org.au nyshat@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
===Cancer Institute NSW – Consumer &amp;amp; Community ===&lt;br /&gt;
*Representatives Training 26 Feb &lt;br /&gt;
Nineteen people attended this valuable training workshop on 26 February 2009, over half of whom were Cancer Voices members.  The March CVN newsletter reported on the day.  Now a summary report has been uploaded to the Cancer Institute NSW website, please follow the link to download a copy: [http://www.cancerinstitute.org.au/cancer_inst/nswog/representatives/index.html http://www.cancerinstitute.org.au/cancer_inst/nswog/representatives/index.html]&lt;br /&gt;
We hope these courses will also become&lt;br /&gt;
&lt;br /&gt;
==CONSUMER REPS REPORTS==&lt;br /&gt;
&lt;br /&gt;
===ACS Report===&lt;br /&gt;
The Area Cancer Service Reps met by teleconference&lt;br /&gt;
on 7 April and 20 May.  We welcome two new ACS Reps – both in the Greater Southern Area Cancer Service – Julianne Whyte from Corowa and Michael Coley from Gunning. We are hoping that the Director of Greater Southern ACS will also welcome them onto the Area Cancer Management Group.&lt;br /&gt;
 &lt;br /&gt;
Main topics are the ongoing ones of access to palliative care&lt;br /&gt;
services and the issue of triage practices for cancer patients &lt;br /&gt;
presenting at Emergency Departments.These two meetings will inform the CVN report to the Next meeting of the Directors of Area Cancer Services (DACS) at CI NSW on 10 June.&lt;br /&gt;
&lt;br /&gt;
===Cancer patients at Emergency Departments (ED) ===&lt;br /&gt;
CVN is developing a Position Statement for information and &lt;br /&gt;
discussion.  We are also attempting to find out what the range of practices are within the Area Health Services, with a view to advocating for a best practice system to be put in place.  Thanks to those CVN members who have shared their ED experiences with us – more would be very helpful.  Annette Clement and James Butler have taken the lead on this issue for CVN. Please send info to [mailto:info@cancervoices.org.au info@cancervoices.org.au]&lt;br /&gt;
&lt;br /&gt;
==VALE Don Howe== &lt;br /&gt;
Don Howe, who within the constraints of constant treatment for myeloma was an active Cancer Voices NSW member based in the rural NSW city of Dubbo, passed away on Friday 24 April 2009, following a sudden heart attack.&lt;br /&gt;
&lt;br /&gt;
Don worked hard for rural cancer patients particularly in &lt;br /&gt;
relation to improving IPTAAS, which was the bane of his &lt;br /&gt;
existence, but he saw it as much worse for people who were &lt;br /&gt;
not able to agitate, in part because they did not know the &lt;br /&gt;
system, or they did not wish to offend the administering &lt;br /&gt;
bureaucrats.&lt;br /&gt;
&lt;br /&gt;
For some time Don was associated with the Western Region Advisory Network of the NSW Cancer Council, and he also reviewed a number of publications for the NSW Cancer Council from a consumer perspective, following nomination by Cancer Voices NSW to this task.&lt;br /&gt;
&lt;br /&gt;
Don and his wife Elsie migrated from the UK in 1966, and had been living in Dubbo&lt;br /&gt;
&lt;br /&gt;
I should like to quote what was said about Don in a blog &lt;br /&gt;
associated with the Dubbo Liberal the local Dubbo &lt;br /&gt;
newspaper, by Lynton Grace which expresses very well what we all felt about Don .&lt;br /&gt;
&lt;br /&gt;
Don &amp;amp; Elsie Howe&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
“While a lot of us would have sat back and felt sorry for&lt;br /&gt;
ourselves after being diagnosed, Mr Howe fought a good fight against the disease and used his experience to help others that found themselves in a similar situation. Along with his loving wife Elsie, Mr Howe was a rock for local cancer &lt;br /&gt;
patients in their hours of need and he lobbied politicians to provide a better services for patients in the bush.&lt;br /&gt;
In statement released by Dubbo Base Hospital nursing unit manager Margaret Ross, Mr Howe was described as a&lt;br /&gt;
gentleman and a friend and someone who could be found to give support and information to individual patients.&lt;br /&gt;
That sentiment was echoed by local political leaders Greg Matthews, Dawn Fardell and Mark Coulton, who all knew of Mr Howe's tenacity and passion for helping local cancer &lt;br /&gt;
patients.&amp;quot;I should like to paraphrase a final line in the &lt;br /&gt;
blog byconcurring with the view that &amp;quot;not only will Dubbo be a poorer place for Don's passing, Cancer Voices NSW will also be poorer. However none of us must let his good work fade.”&lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson &lt;br /&gt;
Honorary Secretary Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==Nothing About Us Without Us==&lt;br /&gt;
Lots of action to report this newsletter, particularly in the area of achievements by Cancer Voices NSW for &lt;br /&gt;
people affected by cancer. Several projects for which we had advocated are being realised this year:&lt;br /&gt;
&lt;br /&gt;
$300,000 grant by CC NSW to encourage a collaborative NSW research program in the field of Pharmacogenomics. This addresses CVN’s current top research priority.&lt;br /&gt;
The Medical Oncology Workforce study being undertaken by MOGA. CVN approached MOGA to gather information about medical oncologist workforce gaps in NSW, and now around Australia.&lt;br /&gt;
The Directory of Medical Oncologists: MOGA has also responded positively to this call from CVN.&lt;br /&gt;
A consumer friendly website enabling access to cancer clinical trials:  This has been developed and will be launched towards the end of the year. &lt;br /&gt;
The NSW Auditor-General’s investigation on NSW Health’s management of the state’s radiotherapy services report due 23 June .&lt;br /&gt;
A Roadmap to Improve NSW Radiotherapy Services, launched the Cancer Council NSW on 20 May.&lt;br /&gt;
Consumer Research Forum – to identify the research priorities of people affected by cancer, 14 May. &lt;br /&gt;
Comprehensive cancer centres for NSW – federal funding for the New Sydney Cancer Centre and some regional cancer centres.&lt;br /&gt;
&lt;br /&gt;
These activities address needs identified by the Cancer Voices Area Cancer Services Reps program, our reps working on Consumer Involvement in Research project, as well as from issues submitted by CVN members.  To see so much positive action and good outcomes makes us feel confident that we are on the right track in both content and partnership approach.  Please keep telling us what you need, helping us make those things become a reality.&lt;br /&gt;
&lt;br /&gt;
There remain many issues yet to have happy ending, but we will keep working on them.  The moral of the advocacy story seems to be good well-founded arguments, positive relationships, persistence and committed advocates. Cancer Voices NSW farewelled Prof Jim Bishop, CEO of the Cancer Institute NSW and Chief Cancer &lt;br /&gt;
Officer, as he left for Canberra (see page 5) in April.  We have very much appreciated Prof Bishop’s &lt;br /&gt;
understanding of the value of hearing the consumer perspective in all CI NSW activities which could impact on &lt;br /&gt;
people affected by cancer. We first met Prof Bishop when he was the Cancer Director at RPA, with a vision &lt;br /&gt;
to improve cancer services in this state. The establishment of the CI NSW in 2003 and its development since certainly effected that vision. We have advocated for a consumer to be part of the Selection Panel deciding on the new CEO, and hope that it will be someone from Cancer Voices NSW – the voice of people affected by cancer in this state.  Meanwhile, we look forward to working with the Acting CEO – Prof Rob Sanson–Fisher.&lt;br /&gt;
&lt;br /&gt;
Very best wishes to all our members and other interested readers!&lt;br /&gt;
Sally Crossing AM, Chair&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt;==Consumer Research Training==&amp;lt;/center&amp;gt;&lt;br /&gt;
&amp;lt;center&amp;gt;Interested in taking part in evaluating applications for research funding or for being a “Rep” on research &lt;br /&gt;
studies ? The next annual course will be held on&lt;br /&gt;
Thursday 27 &amp;amp; Friday 28 August 2009.&lt;br /&gt;
If you are interested in attending, please contact Nysha Thomas at the Cancer Council NSW &lt;br /&gt;
&lt;br /&gt;
Tel: 02 9334 1993 or by email to [mailto:nyshat@nswcc.org.au nyshat@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
==ONE THING IN COMMON==&lt;br /&gt;
Real People Tell their Stories of Living with &lt;br /&gt;
Cancer&lt;br /&gt;
&lt;br /&gt;
The second edition of the 1997 book is now available&lt;br /&gt;
&lt;br /&gt;
One Thing in Common is a collection of 53 stories from people whose lives have been touched by cancer.  These personal stories are a testament to resilience.  They aim to provide encouragement and hope to others facing the challenge of a cancer diagnosis.&lt;br /&gt;
&lt;br /&gt;
&amp;quot;When I was diagnosed with cancer and everything seemed so bleak reading the book  enabled me to see that many people do survive and there is plenty of hope&amp;quot;   &lt;br /&gt;
&lt;br /&gt;
Please send $20 to: Cansupport, &lt;br /&gt;
L2 Bldg. 36, Dept Clinical Oncology, &lt;br /&gt;
RNSH,  Pacific Highway,&lt;br /&gt;
ST LEONARDS NSW, 2065.  &amp;lt;/center&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==THANKS==&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt; Cancer Voices NSW greatly appreciates the kind assistance of the Cancer Council NSW in printing and posting our newsletters&lt;br /&gt;
&lt;br /&gt;
==CONTACT==&lt;br /&gt;
Cancer Voices NSW&lt;br /&gt;
A Voice for People Affected by Cancer&lt;br /&gt;
PO Box 5016 Greenwich 2065&lt;br /&gt;
Tel/Fax 02 9436 1755&lt;br /&gt;
Email: [mailto:nfo@cancervoices.org.au nfo@cancervoices.org.au]&lt;br /&gt;
Website: (linkto: www.cancervoices.org.au www.cancervoices.org.au)&lt;br /&gt;
Pancreatic Cancer Support&lt;br /&gt;
 &lt;br /&gt;
The support of the Cancer Council NSW of the NSW Pancreatic Network, www.pancreatic.net.au has enabled Australia to be chosen to lead the research into pancreatic cancer as a part of the International Cancer &lt;br /&gt;
Genome Consortium. This is a global project to genotype 50 cancers by highest incidence. Groundbreaking &lt;br /&gt;
research which has the potential to enable progress in screening and novel targeted therapies to name just a few of the benefits. This is an exciting project which will generate new areas of research and will, for &lt;br /&gt;
pancreatic cancer, significantly raise its research profile. We need people to register so that consumers can be involved in research directions and voicing their needs.&lt;br /&gt;
&lt;br /&gt;
For information on a range of support services available for people affected by pancreatic cancer; &lt;br /&gt;
patients, carers and family, please phone the Cancer Helpline: 131120&lt;br /&gt;
&lt;br /&gt;
GYNAE CANCER FORUM&lt;br /&gt;
Healing the, Body &amp;amp; Spirit&lt;br /&gt;
Thursday 18 June, 6.45 pm&lt;br /&gt;
SAN Cancer Support Centre, Sydney Adventist Hospital, 185 Fox Valley Rd, Wahroonga&lt;br /&gt;
Tel 9487 9061&lt;br /&gt;
Email:	mailto:Nerolie.Gate@sah.org.au Nerolie.Gate@sah.org.au]&amp;lt;/center&amp;gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_35_June</id>
		<title>Newsletter Issue 35 June</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletter_Issue_35_June"/>
				<updated>2009-10-15T10:39:07Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: /* Cancer Institute NSW – Consumer &amp;amp; Community */&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==CVN Committee News==&lt;br /&gt;
Your Executive Committee met on 4 March and 6 May.  Our next meeting is 9 June.  CVN members are welcome to make suggestions for consideration at these meetings.  We have picked up on the concern expressed via the ACS Reps Program and individual members about the poor experiences cancer patients are having when they present at Emergency Department of hospitals.  Your voices have been heard and we are onto it!&lt;br /&gt;
&lt;br /&gt;
We are always keen to meet CVN members who would like to participate in the work of the CVN Committee – the best way is to come to a meeting and see if what we do presses your buttons!&lt;br /&gt;
&lt;br /&gt;
