Cancer VOICES Newsletter

June 2011

From the Editor

Kia Ora Koutou, Greetings All

Welcome to our Winter newsletter. Since the last one in December the summer has been and gone and so has autumn and we apologise for leaving too long a gap without word to you.

The last few months have been a time of reflection for the Cancer Voices Board as it reviews the purpose and function of Cancer Voices. Two recent publications have provided useful information to feed into its considerations.

Firstly the Regional Cancer Networks Evaluation Report (as reviewed in the last newsletter) yielded the information that:

1. Cancer Networks while doing good work, face significant difficulty in having their recommendations taken on board by clinicians in everyday cancer service provision.
2. Less than 7% of those interviewed strongly agreed that “consumers are actively contributing to identifying and prioritising RCN activities”, indicating that consumers voices are still not being heard at the tables where the real decision making goes on.

Secondly a survey of cancer consumer reps (CCRs) and organisations utilising their services conducted by the Central Cancer Network produced the following information in its summary:

“The overriding theme in both surveys is that of (unclear) expectations around the CCR role, together with (the need for) peer support, mentoring, networking, and communication. Much of the comment reflected frustration at not being able to secure a role, feelings of isolation, and the need for support and mentoring both for those who are active as CCRs and those who are not. Most respondents saw a need for ongoing refresher courses and up skilling, but the primary concern was to establish strong networks, support and mentoring systems together with methods of linking CCRs with roles.”

The people who set up Cancer Voices in 2004 did so because they believed that as in all other service industries, the consumer’s voice is the most important and it needs to be heard. That in the health industry this principle is still not accepted by many clinicians is a legacy from the days when the doctor was regarded as god and everyone simply accepted the quality of service they got, good, bad or indifferent. The 1988 Cartwright Inquiry at National Womens hospital helped to change all that.

Since the subsequent 1994 introduction of the Health & Disability Commissioner  Act and the Code of Consumer Rights, health services are increasingly listening to the people who use them. But they are more likely to listen to people who are organised into informed and active advocacy groups. Informed service providers want to listen to such groups because they know that the point of view expressed is a broadly based one and the constructive dialogue they can have often does result in improved services.

The formation of Regional Cancer Networks in 2006 brought an opportunity for cancer consumer advocates to focus their efforts in a structure set up for the purpose of improving cancer services. The CCR training that was originally organised by Cancer Voices and the Cancer Society, has led to a number of trained CCRs becoming involved on committees, reference and advisory groups among those networks.

Members of the Cancer Voices Board at a recent meeting where Sarah Penno from the Cancer Society was describing the Cancer Patient Diary project. L-R David Binning, Jane Keef, Pat Fairbrother, David Saddler, Sarah Penno, Susan Sutcliffe, Alistair Johnson. (Out of camera – David Swallow)

 (We apologise that because of a technical fault this photo is not visible in the online version of the newsletter. We hope to fix this soon)

Having been influential in the growth of a cancer consumer movement, the formation of cancer networks, and the development of training for cancer consumer reps, the challenge that is now facing Cancer Voices is how to ensure that those reps do find places to work, whether it is within the cancer networks or beyond; and that they do receive the follow up training and support they need to do that work well. Already the Central Cancer Network is moving towards doing this work on behalf of consumer reps (see page 6). Shouldn’t we be working alongside them?

We welcome letters on this and any other issue contained in Cancer Voices News!

Contact Colin Slade on 021-369-797 or email colin@colinslade.org

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Consumers Wanted!

CONSUMER REFERENCE GROUP

The Northern Cancer Network is currently looking for members to be part of its Consumer Reference Group. The purpose of the group is to ensure that there is a consumer perspective and input into projects, service planning and other Northern Cancer Network activities.

The Consumer Reference Group meets four times a year - next meeting on 4^th August. If you would like to become a member or would like more information, please contact:

Petrina Francis, Northern Cancer Network.

petrina.francis@ndsa.co.nz   (09)-589-3937

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What does it take to make them listen?

