President’s Column

Firstly I would like to welcome Colin Slade as the Editor of the CancerVoices Newsletter.  Colin has wide experience in mental heath communications and the addition of his skills to our team is both timely and welcome.  You will be hearing from Colin on a regular basis with 4 publications annually.

2010 is rapidly coming to an end and at times I wonder if the work we are doing to train Cancer Consumer Representatives is actually making a difference to the delivery of health services to those affected by cancer.  The answer is yes in a number of areas but there is still reluctance for those at the forefront of service delivery to actively involve those who have a strong knowledge and experience of service delivery in seeking to improve those services.

Having said that, CVNZ is very aware the number of organisations who have appointed lay-people as CCRs to work with Health Professionals is really only at the tip of the iceberg.  It is up to us to start breaking down barriers and asking “Why Not?”

There are many health providers and associated organisations in which CCRs should become involved and it does not take much effort to come up with an almost endless list of possibilities.

Some examples are;  Private Hospitals, Medical Practitioner professional organisations such as the Royal Australasian College of General Practitioners,  Hospices (where 80% of palliative care patients suffer from cancer), DHBs, PHOs,  Ministry of Health, Health Insurers (especially Southern Cross Medical Society which is very selective on who it invites onto its Board) to mention a few.

It is up to every one of us to take up the challenge and begin to initiate change.  This may be by way of writing letters, by challenging the system at Annual General Meetings (propose a resolution seeking change) or other means.  But it is up to every person who is a potential CCR to seek constant improvement.

Finally I would like to remind every one that the last CCR Training Course in the present series will be held in March.  Contact Jan Pearson at the NZ Cancer Society* if you would like to attend and to be included. Places are limited.

In conclusion I wish you all the Best Wishes for the Festive Season and hope that 2011 is indeed a great and healthy year.

David Binning
President

(*Note: Jan Pearson’s email jan.pearson@cancer.org.nz or phone 04 494 7270)

From the new Editor

Kia Ora Koutou, Greetings All.

My name is Colin Slade and I’m thrilled to have been given the task of editing the Cancer Voices newsletter. The board of Cancer Voices is well aware that too much time has elapsed since the last newsletter was published in September 2009 and my appointment signals their determination to revitalise this essential tool in the task of keeping Cancer Consumer Representatives informed and equipped to do the job that only they can do. 

Why me? Well, I’ve been a journalist for many years but I believe what equips me best is my experience of the mental health consumer movement in which I’ve worked as an advocate and consumer consultant for the last ten years and continue to do so. In addition to my mental health consumer experience however, I can claim the loss of my sister to cancer some years ago, as well as having close friends who have experienced the mixed fortunes of receiving cancer services in New Zealand.

I have attended the last two board meetings of Cancer Voices and have been learning about the various cancer networks and agencies, national and regional, which have some say or claimed expertise in how cancer services are planned, funded and delivered. It is these groups, DHBs, advisory bodies and so on, that cancer consumer reps are seeking to influence of course. It has been for me both reassuring and frustrating to learn that the structures of power and clinical influence whose decision making affects cancer consumers bear far too many similarities to those which affect the lives of people who receive mental health services. It is no surprise then to find that there are many issues which are identical to both groups as they are indeed to most communities of people who use health services. Fundamentally we have inherited a health system that is still driven by the belief that ‘doctor knows best’. 

In mental health we consumers have often said that “mental health is the only business in which the customer is always wrong”. In talking to survivors of cancer services and their families, I’m beginning to find that a similar maxim might be just as appropriate in this branch of the health business.

So I look forward to putting my pen to work in the service of supporting cancer consumer reps everywhere to try to redress that balance and get the voice of direct experience into the decision making around improving services.

One thing I would like to encourage in the newsletter is feedback in the form of letters, comments about anything you read in here - or about what you would like to read in here. A good newsletter is one in which the information flows both ways!

