May 2004

Dear GP/Practice Manager 

ESSENTIAL SERVICES FOR SEVERE ME SUFFERERS 

I write enclosing an Information Pack produced by the 25% ME Group, a national support group for severe ME sufferers, to which I belong. 

This report was prepared in connection with an annual ME Awareness Campaign held in May of each year. Part of the pack comprises an analysis report based on the findings of a recent questionnaire sent to members by the above support group, the aim of which being to outline and emphasise areas of shortfall in support services received by those severely affected by ME. This report highlights medical and social care services required as well as the necessary practical and financial assistance so desperately needed by all those who are affected by this dreadful condition. 

The aim of this report is to highlight the lack of services available to sufferers to all those in the public arena, including MP’s, healthcare professionals and social services. The intention is not to illustrate any one area in a negative way, but to provide a positive outline emphasising those areas requiring improvement in order to assist service providers in catering for the needs of those affected by ME. 

I realise, that as a healthcare professional, your time is very precious but please take the short time required to read the enclosed report. In particular, Section Three relates specifically to health services and includes some fairly startling facts and figures regarding a variety of areas including lack of access for the severely affected to primary healthcare services and highlights the desperate need for the appropriate domiciliary healthcare services to be put in place. 

This section also outlines the problems experienced by the severely affected in attending hospital in order to receive appropriate investigations and treatments and suggests possible strategies which could be put in place to alleviate some of those problems, for example, the provision of a quiet area with a bed where patients could lie down while they wait to be treated. I realise that hospitals, or indeed health centres, at present are often unable to provide such facilities, but, given the detrimental affect on patients’ health when these needs are not met, I feel it is important to try and accommodate this kind of provision.  

I also feel very strongly that the current “treatments” on offer within the NHS, are largely inappropriate to those suffering from this condition and indeed the most popular forms used (ie. Graded Exercise Therapy and Cognitive Behaviour Therapy) may often result in more harm being done to the patient as shown in our figures contained within page eight of the report. 

As one of the primary providers of healthcare within the community, I feel more steps should be taken to listen to the patient’s needs in an effort to understand and recognise the enormous impact of this devastating illness on the individual’s life and to try to accommodate the varied and specific needs of such a group of patients. 

I hope you find the enclosed pack both informative and helpful. 

Yours sincerely