Action for M.E. publishes its initial responses to the Interim Report of the APPG on ME.
Initial responses to the APPG interim report
03 December 2009
The All Party Parliamentary Group (APPG) on M.E.’s interim report on its Inquiry into NHS services for people with M.E./CFS, was launched yesterday in the presence of the Rt Hon Mike O’Brien MP, Minister of State for Health Services.
The Minister had been shown a courtesy copy of the report in advance of the APPG meeting.
He broadly supported the main thrust of the recommendations, although he questioned some points of detail. He was at pains to point out that budgets and responsibilities delegated to Primary Care Trusts meant that lobbying at the local level for better treatment of patients was usually more effective than looking towards ministerial intervention.
Nevertheless he acknowledged publicly that the implementation of the 2002 CMO report has not been developed sufficiently and that the system in the NHS was not good at dealing with complex illness such as M.E.
He later admitted, as a former Minister in the Department for Work and Pensions, that this Department also did not deal well with this illness.
The Minister identified three priorities:
1. To improve the quality and levels of service across all areas of the country and eliminate the variations in how patients are being treated.
2. To get agreement across the medical profession on a clear view about the clinical pathways for people with M.E.
3. To increase scientific research and our knowledge of the statistics of the needs of those with M.E.
Sir Peter Spencer, CEO, Action for M.E., invited Mr O’Brien to promote research as a key priority, because without a proper understanding of the biology we would not achieve the necessary agreement amongst doctors.
The Minister has agreed to write to the Medical Research Council, highlighting the need for research and to the Department of Health about the postcode lottery which exists for people with M.E.
A full transcript of the meeting will be posted on this website in due course.
Commenting today on the APPG’s interim report, Sir Peter said:
“It is of course disappointing that the full report with the supporting evidence has not yet been published owing to the limited resources available to the Inquiry group.
“However we recognise that it is nevertheless appropriate for the group to promulgate these recommendations early. This creates the opportunity to make the right impact with Health Ministers and with all major political parties at Westminster in order to establish cross party commitment to a longer term agenda that can be followed through when the next Parliament is formed after the election.
“The eleven recommendations in this interim report are welcome.
“There may not be anything that is particularly new here but together these recommendations form a powerful re-statement of the compelling need for improvement and for consistency throughout England in providing high quality healthcare to all people with M.E.
“Action for M.E. supports the emphasis on meeting the particular needs of children and the severely affected.
“We welcome the focus on training in M.E. for medical students, GPs and other healthcare professionals.
“And we strongly agree with the importance attached to biomedical research.”
Commenting on two recommendations in particular, Sir Peter added:
(Recommendation 1): “Establishing accurate estimates of people with M.E. is a major challenge. The pilot disease register which has been developed within the M.E. Observatory with money from the Big Lottery Fund could be expanded to play an significant role in this aspect of the needs assessment within each catchment area of the NHS.”
(Recommendation 4): “In remedying the lack of consistency in treatment options offered in different PCTs, the D of H should address variations in both quantity and quality; it should also implement the Government’s commitment to patient choice with treatments tailored to each patient’s specific needs and preferences.”
Inquiry into NHS Service Provision for ME/CFS
Click link for PDF: Official PDF of APPG Interim Report v1