Suffolkres
Senior Member (Voting Rights)
Many thanks for this heads up, I have used it as follows to alert our local NHS Alliance Commissioning & Contract Team :
'Dear Nicola and Carrie,
I hope the recent Suffolk/North Essex Alliance (CCGs) position paper meeting on Me and CFS further service developments was a positive experience regarding our local petition for adequate local services.
The topic of ME services within the NHS was recently discussed at a ForwardME meeting.
https://forward-me.co.uk/14th-july-2021/
Please note following;
https://forward-me.co.uk/
Baroness Scott of Needham-Market
Ros Scott has been a member of the House of Lords since May 2000, and has a particular interest in the Voluntary and Community sector, and the environment.
She is keen to foster better understanding of ME, and is a member of the All Party Parliamentary Group for ME.
Email: ScottRC@parliament.uk
regards,
B
Suffolk Youth & Parent Support
and
Norfolk and Suffolk ME and CFS Service Development Group.
reMEmber’s observations on the ME/CFS services in the NHS
This was led by the charity reMEmber, who made some good points. I'm going to duplicate here
These services were set up more than ten years ago but there has been no national review of them. The model was not to our liking from the start.
Our preferred model would have been along the lines of that formerly run by Professor Tony Pinching at Barts, with a consultant who would see all patients referred to the service, who could prescribe medicines, and backed up by a small team of experts eg occupational therapist, community nurse.
There is not comprehensive coverage. Some places have never had a ME/CFS service. In other places there was once a service which has now closed down. We believe that there is no service at all in Wales and not much in Scotland.
Some clinics have no doctor attached. In others there is a doctor but he or she may be only part-time. GPs with a Special Interest have been shown not to be the answer; patients need to see an expert doctor, but many do not see a doctor at all at their ME/CFS clinic.
The deficiencies in these services were highlighted in two important reports in 2017. “Specialist treatment of CFS/ME; a cohort study among adult patients in England” by Bristol University found that two-thirds of patients seen by those services reported, after one year, that their condition was only a little improved, unchanged or worse. Five years after being seen 85% of these patients reported they still had CFS/ME, 9% said they were uncertain and only 5% said they no longer had the condition.
The second study “Spotlight on specialist services; UK healthcare for people with ME”, produced by AFME found that less than half of the Clinical Commissioning Groups (CCGs) and their equivalents in Northern Ireland, Scotland and Wales commissioned a specialist service for CFS/ME and less than a third recorded any data on how many people in their area had the illness.
Early, accurate diagnosis is essential, but patients are not seen early enough and there is a high rate of misdiagnosis by GPs (40% at Newcastle and Barts for example)
Many centres have no domiciliary service or provision for the severely affected who cannot get to an out-patient facility. There is nowhere with an in-patient facility for ME/CFS patients and the ME/CFS clinics do not provide for children with the illness.
Therapy in the centres is almost entirely CBT or GET (because of NICE and PACE). There are some exceptions; when Dr Amolak Bansal (Immunologist) led the South West London and Surrey service they offered Vitamin B12 by injection, Vitamin D3, mindfulness meditation, hormones including melatonin for sleep disorders, antivirals, antibiotics and Pacing – the therapy preferred by most ME/CFS people. A key point was that these therapies were offered on a personalised basis (not “one size fits all”). We attended their tenth birthday party in 2016; a number of past patients were there, and all said how improved they felt in mind, body and spirit – they knew they were not cured but they were able to manage their condition much better.
reMEmber has, on a number of occasions, brought these shortcomings to the attention of the DHSC and NHS England. Sir Nicholas Soames, when an MP, and the Countess of Mar have both asked Questions on our behalf in Parliament, but the answer is always the same – that provision for CFS/ME is a matter for the local Clinical Commissioning Groups (CCGs). Our attempts to engage CCGs on this subject have been unsuccessful; looking at ME provision seems to be very low down on their list of priorities.
However, with the re-organisation of Forward-ME and with the new NICE Guideline in mind, now may be a good time to focus the Health Departments once more on this subject.
A united Forward ME would carry much more weight than an individual charity. We suggest pressing for a thorough review of the ME/CFS services within the NHS with a view to establishing a comprehensive, nationwide service. reMEmber recommends:
All patients to be examined by an expert consultant physician
Prompt, accurate diagnosis
A domiciliary service for the severely affected
A dedicated service for children and young people with ME/CFS.
Multi-disciplinary teams in all centres'
