We are a patient support group representing sufferers from CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) in the Leeds and Wakefield districts (all LS and WF postcodes). We have approximately 380 members, of which approximately 100 live in the Wakefield district. As it is difficult to obtain a diagnosis and, despite our best efforts, many people have CFS/ME for many years before they find out about the existence of our group, we estimate that the number of sufferers in the Wakefield district will be greatly in excess of this number.
Our response below makes several references to the recently published National Task Force Report on NHS services for people with CFS/ME. We have enclosed some information on how this report can be obtained and a list of its key points.
Thank you for the opportunity to comment on the Wakefield District Health Action Zone Plan first draft. Due to the very tight schedule, we have not been able to study the plan in as much detail as we would have wished, but we hope that our response will nevertheless be of interest.
We are encouraged by much of what we have read in the report, in particular the stated HAZ principles such as "the right for everyone to the determinants of health", the need for "reduction of inequalities in health, targeting resources and support to those most in need", for "anti discriminatory principles and equal opportunities", for services that "meet needs and are delivered to enhance health, dignity and well being" for "co-operative and joint working", for "evidence based practice", for "the need to work strategically", and for the stated emphasis on the "quality of life". All of these highlight areas in which the treatment of CFS/ME patients in the Wakefield district might be improved and we hope that it will therefore be possible to make specific provision for CFS/ME in your future plans.
The recently published National Task Force report on NHS services for people with CFS/ME states that
"The reality of the illness has been confirmed by a recent statement from the Chief Medical Officer (July 1998) as well as by reports from the Medical Royal Colleges (1996) and the National Task Force on CFS/ME (1994)."
"Between 0.3 and 2.6 per cent of the population are affected i.e. between 170,000 and 1.5 million in the UK."
In spite of this, there are currently no secondary care services provided in the Wakefield area for people with CFS/ME. There is therefore a desperate need to "target resources and support" to these people.
Additionally, the majority of GPs in the area (as in the rest of the country) have very little knowledge about CFS/ME. Some continue to believe that it does not even exist. Secondary care is available at the Fatigue Clinic in Leeds but a large number of GPs seem to be either unaware of its existence or unwilling to refer their patients to it. This clearly indicates a need for greater "co-operative and joint working".
Because of this situation, many patients are ill for years before they are able to obtain a diagnosis. This is in spite of the fact that, as the National Task Force Report states, "early diagnosis, advice about lifestyle management and skilled support are all helpful" and "good early management can prevent secondary complications". As the report goes on to say, "the current failure to provide at least a minimum service is wasteful and costly" and "it leads to unnecessarily severe and prolonged illness". This renunciation of a "preventative approach" and the subsequent entirely unnecessary reduction in the "quality of life" of those who are unable to obtain an early diagnosis surely demand attention.
There is also a problem of "inequality" in the treatment of CFS/ME sufferers. If patients are lucky enough to have a GP who is knowledgeable about CFS/ME, they will obtain an early diagnosis and advice on managing the illness. They will therefore be much more likely to achieve a full recovery. If however, as is more often the case, the GP is not knowledgeable about CFS/ME, then the patients will be left to struggle on as best they can, without knowing what is wrong with them or what might be done to help, and the likelihood is that they will become chronically ill.
There are therefore substantial inequalities in the treatment of CFS/ME in the Wakefield district, with care being apportioned according to chance rather than need.
To make matters worse, we have heard of several cases of patients being referred to consultants who not only seem to know little about CFS/ME but who also appear to adopt a disdainful and dismissive attitude because of their patients' diagnosis, so raising issues of "dignity" and "discrimination".
We hope that future plans for the Health Action Zone will make an effort to tackle these violations of the stated HAZ principles. Here are some of the steps which might be taken:
We hope you that you find our comments of interest and will agree that CFS/ME should be considered an important health issue which needs to be urgently addressed in the Wakefield area. We will be happy to do all that we are able to assist in this. Please get in touch if you would like to discuss our comments and suggestions further.
Simon O and Steve Theobold on behalf of Leeds and District M.E.Group (March 1999)
You are welcome to quote from this document and to use the information in your own campaigns for the benefit of people with M.E.