We welcome new Committee member, Sharyn Owen.  &lt;br /&gt;
&lt;br /&gt;
===A cycling Team for CVN?===&lt;br /&gt;
At our March meeting, Grant Chellew spoke to us about a proposal for a Cancer Voices Cycling Team – a subset of the Sydney Cycling Club.  This could be a good awareness raising opportunity and may even add to our limited coffers.  The idea is based on the very successful Cancer Voices SA team which wears a smart Cancer Voices SA jersey, and became prominent during international cyclist and cancer survivor, Lance Armstrong’s recent visit.  Visit the CVSA website www.cancervoicessa.org.au to see a video clip of TV coverage, and the CV cyclists in action (photo page 4).&lt;br /&gt;
&lt;br /&gt;
===Annual Issues Survey &amp;amp; Donations Insert===&lt;br /&gt;
It’s that time of year again.  &lt;br /&gt;
Issues Survey: This newsletter will carry our Annual Survey regarding your issues – this is important to us as it contributes to advocacy on your behalf.  Pleas fill it in next time your Support Group meets, or as individual – extra pages can be attached – the more we hear from you, the better!&lt;br /&gt;
&lt;br /&gt;
*Donations:  It’s also time to ask for donations – the form is on the back of the Issues Survey.   CVN does not ask for membership fees, and does not accept money from the &lt;br /&gt;
pharmaceutical industry.  We manage to operate due to the generosity of our members, the free time and resources given by our Executive Committee and the considerable in kind assistance which the Cancer Council NSW provides.  The Cancer Institute NSW also contributes to some operations expenses, for which we are most grateful.  Anything beyond this means we can do more for people affected by cancer. &lt;br /&gt;
&lt;br /&gt;
===Prostate Cancer Support Groups===&lt;br /&gt;
We are inviting all prostate cancer support groups to swell &lt;br /&gt;
the voices of people affected by cancer, &lt;br /&gt;
particularly as their cancer is now the most diagnosed of them all.  &lt;br /&gt;
&lt;br /&gt;
===Website Update===&lt;br /&gt;
We mentioned our decision to build a new Cancer Voices NSW website on the Wiki Media platform.  The idea is to make it more manageable for us, and more interactive for our members and others.  You can view it, and start engaging in discussion, if you wish.  Each website page is followed by a Discussion Page where you will be able to tell us &lt;br /&gt;
directly about your issues, interests, suggestions, concerns etc.&lt;br /&gt;
&lt;br /&gt;
The new website will continue to offer all our Newsletters, Position Statements, Membership Application Form and&lt;br /&gt;
Request for Consumer Representative Form, as well as our &lt;br /&gt;
leaflets and other info about Cancer Voices NSW including  activities and advocacy.  Our thanks to Bob Jansen, CVN member and principal of Turtle Lane Studios. Bob is &lt;br /&gt;
patiently guiding us towards website independence .&lt;br /&gt;
&lt;br /&gt;
==&lt;br /&gt;
CONSUMER REPS IN ACTION&lt;br /&gt;
“Nothing about us without us!”==&lt;br /&gt;
===Update===&lt;br /&gt;
The voices are being heard via 61 Cancer Voices consumer reps, nominated to 119 committees, working parties and research projects for 28 separate organisations. &lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training===&lt;br /&gt;
Cancer Voices NSW recommends that anyone interested in taking part, speaking up, writing about their ideas or concerns, being a CVN consumer representative – in general joining the action to improve things for people affected by cancer — should sign up for some kind of advocacy training.  2009 is proving to be a very good year for the standard two-day “CAT” (see page 3) and the Research Training courses (27-28 August) with the Cancer Council NSW, an “upskilling” PIAC course and one for  Cancer Institute NSW consumer reps.  Email (mailto: info@cancervoices.org.au info@cancervoices.org.au) if you would like to be put on a waiting list for future courses, or sign up for those mentioned below.&lt;br /&gt;
&lt;br /&gt;
There has been quite a bit of training about in the last few months, and more to come in the second half of the year.  Our thanks as ever to the Cancer Council NSW for continuing to run these essential courses for people who would like to become CVN consumer reps – as well as undertake activities with the Cancer Council more directly.&lt;br /&gt;
&lt;br /&gt;
===Consumers Research Forum, 14 May===&lt;br /&gt;
Thirty consumers, the majority of whom were from Cancer Voices NSW and its member groups, took part in a half day Forum in Sydney on 14 May, hosted by the Cancer Council NSW at Westpac Place.  This was the result of our advocacy with the Cancer Council to seek the broader view on what consumers really want to have researched.  The outcome will inform the Cancer Council and other cancer research funding and developing organisations, by highlighting the kind &lt;br /&gt;
of research topics which people affected by cancer most want to see funded.  Both CVN and BCAG NSW contributed the results of their member surveys as starter points for discussion.  We hosted the five topic tables and reported back at morning’s end.  The outcome will be published in our September newsletter and on the website.&lt;br /&gt;
.  We hope this will become an &lt;br /&gt;
annual event and be emulated in other states as well.&lt;br /&gt;
&lt;br /&gt;
“While a lot of us would have sat back and felt sorry for &lt;br /&gt;
ourselves after being diagnosed, Mr Howe fought a good fight against the disease and used his experience to help &lt;br /&gt;
others that found themselves in a similar situation. Along with his loving wife Elsie, Mr Howe was a rock for local cancer patients in their hours of need and he lobbied politicians &lt;br /&gt;
to provide a better services for patients in the bush.&lt;br /&gt;
In a statement released by Dubbo Base Hospital nursing unit manager Margaret Ross, Mr Howe was described as a&lt;br /&gt;
gentleman and a friend and someone who could be found to give support and information to individual patients.&lt;br /&gt;
&lt;br /&gt;
That sentiment was echoed by local political leaders Greg Matthews, Dawn Fardell and Mark Coulton, who all knew of Mr Howe's tenacity and passion for helping local cancer &lt;br /&gt;
patients.&amp;quot;&lt;br /&gt;
&lt;br /&gt;
I should like to paraphrase a final line in the blog by &lt;br /&gt;
concurring with the view that &amp;quot;not only will Dubbo be a &lt;br /&gt;
poorer place for Don's passing, Cancer Voices NSW will also be poorer. None of us must let his good work fade.”&lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson &lt;br /&gt;
Honorary Secretary Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==RADIOTHERAPY CAMPAIGN UPDATE==&lt;br /&gt;
===Cancer Council NSW Helpline Radiotherapy Call - In ===&lt;br /&gt;
Throughout the month of March, the Cancer Council urged cancer patients and carers to call the Cancer Council NSW Helpline (13 11 20)and share their experience of &lt;br /&gt;
radiotherapy.The information gained will be used to help the Cancer Council to advocate for improving the system as a whole, so that it can better serve the needs of &lt;br /&gt;
radiotherapy patients in the future. The call-in was a success&lt;br /&gt;
with 267 people calling throughout the month. &lt;br /&gt;
A report of the findings will be released later in the year. &lt;br /&gt;
(Note:  Cancer Voices assisted in the promotion of the RT call-in and thanks its members who provided information to the Cancer Council NSW).&lt;br /&gt;
&lt;br /&gt;
===NSW Auditor-General’s Report on Radiotherapy &lt;br /&gt;
Services  ===&lt;br /&gt;
This report is sure to make the headlines and is expected in the second half of June (around 23 June, we understand). It was instigated on the initiative of the Cancer Council and Cancer Voices NSW, both organisations being very concerned for several years about the failure of NSW Health to plan for and fund radiotherapy services where they are needed – now and in the future.  Our efforts were always frustrated by the Department’s refusal to make available either the 2003-2006 State RT Services Plan (eventually viewed in 2008) or the &lt;br /&gt;
current 2007–2010 RT Services Plan.&lt;br /&gt;
&lt;br /&gt;
The NSW Auditor-General has investigated the situation across NSW, interviewing Cancer Voices members and others in the “hot spots” where RT services are either lacking or are not properly funded.  We look forward to welcoming the Report and its recommendations. &lt;br /&gt;
&lt;br /&gt;
==&amp;lt;center&amp;gt;Launch of the Radiotherapy Roadmap 20 May, 2009&amp;lt;/center&amp;gt;==&lt;br /&gt;
Cancer Voices took part in the Launch of Improving Radiotherapy –where to from here?  A Roadmap for the NSW Government. This seminal paper was developed by the Cancer Council, with assistance from leading radiation oncologists and Cancer Voices NSW.  It will be available on our new website and that of the Cancer Council. It fills the gap left by the non-release of the NSW Health’s Plan for RT Services in NSW, and shows the way to a statewide RT service which would make it possible for cancer patients to &lt;br /&gt;
get the RT they need. This publication is co-badged by &lt;br /&gt;
Cancer Voices NSW and the Cancer Council. Sally Crossing spoke for CVN’s views, as did Angela Bain from the Central Coast a cancer patient whose access and experience of &lt;br /&gt;
Radiotherapy was not what it should have been. The launch had good media coverage, with the possibility of an &lt;br /&gt;
investigative story to follow.  This is great progress and hopefully will increase the pressure for Government action to improve access to radiotherapy treatment for NSW cancer patients.  &lt;br /&gt;
&lt;br /&gt;
PS. The launch was reported by ABC TV, Channel 9, several &lt;br /&gt;
Radio city &amp;amp; regional stations and at [linkto:www.smh.com.au www.smh.com.au]&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices media release to the media on 20 May:==&lt;br /&gt;
&lt;br /&gt;
===RADIOTHERAPY SERVICES IN NSW – Where are they going?===&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW warmly welcomes the Cancer Council NSW’s new Roadmap for Improving Radiotherapy in NSW, launched today.&lt;br /&gt;
&lt;br /&gt;
“We were thrilled to work with the Cancer Council to produce a ‘map’ to bring NSW cancer services up to standard” said Sally Crossing AM, Chair of Cancer Voices NSW.  “Cancer patients in our state are not able to get the radiotherapy treatment they should have.  Yet radiotherapy is cost &lt;br /&gt;
effective and should be a major part of many cancer &lt;br /&gt;
patients’ treatment”.  &lt;br /&gt;
&lt;br /&gt;
The Roadmap recommends immediate relief solutions as well as longer-term infrastructure and workforce changes.  It &lt;br /&gt;
recognises our state’s gap in planning for cancer treatment, clearly lists the shortages and problems we face AND answers the question “Where to from here?”&lt;br /&gt;
&lt;br /&gt;
NSW Cancer patients demand that the NSW Government &lt;br /&gt;
responds positively and quickly, starting with the coming State Budget.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
===The Voices being heard===&lt;br /&gt;
*Submissions:  Cancer Voices made a submission to the Senate Genetics Inquiry and to the Health Technology Assessment Review (Dept of Health &amp;amp; Ageing), and contributed to that of the Garvan Research Institute.  Also to the &lt;br /&gt;
Consumers Health Forum Strategic Plan.   &lt;br /&gt;
*Speaking:  Cancer Voices reps spoke at the April CAT course, the Consumers Research Forum 14 May, the NSW Division of GPs Annual Conference, the UNSW Graduate &lt;br /&gt;
Policy Studies Program 5 May, &lt;br /&gt;
*Meetings: With the Acting Chief Cancer Officer, NSW, Prof Rob Sanson-Fisher, the Medical Oncology Group of Australia, the Royal College of Pathologists Australasia, Research with Respect (Pat Maddock form USA); Australian Clinical Trials Online; Chronic Illness Alliance; Clinical Trials NSW, Ian &lt;br /&gt;
Gawler Sydney presentation, NSW Opposition Health Think &lt;br /&gt;
Tank; Joint Executives – CC NSW &amp;amp; CVN, various CC NSW and CI NSW working parties.&lt;br /&gt;
*Events:  Farewell to Prof Jim Bishop at CI NSW, Cancer Council NSW Research Awards.&lt;br /&gt;
