The Cross Party Group on M.E. (M.E. as defined by the World Health ,Organisation) will formally break up before the Scottish Parliament elections in May 2007. The Group leaves the following legacy paper to the Cross Party Group that will reform following the elections so that the work that has been carried out over the last 6 years will be clear and may continue as seamlessly as possible.
CENTRE OF EXCELLENCE FOR M.E.
The Cross Party Group on M.E. would like to see the setting up of a Centre of Excellence for M.E. The advantages of a centre of excellence would be in coordinating epidemiology, research and strategic needs; disseminating research information and best clinical practice throughout the health service; and monitoring the clinical course of M.E. in patients.
MANAGED CLINICAL NETWORK (MCN) for M.E.
At present, there is currently a Managed Clinical Network (MCN) for CFS/M.E. in development that covers Fife, Lothian and Dumfries and Galloway. The Cross Party Group would like to see the development of a Scotland-wide MCN for M.E. to ensure greater uniformity in access to and quality of appropriate services when available and facilitate the dissemination of
information across the country. Development of an effective and dedicated MCN is contingent on the establishment of a Centre of Excellence.
The Group would like government funding of M.E research to be prioritised and, if possible, ring-fenced. There also needs to be a redirection of funding; funding of research into a potential diagnostic test, for example, has been paid for by M.E. charities. The evidence is clear that there has been a considerable imbalance in government funding of research into M.E. in favour of psychosocial research rather than biomedical research. This is acknowledged in the report Inquiry into the status of CFS/ME and research into causes and treatment (the Gibson Report) published in November 2006. The Group holds the view that rectifying this imbalance is a priority. Finally, the group would like policy makers and service providers to recognise the international body of existing research.
The Group expresses considerable concern about the expense and effectiveness of funding the PACE trial. It observes that the diagnostic criteria are too wide and include categories of patients other than those with M.E. and strictly defined CFS. This questions the validity of its findings. There are also concerns about the definition of treatment criteria and monitoring
The Cross Party Group would like to see the development of clinical guidelines that reflect the unique and distinctive clinical presentation of M.E and take full account of the growing body of biomedical evidence regarding the basis of this illness. The NICE drafts Guidelines have received universal criticism across the UK and the charities have issued a joint statement to this effect. The Group strongly recommends that the Scottish Executive does not adopt these guidelines, in their current form, as in their management guidance, they have failed to take account of consistent patients’ reports of the damaging effects on their health, including long-term harm, of imposed behavioural and activity management interventions such as CBT and GET. Instead, the Group proposes the adoption of the diagnostic and treatment protocol produced by Carruthers et al (often referred to as the ‘Canadian’ definitions) which is based on a clear and sound understanding of the clinical presentation and biomedical basis of M.E./strictly defined CFS. The Group also hopes to gain a better understanding of the roles of NHS QIS and SIGN.
WELFARE BENEFITS GUIDELINES
Similarly, the Department of Work and Pensions guidance on M.E. has received much criticism across the country and, again, the charities have released a joint statement of condemnation. This is recognised by the Cross Party Group in motion S2M-5563.
BUILDING ALLIANCES, UNDERSTANDING, AND PARTNERSHIPS AND RAISING AWARENESS
The Group continues to seek to build alliances, improve understanding and work in partnership with a wide body of groups and individuals who have a stake in improving the lives of those living with M.E. This includes the Health Committee of the Scottish Parliament and the Scottish Parliament as a whole, the Chief Medical Officer, the Chief Scientist, the Health Minister, the health service, other Cross Party Groups, the Long Term Conditions Alliance Scotland, social services and education services.
The Group would also like to note that as M.E. Awareness Week will take place during the elections, the new Cross Party Group may wish to have an awareness raising event in June.
CONSULTATION AND ACTIVE PARTICIPATION
The Cross Party Group regrets that consultation between the Scottish Executive and people with M.E. has been inadequate.
The Group would like the Scottish Executive, health boards and other policy makers to have meaningful consultation with biomedical researchers, people with M.E., patient groups and the Cross Party Group. The Group hopes that the forthcoming Assessment of Needs of people with M.E. will involve active and formal consultation and be based upon the unique clinical features and symptom pattern of M.E.
Clinical Guideline development and the work of a Managed Clinical Work should also be committed to full consultation with people with M.E. and their carers, including the severely affected and housebound.
EDUCATION / TRAINING OF HEALTH PROFESSIONALS
The Cross Party Group highlights the need for improved education of all health professionals in the recognition, treatment and management of M.E. in both training and continuing professional development. There is also a need for raising awareness of the nature of M.E., and the needs of M.E. patients, amongst professionals in education and social services.