There is a raft of well researched evidence from all over the world to show that consumer participation in health service planning, delivery and evaluation results in continual service improvement. The Ministry of Health[1] has stated that health and disability service providers should seek active consumer participation for two reasons:

• To improve the quality of services provided and make them more sensitive to the

            needs and preferences of users - resources can be better targeted if services reflect  actual needs.

• As a strategy to add the unique perspective of consumers to improve

            the design, management and review of health services (Barnes and Winstow 1999).

The Ministry highlights three levels that consumers can have input into services:

• The individual level - input into treatment and services used as an individual
• The organisational level - input into provider agencies and organisations
• The policy level - contributing to policy development of purchasing or policy agencies.

So if even the ministry has been promulgating consumer participation for years, why is the system so slow to introduce it? Well for one thing, no one who has any authority in a system likes to give that up. Michel Foucault identified it thus:

"There is no power relation without the correlative constitution of a field of knowledge, nor any knowledge that does not presuppose and constitute at the same time power relations."  And again: “wherever there is power there is resistance.” [2]

Real change in any institutionalised culture such as the health system therefore, with all its intricate power and knowledge connections, is hard won and depends on perseverance and building partnerships with allies within the system. There is most progress when managerial or clinical leaders champion the involvement of consumers. If you are lucky enough to have such people as colleagues on a committee, influencing committee decisions can be made easier. If you are not then it can be an uphill battle. The typical example of the Hutt/Wellington Combined Cancer Advisory Group membership (below) indicates what a minority voice the consumer usually has, in the face of so many clinical and management professionals.

Cancer Voices has a policy that calls for any consumer position on a representative body to be filled by two consumers for a number of reasons:

·         Two voices are stronger and bring more knowledge to the table than one and they can provide moral support for one another in what can sometimes be an alien environment

·         In the event of indisposition of one or the other the consumer voice is still present

·         It can provide for an experienced representative to mentor a ‘novice’

Even when you think you have allies there are many professionals who on the surface will agree to whatever the consumer rep says but privately ignore it and will not follow through with implementing recommendations. This is a senior manager in an Australian mental health service interviewed by a consumer consultant in a recent research study:

“I am sure you have sat at meetings where you (the consumer consultant) put your perspective and everybody goes, ‘yes, yes, yes’, and you’re sitting there thinking ‘half of you don’t even believe what I’m saying’. You’re nodding because you have to nod to show that you respect the consumer consultant, but really, do you believe it? No. . . .” [3]

Faced with professional scepticism then, consumer or carer experience alone are not enough to ensure that consumer participation is effective.  A fair selection of the following competencies will equip the consumer rep to bring more influence to bear on the deliberations of the group:

• communication skills
• skills in dealing with complex information
• skills in negotiation and persuasion
• skills to articulate a service user perspective
• Skills in obtaining both the personal views of service users, and the broader consumer perspective, and knowing how to distinguish between them
• Demonstrated knowledge of:

- relevant health structures and issues

- the range of consumer opinion on specific issues

- relevant research evidence that supports service user participation

Cancer Voices intends to circulate further information on how and where consumer influence can be brought to bear on improving services in later newsletters.

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CCN Cancer Services Directory now available online

As announced in the last newsletter the Cancer Services Directory was launched at Hutt Valley DHB last August. A joint project of Hutt Valley, Capital & Coast and Wairarapa DHBs the directory is now available on Cancer Networks’ websites and can be found here:

http://www.centralcancernetwork.org.nz/page/pageid/2145862571

http://www.midlandcancernetwork.org.nz/page/pageid/2145862568

http://www.northerncancernetwork.org.nz    www.healthpoint.co.nz

Sign the World Cancer Declaration

The World Cancer Declaration is a tool to help bring the growing cancer crisis to the attention of government leaders and health policymakers in order to significantly reduce the global cancer burden by 2020. It’s an interesting website with a great little animated video to watch while you join a quarter of a million other people and sign the declaration.

http://www.uicc.org/declaration

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National Patient Diary Project Advances

The idea for a cancer patient diary was initiated in late 2009 with a call for interested parties to join a teleconference in March 2010. Around 25 people attended, included consumers, Cancer Society NZ staff, clinical nurse specialists, regional cancer network managers, patient advocacy groups and allied health professionals from around the country. After further discussion it was agreed that a standard, generic, nationally available patient diary would help to meet some of the needs identified in the Cancer Control document The Voice of Experience (2009). Shared decision making, information and communication were all identified as being significant issues. A diary would also aid with the implementation of the Supportive Care Guidelines (2010).

