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Newsletter February 2005

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February 2005

Welcome to the first issue of CancerVOICES News. We started CancerVOICES in July 2004 to give a voice to people affected by cancer. As patients and as caregivers we believe in improving cancer services by developing a partnership between health professionals and us. We are working to ensure that all cancer patients have access to excellent health treatment and care. To do this, we advocate at policy making level and act where invited in a consumer/user consultative role.

CancerVOICES NZ is a charitable trust. Although we are an independent body we have affiliations with CancerVOICES UK and CancerVOICES Australia as well as working together with you and Cancer support groups in this country. Please feel free to circulate this e-zine to anyone who is interested in improving New Zealand’s cancer services. If there are certain issues that you would like us to follow-up, please let us know.

In this issue we feature:

NEWS IN BRIEF

Contact CancerVOICES NZ

CancerVOICES Wellington

The first regional division of CancerVOICES was set up in Wellington in August 2004. Murray Mitchell is the chairperson and this division will be addressing cancer issues affecting patients within the Wellington region including Kapiti Coast, Hutt Valley, Wairarapa, Nelson, Marlborough, Horowhenua and the Manawatu. New members are very welcome.

CancerVOICES UK founder holds March workshop in Wgtn

We are very fortunate to have Jane Bradburn (CancerVOICES UK) as the keynote speaker at our "CANCER: Sharing the Experience" a symposium to bring together patients, professionals and carers to share their experience and strengthen their partnership in the fight against cancer. to be held on Tuesday 22 March 2005 from 9-5pm at the Duxton Hotel.

Jane Bradburn is User Support and Involvement Adviser at Macmillan Cancer Relief. Jane has worked for the NHS and voluntary sector organisations developing ways of supporting and involving patients and carers for many years. In 1995, together with clinical oncologist Dr Jane Maher, she developed a Patient Involvement Unit 1995 undertaking pioneering work on involving cancer patients in NHS cancer services in the UK. In 1999, she set up CancerVOICES, a diverse UK wide network of people affected by cancer who are working together to improve cancer services.

CancerVOICES is supported by Macmillan Cancer Relief. Macmillan is one of the ten largest charities in the UK that develops new and better ways of caring for people affected by cancer from the time of diagnosis to the end of life. Working in partnership with people affected by cancer is central to the organisation’s approach. Jane leads Macmillan’s User Support and Involvement Programme.

ISCCN International Conference

When CVNZ Trustee and Secretary Deborah Wheadon attended the 13th ISCCN International Conference in Sydney in August last year, she made some valuable contacts. “Not only did I meet CancerVOICES delegates from England and Australia, but I also met with oncology professionals from around the world.” When talking about CancerVOICES NZ, Deborah received comments such as “timely”, “just what’s needed”, and the request for further explanation from some people, usually from countries that seem to have a good cancer voice without too much formal organisation (e.g. Egypt).

Deborah also met with Gill Batt of the NSW Cancer Council who has offered the facilities of this organisation by way of media advocacy training (they have a two day course) and advice if needed and requested. “Gill was extremely interested to hear what we are doing in New Zealand and congratulated us on our smooth transition from infancy in Wellington to moving forward through the country.”

“It was also a good opportunity to meet with Angela Wilson from the Cancer Clinic at Wellington Hospital who was very helpful in giving me a better understanding of the Wellington Cancer Clinic. I spent some time too with New Zealand delegates — wonderful nurses from Wellington Hospital, Rotorua Hospital, Auckland Hospital and Cancer Society (Wellington) and Greymouth.”

Deborah was selected to take part in a panel debate forum which was well-attended by conference delegates. The facilitator was Dr Norman Swan, a national health figure and producer/presenter of the "Health Report" (an ABC National Radio programme). The topic was: "Consumer involvement in cancer care: Implications for consumers, service providers and service planners".

“Going to the conference and meeting CancerVOICES delegates was of tremendous value. It also gave me the opportunity to let delegates from 34 countries hear about CancerVOICES NZ. I think these connections will prove invaluable,” says Deborah.

CancerVOICES UK and CancerVOICES NSW

Meeting with CancerVOICES delegates was the highlight of the trip and the main reason that Deborah Wheadon went to the Sydney conference:

“Jane Bradburn of CVUK and I spent significant time talking through our respective organisations, comparing notes and basically undergoing a joint SWOT analysis. What came through again and again was her admiration for the way in which we had structured CVNZ and the forward plan for independent divisions with representatives sitting at national board level. Both CVUK and CVNSW were impressed with our constitution and requested a copy for analysis and possible part inclusion (retrospectively) in their organisational structure.”