*Publications:  The report from the CVN – CC NSW Consumer Forum 2008 was published in full in Wongi Yabber Feb 2008.  Wongi Yabber is the newsletter of the Australian Cancer &lt;br /&gt;
Network and is read by most decision-makers in the cancer world.  Our Report summarised the consumer issues &lt;br /&gt;
identified for action by the November 2008 Consumer Forum.&lt;br /&gt;
*Media:  In response to comments around the publication of two major studies on PSA testing, CVN released a media statement.  (see page 8)&lt;br /&gt;
&lt;br /&gt;
CVN reps Sally Crossing, and Kathy Smith made themselves available for media response for the Launch of the Radiotherapy Roadmap on 20 May. &lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING AT STATE LEVEL?==&lt;br /&gt;
===Cancer Council NSW===&lt;br /&gt;
Involving consumers in research&lt;br /&gt;
The Cancer Council NSW reports “The Research Strategy and &lt;br /&gt;
Scientific Development Unit have spent some time in the first quarter meeting with their new researchers for 2009 to discuss the year ahead. Through these meetings Cancer Council NSW has been informing researchers about some of the activities that Cancer Voices NSW and Cancer Council NSW are doing to bring the voice of the consumer to cancer research. &lt;br /&gt;
&lt;br /&gt;
The key message from Cancer Council NSW has been that they value the involvement of consumers in the research grants program and intend to develop the relationship &lt;br /&gt;
between consumers, Cancer Council NSW and researchers over the coming year. &lt;br /&gt;
&lt;br /&gt;
The researchers have all been veryin activities such as the forthcoming Consumer Research Forum, as well as the continuing Consumer Research Training and Consumer Review Panel and are all very supportive of these initiatives.Cancer Pharmacogenomics research was first raised as a priority for Cancer Council NSW by Cancer Voices NSW consumer representatives at the Cancer Research Committee meeting held on 22 November 2006. A Research Program Grant in Cancer Pharmacogenomics was advertised widely. A grant will be awarded for a period of up to 5 years with support of up to $300,000 p.a. and successful applicants will be notified in time for research to commence early in 2010.&lt;br /&gt;
The assessment of the applications will not be until the second half of 2009 and Cancer Council NSW will&lt;br /&gt;
 request consumer participation in this process.”&lt;br /&gt;
&lt;br /&gt;
===Cancer Support Group Network Update  Cancer support groups:===&lt;br /&gt;
&lt;br /&gt;
 A guide to setting up and maintaining a group, has been revised and will be ready for distribution to all 275 support groups in NSW in early June. &lt;br /&gt;
&lt;br /&gt;
Another Cancer Support Group Leader training workshop is planned for Friday 6 November 2009 at Cancer Council &lt;br /&gt;
Woolloomooloo. Information and registration forms will be mailed with the release of the new Guide book.&lt;br /&gt;
&lt;br /&gt;
==Cancer Institute NSW==&lt;br /&gt;
===Professor Jim Bishop===&lt;br /&gt;
Prof Bishop concluded his time as Chief Cancer Officer and CEO at the Cancer Institute NSW at his farewell on 17 April 2009 and has now taken up his new position as Chief Medical Officer in the Federal Department of Health and Ageing. In the interim, Professor Rob Sanson-Fisher from the University of Newcastle will be Acting Chief Cancer Officer while the selection process is underway to find a permanent replacement for Prof Bishop.&lt;br /&gt;
&lt;br /&gt;
===CI-SCaT website===&lt;br /&gt;
The standard cancer treatment website received over 6 million hits in 2008 or over 512,000 per month.  Around 50,000 patient information sheets were downloaded.  A re-build of the IT platform will allow a higher level of reporting.&lt;br /&gt;
&lt;br /&gt;
===Cancer Research===&lt;br /&gt;
A substantive review of the cancer research program has been completed.  In total $110.6 million has been committed to cancer research from the Cancer Institute NSW since this program began. The research program has had a deliberate strategy to support prevention, clinical research, psycho-oncology and cancer control as well as basic cancer biology and provides evidence of substantial investment in people and infrastructure.&lt;br /&gt;
&lt;br /&gt;
===Cancer Information===&lt;br /&gt;
Dr Yequn Chen, previously the Director of Cancer &lt;br /&gt;
Surveillance at the Alberta Cancer Board has joined the Cancer Institute to be director of Cancer Information and &lt;br /&gt;
Registries.  &lt;br /&gt;
&lt;br /&gt;
The Chair in Cancer Epidemiology establishment process is progressing well with the University of Sydney.&lt;br /&gt;
&lt;br /&gt;
The major achievement has been the publication of the Cancer Incidence and Mortality Report 2006.  Other reports recently published or ready for publication include:&lt;br /&gt;
*Cancer Lives at Risk : Cancer 2007 — 2036&lt;br /&gt;
*Liver Cancer in NSW&lt;br /&gt;
*Oesophageal Cancer in NSW&lt;br /&gt;
*Prostate Cancer in NSW&lt;br /&gt;
*Kidney Cancer in NSW&lt;br /&gt;
&lt;br /&gt;
==BreastScreen==&lt;br /&gt;
The new $825,000 central BreastScreen Reading and Radiology Training and Education Centre was opened earlier this year by Minister Jodi McKay MP. The new facility provides &lt;br /&gt;
a superior digital mammography screen reading centre, a &lt;br /&gt;
centralised picture archiving and communications system (PACS) to be integrated with a new information system, and a Radiology Training, Research and Education Centre.&lt;br /&gt;
&lt;br /&gt;
==WHAT’S HAPPENING NATIONALLY?==&lt;br /&gt;
===Good News Federal Budget===&lt;br /&gt;
&lt;br /&gt;
The federal Budget had a lot of good news for cancer. For details see Minsiter for Health, Nicola Roxon’s website&lt;br /&gt;
&lt;br /&gt;
The highlights of the Federal budget were as follows:&lt;br /&gt;
*New Sydney Cancer Centre			$100 m&lt;br /&gt;
*Garvan St Vincents				$ 70 m&lt;br /&gt;
*Ten Regional Cancer Centres			$650 m&lt;br /&gt;
*Cancer Drugs (Avastin, Sutent &amp;amp; Herceptin)	$600 m&lt;br /&gt;
*CanNET roll-out				$ 15 m&lt;br /&gt;
*Lung Cancer Care				$ 6.8 m&lt;br /&gt;
&lt;br /&gt;
==Government funds Cancer Genomic Research $27.5m===&lt;br /&gt;
&lt;br /&gt;
ED:  CVN has been waiting for this announcement and warmly welcomes it – with well-founded Pharmacogenomics cancer research in Australia, our access to effective cancer therapies will be speeded up.&lt;br /&gt;
&lt;br /&gt;
“The Australian Government, through the NHMRC, will provide $27.5 million over five years for research into pancreatic and ovarian cancer as its contribution to the International Cancer Genomics Consortium. That will be part of a total funding package of over $40 million.&lt;br /&gt;
&lt;br /&gt;
The Consortium is one of the most ambitious biomedical research efforts –and one of the most exciting international collaborations - since the Human Genome Project. It spans 24 countries, and is expected to deliver significant benefits &lt;br /&gt;
in detecting, preventing and treating many types of cancer. The aim is to understand in detail the changes in DNA that give rise to fifty of the world’s most common cancers. For cancer to occur, individual cells in our body suffer genetic mutations that, usually many years later, result in cancers. The Consortium will seek to work out what the initial events in cells are that lead to cancer. This genomic information will accelerate efforts to develop better ways of diagnosing, treating and preventing cancer.&lt;br /&gt;
&lt;br /&gt;
This is a truly international collaboration, where &lt;br /&gt;
Australia will be sharing research with other participating countries, including Canada, China, India, Singapore, the United Kingdom, and the United States. The partnership that I am announcing today is between the Australian Government through the NHMRC (and we are lucky that Professor Warwick Anderson, NHMRC CEO, sits on the executive of the ICGC), the University of Queensland, the NSW Cancer Council, Silicon Graphics and Applied Biosystems, a division &lt;br /&gt;
of Life Technologies Corporation.&lt;br /&gt;
&lt;br /&gt;
It is an outstanding example of how the Commonwealth and states, non-government agencies and the private sector, can work together to enable Australia to punch above its weight in the international fight against cancer. As a result, our world class researchers at the Institute for Molecular Bioscience here in Brisbane, the Garvan Institute in Sydney, and the Peter MacCallum Cancer Centre in Melbourne, will team&lt;br /&gt;
with collaborators from across the world. This will be &lt;br /&gt;
exciting, groundbreaking research, that promises to bring us significant steps further in understanding, preventing and treating cancer.”&lt;br /&gt;
(Excerpt from a recent Speech by the Hon Nicola Roxon MP, Minister for Health &amp;amp; Ageing)&lt;br /&gt;
&lt;br /&gt;
=== More sense from pathology reports===&lt;br /&gt;
ED: CVN has a long-standing interest in the readability, portability and comprehensiveness of our pathology reports.  We see them as our most important piece of information &lt;br /&gt;
about our own cancer, and encourage all cancer patients to make sure they have a copy in their own records.  CVN fully supports this project with the Royal College of Pathologists Australasia and stakeholders)&lt;br /&gt;
&lt;br /&gt;
In contrast to the US and UK, Australia has no national framework for the development and dissemination of &lt;br /&gt;
structured pathology reporting protocols.The National Round Table (NRT) was established to develop this national &lt;br /&gt;
framework in addition to a number of cancer specific &lt;br /&gt;
Structured Pathology Reporting (SPR) standards. (Sally &lt;br /&gt;
Crossing, for Cancer Voices NSW took part in the recent NRT.&lt;br /&gt;
 &lt;br /&gt;
The project is lead by the Royal College of Pathologists of Australasia (RCPA), the Cancer Institute NSW, and Cancer Australia. Expert, multidisciplinary committees have &lt;br /&gt;
developed five specific cancer-reporting protocols (Colorectal, Lung, Lymphoma, Melanoma and Prostate) and a generic Framework for the Development of SPR Protocols &lt;br /&gt;
&lt;br /&gt;
The aim of the project is to improve the completeness and usability of pathology reports for clinicians, and improve &lt;br /&gt;
decision support for cancer treatment. Other benefits include facilitating reporting skills for trainee or new pathologists and enabling data items to be extracted for electronic health records, clinical information systems, clinical audits, cancer notification and research. &lt;br /&gt;
&lt;br /&gt;
Structured reporting of cancer cases in anatomical pathology and haematology is likely to contribute to better cancer control through improvements in clinical management and treatment planning, cancer notification, registration and aggregated analyses, and research.&lt;br /&gt;
For further information about the project please visit (linkto: www.cancerinstitute.org.au/cancer_inst/profes/struct_path.html www.cancerinstitute.org.au/cancer_inst/profes/struct_path.html )&lt;br /&gt;
&lt;br /&gt;
==Cancer Voices Australia==&lt;br /&gt;
Cancer Voices NSW has nominated a new representative to the Committee of Cancer Voices Australia (CVA), following John Newsom’s decide to step back recently. Kathy Smith has agreed to take our views to the forum for the Cancer Voices or\ganisations around Australia.  &lt;br /&gt;
&lt;br /&gt;
Sally Crossing, as interim CVN nominee and Chair of CVN, took part in a CVA teleconference on 16 April – from the back of a bus full of birders traveling to SW Queensland!  She had submitted a one page report of CVN activities as requested, and CVN comments on the CVA draft Charities &lt;br /&gt;
Policy.  CVA held a two day face-to face Committee &lt;br /&gt;
meeting in Sydney on 29 and 30 May.  CVN submitted &lt;br /&gt;
a briefing paper on CVA internal matters about which we are seeking agreement and clarification. &lt;br /&gt;
&lt;br /&gt;
The CVN Executive Committee was invited to join the other states’ CVA Representatives for dinner on 29 May, a good opportunity to met them and share CV experiences.&lt;br /&gt;
&lt;br /&gt;
==Interesting Bits and Pieces==&lt;br /&gt;
&lt;br /&gt;
===STATISTICAL ILLITERACY:  INFORMED CONSENT &amp;amp; SHARED DECISION-MAKING ===&lt;br /&gt;
