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Many thanks to everyone who responded to our call to get in touch with the health service authorities and MPs late last year. The response was magnificent and we were certainly noticed. However, it looks like this is only the start of a long battle to save the Leeds & West Yorkshire CFS/ME Service in its present form.Those who heard back from the authorities will have received assurances that the clinic is not in danger of closure. What they did not say was whether it would continue in its present form, and as a recent article in the Yorkshire Evening Post makes clear, substantial and - we think - potentially catastrophic changes are coming down the pipeline.What is
planned is effectively a demolition of the existing clinic. It looks as though Clinical Lead Sue
Pemberton and the Consultant Immunologist Dr Wood are to go and the clinic is to be
led by psychiatrists. After pressure from Mary-Jane Willlows of the AYME support group, the Leeds and York Partnership Foundations Trust, which
currently controls the clinic, are to
hold a one month consultation with patients. If you feel strongly about this
issue, please get in touch with them to tell them your views. To contact them, use this email address or call 0113 305 5982. You can also arrange to attend one of
their 'presentations' at which they will put the case for the changes. Please
try to get along if you are well enough. We also encourage you to contact your
local MP and the Department of Health. We're going to have to create a heck of
a stink if we're to get this changed. Here are a few of the issues you may wish
to raise with the Trust and with your MP. Feel free to cut and paste as you
wish or amend to reflect your views.The
proposed change to a psychiatric-led model is unacceptable, out of date and
inappropriate in the light of what is now known about ME/CFS. The psychiatric
model of this condition was in vogue in the eighties and nineties. We have
moved on from that. This is a wholly retrograde move, demolishing all the good
work that has been done in recent years. The existing clinic was set up as part
of a national initiative in consultation with patients. It is now to be swept
aside to - allegedly - save a relatively small amount of money.- ME is
classified by the World Health Organisation as a neurological condition and
very recently (on 24 April this year) Department of Health Minister Paul
Burstow confirmed that 'the Department classes CFS/ME as a long-term
neurological disease of unknown cause". How then can it be appropriate to
propose a clinic for ME run by psychiatrists and without any doctors/physicians?
- The
Trust maintains that Dr Wood can go because 'there has not been a case of
misdiagnosis in years'. This seems like an unrealistic assertion given how hard
it can be to diagnose ME. But the extent to which the clinic has been
successful in this respect is evidence of how well the current system has been
working. Why change it now? Any misdiagnosis comes at a high cost both to the
NHS and in the suffering of the patient involved. If this proposed change goes
ahead, the cost to the NHS, to society, and to the poor patients will dwarf the
£46,000 the Trust hopes to save.
- From the YEP article, it seems very likely that the Service's Clinical Lead and Consultant OT, Sue Pemberton, is to be sacked from
the clinic. This would be a terrible loss. Sue is one
of the most experienced CFS/ME practitioners in the country. She has been
involved in the care of CFS/ME patients for over 20 years and has been
instrumental in developing ME/CFS services nationwide. It is ironic that she
won the award for 'Outstanding Services to the Trust' in 2010. Why should all
that expertise be thrown away?
- Under
Sue's leadership, the Leeds & West Yorkshire Service has become a centre of
excellence for the care of CFS/ME. The current multi-disciplinary team has
achieved the best clinical outcomes data nationwide, performing better than any
other ME/CFS service in the country. It makes no sense to demolish a top class
nationally respected service.
- After
many years in which research money has been channelled mainly into psychiatry,
the Medical Research Council has recently announced a substantial investment in
biomedical research into ME. A recent well-publicised study in Norway suggested
that ME might be an auto-immune condition. Yet now the Leeds clinic is to lose
its Consultant Immunologist and be left without a Consultant Physician. Local
patients will therefore be unable to benefit from the trials of possible
treatments which may emerge from the new research. Without a doctor, the
Service will be unable to take part.
- Dr
Akagi, the existing Consultant Psychiatrist at the clinic, has a great
deal of expertise in ME, but what if she chooses to move on? Many, many
psychiatrists in the country have a very different view of ME from that of the
existing clinic. Many believe that patients are ill because they are fearful of
doing more (an approach known as 'fear avoidance'). They combat this with
graded exercise regimes. Is this to be the future of the clinic?
- This is
all about saving money. Yet the truth is that the CFS/ME Service currently
makes a profit for the Trust. As the clinic is a regional service, the Trust
receives money from neighbouring health authorities who refer patients to the
centre of expertise in Leeds. What the Trust want to do now is to make even
more money from ME patients by providing an inappropriate and inferior service!
- Overall,
these proposed changes will not save money for the NHS. There will be an
additional cost due to misdiagnosis and less effective - possibly even
counterproductive - treatments.
- The
wide-ranging needs of ME patients require a multi-disciplinary team, as shown
by the previous success of the clinic. If this model doesn't fit with the way
the Leeds and York Partnership Foundations Trust wants to organise its
services, we need to move to another provider. Another Trust, Leeds Community
Healthcare, currently provide services for long-term physical conditions such
MS and chronic pain - why not ME as well? Can you imagine an MS clinic
being run by psychiatrists without any doctors/physicians? Why is this thought to be
acceptable for an acknowledged neurological condition such as ME? These
proposed changes will make a small amount of saving for Leeds and York
Partnership Foundations Trust, while imposing a far greater cost on the NHS and
the patients who will have to suffer as a consequence.
- These
changes should be abandoned. The Service should be moved to Leeds Community
Healthcare, where it can be treated alongside other long-term physical
conditions by a multi-disciplinary team, and where a much-needed children's
service can also be established.
Please
take action if you feel strongly about this. The Leeds and York Partnership
Foundations Trust can be reached at this email. You might also try writing to their CEO, Chris Butler, at 2150
Century Way, Thorpe Park, Leeds, West Yorkshire, LS15 8ZB. In a recent blog
post, he stressed the importance of 'listening and responding to others'. Let's
see if he'll listen to us...
(You
can find details of your local MP here. )
Even if
you are only able to write one letter or email, it will help!
Please
forward this email on to anyone else who you think may be interested. Thanks for your help! Update (12th May 2012): See our news section for details of how to give your views to the Trust!
Leeds ME Network
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