Merry Christmas!
Colin Slade

Consumers’ Impact Limited in Regional Cancer Networks’ Activities

In its 193 pages, the Regional Cancer Networks Evaluation Report (commissioned by Cancer Control New Zealand and released in September), devotes just two of them to consumer participation in Regional Cancer Networks (RCNs). No surprise then that in its survey of network stakeholders (only 6.8% of those interviewed were consumers); less than 7% strongly agreed that “consumers are actively contributing to identifying and prioritising RCN activities”. A similar number disagreed that they were actively contributing and a far greater number did not have an opinion either way. Obviously there is still much to do to bring a stronger consumer voice to bear in the activities of the RCNs

The report goes on to say that cancer stakeholders generally accept the benefits of working collaboratively via the regional cancer networks and hence have a sense of commitment to the networks. Regional cancer networks, it says, have made excellent progress in establishing clear governance structures and all networks have well defined collaborative structures to guide and manage the network’s work programme. However the report concludes that while regional networks provide a valuable opportunity for the various stakeholders to work together to improve services there is still a long way to go to before there is a collective sense of ‘ownership’ of the networks by the various stakeholders. 

Consumer Representation Minimal

From a consumer point of view, that aim of claiming ‘ownership’ might be an even more remote goal with so few consumer participants actually on the networks. “All four regional cancer networks now have at least one consumer representative on their regional stakeholder collaborative group and all four have some means of linking consumers into a wider network of consumers regionally” the report says.  It is true that the Northern Cancer Network and the Midland Cancer Network have formal consumer reference groups and the Central Cancer Network and the Southern Cancer Network have virtual groups whereby the consumer representatives from throughout the region are linked together by tele? or videoconferencing. However external reference groups are no substitute for a strong consumer voice at the network table and such an impact is hard to exert when there are only one or two of you in the face of another 20 or so DHB planners, clinicians and other professionals. Whilst there is consumer representation on the regional stakeholder collaborative groups, the report says that relevant consumer representation hasn’t yet been achieved on all regional cancer network project groups, for example the tumour stream groups, and further work is needed to achieve this. 

Wide Variation in Pay for Consumer Reps

One of the main issues for consumer representatives is how to get adequately reimbursed for their time. Some consumer representatives talked of difficulties in finding a suitable mechanism for paying them. One cited an example of one of the PHOs paying consumer representatives $300 + GST for attendance at meetings whereas some regional cancer network consumer representatives have been given petrol vouchers in lieu of payment while others have had to be signed up as employees and had secondary tax deducted. 

DHBs Hinder Innovation

The report notes that the networks generally have an uphill battle to convince DHB funders and planners to implement recommendations that are put forward. Indications are that whilst funding and planning representatives participate, to a greater or lesser extent, in network governance, decision making and work programme activities they are seen as providing minimal guidance or continuity between the DHB funding and planning teams and the network.  One regional cancer network leader said that eight out of every ten network initiatives are blocked by funding and planning in one of more of their DHBs. A cancer network clinical director said: “All we’ve done is make decisions that have then been put up through the DHB processes to get approved and implemented.” This was reiterated by a DHB representative who noted “While the multi disciplinary work at regional level is significant, the implementation at local level is much slower.” 

National Leadership Lacking

The report states that the absence of national leadership is also seen as contributing to the fragmentation and difficulties the regional cancer networks are having at effecting change at a regional level. Several of the regional cancer network leaders talked about the lack of any national documentation to guide the establishment, development or activities of the networks, for example national patient management frameworks, guidelines and standards. One clinical director said “The networks have been asking for national direction since day one – the parent body (Ministry) has been supporting but not driving, not leading and not providing the framework, the guidance that would have been beneficial.”

Improving Patient Experiences?

On a brighter note the report commends the RCNs’ focus on ‘improved patient experiences’, a focus which it says appears to be a particular success and many interviewees see this as a significant point of difference between the regional cancer networks and the DHBs. Around 10% of respondents thought there had been significant increase in focus on improving patient experiences and another 40% thought there had been some increased focus. Unfortunately the survey was unable to talk to people actually using services to see whether that increased focus had achieved any results where it counted. Still, looking to the future, 50% of interviewees thought that the RCNs’ work would in the long term significantly improve the experiences of patients. However with only 6.8% of those interviewed having been patients themselves, it is not clear what evidence this optimism might be based upon.