(Ed - SC:  CVN  has long been concerned about the impact of statistical illiteracy, not only on ourselves, but particularly amongst those who advise us.  BCAG members Sue &lt;br /&gt;
Lockwood, Rosetta Manaszewicz and Sally Crossing, and more recently Nicola Bruce, have been writing and talking &lt;br /&gt;
about this conundrum for years.  We have been published (The Lancet) and asked to speak about it from the patient view. We asked John Conroy, a Cancer Voices NSW member&lt;br /&gt;
 and mathematician to give us the gist of this 96 page article which looks at the problem very comprehensively).&lt;br /&gt;
&lt;br /&gt;
An article titled “Helping doctors and patients make sense of health statistics” which appeared in a recent issue of the journal Psychological Science in the Public &lt;br /&gt;
interest (Gigerenzer et al, Vol 8. No 2 2008) argued that ‘many doctors, patients, journalists and politicians alike do&lt;br /&gt;
do not understand what health statistics mean or draw wrong &lt;br /&gt;
conclusions without noticing’&lt;br /&gt;
not understand what health statistics mean or draw wrong conclusions without noticing’ This raises concern for patients who rely on or need to interpret information given by health &lt;br /&gt;
professionals when they are asked to sign informed consent agreements or when they need to make decisions about their treatment. It also raises concern for patients who want to check the reliability of or interpret health statements presented by politicians or journalists and others. It’s suggested that the remedy lies in teaching statistics from early primary school and that this should also play a larger part in medical training. The paper emphasises that clinicians and ethics committees should ensure that informed consent is properly informed, and that clinicians must ensure that decision making shared with patients is based on clear understandings on both sides. &lt;br /&gt;
&lt;br /&gt;
It also points to a need for educators and curriculum makers to guarantee that school graduates are statistically literate and able to look critically at statements made by journalists, politicians, advertisers, the claims of gambling syndicates, and the like.  Above all, consumers must be persistent in their demands to know exactly the meaning of statistics&lt;br /&gt;
 being quoted to them.&lt;br /&gt;
&lt;br /&gt;
John Conroy OAM Cancer Voices NSW&lt;br /&gt;
Cancer Voices NSW Statement (23 March 09) &lt;br /&gt;
&lt;br /&gt;
===The PSA – Controversy:  Patient View===&lt;br /&gt;
Cancer Voices NSW, like many others organisations in the cancer world, has been waiting with interest for the &lt;br /&gt;
results of the two large, international randomised trials &lt;br /&gt;
looking at PSA as a screening tool.  The PSA test is used widely in Australia as a test for prostate cancer, now the most diagnosed cancer among Australians, but not for screening, due to lack of solid evidence.  There is concern that PSA testing leads to over-diagnosis and over-treatment, particularly as treatment often leads to major on-going physical problems for men.  &lt;br /&gt;
&lt;br /&gt;
We have been waiting in the hope that the PSA screening, and even the PSA testing, controversy would be &lt;br /&gt;
resolved by the results of the ERSPC (Europe) and the PLCO (USA) studies which were reported in last week’s, New &lt;br /&gt;
England Journal of Medicine.  The NEJM’s Editorial expresses doubt that we know enough to change policy either way, &lt;br /&gt;
as the new evidence (ERSPC) suggests that screening per se makes only a little difference to deaths.  Our interest also relates to the negative message the public may get about PSA tests (as opposed to screening) and the ramification these outcomes may have for the screening of other cancers. &lt;br /&gt;
&lt;br /&gt;
===Value of the patient perspective===&lt;br /&gt;
Cancer Voices must look at this from the cancer consumer view point- and particularly of the prostate cancer consumer – rather than that of researchers, epidemiologists, &lt;br /&gt;
clinicians or health economists.&lt;br /&gt;
&lt;br /&gt;
The big question for us is – how can the individual or his &lt;br /&gt;
doctor, know if he falls into the “harm” category – over-diagnosis and possible over-treatment, or not?  We &lt;br /&gt;
suggest this is still unanswerable.  The “desperate &lt;br /&gt;
dilemma” of treating or not treating remains, and few will be willing to do nothing.&lt;br /&gt;
&lt;br /&gt;
We also suggest that few individual men will want to wait for their prostate cancer to develop more compelling symptoms, with consequently less chance of effective treatment and recovery.  &lt;br /&gt;
&lt;br /&gt;
What is of most interest to prostate cancer patients is years of survival and quality of life, whereas the studies’ endpoint is death.  What cancer consumers want are studies that focus on less harmful treatment, better diagnostic tests and &lt;br /&gt;
better use of current tests and biopsies.  We call for &lt;br /&gt;
continued and increased research into identifying which cancers are the ones which are likely to require treatment, and greater specialisation in prostate cancer surgery so that nerve-sparing procedures might become more successful.&lt;br /&gt;
&lt;br /&gt;
We recognise the conundrums – the messages for screening policy, the cost-effectiveness of screening and / or testing, and the balance between benefits, survival and harms.  We especially ask that the consumer view is factored into the &lt;br /&gt;
decision-making processes, from national policy right through to individual levels.&lt;br /&gt;
&lt;br /&gt;
==From the newspapers:==&lt;br /&gt;
&lt;br /&gt;
===Public health: Australians refused insurance because of poor genes===&lt;br /&gt;
Australians have been refused insurance protection because of their genetic makeup, researchers have shown in the first study in the world to provide proof of genetic discrimination. Most cases were found to relate to life insurance.  In one instance, a man with a faulty gene linked to a greater risk of breast and prostate cancer was denied income protection and trauma insurance that would have let him claim if he developed other forms of cancer. The findings have led to renewed calls by experts for policies to ensure the &lt;br /&gt;
appropriate use of genetic test results by the insurance &lt;br /&gt;
industry.&lt;br /&gt;
&lt;br /&gt;
The Director of the Centre for Genetics Education at Royal North Shore Hospital, Kristine Barlow-Stewart, said the &lt;br /&gt;
research also showed consumers needed to be better informed about their rights.  Associate Professor Barlow-Stewart and her colleagues surveyed more than 1000 people who had attended clinical genetic services about their &lt;br /&gt;
experiences of discrimination.  An expert assessment panel should be established to advise on which tests are &lt;br /&gt;
sufficiently well understood to be used for insurance &lt;br /&gt;
purposes, she said. Under industry guidelines, insurers &lt;br /&gt;
cannot compel people to have a genetic test, but those who have been tested must reveal their results. It is only legal for companies to use this information if they can justify their decisions.   &lt;br /&gt;
&lt;br /&gt;
===Detection: Bowel cancer tests flawed from faulty kits===&lt;br /&gt;
The federal Government has been forced to defend its bowel cancer screening program after almost half a million people received a faulty bowel cancer testing kit and will need to take the test again.  It emerged yesterday that 475,000 &lt;br /&gt;
Japanese-made testing kits provided to Australians since December last year were not accurately diagnosing the disease.  The kits were provided to all 50-, 55- and 65-year olds as part of the Department of Health and Ageing’s National Bowel Cancer Screening program.  But while the department said last night that Australians could have “full confidence” in its self-testing cancer program, health experts said the regime had serious limitations and needed to be overhauled.  The Department of Health and Ageing released a statement, pledging that new test kits would be made available as a soon as possible. &lt;br /&gt;
&lt;br /&gt;
===Support: Cancer patients refused benefits===&lt;br /&gt;
Centrelink refused to pay sickness allowance to a man dying from cancer because he had set aside money to pay for his funeral and some work debts. The welfare agency also &lt;br /&gt;
denied the disability pension to a woman with advanced &lt;br /&gt;
leukaemia because there was a chance she might recover.&lt;br /&gt;
The cases of “Mr A” and “Mrs B” have been exposed in a Commonwealth Ombudsman report that examines how public servants assess claims from severely ill or dying patients.  The Ombudsman, Professor John McMillan, said the examples were among many that highlighted the problems that occurred when social security law was applied strictly.  “People can face onerous activity and/or reporting requirements for Newstart, youth or sickness allowances, during a time that is already difficult for them and their families,” he said yesterday.&lt;br /&gt;
&lt;br /&gt;
His report recommends a new benefit for patients who require lengthy treatment or recovery periods, and a list of severe conditions that would automatically qualify them for the payment.&lt;br /&gt;
&lt;br /&gt;
==IAN GAWLER in Sydney 12 May 2009==&lt;br /&gt;
Ian Gawler has been successfully running programs to help people with cancer and other serious diseases for 25 years&lt;br /&gt;
.I thought it was time I heard it for the horse’s mouth, so joined a big audience at Crows Nest, a Sydney suburb.  The self help concepts of following a plant based and fish diet,&lt;br /&gt;
meditating, finding meaning and purpose in life, accessing good information-providing groups, regular &lt;br /&gt;
D were exploreexercise and Vitamin d and commended.  More information about residential retreats, courses, books and CDs at [linkto: www.gawler.org] (SC).&lt;br /&gt;
&lt;br /&gt;
==Consumer Advocacy Training==&lt;br /&gt;
&lt;br /&gt;
===Sydney CAT Day – 17 April===&lt;br /&gt;
A special welcome to those 15 CAT attendees who are new CVN members  - we look forward to your input and  your views.  Kathy did an excellent job presenting on CVN, and her own Central Coast radiotherapy advocacy, on our behalf to the Sydney CAT course. Not only did the message go across loud and clear, but she attracted a record number of new CVN members – on the spot!  A new star in the CVN firmament, as well as an extremely effective CVN representative on the Central Coast.&lt;br /&gt;
&lt;br /&gt;
===PIAC &amp;quot;Upskilling&amp;quot; Day 6 April ===&lt;br /&gt;
&lt;br /&gt;
This was attended by four cancer consumer advocates, from Cancer Voices NSW and from the Breast Cancer Action Group NSW (some of us working with both).  Thanks to the Cancer Council NSW and to BCAG NSW for making this possible by paying our fees.&lt;br /&gt;
I found the day an excellent boost to my own skills – we all need this from time to time!  I recommend we make it an annual opportunity for our consumer representatives who would benefit from a refresher course.&lt;br /&gt;
The three sessions covered - Lobbying, Negotiation and &lt;br /&gt;
Media Influence - three vital areas for the successful &lt;br /&gt;
consumer advocate.  We were delighted to welcome &lt;br /&gt;
the PIAC trainer, who also runs the CAT programs, as a &lt;br /&gt;
Cancer Voices NSW member.  She has also run a very &lt;br /&gt;
successful CAT course for Cancer Voices SA, in Adelaide &lt;br /&gt;
recently.&lt;br /&gt;
&lt;br /&gt;
===Consumer Advocacy Training – to come===&lt;br /&gt;
 The Cancer Council will be offering three more Advocacy Training courses this year. The details are:&lt;br /&gt;
*21st &amp;amp; 22nd August - Advocacy Training for Aboriginal People - Location - Western Sydney. Applications are sought from Aboriginal people with an interest in becoming active in speaking out for better cancer prevention or treatment.&lt;br /&gt;
*25th &amp;amp; 26th September - General Advocacy Training - (Location TBA). Applications are sought from anyone with an interest in becoming active in speaking out for better cancer prevention or treatment. &lt;br /&gt;
*30th and 31st October - General Advocacy Training - (Location TBA). Applications are sought from anyone with an interest in becoming active in speaking out for better cancer prevention or treatment. &lt;br /&gt;
