From BBC Cornwall website, 7 February 2012
Cornwall's chronic fatigue syndrome (ME) service is being reviewed.
The Royal Cornwall Hospital's Trust said it had temporarily closed referrals for new admissions after the retirement of the head of the service.
The Trust also said there was “a national shortage of experts in this field”.
About 300 people a year in Cornwall are diagnosed with the condition and there are currently about 80 patients waiting to be seen.
Cornwall's ME service provides therapy clinics in hospitals across Cornwall, including Stratton, St Austell, Helston and Penzance.
Elaine Peller the Chairman of Mesh, an ME Support, Help and Action group in Cornwall, said: “We're passionate about our service. We are absolutely desperate for them to get that medical replacement in place as soon as possible.”
In a statement the hospital's trust said: “We are looking at models of services that are working effectively in other parts of the country and which make use of greater input from psychology and occupational therapy specialists.
“We are involving local patients in the review and whilst it is completed, NHS Cornwall and Isles of Scilly have agreed that we should temporarily suspend new referrals to the service.
Patients will continue to receive care under the management of their GP.”
ME is a neurological condition which can leave patients feeling exhausted with muscle pain, flu-like conditions, digestive conditions, swollen glands and nausea.
Dr Charles Shepherd, from the ME Association, said: “Unfortunately the service problem in Cornwall is not unique. There are other services with this illness closing down in other parts of the country and they're not being replaced by new services springing up elsewhere.”
BBC Radio Cornwall ran interviews with Elaine Peller and Dr Charles Shepherd this morning. The item was the lead story at 7am, 8am and 9am, please click HERE for the playback.
Oh Lord, it doesn’t look good for the Cornwall ME/CFS service! It has always been held in high esteem by its service-users.
We carried this story about the review in the January issue of our ‘ME Essential’ magazine:
Cornwall ME/CFS service put on hold after Professor Pinching’s departure
Cornwall ME/CFS Service has closed to new patients for three months while a full-scale review takes place.
Following the retirement of clinical immunologist Professor Tony Pinching in September, the Royal Cornwall Hospitals NHS Trust finally realised that it had failed to make any provision for the future medical provision of this valued community service, writes Russell Fleming.
Those most involved recognised that the service was under strain from both a growth in patient numbers and a lack of adequate medical cover. But the Trust failed to act on business plans advanced years previously and the situation was compounded more recently by one of the two remaining speciality GPs having to take long term sick-leave.
Some 400 patients are overdue to be followed up and, in November, there were 30 new referrals waiting to be diagnosed – although to what extent this exceeds statutory waiting times is unclear at present.
The trust finally reached a decision on December 21 that the service would would not take any more referrals for three months pending a full review.
The ME/CFS service delivered a multi-disciplinary approach that had been commended by patients and professionals and had been used as a working model in other counties.
Last year, it was recognised in an independent neurological audit commissioned by the Cornwall and Isles of Scilly Alliance of Neural Domain Organisations (CAN-DO) as being a leader of good practice.
The service also works closely with MESH Cornwall, the county’s main patient support organisation for people with ME/CFS.
With only one remaining speciality GP, there is concern that an inadequate number of patients will be seen in the next three months and there will be an inevitable build-up of appointments – all needing the attention of a medical specialist.
Whilst the hospitals trusts and the Primary Care Trust have indicated that this is not the end of the service and that it is indeed highly viable as well as valued, there remains much uncertainty.
Both MESH Cornwall and CAN-DO will be urging the Trust to contact patients and let them know what is happening and provide reassurance.
They also hope that an invitation to become involved with the review will be accepted in the spirit of ‘No Decision about Me without Me’.
* The 118-page CAN-DO neurological services audit can be downloaded from the alliance’s website at http://www.candoweb.org
* MESH Cornwall’s website: http://www.meshcornwall.org
* Cornwall ME/CFS service: http://tinyurl.com/7jpbg3j
* Mr Fleming is an active member of CAN-DO.
It surprises me that anyone goes to this service as all they offer is the multidisciplinary CBT and GET offered by clinical psychologists, physiotherapists and occupational therapists. I can’t understand how people can say that it is an invaluable service. They even clearly admit in the article above that they are making greater use of psychology and occupational therapy. To treat ME? Really? As per usual most of their patients will be diagnoses with CFS and told this is the same as ME when in fact most of them will have chronic fatigue caused by other undiagnosed illnesses and in fact do not have ME at all. Do they have any statistics to show how many people have dropped out or been made worse by their NICE guidelines and PACE guided treatment or managment programme because I would like to see all these clinics publishing this information!