In an initiative headed by Alliance health spokesperson Phillida Bunkle, the Government has accepted ME/CFS as a physical illness and a policy will be developed around the way Work and Income manages the needs of people with the condition.
Acting Social Services and Employment Minister Ruth
Dyson, who is also the Associate Minister of Health, made
the announcement on May 12, the International ME
Awareness Day. As well as opening up the way for better
access to Work and Income, Ms Dyson agreed to ensure that
the disability allowance is available to help buy dietary
supplements and alternative therapies.
SUPPORT FROM MPs. In addition, 23 MPs have joined a
loose association of “MPs for ME” with the aim of promoting
awareness and action. Some support groups have already had
invitations from MPs in this group for meetings to discuss
their needs.
The “MPs for ME” are Jim Anderton, Tim Barnett,
Georgina Beyer, Sue Bradford, Phillida Bunkle, Kevin
Camp bell, Chris Carter, Steve Chadwick, Helen Duncan,
Ruth Dyson, Jeanette Fitzsimons, Grant Gillon, Liz Gordon,
Joe Hawke, Jonathan Hunt, Judy Keall, Sue Kedgley, Winnie
Laban, Sandra Lee, Nanaia Mahuta, Jill Pettis, Matt Robson,
Dover Samuels, Judy Tizard.
MEETING AT THE BEEHIVE. On Wednesday May 15,
a number of members of our Wellington Support Group
gathered in the Beehive foyer to meet with several of the
MPs and to present them with blue ribbons and copies of the
recent report by Britain’s Chief Medical Officer of Health.
Deputy Prime Minister Jim Anderson, Ruth Dyson, Phillida
Bunkle and Sue Kedgley addressed the gathering.
Later that day Phillida Bunkle spoke in Parliament about
the lack of recognition, treatment and specialised facilities for
ME, citing statistics and recommendations from the British
report. She said ME sufferers in New Zealand had struggled
to have their condition recognised, often when their illness
made the struggle almost impossible.
As a result, Government has acknowledged that ME is a
“proper” illness with a physical basis, and agreed that
improved diagnostic approaches and treatment must be
introduced. Ms Dyson has also obtained agreement at the
highest official level for fairer and more appropriate
guidelines for Work and Income caseworkers in dealing with
ME clients.
The WINZ agreement, ratified at the highest level, is as follows:
1.To develop policy for the way in which
WINZ manages the needs of people who
have ME/CFS.
2.This will include provision for adequate access to
WINZ offices.
3. Appropriate guidelines for facilitating recognition and
interact ion between WINZ personnel and persons with ME.
4. Access to Disability Allowance for the purchase of dietary
supplements and access to alternative therapies for persons
diagnosed with this illness. (This happens in some centres,
and from some WINZ offices, but up till now there has been
no consistent policy).
It is important that the impetus be kept up with
submissions and contacts with all MPs. Phillida Bunkle
intends putting in more effort up until the election, and
hopefully afterwards another MP will take over the job of
heading the MP network.
APPRECIATION. “ME patients and their families
throughout the country are immensely grateful to Phillida
Bunkle for this effort, and to Ruth Dyson, for pushing
through the changed WINZ guidelines, and we are grateful
to all of you who made submissions on this matter,” says
Jacqueline Steincamp, Information Officer of the Canterbury
ME/CFS Group.
Jackie Steincamp has been involved for many years with
efforts to achieve recognition of the problems of ME
sufferers, through her work with the group and her
publications, and she liaised with Phillida Bunkle over her
parliamentary initiative.
IN THE MEDIA. On ME Day, Jackie and other members
of the Canterbury group took part in a televised documentary
on TV One. Also on ME Day, two members of our
Wellington Group, Moira Aberdeen and Annie Freitas, who
presented a comic stage show, “The Chronic Ills”, during
the Fringe Festival last year, were interviewed on the One
in Five programme on National Radio.
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They spoke movingly about their experiences with ME and
about their use of humour to help them through the
difficult times.
News of the meeting with MPs in the Beehive was
broadcast during Checkpoint on National Radio the same
evening and some of our members were interviewed. During
the following week ME was one of the subjects discussed on
the radio talkback show Newstalk ZB.
Dianne Cooper managed to phone in with advice of our
website and mobile phone number. She immediately tried to
contact Diane Nicol, who holds the phone, to warn her she
might receive calls, but was already too late, as calls were
stacking up. They came from all over the country and each
caller was referred to the nearest support group.
EXPRESSING OUR THANKS
Thanks are due from our Wellington group to everyone
involved in the ME Day initiative, including Jackie
Steincamp, our own James Eaton, who acted as local
organiser, and all the Members of Parliament who have
given their support.[QUOTE/]