To apply, please head to [linkto:www.cancercouncil.com.au/advocates/workshops  www.cancercouncil.com.au/advocates/workshops]&amp;gt; or contact Katie Sheehan on 9334 1406 or [mailto:katies@nswcc.org.au katies@nswcc.org.au] to be sent an application in the mail.&lt;br /&gt;
&lt;br /&gt;
*Consumer Research Training — 27-28 August (see page 1) For an application form please contact Nysha Thomas on 02 9334 1993 or email [mailto:nyshat@nswcc.org.au nyshat@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
===Cancer Institute NSW – Consumer &amp;amp; Community ===&lt;br /&gt;
*Representatives Training 26 Feb &lt;br /&gt;
Nineteen people attended this valuable training workshop on 26 February 2009, over half of whom were Cancer Voices members.  The March CVN newsletter reported on the day.  Now a summary report has been uploaded to the Cancer Institute NSW website, please follow the link to download a copy: [http://www.cancerinstitute.org.au/cancer_inst/nswog/representatives/index.html :http://www.cancerinstitute.org.au/cancer_inst/nswog/representatives/index.html]&lt;br /&gt;
We hope these courses will also become&lt;br /&gt;
&lt;br /&gt;
==CONSUMER REPS REPORTS==&lt;br /&gt;
&lt;br /&gt;
===ACS Report===&lt;br /&gt;
The Area Cancer Service Reps met by teleconference&lt;br /&gt;
on 7 April and 20 May.  We welcome two new ACS Reps – both in the Greater Southern Area Cancer Service – Julianne Whyte from Corowa and Michael Coley from Gunning. We are hoping that the Director of Greater Southern ACS will also welcome them onto the Area Cancer Management Group.&lt;br /&gt;
 &lt;br /&gt;
Main topics are the ongoing ones of access to palliative care&lt;br /&gt;
services and the issue of triage practices for cancer patients &lt;br /&gt;
presenting at Emergency Departments.These two meetings will inform the CVN report to the Next meeting of the Directors of Area Cancer Services (DACS) at CI NSW on 10 June.&lt;br /&gt;
&lt;br /&gt;
===Cancer patients at Emergency Departments (ED) ===&lt;br /&gt;
CVN is developing a Position Statement for information and &lt;br /&gt;
discussion.  We are also attempting to find out what the range of practices are within the Area Health Services, with a view to advocating for a best practice system to be put in place.  Thanks to those CVN members who have shared their ED experiences with us – more would be very helpful.  Annette Clement and James Butler have taken the lead on this issue for CVN. Please send info to [mailto:info@cancervoices.org.au info@cancervoices.org.au]&lt;br /&gt;
&lt;br /&gt;
==VALE Don Howe== &lt;br /&gt;
Don Howe, who within the constraints of constant treatment for myeloma was an active Cancer Voices NSW member based in the rural NSW city of Dubbo, passed away on Friday 24 April 2009, following a sudden heart attack.&lt;br /&gt;
&lt;br /&gt;
Don worked hard for rural cancer patients particularly in &lt;br /&gt;
relation to improving IPTAAS, which was the bane of his &lt;br /&gt;
existence, but he saw it as much worse for people who were &lt;br /&gt;
not able to agitate, in part because they did not know the &lt;br /&gt;
system, or they did not wish to offend the administering &lt;br /&gt;
bureaucrats.&lt;br /&gt;
&lt;br /&gt;
For some time Don was associated with the Western Region Advisory Network of the NSW Cancer Council, and he also reviewed a number of publications for the NSW Cancer Council from a consumer perspective, following nomination by Cancer Voices NSW to this task.&lt;br /&gt;
&lt;br /&gt;
Don and his wife Elsie migrated from the UK in 1966, and had been living in Dubbo&lt;br /&gt;
&lt;br /&gt;
I should like to quote what was said about Don in a blog &lt;br /&gt;
associated with the Dubbo Liberal the local Dubbo &lt;br /&gt;
newspaper, by Lynton Grace which expresses very well what we all felt about Don .&lt;br /&gt;
&lt;br /&gt;
Don &amp;amp; Elsie Howe&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
“While a lot of us would have sat back and felt sorry for&lt;br /&gt;
ourselves after being diagnosed, Mr Howe fought a good fight against the disease and used his experience to help others that found themselves in a similar situation. Along with his loving wife Elsie, Mr Howe was a rock for local cancer &lt;br /&gt;
patients in their hours of need and he lobbied politicians to provide a better services for patients in the bush.&lt;br /&gt;
In statement released by Dubbo Base Hospital nursing unit manager Margaret Ross, Mr Howe was described as a&lt;br /&gt;
gentleman and a friend and someone who could be found to give support and information to individual patients.&lt;br /&gt;
That sentiment was echoed by local political leaders Greg Matthews, Dawn Fardell and Mark Coulton, who all knew of Mr Howe's tenacity and passion for helping local cancer &lt;br /&gt;
patients.&amp;quot;I should like to paraphrase a final line in the &lt;br /&gt;
blog byconcurring with the view that &amp;quot;not only will Dubbo be a poorer place for Don's passing, Cancer Voices NSW will also be poorer. However none of us must let his good work fade.”&lt;br /&gt;
&lt;br /&gt;
Sally Hodgkinson &lt;br /&gt;
Honorary Secretary Cancer Voices NSW&lt;br /&gt;
&lt;br /&gt;
==Nothing About Us Without Us==&lt;br /&gt;
Lots of action to report this newsletter, particularly in the area of achievements by Cancer Voices NSW for &lt;br /&gt;
people affected by cancer. Several projects for which we had advocated are being realised this year:&lt;br /&gt;
&lt;br /&gt;
$300,000 grant by CC NSW to encourage a collaborative NSW research program in the field of Pharmacogenomics. This addresses CVN’s current top research priority.&lt;br /&gt;
The Medical Oncology Workforce study being undertaken by MOGA. CVN approached MOGA to gather information about medical oncologist workforce gaps in NSW, and now around Australia.&lt;br /&gt;
The Directory of Medical Oncologists: MOGA has also responded positively to this call from CVN.&lt;br /&gt;
A consumer friendly website enabling access to cancer clinical trials:  This has been developed and will be launched towards the end of the year. &lt;br /&gt;
The NSW Auditor-General’s investigation on NSW Health’s management of the state’s radiotherapy services report due 23 June .&lt;br /&gt;
A Roadmap to Improve NSW Radiotherapy Services, launched the Cancer Council NSW on 20 May.&lt;br /&gt;
Consumer Research Forum – to identify the research priorities of people affected by cancer, 14 May. &lt;br /&gt;
Comprehensive cancer centres for NSW – federal funding for the New Sydney Cancer Centre and some regional cancer centres.&lt;br /&gt;
&lt;br /&gt;
These activities address needs identified by the Cancer Voices Area Cancer Services Reps program, our reps working on Consumer Involvement in Research project, as well as from issues submitted by CVN members.  To see so much positive action and good outcomes makes us feel confident that we are on the right track in both content and partnership approach.  Please keep telling us what you need, helping us make those things become a reality.&lt;br /&gt;
&lt;br /&gt;
There remain many issues yet to have happy ending, but we will keep working on them.  The moral of the advocacy story seems to be good well-founded arguments, positive relationships, persistence and committed advocates. Cancer Voices NSW farewelled Prof Jim Bishop, CEO of the Cancer Institute NSW and Chief Cancer &lt;br /&gt;
Officer, as he left for Canberra (see page 5) in April.  We have very much appreciated Prof Bishop’s &lt;br /&gt;
understanding of the value of hearing the consumer perspective in all CI NSW activities which could impact on &lt;br /&gt;
people affected by cancer. We first met Prof Bishop when he was the Cancer Director at RPA, with a vision &lt;br /&gt;
to improve cancer services in this state. The establishment of the CI NSW in 2003 and its development since certainly effected that vision. We have advocated for a consumer to be part of the Selection Panel deciding on the new CEO, and hope that it will be someone from Cancer Voices NSW – the voice of people affected by cancer in this state.  Meanwhile, we look forward to working with the Acting CEO – Prof Rob Sanson–Fisher.&lt;br /&gt;
&lt;br /&gt;
Very best wishes to all our members and other interested readers!&lt;br /&gt;
Sally Crossing AM, Chair&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt;==Consumer Research Training==&amp;lt;/center&amp;gt;&lt;br /&gt;
&amp;lt;center&amp;gt;Interested in taking part in evaluating applications for research funding or for being a “Rep” on research &lt;br /&gt;
studies ? The next annual course will be held on&lt;br /&gt;
Thursday 27 &amp;amp; Friday 28 August 2009.&lt;br /&gt;
If you are interested in attending, please contact Nysha Thomas at the Cancer Council NSW &lt;br /&gt;
&lt;br /&gt;
Tel: 02 9334 1993 or by email to [mailto:nyshat@nswcc.org.au nyshat@nswcc.org.au]&lt;br /&gt;
&lt;br /&gt;
==ONE THING IN COMMON==&lt;br /&gt;
Real People Tell their Stories of Living with &lt;br /&gt;
Cancer&lt;br /&gt;
&lt;br /&gt;
The second edition of the 1997 book is now available&lt;br /&gt;
&lt;br /&gt;
One Thing in Common is a collection of 53 stories from people whose lives have been touched by cancer.  These personal stories are a testament to resilience.  They aim to provide encouragement and hope to others facing the challenge of a cancer diagnosis.&lt;br /&gt;
&lt;br /&gt;
&amp;quot;When I was diagnosed with cancer and everything seemed so bleak reading the book  enabled me to see that many people do survive and there is plenty of hope&amp;quot;   &lt;br /&gt;
&lt;br /&gt;
Please send $20 to: Cansupport, &lt;br /&gt;
L2 Bldg. 36, Dept Clinical Oncology, &lt;br /&gt;
RNSH,  Pacific Highway,&lt;br /&gt;
ST LEONARDS NSW, 2065.  &amp;lt;/center&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==THANKS==&lt;br /&gt;
&lt;br /&gt;
&amp;lt;center&amp;gt; Cancer Voices NSW greatly appreciates the kind assistance of the Cancer Council NSW in printing and posting our newsletters&lt;br /&gt;
&lt;br /&gt;
==CONTACT==&lt;br /&gt;
Cancer Voices NSW&lt;br /&gt;
A Voice for People Affected by Cancer&lt;br /&gt;
PO Box 5016 Greenwich 2065&lt;br /&gt;
Tel/Fax 02 9436 1755&lt;br /&gt;
Email: [mailto:nfo@cancervoices.org.au nfo@cancervoices.org.au]&lt;br /&gt;
Website: (linkto: www.cancervoices.org.au www.cancervoices.org.au)&lt;br /&gt;
Pancreatic Cancer Support&lt;br /&gt;
 &lt;br /&gt;
The support of the Cancer Council NSW of the NSW Pancreatic Network, www.pancreatic.net.au has enabled Australia to be chosen to lead the research into pancreatic cancer as a part of the International Cancer &lt;br /&gt;
Genome Consortium. This is a global project to genotype 50 cancers by highest incidence. Groundbreaking &lt;br /&gt;
research which has the potential to enable progress in screening and novel targeted therapies to name just a few of the benefits. This is an exciting project which will generate new areas of research and will, for &lt;br /&gt;
pancreatic cancer, significantly raise its research profile. We need people to register so that consumers can be involved in research directions and voicing their needs.&lt;br /&gt;
&lt;br /&gt;
For information on a range of support services available for people affected by pancreatic cancer; &lt;br /&gt;
patients, carers and family, please phone the Cancer Helpline: 131120&lt;br /&gt;
&lt;br /&gt;
GYNAE CANCER FORUM&lt;br /&gt;
Healing the, Body &amp;amp; Spirit&lt;br /&gt;
Thursday 18 June, 6.45 pm&lt;br /&gt;
SAN Cancer Support Centre, Sydney Adventist Hospital, 185 Fox Valley Rd, Wahroonga&lt;br /&gt;
Tel 9487 9061&lt;br /&gt;
Email:	mailto:Nerolie.Gate@sah.org.au Nerolie.Gate@sah.org.au]&amp;lt;/center&amp;gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Form:GroupMembershipForm</id>
		<title>Form:GroupMembershipForm</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Form:GroupMembershipForm"/>
				<updated>2009-10-15T10:38:05Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&amp;lt;noinclude&amp;gt;&lt;br /&gt;
This is the 'GroupMembershipForm' form.&lt;br /&gt;
&lt;br /&gt;
To apply to join as a group, enter the group's name in the box below and press ''Add or Edit''. If a group with that name already exists, please use a different name (such as adding the state details, eg. ''The IceCream Factory (SA)'')&lt;br /&gt;
