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New Zealand Regional Cancer Networks (NZRCN)
NCCRAG meeting
Thursday 27th September 2012
Reflections from the chair
This is the third meeting of this group. We now have a shared agreement about the
direction the group is expected to take alongside its contractual obligations. Regional
reports tabled at each meeting will enable us to understand what is going on in the
different regions and share resources and solutions to issues. We need to cast a net
over the regional networks so we can work towards influencing the cancer agenda
from a national perspective.
We are also beginning to network with government cancer groups. This is important
because shared expertise across the cancer spectrum is critical to improving quality
of services and finding solutions to issues that impact on the cancer journey for
individuals and their family/whānau
Part of my role is chair is to network with groups such as NZ Cancer Network Group,
Cancer Control New Zealand and the National Maori Cancer Leadership group to
explore ways we can work together.
One of the added burdens of being a representative in cancer is finding the
resources to support our activities. Each meeting we have face to face costs around
$7000.00. We believe it is necessary to meet face to face at least 3-4 times a year at
the moment to build our group cohesiveness, come to grips with the national cancer
context and support newer members to this role. Currently the Ministry of Health
provides funding through a contract with the Central Cancer Network but if we are
to succeed and meet our expectations we will need to fundraise more. Our first
target is to obtain funding for a national meeting next year. Sausage sizzles on the
way! But on a serious note we will be making applications to secure this funding
from Trusts etc.
National View of Cancer
Steve Creed. MOH, presented on the data collected about cancer in New Zealand.
He spoke of the number of repositories for cancer data and explained that the
information is not easily collated to give an overall view of cancer in New Zealand.
This is an ongoing piece of work that NCCRAG will provide feedback into as there are
implications around privacy of information and access to non-identifiable data by
various groups.
Feedback on national cancer documents.
It is important that NCCRAG have the opportunity to feedback on key documents.
So, we need to know what these documents are and organize our responses as a
group. Not everyone is interested in all aspects of cancer or has the time to review
all documents. After discussion we now have a process for identifying and
responding to these documents. We remain perplexed as to why so many of these
expert advisory groups that sit within the review of services, creating new policy and
changing services don’t have an experience based consumer as part of the expertise
for the group. This is an issue we are working to resolve and raise awareness about.
Draft Palliative Care Health Needs Assessment Phase II
Raewyn Calvert has an interest in this area and has submitted a submission on behalf
of the national group. Noticeably the expert advisory group involved in this draft had
no experience based cancer consumer representation.
Psychological and Supportive Care Standards
Rowena Lewis and Chris Walsh have submitted a response to the draft report on
behalf of the national group. This is another critical piece of work in the cancer
context. The psychosocial supportive needs of people with cancer vary and services
range from nothing to quite a lot in most areas.
Training for Cancer Consumer Representatives
One of the main tasks set for this group (and some funding set aside) is to update
the training package for cancer consumer representatives. NCCRAG have requested
HER Solutions to provide a quote for the development of a modular training package
for CCRs. There is an expectation that training could then be rolled out early in 2013.
Proposal for guidance of cancer consumer representative payments within the New
Zealand health sector
Kelvin Twist tabled a draft paper to guide those organisations and groups utilizing
cancer consumer representatives with respect to payments. This paper is still in the
development phase and produced some interesting discussion around roles and
responsibilities of consumers. The group expects to discuss this refined draft at the
next meeting on Friday 30th November and release a position statement early in
Chris Walsh