Consumer focus groups were run late 2010 in Wellington and Auckland to review a design. A prototype will be available in the next month or so with the hope that a pilot will be ready to start early in the second half of the year (probably September 2011). Funding to date has been provided through CSNZ and after some internal discussions it has been decided that this will continue to the pilot stage. However sustainable funding is still to be finalised.

Says Sarah Penno of the Cancer Society, “This is an exciting project that has many people enthused from patients to oncologists. With such widespread support it is hoped this kit will greatly improve communication across the health care team and, most importantly, support patients to receive the help, information and support they need.”

Keys to success: 
Ø      Identified as useful by health care team 
Ø      Use is supported by key members of HC team 
Ø      Flexibility of the diary to accommodate both providers' and users' differences 
Ø      Not for everyone!

Note: A pdf of the Diary mock up is attached along with the newsletter. Sarah Penno welcomes feedback from consumers. Please contact her at:

Cancer Society
DDI: (04) 494 7191
Email: sarah.penno@cancer.org.nz

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Future Cancer Consumer Rep Training

The following proposal has been made with respect to the continuation of Cancer Consumer Representation (CCR) Training:

·         future training, development and support for CCRs is provided by the Regional Cancer Networks

• the training material is updated and re-packaged
• a continuation of funding from the Ministry of Health supports a lead Regional Cancer Network to: 
  o    provide overall coordination of the CCR training programme including ensuring      training materials are kept up to date and new materials are developed as required 
  o    facilitate national requests for consumer representatives 
  o    coordinate a biennial national CCR hui 
  o    provide each Regional Cancer Network  with an annual budget to enable them to provide ongoing training, support and development for CCR.

CCN has indicated its interest in being the lead network for the CCR Training to the other cancer networks and Ministry of Health.  For further information contact Jo Anson, CCN Network Manager.

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Free Cancer Service Improvement Workshop - July 2011

Central Cancer Network is facilitating the introduction of the Health Service Co-design guide and toolkit produced by Waitemata DHB. Sixteen 3-hour free regional workshops are being held in various Central Region centres during July.  The workshops are intended for a cancer control audience across primary, secondary, tertiary, NGO and including consumers.  Go to the schedule here:http://www.centralcancernetwork.org.nz/file/fileid/36613 To register interest contact Stephanie Fletcher,stephanie.fletcher@midcentraldhb.govt.nz  or on 06 350 8918.

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Websites of Interest:

Australian Cancer Trials http://www.australiancancertrials.gov.au/

This is a free information service that displays the latest clinical trials in cancer care, including trials that are currently recruiting new participants. We believe that this information should be freely available to all, and written in a way that is easy to understand. The website is updated each day with new information from the Australian New Zealand Clinical Trials Registry and ClinicalTrials.gov from the United States (see below)

Australian New Zealand Clinical Trials Registry (ANZCTR)

The Australian New Zealand Clinical Trials Registry has been established at the NHMRC Clinical Trials Centre, University of Sydney, with funding from the Australian National Health and Medical Research Council (NHMRC) and New Zealand Health Research Council.

http://www.anzctr.org.au/

ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals

http://clinicaltrials.gov/

Thank you for reading Cancer Voices News which is being circulated via email because we are presently having difficulty loading material onto our website www.cancervoices.org.nz. Feedback, contributions of news, notices, personal stories etc. are welcome but we reserve the right to edit. Please contact the editor, Colin Slade at colin@colinslade.org or info@cancervoices.org.nz

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