&lt;br /&gt;
To edit the application, enter the name you used to apply before and press ''Add or Edit''.&lt;br /&gt;
&lt;br /&gt;
You will be shown the form where you can enter or edit the group's details. When finished, press ''Submit'' to save the form, ''Cancel'' to forget your changes.&lt;br /&gt;
&lt;br /&gt;
 If you prefer to write out the application and send it in by mail, please click [http://www.turtlelane.com.au/cancervoices/images/2/2b/Membership_Application_Form.pdf here] to download the application form.&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
{{#forminput:GroupMembershipForm|50|Enter the group's name here|Submit|namespace=Membership}}&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&amp;lt;/noinclude&amp;gt;&amp;lt;includeonly&amp;gt;&lt;br /&gt;
{{{for template|GroupMembershipTemplate|label=Details of the group wishing to join. Fields marked with an asterix (*) are mandatory}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
! Type of Membership (*):&lt;br /&gt;
| {{{field|MembershipType|input type=radiobutton|mandatory|default=Member (Voting)}}}&lt;br /&gt;
|-&lt;br /&gt;
! Type of Group (*):&lt;br /&gt;
| {{{field|MembershipGroupType|input type=radiobutton|mandatory|default=Cancer consumer group}}}&lt;br /&gt;
|-&lt;br /&gt;
! Contact Person (*):&lt;br /&gt;
| {{{field|GroupContactPerson|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Position (*):&lt;br /&gt;
| {{{field|GroupPosition|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Name of the Organisation (*):&lt;br /&gt;
| {{{field|GroupNameOfOrganisation|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Postal Address (*):&lt;br /&gt;
| {{{field|GroupPostalAddress|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Suburb/Town (*):&lt;br /&gt;
| {{{field|GroupSuburb|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! City (if different to Suburb):&lt;br /&gt;
| {{{field|GroupCity}}}&lt;br /&gt;
|-&lt;br /&gt;
! State (*):&lt;br /&gt;
| {{{field|GroupState|input type=radiobutton|mandatory|default=NSW}}}&lt;br /&gt;
|-&lt;br /&gt;
!  Post Code (*):&lt;br /&gt;
| {{{field|GroupPostCode|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Daytime Phone (*):&lt;br /&gt;
| {{{field|GroupPhoneDay|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! After Hours Phone:&lt;br /&gt;
| {{{field|GroupPhoneEvening}}}&lt;br /&gt;
|-&lt;br /&gt;
! Mobile Phone:&lt;br /&gt;
| {{{field|GroupPhoneMobile}}}&lt;br /&gt;
|-&lt;br /&gt;
! Fax:&lt;br /&gt;
| {{{field|GroupFax}}}&lt;br /&gt;
|-&lt;br /&gt;
! Email:&lt;br /&gt;
| {{{field|GroupEmail}}}&lt;br /&gt;
|-&lt;br /&gt;
! Preferred Method of Contact (*):&lt;br /&gt;
| {{{field|PreferredMethodOfContact|input type=radiobutton|mandatory|default=Email}}}&lt;br /&gt;
|-&lt;br /&gt;
! Can We Contact You by Email and Phone:&lt;br /&gt;
| {{{field|ContactApproval}}}&lt;br /&gt;
|-&lt;br /&gt;
! Web Site:&lt;br /&gt;
| {{{field|GroupWebSite}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
{{{for template|SkillsTemplate|label=Please identify the skills the group can provide}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
! Administrative:&lt;br /&gt;
| {{{field|SkillsAdministrative}}}&lt;br /&gt;
|-&lt;br /&gt;
! Communications/Media:&lt;br /&gt;
| {{{field|SkillsCommunicationsMedia}}}&lt;br /&gt;
|-&lt;br /&gt;
! FundRaising:&lt;br /&gt;
| {{{field|SkillsFundRaising}}}&lt;br /&gt;
|-&lt;br /&gt;
! Newsletter/Web Site:&lt;br /&gt;
| {{{field|SkillsNewsletterWebSite}}}&lt;br /&gt;
|-&lt;br /&gt;
! Policy Development:&lt;br /&gt;
| {{{field|SkillsPolicyDevelopment}}}&lt;br /&gt;
|-&lt;br /&gt;
! Representational:&lt;br /&gt;
| {{{field|SkillsRepresentational}}}&lt;br /&gt;
|-&lt;br /&gt;
! Other:&lt;br /&gt;
| {{{field|SkillsOther}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
{{{for template|DonationsTemplate|label=Please provide the details of any donation the group can provide}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
! Donation Amount:&lt;br /&gt;
| {{{field|DonationsContributionsAmount}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
{{{for template|IndividualIssuesTemplate|label=Please provide details of any issues the group wants to raise}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
! Details of Issues:&lt;br /&gt;
| {{{field|IndividualIssues}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
{{{standard input|save|label=Submit}}} {{{standard input|cancel}}}&lt;br /&gt;
&amp;lt;/includeonly&amp;gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Form:IndividualMembershipForm</id>
		<title>Form:IndividualMembershipForm</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Form:IndividualMembershipForm"/>
				<updated>2009-10-15T10:37:35Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&amp;lt;noinclude&amp;gt;&lt;br /&gt;
This is the 'IndividualMembershipForm' form.&lt;br /&gt;
&lt;br /&gt;
To apply to join as an individual, enter your name in the box below and press ''Add or Edit''. If a person with your name already exists, please use a different name (such as adding a middle name or initial)&lt;br /&gt;
&lt;br /&gt;
To edit the application, enter the name you used to apply before and press ''Add or Edit''.&lt;br /&gt;
&lt;br /&gt;
You will be shown the form where you can enter or edit your details. When finished, press ''Submit'' to save the form, ''Cancel'' to forget your changes.&lt;br /&gt;
&lt;br /&gt;
 If you prefer to write out the application and send it in by mail, please click [http://www.turtlelane.com.au/cancervoices/images/2/2b/Membership_Application_Form.pdf here] to download the application form.&lt;br /&gt;
&lt;br /&gt;
{{#forminput:IndividualMembershipForm |25|Enter your name here|Submit|namespace=Membership}}&lt;br /&gt;
&lt;br /&gt;
&amp;lt;/noinclude&amp;gt;&amp;lt;includeonly&amp;gt;&lt;br /&gt;
{{{for template|IndividualMembershipTemplate|label=Please provide your details below. Fields marked with an asterix (*) are mandatory.}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
!Are you a Cancer Survivor:&lt;br /&gt;
| {{{field|IndividualCancerSurvivor}}}&lt;br /&gt;
|-&lt;br /&gt;
!Are you a Cancer Patient:&lt;br /&gt;
| {{{field|IndividualCancerPatient}}}&lt;br /&gt;
|-&lt;br /&gt;
!Are you a Family Member:&lt;br /&gt;
| {{{field|IndividualFamilyMember}}}&lt;br /&gt;
|-&lt;br /&gt;
!Are you a Carer:&lt;br /&gt;
| {{{field|IndividualCarer}}}&lt;br /&gt;
|-&lt;br /&gt;
! Other Category:&lt;br /&gt;
| {{{field|IndividualOther}}}&lt;br /&gt;
|-&lt;br /&gt;
! Type of Cancer (*):&lt;br /&gt;
| {{{field|IndividualTypeOfCancer|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Year Diagnosed (*):&lt;br /&gt;
| {{{field|IndividualYearsExperienced|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Title:&lt;br /&gt;
| {{{field|IndividualTitle|input type=radiobutton|default=Mr}}}&lt;br /&gt;
|-&lt;br /&gt;
! First Name (*):&lt;br /&gt;
| {{{field|IndividualFirstName|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Surname (*):&lt;br /&gt;
| {{{field|IndividualSurname|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Postal Address (*):&lt;br /&gt;
| {{{field|GroupPostalAddress|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Suburb/Town (*):&lt;br /&gt;
| {{{field|GroupSuburb|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! City:&lt;br /&gt;
| {{{field|GroupCity}}}&lt;br /&gt;
|-&lt;br /&gt;
! State (*):&lt;br /&gt;
| {{{field|GroupState|input type=radiobutton|mandatory|default=NSW}}}&lt;br /&gt;
|-&lt;br /&gt;
! Post Code (*):&lt;br /&gt;
| {{{field|GroupPostCode|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! Occupation:&lt;br /&gt;
| {{{field|IndividualOccupation}}}&lt;br /&gt;
|-&lt;br /&gt;
! Day Time Phone (*):&lt;br /&gt;
| {{{field|GroupPhoneDay|mandatory}}}&lt;br /&gt;
|-&lt;br /&gt;
! After Hours Phone:&lt;br /&gt;
| {{{field|GroupPhoneEvening}}}&lt;br /&gt;
|-&lt;br /&gt;
! Mobile Phone:&lt;br /&gt;
| {{{field|GroupPhoneMobile}}}&lt;br /&gt;
|-&lt;br /&gt;
! fax:&lt;br /&gt;
| {{{field|GroupFax}}}&lt;br /&gt;
|-&lt;br /&gt;
! Email:&lt;br /&gt;
| {{{field|GroupEmail}}}&lt;br /&gt;
|-&lt;br /&gt;
! Your Sex (*):&lt;br /&gt;
| {{{field|IndividualSex|input type=radiobutton|mandatory|default=Female}}}&lt;br /&gt;
|-&lt;br /&gt;
! Your Age Group:&lt;br /&gt;
| {{{field|IndividualAgeGroup|input type=radiobutton|default=18-29}}}&lt;br /&gt;
|-&lt;br /&gt;
! Preferred Method of Contact (*):&lt;br /&gt;
| {{{field|PreferredMethodOfContact|input type=radiobutton|mandatory|default=Email}}}&lt;br /&gt;
|-&lt;br /&gt;
! Can we Contact You by Email and Phone:&lt;br /&gt;
| {{{field|ContactApproval}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
{{{for template|SkillsTemplate|label=What skills could you contribute to Cancer Voices NSW}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
! Administrative:&lt;br /&gt;
| {{{field|SkillsAdministrative}}}&lt;br /&gt;
|-&lt;br /&gt;
! Communications/Media:&lt;br /&gt;
| {{{field|SkillsCommunicationsMedia}}}&lt;br /&gt;
|-&lt;br /&gt;
! FundRaising:&lt;br /&gt;
| {{{field|SkillsFundRaising}}}&lt;br /&gt;
|-&lt;br /&gt;
! Newsletter/Web Site:&lt;br /&gt;
| {{{field|SkillsNewsletterWebSite}}}&lt;br /&gt;
|-&lt;br /&gt;
! Policy Development:&lt;br /&gt;
| {{{field|SkillsPolicyDevelopment}}}&lt;br /&gt;
|-&lt;br /&gt;
! Representational:&lt;br /&gt;
| {{{field|SkillsRepresentational}}}&lt;br /&gt;
|-&lt;br /&gt;
! Other:&lt;br /&gt;
| {{{field|SkillsOther}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
{{{for template|DonationsTemplate|label=Please provide details of any donation you are prepared to make}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
! Donation Amount:&lt;br /&gt;
| {{{field|DonationsContributionsAmount}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
{{{for template|IndividualIssuesTemplate|label=Please provide details of any issues you wish to raise}}}&lt;br /&gt;
{| class=&amp;quot;formtable&amp;quot;&lt;br /&gt;
! Details of Issues:&lt;br /&gt;
| {{{field|IndividualIssues}}}&lt;br /&gt;
|}&lt;br /&gt;
{{{end template}}}&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
{{{standard input|save|label=Submit}}} {{{standard input|cancel}}}&lt;br /&gt;
&amp;lt;/includeonly&amp;gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=How_to_Join</id>
		<title>How to Join</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=How_to_Join"/>
				<updated>2009-10-15T10:37:01Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: /* Apply by Mail */&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==Membership Types==&lt;br /&gt;
Cancer Voices NSW offers two types of membership, '''''Group''''' or '''''Individual'''''.&lt;br /&gt;
&lt;br /&gt;
==Apply Online==&lt;br /&gt;
To apply to join, please select from the following:&lt;br /&gt;
&lt;br /&gt;
* [[Form:GroupMembershipForm|Group Membership]]&lt;br /&gt;
* [[Form:IndividualMembershipForm|Individual membership]]&lt;br /&gt;
&lt;br /&gt;
You will be asked to fill in a form. When you have filled in the form, please click ''Submit'' at the bottom of the screen. This will save your application.&lt;br /&gt;
&lt;br /&gt;
==Apply by Mail==&lt;br /&gt;
If you prefer to write out your application and send it in by mail, please click [http://www.turtlelane.com.au/cancervoices/images/2/2b/Membership_Application_Form.pdf here] to download the application form. The form contains our mailing address.&lt;br /&gt;
&lt;br /&gt;
==Consumer Training==&lt;br /&gt;
&lt;br /&gt;
The Cancer Consumer Advocacy Training course offers skills and confidence for cancer consumers interested in being a consumer representative or advocate on behalf of Cancer Voices NSW. It is held several times a year, for two days (Friday and Saturday) in metropolitan and regional centres. This is an initiative of Cancer Voices NSW and is provided by The Cancer Council NSW. An expression of interest form for the course can be sent to you by contacting the Cancer Council on 02 9334 1850 or via email [mailto:advocacy@nswcc.org.au advocacy@nswcc.org.au].&lt;br /&gt;
&lt;br /&gt;
==Donations==&lt;br /&gt;
Cancer Voices NSW is entirely dependent on donations to operate. There is no fee to join but we suggest a donation of $30 for groups and $10 for individuals. Any donation will help the VOICES to be heard. Please mail cheques or postal orders (Made payable to Cancer Voices NSW). If a receipt is required, please also enclose a stamped, self-addressed envelope. Tax deductible gift status is not available at this stage.&lt;br /&gt;
