23 May 2011
On Tuesday 10 May representatives from the All Party Group on M.E. (APPG) Mr Paul Burstow MP, Health Services Minister, to discuss issues facing people with M.E.
Details were as follows:
Members of All-Party Group present :
Annette Brooke MP
Ian Swales MP
David Amess MP
Countess of Mar
Also in attendance:
Dr Charles Shepherd (ME Association)
Tristana Rodriguez (Action for M.E.)
Annette Brooke opened the meeting. She said that although the APPG had recently enjoyed a very promising meeting in which they had heard from Professor Stephen Holgate on M.E. research, little if any improvement in NHS care has occurred for people with M.E. since the APPG reported the finding of its Inquiry in 2010.
The Group went on to raise points on the areas of work which had been agreed as a priority by the APPG:
Adequate training for relevant health care professionals
The lack of recognition of M.E. would continue to obstruct the progression of treatment services until M.E. is recognised as a neurological condition across Government Departments. Although when asked parliamentary questions the Government repeatedly say that they recognise M.E. as a neurological condition, current practice within the Department of Health, Department for Work and Pensions and Atos suggests that this belief has not been disseminated. Many GPs still do not accept that M.E. is a neurological condition.
Could the Department of Health issue a directive, updating its partner departments and relevant organisations of the latest thinking?
The Group reported that they had been encouraged by the last APPG meeting with Prof Stephen Holgate in which he explained how the Medical Research Council (MRC) had invited applications for funding on research into CFS/M.E., for which it had set aside £1.5million. The Group were concerned, however, about how wide the MRC had cast its net and had agreed to write to Professor Holgate for an update on the calibre of the applications which are received.
Understanding of the presentation of M.E. among children is a particular concern due to safeguarding issues as some parents of children with M.E. are being incorrectly reported to social services for negligence.
There continues to be very little provision by the NHS for those who are severely affected by M.E. and who therefore cannot leave their homes to attend outpatient services. Awareness is a problem once again because some people with M.E. are being wrongly assessed as having mental health disorders and forced to have treatment under the Mental Capacity Act.
Inequalities in health care provision
Little has been done to address the inequalities identified by the Group’s Inquiry into NHS services for people with M.E. There continues to be a postcode lottery.
NHS reforms and budget cuts. The Group expressed grave concern that many services including St Helier and Romford are now under threat.
As only a limited amount of time could be set aside for the meeting, Mr Burstow advised the group that he would respond in writing. The response will be posted on this website as soon as it is received.