Sussex ME group, reMEmber, welcomes APPG Report on NHS services on all counts

December 7, 2009

One of the Sussex ME groups – reMEmber – has welcomed without reservation all 11 recommendations of the recently launched interim report of the APPG on ME inquiry into NHS services.

In a statement issued on 7 December 2009, reMEmber director Mrs Janice Kent wrote:

reMEmber congratulates the APPG on this excellent report. Our comments on each of the recommendations are set out below.

Recommendation 1   Agreed. reMEmber has been saying for years that an audit of CFS/ME patients is essential. The Department of Health should fund a national study.

Recommendation 2   Yes. There is of course a NSF for neurological conditions and another for children, but CFS/ME appears to have been lost by them. CFS/ME/ fibromyalgia will get the services needed only if bodies of this kind concentrate exclusively on those illnesses.

Recommendation 3  Yes. Revisit the report to the CMO and make PCTs report on how they will fulfil its recommendations. Probably should be done via the DH and Strategic Health Authorities.

Recommendation 4
  Most important. And the services should be led not just by physicians but by consultant physicians – experts in CFS/ME. It has been shown that GPWSIs are not the answer. Furthermore patients should not be simply returned to their GPs after diagnosis and some limited illness management advice. They should be followed up by the service for at least five years and seen by the consultant at regular intervals. Among other things the consultant would prescribe medication and monitor the patient for possible development of other conditions. We know of several cases where patients were simply returned to their GPs with a (no doubt correct) diagnosis of CFS/ME and because of that diagnosis were not regularly checked; it was only when those patients became obviously and severely ill with other symptoms that another condition (eg diabetes, cancer, multiple sclerosis, crohn’s disease, lupus etc) was recognised. In our view patients with CFS/ME should not be returned to their GPs until the subject has been included in medical school and post-graduate training for five years or more, until GP’s have the skills and knowledge to manage this condition.  The advice not to over investigate patients is a problem when GPs can’t differentiate between conditions.

On the point about local patients and support groups we would add that NO CFS/ME charity or support group should be ignored as has happened in the past. That doesn’t mean the services would have to act upon the wishes of the support groups, but they should take heed of what those bodies are saying.

Recommendation 5
   Agreed, as a matter of urgency. There is a  paucity of CFS/ME provision for children and young people.

Recommendations 6 and 7
   We agree entirely. The reason why a network of CFS/ME services was set up about five years ago was because GPs knew little or nothing about the illness and how to deal with it.  Appropriate training should start now as a matter of urgency.


Recommendation 8 
    Agreed.  Regarding NICE it is essential that pressure be put upon them to review their guidance in August 2010 – as was proposed but not so far confirmed. Our objection to the NICE guidance was not that what was in it was bad or wrong but simply that it covered very little and missed a lot. They have the chance to put that right.

Recommendation 9   Yes. The new and ongoing biomedical research should be given a higher profile –ie more publicity and funding.

Recommendation 10
   Agreed. There should also be advice about seeking help from the Citizen’s Advice Bureaux and other reputable bodies who provide help on benefits claims and appeals.

Recommendation 11
   Agreed. And there should be several units with in-patient facilities around the country.


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