&lt;br /&gt;
==Request a Consumer Representative for your Organisation==&lt;br /&gt;
To request a consumer representative for your organisation, please fill in the [[Form:ConsumerRepForm|Consumer Representative form]].&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Issues_Leaflet</id>
		<title>Issues Leaflet</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Issues_Leaflet"/>
				<updated>2009-10-15T10:36:33Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;[[File:Leaflet_2.png]]&lt;br /&gt;
[[File:Leaflet1.png]]&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==Download a PDF copy==&lt;br /&gt;
If you would like to print a copy of this leaflet, please click '''[http://www.turtlelane.com.au/cancervoices/images/e/e0/Leaflet_Dec_08.pdf here]'''.&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Charter_of_Values</id>
		<title>Charter of Values</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Charter_of_Values"/>
				<updated>2009-10-15T10:35:50Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Cancer Voices NSW seeks adoption by the “cancer world” within which we operate, of a set of &lt;br /&gt;
principles which recognise and protect the value, dignity and voice of people affected by cancer. &lt;br /&gt;
This statement is inspired by Articles VII and VIII in the Charter of Paris Against Cancer of 4 February 2000. &lt;br /&gt;
International signatories, including consumers, were asked to take the principles home and turn them into practice. &lt;br /&gt;
This statement is our contribution toward that aim. &lt;br /&gt;
&lt;br /&gt;
Many stakeholders influence the cancer journey, especially people who have experienced cancer. We recognise &lt;br /&gt;
that these people are uniquely motivated to assist in decreasing the impact of the disease. We recognise the &lt;br /&gt;
value of cancer “consumers” (as in consumers of cancer services and research outcomes) as active partners in &lt;br /&gt;
the combined effort to reduce the impact of the disease, and will promote their participation, by adopting the &lt;br /&gt;
following principles: &lt;br /&gt;
&lt;br /&gt;
# All people affected by cancer, or potentially affected by cancer, are entitled to information concerning the disease, including its origin and stage, the current treatment options available and their side effects, the latest medical research results (including access to clinical trials), the costs and availability of the various treatment options plus their location, together with current standards for detection and diagnosis. &lt;br /&gt;
# All cancer patients are entitled to optimal care, medical or otherwise, irrespective of stage or type of disease. &lt;br /&gt;
# Open and collaborative communication between the patient and the various members of their multidisciplinary health team is essential. &lt;br /&gt;
#  A commitment to total patient well-being includes not only the provision of optimal medical care but also to the provision of current information and psychosocial support. &lt;br /&gt;
# The importance of quality of life is recognised, for all cancer patients and at all disease stages, from diagnosis to death, and in the development of new treatments, new medications and procedures and in patient care and support. &lt;br /&gt;
# People affected by the disease will be informed, organised and influential, and will have a role in the decision making processes impacting on them and at all levels. &lt;br /&gt;
# The professional health and scientific community &lt;br /&gt;
##recognises the benefit of an informed and active consumer community &lt;br /&gt;
##will facilitate consumer participation in the scientific process &lt;br /&gt;
##will ensurecomprehensive and balanced reporting of scientific and medical evidence &lt;br /&gt;
##will promote the scientific assessment of complementary and alternative therapies &lt;br /&gt;
# The medical, research, industryand policy communities will regard cancer consumer advocates as key strategic partners in all aspects of decision-making for prevention, detection, diagnosis, treatment, care, support and the direction of research.&lt;br /&gt;
&lt;br /&gt;
Download as PDF: [http://www.turtlelane.com.au/cancervoices/images/5/5b/Charter_leaflet.pdf Cancer Voices NSW charter]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements</id>
		<title>Position Statements</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Position_Statements"/>
				<updated>2009-10-15T10:35:16Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Click on one of the links below to download the position statement.&lt;br /&gt;
Cancer Voices NSW publishes these short papers so that our views on the topics can be accessed easily.  Comments and suggestions are welcomed via the Discussion Page which follows.  &lt;br /&gt;
&amp;lt;br&amp;gt;&amp;lt;br&amp;gt;&lt;br /&gt;
*Best Practice Consumer Representation (PDF Version)&lt;br /&gt;
*Outstanding IPTAAS Issues (Isolated Patients’ Accommodation and Assistance Scheme) ([http://www.turtlelane.com.au/cancervoices/images/e/ee/Outstandingissues.pdf  PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Radiotherapy Issues ([http://www.turtlelane.com.au/cancervoices/images/6/6d/Radiotherapyissues.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Rural and Remote Cancer Issues ([http://www.turtlelane.com.au/cancervoices/images/0/08/Ruralandremoteissues.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Research Issues for Cancer Consumers ([http://www.turtlelane.com.au/cancervoices/images/b/b5/Researchissues.pdf PDF version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Access to Reliable Information ([http://www.turtlelane.com.au/cancervoices/images/1/18/Reliableinformation.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Complementary and Alternative Therapies in the Treatment of Cancer ([http://www.turtlelane.com.au/cancervoices/images/b/b3/Complimentaryandalternative.pdf PDF Version])&lt;br /&gt;
*Rehabilitation ([http://www.turtlelane.com.au/cancervoices/images/2/22/Rehab.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Discharge or Survivor Plans for Cancer Patients Post Treatment ([http://www.turtlelane.com.au/cancervoices/images/8/8f/Discharged.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Tailored Chemotherapy for Cancer Patients ([http://www.turtlelane.com.au/cancervoices/images/b/b6/Tailoredchemo.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Radiotherapy Sites in NSW ([http://www.turtlelane.com.au/cancervoices/images/a/a1/Radiotherapysites.pdf PDF Version])&lt;br /&gt;
&amp;lt;br&amp;gt;&lt;br /&gt;
*Comprehensive Cancer Centres for NSW ([http://www.turtlelane.com.au/cancervoices/images/3/3f/Cancercenters.pdf PDF Version])&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletters</id>
		<title>Newsletters</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Newsletters"/>
				<updated>2009-10-15T10:34:32Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;==THANKS==&lt;br /&gt;
&lt;br /&gt;
Cancer Voices NSW greatly appreciates the kind assistance of the Cancer Council NSW in printing &amp;amp; posting our newsletters.  Editorial content is our own.&lt;br /&gt;
&lt;br /&gt;
==you can get PDF copies==&lt;br /&gt;
==2009 Newsletters==&lt;br /&gt;
* [[Newsletter Issue 36 September]] ( PDF Version)&lt;br /&gt;
*[[Newsletter Issue 35 June]] - ([http://www.turtlelane.com.au/cancervoices/images/1/11/Issue35June2009.pdf PDF Version])&lt;br /&gt;
** [http://www.turtlelane.com.au/cancervoices/images/a/a6/Issue35June09insert.pdf Issues Survey &amp;amp; Donation Form(PDF)]&lt;br /&gt;
*[[Newsletter Issue 34, March 2009|Newsletter Issue 34, March]] - ([http://www.turtlelane.com.au/cancervoices/images/7/75/2009-03_CVN_Newsletter_34.pdf PDF version])&lt;br /&gt;
&lt;br /&gt;
==2008 Newsletters==&lt;br /&gt;
* [[Issue 33 December 2008|Newsletter Issue 33 December 2008]] - ([http://www.turtlelane.com.au/cancervoices/images/c/c0/Issue33december2008.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 32 September 2008 - ([http://www.turtlelane.com.au/cancervoices/images/a/aa/Issue32september2008.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 31 June 2008 - ([http://www.turtlelane.com.au/cancervoices/images/1/19/Issue31june2008.pdf PDF Version])&lt;br /&gt;
* [[Newsletter Issue 30 March 2008]] - ([http://www.turtlelane.com.au/cancervoices/images/3/38/Issue30march2008.pdf PDF version])&lt;br /&gt;
** Insert Issue 30 March 2008 - ([http://www.turtlelane.com.au/cancervoices/images/1/1d/Issue30march2008_insert.pdf PDF version])&lt;br /&gt;
&lt;br /&gt;
==2007 Newsletters==&lt;br /&gt;
&lt;br /&gt;
* Newsletter Issue 29 December 2007 - ([http://www.turtlelane.com.au/cancervoices/images/3/3a/Issue29december2007.pdf PDF Version])&lt;br /&gt;
** AGM Nomination Form (Issue 29) - ([http://www.turtlelane.com.au/cancervoices/images/5/5a/Isssue29nominationformAGM.pdf PDF Version])&lt;br /&gt;
** Changes in Tax Law (Issue 28) - ([http://www.turtlelane.com.au/cancervoices/images/3/3b/Issue28_changes_in_tax_law.pdf PDF Version])&lt;br /&gt;
** NSW Cancer Support Groups (Issue 28) - ([http://www.turtlelane.com.au/cancervoices/images/7/73/Issue28_nsw_cancer_council_support_groups.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 28 September 2007 - ([http://www.turtlelane.com.au/cancervoices/images/7/7e/Issue28september2007.pdf PDF Version])&lt;br /&gt;
** Donations 2007 (Issue 27) - ([http://www.turtlelane.com.au/cancervoices/images/e/e9/Donations2007issue27.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 27 June 2007 - ([http://www.turtlelane.com.au/cancervoices/images/0/04/Issue27june2007.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 26 March 2007 - ([http://www.turtlelane.com.au/cancervoices/images/a/a2/Issue26march2007.pdf PDF Version])&lt;br /&gt;
* Annual Report 2006 - ([http://www.turtlelane.com.au/cancervoices/images/8/80/Annual_report_2006.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
==2006 Newsletters==&lt;br /&gt;
* Newsletter Issue 25 December 2006 - ([http://www.turtlelane.com.au/cancervoices/images/3/3a/Issue25december2006.pdf PDF Version])&lt;br /&gt;
** CVN leaflet (Issue 25) - ([http://www.turtlelane.com.au/cancervoices/images/1/11/Issue25_CVN_leaflet.pdf PDF Version])&lt;br /&gt;
** AGM Nomination Form (Issue 25) - ([http://www.turtlelane.com.au/cancervoices/images/f/ff/Issue24september2006.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 24 September 2006 - ([http://www.turtlelane.com.au/cancervoices/images/f/ff/Issue24september2006.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 23 June 2006 - ([http://www.turtlelane.com.au/cancervoices/images/a/ad/Issue23june2006.pdf PDF Version])&lt;br /&gt;
* Newsletter Isse 22 March 2006 - ([http://www.turtlelane.com.au/cancervoices/images/8/81/March2006issue22.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
==2005 Newsletters==&lt;br /&gt;
* Newsletter Issue 21 December 2005 - ([http://www.turtlelane.com.au/cancervoices/images/0/03/Issue21december2005.pdf  Version])&lt;br /&gt;
** CVN Priority Issues (Issue 21) - ([http://www.turtlelane.com.au/cancervoices/images/0/0c/Issue21_CVN_priority_issues_form.pdf PDF Version])&lt;br /&gt;
** AGM Nomination Form (Issue 21) - ([http://www.turtlelane.com.au/cancervoices/images/9/95/Issue21_AGM_nomination_form.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 20 September 2005 - ([http://www.turtlelane.com.au/cancervoices/images/0/03/Issue20september2005.pdf PDF Version])&lt;br /&gt;
** Complimentary Therapies Brochure (Issue 20) - ([http://www.turtlelane.com.au/cancervoices/images/5/5e/Issue20_complimentary_therapies_brochure.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 19 June 2005 - ([http://www.turtlelane.com.au/cancervoices/images/a/a4/Issue19june2005.pdf PDF Version])&lt;br /&gt;
** Insert (Issue 19) - ([http://www.turtlelane.com.au/cancervoices/images/f/fb/Issue19newsletter_insert_june2005.pdf PDF Version])&lt;br /&gt;
** Rural Survey (Issue 19) - ([http://www.turtlelane.com.au/cancervoices/images/d/db/Issue19_rural_survey_september2005.pdf PDF Version])&lt;br /&gt;
* [[Newsletter Issue 18 March 2005]] - ([http://www.turtlelane.com.au/cancervoices/images/9/93/Issue18march2005.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
