Our involvement in national issues has varied over the years depending on the interest and energy available. Fortunately, however, we have always seemed to have some members with a keen interest in politics and have been able to contribute to the national debates on many issues relating to ME/CFS, for example:
- Nov 2006: Our comments on the draft NICE guidelines (submitted via the ME Association)
- March 2007: Our submission to the Health Select Committee on the workings of NICE
- May 2007: Joint statement by ME charities on the NHS Plus guidelines (we were involved in the debate around these guides and therefore invited to sign the statement)
Local NHS Services
We try to keep in touch regularly with those local hospitals which provide an ME/CFS service and to influence the development of those services by, for example, pressing for home care and a range of services and for the NHS to recognise that the mainstream therapies of Cognitive Behavioural Therapy and Graded Exercise Therapy may be inappropriate for many, particularly the more severely ill.
Back in 2004 the group was invited to comment on bids both the Royal Free and St Bartholomew’s Hospital had submitted to the Department of Health for more money to develop their services. This we did – members were canvassed by telephone and post for their views which we fed into our written support for the bids (although unfortunately neither was successful in the end).
Recent cuts in funding by several Primary Care Trusts (the NHS funding bodies that commission healthcare) have caused serious concern for the future of the ME/CFS service at the Royal London Homeopathic Hospital, maybe even for the Hospital itself. We have written to PCTs strongly supporting the Hospital and encourage members to do the same.