We are a patient support group representing CFS/ME sufferers 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 responses below make 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.
a) What are the most important health issues to be tackled in the HIP?
As our organisation is concerned with the needs of those who suffer with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), our answer to this question will not be difficult to predict. However, we think that the facts speak for themselves. 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."
There are currently no secondary care services for people with CFS/ME in the Wakefield area.
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. Many patients are therefore 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".
We hope you will agree therefore that CFS/ME should be considered an important health issue in the Wakefield area and needs to be urgently addressed.
b) What should be done about these issues?
As the National Task Force Report states, "immediate steps should be taken to provide an initial minimum service in each district" which "should cater for at least 0.1 per cent of the population".
c) What can you and your group or organisation do to help?
To quote once again from the National Task Force Report,
"Patients and patients' organisations should be consulted in the provision of services"
"NHS trusts should work to establish constructive relations with patients' representatives"
"Patients' organisations have much experience in providing information and support"
"The resources of patients' organisations could be used much more"
We will do whatever we can to help. In addition to any advice which we ourselves can provide, we will be happy to place NHS staff in touch with doctors who are knowledgeable about CFS/ME.
d) How will your work help to reduce health inequalities?
At present there are gross inequalities in the treatment of CFS/ME. 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 and be much more likely to achieve a full recovery. If, 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. 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.
e) What strategies or plans are you involved in/aware of that already address important health issues?
Our organisation provides information for CFS/ME sufferers which they are not, in a great many cases, currently able to obtain from their doctors. We believe that this advice should be obtainable through the NHS.
Leeds M.E. Group November 98
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.