==2004 Newsletters==&lt;br /&gt;
* Newsletter Issue 17 December 2004 - ([http://www.turtlelane.com.au/cancervoices/images/e/ea/Issue17december2004.pdf PDF Version])&lt;br /&gt;
** Nomination Form (Issue 17) - ([http://www.turtlelane.com.au/cancervoices/images/b/b7/Issue17nomination_form_december2004.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 16 September 2004 - ([http://www.turtlelane.com.au/cancervoices/images/5/56/Issue16september2004.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 15 June 2004 - ([http://www.turtlelane.com.au/cancervoices/images/3/3f/Issue15june2004.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 14 March 2004 - ([http://www.turtlelane.com.au/cancervoices/images/4/42/Issue14march2004.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
==2003 Newsletters==&lt;br /&gt;
* [[Newsletter Issue 13 March 2003]] - ([http://www.turtlelane.com.au/cancervoices/images/0/07/Issue13december2003.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 12 September 2003 - ([http://www.turtlelane.com.au/cancervoices/images/6/6d/Issue12september2003.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 11 June 2003 - ([http://www.turtlelane.com.au/cancervoices/images/c/c9/Issue11june2003.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 10 March  - ([http://www.turtlelane.com.au/cancervoices/images/7/78/Issue10march2003.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
==2002 Newsletters==&lt;br /&gt;
* Newsletter Issue 9 December 2002 - ([http://www.turtlelane.com.au/cancervoices/images/8/8e/Issue9december2002.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 8 September 2002 - ([http://www.turtlelane.com.au/cancervoices/images/d/d1/Issue8september2002.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 7 June 2002 - ([http://www.turtlelane.com.au/cancervoices/images/f/f6/Issue7june2002.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 6 March 2002 - ([http://www.turtlelane.com.au/cancervoices/images/3/33/Issue6march2002.pdf PDF Version])&lt;br /&gt;
* Newsletter Issue 5 February 2002 - ([http://www.turtlelane.com.au/cancervoices/images/a/ae/Issue5february2002.pdf PDF Version])&lt;br /&gt;
&lt;br /&gt;
==2001 Newsletters==&lt;br /&gt;
* [[Newsletter Issue 4, November 2001|Issue 4, November]] ([http://www.turtlelane.com.au/cancervoices/images/5/53/2001NewsletterIssue_4.pdf PDF Version])&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Useful_Links</id>
		<title>Useful Links</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Useful_Links"/>
				<updated>2009-10-14T07:31:16Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;='''LINKS for Information and Support'''=&lt;br /&gt;
&lt;br /&gt;
*[http://www.cancercouncil.com.au Cancer Council NSW]&lt;br /&gt;
*[http://www.cancerinstitute.org.au Cancer Institute NSW]&lt;br /&gt;
*Cancer Australia&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
='''The Cancer Voices Family'''=&lt;br /&gt;
*Cancer Voices Australia -for natioanl issues fpr peole affected by cancer&lt;br /&gt;
*Cancer Voices SA&lt;br /&gt;
*Cancer Voices WA&lt;br /&gt;
*Cancer Voices VIC&lt;br /&gt;
*Cancer Voces QLD&lt;br /&gt;
*Cancer Voices TAS&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
='''Cancer Voices NSW Member Groups''' (with websites= &lt;br /&gt;
*Breast Cancer Action Group NSW&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Useful_Links</id>
		<title>Useful Links</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Useful_Links"/>
				<updated>2009-10-14T07:28:05Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;='''LINKS for Information and Support'''=&lt;br /&gt;
&lt;br /&gt;
*[http://www.cancercouncil.com.au Cancer Council NSW]&lt;br /&gt;
*Cancer Institute NSW&lt;br /&gt;
*Cancer Australia&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
='''The Cancer Voices Family'''=&lt;br /&gt;
*Cancer Voices Australia -for natioanl issues fpr peole affected by cancer&lt;br /&gt;
*Cancer Voices SA&lt;br /&gt;
*Cancer Voices WA&lt;br /&gt;
*Cancer Voices VIC&lt;br /&gt;
*Cancer Voces QLD&lt;br /&gt;
*Cancer Voices TAS&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
='''Cancer Voices NSW Member Groups''' (with websites= &lt;br /&gt;
*Breast Cancer Action Group NSW&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Useful_Links</id>
		<title>Useful Links</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Useful_Links"/>
				<updated>2009-10-14T07:27:10Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;='''LINKS for Information and Support'''=&lt;br /&gt;
&lt;br /&gt;
*[http://www.cancercouncil.org.au Cancer Council NSW]&lt;br /&gt;
*Cancer Institute NSW&lt;br /&gt;
*Cancer Australia&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
='''The Cancer Voices Family'''=&lt;br /&gt;
*Cancer Voices Australia -for natioanl issues fpr peole affected by cancer&lt;br /&gt;
*Cancer Voices SA&lt;br /&gt;
*Cancer Voices WA&lt;br /&gt;
*Cancer Voices VIC&lt;br /&gt;
*Cancer Voces QLD&lt;br /&gt;
*Cancer Voices TAS&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
='''Cancer Voices NSW Member Groups''' (with websites= &lt;br /&gt;
*Breast Cancer Action Group NSW&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh8</id>
		<title>User:Sallyh8</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh8"/>
				<updated>2009-10-01T02:02:28Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Created page with 'A link to the Special Pages * Special:SpecialPages  ==Membership Pages Most Recently Added or Edited== &amp;lt;DPL&amp;gt;   category = Membership   ordermethod=lastedit   addeditdate=true...'&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Consumer Representative Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = ConsumerRepresentative&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==A link to the Membership area==&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==A link to the Consumer Representative area==&lt;br /&gt;
* [[:Category:ConsumerRepresentative]]&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:How_to_Join</id>
		<title>Talk:How to Join</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:How_to_Join"/>
				<updated>2009-09-28T20:52:31Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Blanked the page&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Cancervoices_talk:About</id>
		<title>Cancervoices talk:About</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Cancervoices_talk:About"/>
				<updated>2009-09-28T20:51:55Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Blanked the page&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW</id>
		<title>Talk:Cancer Voices NSW</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=Talk:Cancer_Voices_NSW"/>
				<updated>2009-09-28T20:51:08Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: Blanked the page&lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc</id>
		<title>User:Sallyc</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc"/>
				<updated>2009-09-16T10:11:50Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Editing the sidebar/navigation&lt;br /&gt;
* [[MediaWiki:Sidebar]]&lt;br /&gt;
&lt;br /&gt;
A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Consumer Representative Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = ConsumerRepresentative&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==A link to the Membership area==&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==A link to the Consumer Representative area==&lt;br /&gt;
* [[:Category:ConsumerRepresentative]]&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh</id>
		<title>User:Sallyh</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh"/>
				<updated>2009-09-16T10:11:30Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Consumer Representative Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = ConsumerRepresentative&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==A link to the Membership area==&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==A link to the Consumer Representative area==&lt;br /&gt;
* [[:Category:ConsumerRepresentative]]&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh</id>
		<title>User:Sallyh</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh"/>
				<updated>2009-09-16T10:08:16Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Consumer Representative Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = ConsumerRepresentative&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==A link to the Membership area==&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==A link to the Consumer Representative area==&lt;br /&gt;
* [[ :Category:ConsumerRepresentative]]&lt;br /&gt;
&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc</id>
		<title>User:Sallyc</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc"/>
				<updated>2009-09-16T10:08:00Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Editing the sidebar/navigation&lt;br /&gt;
* [[MediaWiki:Sidebar]]&lt;br /&gt;
&lt;br /&gt;
A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Consumer Representative Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = ConsumerRepresentative&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==A link to the Membership area==&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==A link to the Consumer Representative area==&lt;br /&gt;
* [[ :Category:ConsumerRepresentative]]&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc</id>
		<title>User:Sallyc</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc"/>
				<updated>2009-09-16T10:06:38Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Editing the sidebar/navigation&lt;br /&gt;
* [[MediaWiki:Sidebar]]&lt;br /&gt;
&lt;br /&gt;
A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
==Consumer Representative Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = ConsumerRepresentative&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
A link to the Membership area&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
Category:ConsumerRepresentative&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc</id>
		<title>User:Sallyc</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc"/>
				<updated>2009-09-11T03:46:57Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Editing the sidebar/navigation&lt;br /&gt;
* [[MediaWiki:Sidebar]]&lt;br /&gt;
&lt;br /&gt;
A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
A link to the Membership area&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh</id>
		<title>User:Sallyh</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh"/>
				<updated>2009-09-11T03:46:19Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Membership Pages Most Recently Added or Edited==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
A link to the Membership area&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh</id>
		<title>User:Sallyh</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyh"/>
				<updated>2009-09-11T03:44:25Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Pages Most Recently Added or Edited Memberships==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
A link to the Membership area&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	<entry>
		<id>http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc</id>
		<title>User:Sallyc</title>
		<link rel="alternate" type="text/html" href="http://www.turtlelane.com.au/cancervoices/index.php?title=User:Sallyc"/>
				<updated>2009-09-11T03:43:50Z</updated>
		
		<summary type="html">&lt;p&gt;Bobj: &lt;/p&gt;
&lt;hr /&gt;
&lt;div&gt;Editing the sidebar/navigation&lt;br /&gt;
* [[MediaWiki:Sidebar]]&lt;br /&gt;
&lt;br /&gt;
A link to the Special Pages&lt;br /&gt;
* [[Special:SpecialPages]]&lt;br /&gt;
&lt;br /&gt;
==Pages Most Recently Added or Edited Memberships==&lt;br /&gt;
&amp;lt;DPL&amp;gt;&lt;br /&gt;
  category = Membership&lt;br /&gt;
  ordermethod=lastedit&lt;br /&gt;
  addeditdate=true&lt;br /&gt;
  order=descending&lt;br /&gt;
  addlasteditor=true&lt;br /&gt;
&amp;lt;/DPL&amp;gt;&lt;br /&gt;
&lt;br /&gt;
A link to the Membership area&lt;br /&gt;
* [[:Category:Membership]]&lt;br /&gt;
&lt;br /&gt;
==Glossary Entry==&lt;br /&gt;
Create a new glossary entry&lt;br /&gt;
* [[Form:GlossaryForm]]&lt;br /&gt;
&lt;br /&gt;
[[Template:Newsletter template|Newsletter template]]&lt;/div&gt;</summary>
		<author><name>Bobj</name></author>	</entry>

	</feed>