The whole report makes interesting, if sometimes dismaying reading, and can be found at http://cancercontrolnz.govt.nz/    At the same site you can also find the “The Voice of Experience Part 2 — Themes and results of New Zealand’s first Cancer Care Survey”

Launch of Directory of Cancer Support Services

Phil Kerslake, Cancer Voices NZ, launched New Zealand's first Directory of Cancer Support Services at Hutt Valley DHB on 25 August "Knowledge truly is power to a cancer-affected family and whanau." Phil said "Often, we don't know what we don't know, and so we can have no idea that support is readily available to us." 

Phil, who is General Manager, Human Resources, at Hutt Valley DHB, has personal experience of cancer and has for many years been advocating for improved services.    

The Directory is a collaborative effort between Hutt Valley, Capital and Coast and Wairarapa DHBs. Monica O'Reilly, Hutt Valley DHB worked with Viv Murray, Capital and Coast who led the project. Anna Cardno from Wairarapa DHB also collated information. 

The directory was funded by the Central Cancer Network and supported by the Cancer Society. You can find it here: http://www.huttvalleydhb.org.nz/Resource.aspx?ID=4186

Consumer Collaboration Aotearoa Group.  

 This is New Zealand's only independent cross-sector national consumer organisation whose members represent disability, mental health, and other health consumers.  The project is jointly "owned" by the CCA and the New Zealand Guidelines Group.  Although initiated a couple of years ago this group is still very much in its formative stages, however Cancer Voices has decided to join in the belief that wherever there is a voice for consumers of health services, cancer consumers should be represented. More details at: www.consumercollaboration.org.nz

Survivorship Forum – from discharge, through follow-up and beyond – held at Massey University Wellington – December 1st  

The issue of survivorship is one of the key debates for consumers, many of whom assert that survivorship begins from the moment of diagnosis rather than the present assumption of post discharge that the title of this forum indicates. In any case, the strong message that came from the 92 participants at the forum (around 20 of them consumers) was that survivorship care planning needs to be urgently advanced. Consequently a workshop following the presentations was asked to address these two questions:

• How do we take survivorship care planning forward?  (Who, what and when?)
• How can existing programmes relating to survivorship be further developed, promoted, co-ordinated and accessed?

Chief among the answers to these questions were that a coordinated national approach to the development / adaptation of tools is required and that development needs to include all stakeholders, particularly consumers. Other outcomes from the discussion can be viewed (along with the morning’s presentations) on the Central Cancer Network website at www.centralcancernetwork.org.nz – click on the News section of the home page. You can also access a media release from the conference on the Cancer Society website www.cancernz.org.nz.

What's coming up

Inaugural Cancer Symposium 13 - 18 February 2011   

This forum is to be hosted by the University of Otago, Wellington at the Duxton Hotel, Wellington.  You can register on-line through this link, or visit: http://www.wnmeds.ac.nz/cancersymposium/  The link will also allow you to view the extensive programme.  

NZNO Cancer Nurses Section Haematology and Oncology conference

Coinciding with the last day of the Cancer Symposium the oncology nurses will be having their two day conference over the road at the Wellington Convention Centre  - 18th and 19th February 2011. If you fancy joining the debate, it’s always interesting to bring a consumer voice into nurses’ discussions. Info at: http://www.ccdhb.org.nz/events/honc11/index.htm

Melanoma Summit - Innovations & Models of Best Practice in New Zealand March 2011

The Melanoma Summit will feature a session for selected participants to provide a 5-minute snapshot of an innovative initiative, research project or model of best practice for melanoma prevention, diagnosis, treatment or care in New Zealand. 

Participants have been invited to submit an abstract describing the proposed presentation. Those abstracts selected for presentation will be posted on the MelNet website prior to and after the Summit. 

For further information contact the MelNet Coordinator, Betsy Marshall at melnet@melanoma.org.nz