At the meeting of all CancerVOICES delegates, Sally Crossing (Australia), Jane Bradburn (UK) and Deborah were asked to present an outline of their organisations. This led to discussion of the differences in the way the organisations have been set up, their aims and philosophies and the cultural differences affecting their operation.

Sally Crossing of CVNSW was the former assistant to Michael Fey, the ex Premier of NSW, who has recently been affected by cancer himself. This has given the organisation there a significant boost with support from such a high profile individual. John Stubbs, a prominent ex Australian Rules football player, and also a leukaemia patient, is a co-chair of CVNSW.

We will have an immediate link with the United Kingdom — a member of CVNZ, who returned to Aberdeen early in September last year, will be the liaison person with the Aberdeen division of CVUK.

NZ Cervical Cancer Audit

The New Zealand Cervical Cancer Audit has been published by the Ministry of Health and is now available online.

The Auditors reviewed the screening histories of 371 women diagnosed with cervical cancer between 2000 and 2002 and re-reading their smears in an Australian laboratory. Details of the aims, objectives and methodology are included on this website. The Audit team has now reported to the Director-General of Health.

Funding subsidies on palliative care drugs

On 25 November 2004 CancerVOICES Wellington was visited by Dr Jonathan Adler of Wellington Hospital, to explain some of the issues connected with the provision of drugs in palliative care. CV shares his concern that present government funding arrangements for drugs obtained via Pharmac are placing obstacles in the provision of best practice in palliative care. The lack of subsidies for certain drugs means that their unavailability condemns some patients to unnecessary suffering.

In his letter of thanks to Dr Adler, CV Wellington Chair Murray Mitchell outlined CV’s point of view:

“We take this opportunity to assert that, as a matter of principle, our organisation believes that patients in this country are entitled to the same high standard of public health care that they might obtain if they fell ill in Australia, the United Kingdom or similar Western countries. We believe that ‘best practice’ in palliative care is the standard below which, as a civilised society, we cannot allow our health services to fall. We have no wish to see quality health care available only privately, to those with deep pockets. New Zealanders deserve better than that.”

CVNZ will continue to take an interest in this issue.

Symposium on Cancer Control

“Reducing the incidence and impact of cancer” is a key Government health objective. Academics, clinicians and practitioners gathered with interested lay people, including four members of CancerVOICES, at a full-day symposium on cancer control. This was organised by and with funding support from Massey University and the National Screening Unit, and the Ministry of Health and took place in Wellington on 18 November 2004.

The symposium was timely, with implementation plans for the NZ Cancer Control Strategy, released in August 2003, due shortly. Keynote addresses by Professor John Potter of the Fred Hutchinson Cancer Research Centre in Seattle on “Cancer Prevention: the gap between what we know and what we do”, and by Professor Brian McAvoy, of the Australian Cancer Control Initiative on the ‘Development of Cancer Control Plans in Australia’, set the scene for highly informative presentations by NZ speakers.

Participants were given a valuable insight into the theme of the symposium under 3 broad headings: Cancer in New Zealand; a Strategic Approach to Cancer Control — the Cancer Continuum; and the Future of Cancer Control on New Zealand. Sessions within these headings addressed a wide range of topics, including: cancer trends and projections; an overview of causes of cancer; ethnic and socio-economic dimensions of cancer patients; cancer survival; health promotion; screening; and treatment, support and palliative care.

The culmination of this was sessions focusing on the impending implementation of a comprehensive and co-ordinated campaign to control cancer in New Zealand. We are told that cancer causes nearly 30% of deaths in New Zealand: and that one-third of these deaths can be prevented; and another one-third treated effectively with early detection. The message at the symposium was clear: by addressing major contributing factors such as smoking, diet, and exercise, and by use of screening, with attention paid to ethnic and socio-economic groups who are particularly at risk now, big inroads can be made into achieving an element of “control” over much — though not all — cancer in New Zealand.

In all, a highly informative and valuable day for the CancerVOICES folk participating — Denise Robbins, Judi McBride-Wilson, Murray Mitchell, and David Swallow — with the added opportunity to inform others of the work of CancerVOICES. Our thanks to Novartis whose sponsorship made our participation at this event possible.

NGOs, the MoH, and the definition of “lobbying”

The Ministry of Health has recently been seeking to clarify some issues around “lobbying” in connection with its contracts with NGOs.

