All Party Parliamentary Group on ME meet with Care Services Minister Paul Burstow, 10 May 2011

Four members of the All Party Parliamentary Group (APPG) on M.E. – Annette Brooke MP, Ian Swales MP, David Amess MP and the Countess of Mar – met with care services minister Paul Burstow on 10 May to discuss services for people with M.E.

Annette Brooke opened the meeting by saying that, although the APPG had recently heard promising news 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:

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 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. 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. Some people with M.E. are being wrongly assessed as having mental health disorders and forced to have treatment under the Mental Capacity Act.

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.

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.

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