Some health and disability NGOs met recently in Wellington to continue discussions around how they might respond to a recent draft staff directive from Karen Poutasi (director-general, MOH). Dr Poutasi sought feedback from NGOs, and has sent out this draft directive to staff:

“The Ministry of Health recognises and respects the independence of NGOs including their broad role in society and their right within the law to use resources not funded by government to lobby for change to policy. The following instruction to Ministry of Health staff is designed to ensure that the Ministry does not fund NGO’s lobbying activities.

“The Ministry does not fund lobbying activity and such activity will not be included in any contracts”.

For the purpose of this instruction lobbying is defined as seeking to influence MPs of whatever party, over specific legislation under consideration by Parliament or targeting MPs on the development or implementation of policy (as distinct from providing evidence based information or advocacy to the ‘public’ in general of which MPs are a part). Lobbying also includes making submissions to Parliamentary Select Committees, and otherwise petitioning Parliament.”

Many NGOs intended to respond with a proposed re-write of that directive. Their rewrite reads:

“The Ministry of Health does not include specific requirements for lobbying in its contracts. Lobbying is defined as attempts to influence voting of Members of Parliament on specific legislation by using methods that are secretive or partisan.”

What do we mean by secretive and partisan?

  1. Transparent not secretive

    2. We don’t keep our efforts hidden — if asked (by media, other MPs, the Ministry) we are open about who we’re talking to and what we’re talking about. This doesn’t mean media attend meetings or that we fire off a press release the minute we conclude meeting with an MP. For many of us our major work is through the very open process of Select Committees.

  2. Politically neutral, not partisan in regard to political parties

    3. Our efforts are directed to all political parties. We don’t refuse to meet with specific parties. We have no allegiance to political parties. This excludes meeting with Ministers.”

Murray Newth of the Ministry of Health says that a large number of submissions were received by the closing date from a wide variety of organisations. NGOs can expect to receive an update in the new year, certainly by no later than the first NGO Forum for 2005. All submissions received as part of the consultation process are available under the Official Information Act 1982, except if grounds set out under the Act apply.

New Cryotherapy Treatment Available for Prostate Cancer

More than a dozen urologists and radiation experts from around Australia and New Zealand travelled to Promed Urology,Tauranga, in November last year to learn about a new procedure in surgery for prostate cancer. The procedure, known as cryotherapy, involves freezing the prostate by lowering its temperature to -40C while it is still inside a man's body and then thawing the gland in order to destroy any cancerous tumours. It has fewer side effects than traditional surgery.

Despite the strong interest, Dr Peter Gilling said the cost of the equipment involved and the fact that it was a specialised niche market means it is highly unlikely that in the foreseeable future the treatment would be offered anywhere else in New Zealand other than Tauranga. Operations will cost about $20,000 each.

CancerVOICES in the News

In its short history CancerVOICES has already received some notice by the media. Trustee David Binning and member Kate Davis featured in a Listener cover story about Cancer in August 2004, and several news items have featured in the DominionPost (Wellington) and brought in new members.

Trustee Judi McBride-Wilson was asked for comment on four stories for The Dominion Post in November 2004 and quoted in three. Member Ian McBride-Wilson had a Letter to the Editor published in December 2004 in support of Peter Dady’s comments regarding Capital Coast District Health Board forbidding board members to speak to the media.

News in brief

Cancer Waiting Times. Want to keep an eye on the length of time New Zealand cancer patients wait for treatment? This website will keep you up to date: http://www.moh.govt.nz/cancerwaitingtimes .

CancerVOICES NZ Website. Thanks to Alastair who is currently developing our website which will in due course can found at www.cancervoices.org.nz This website is kindly hosted by WCN Connecting Communities and Wellington City Council so watch this space!

Dr Peter Dady has been elected to Capital Coast District Health Board. As well as being the Head of Oncology at Wellington Hospital, Peter has also been the Medical Director of the Cancer Society for many years. In the next issue we hope to feature more about Dr Dady and other Cancer supporters elected onto Hospital Boards.

Reminder to Members –please fill in your form for the membership database. This database is important for when CancerVOICES NZ is asked to give feedback at short notice.

Thank You

Thank you to all the many people who have so generously shared their knowledge and experience with us and helped us establish CancerVOICES NZ. This newsletter was produced by CV volunteers Jo Woods and Dale Williams. Paper copies of this newsletter are kindly sponsored by Jackie Saunders of Harcourt's Kapiti office.