Meeting held Tuesday 9th November at 3.15pm.
Room B, One Parliament Square
David Amess MP
Annette Brooke MP
Martin Vickers MP
Countess of Mar
Parliamentary office representatives in attendance
Joanna Ashworth, Office of David Amess MP
Sara Sproakes, Office of Sharon Hodgson MP
Secretariat in attendance:
Tristana Rodriguez, Action for M.E.
Dr Charles Shepherd, M.E. Association
Sir Peter Spencer, Action for M.E
John Leech MP
John Thurso MP
Caroline Lucas MP
Peter Aldous MP
Russell Brown MP
Elfyn Llwydd MP
1. Welcome by the Chairman
The Chair advised the Group that this would be his last meeting as Chair. The Group agreed to continue to meet and would find a new chair before the next meeting.
2. Minutes of the last meeting
The minutes of the meeting held on 7 July 2010 were approved as a true record.
3. How the APPG for M.E. will operate during this Parliament
The Group agreed to hold the next meeting in February 2011 and that this will not be open to the public.
The aim would be to hold four meetings per year.
Minutes of meetings would be published online for the general public to see.
The Group was aware of concerns about attendance by members of the public that had been raised by a number of individuals and patient groups.
4. Programme of Work for next 12 months
The Group noted the Legacy paper bequeathed by the previous APPG and decided that it would agree a programme of work for 2011 at its next meeting. Meanwhile they decided to approach Andrew Lansley and Ian Duncan Smith to ask them to ensure that the recommendations of the APPG Inquiry into NHS Services will be given serious consideration by their respective Departments.
5. Impact of new Welfare Support system on people with M.E.
The point was made that the drive to provide people on long-term benefits with a route back to work has caused great stress to people who are genuinely ill, especially people with M.E. and this is having a seriously adverse impact on their health.
Professor Malcolm Harrington has been tasked by the DWP with writing an independent report on the Work Capability Assessment.
The Group agreed to include Professor Harrington’s report in the agenda of the February meeting.
6. Scientific Research
The Group was reminded of the recommendations of the CMO working group concerning research and the recommendations of the Gibson Inquiry. It was noted that the MRC has funded some research into intervention therapies for M.E. but that it has so far funded virtually none of the biomedical research into M.E. which is so badly needed.
Professor Stephen Holgate has formed an expert group for M.E. within the Medical Research Council (MRC) which has drawn up and published an agreed list of priorities for M.E. research which has a significant emphasis on understanding the biology of this illness.
The group agreed to invite Professor Holgate or Sir John Savill, the recently appointed CEO of the MRC, to speak at the next meeting.
Other areas of concern raised were recent research on xenotrophic murine leukaemia retrovirus (XMRV) and the SMILE Trial into the Lightning Process for children.
The Group agreed to keep the following under review as priorities:
– Lightning Process
– Ban on blood donation for people with M.E.
David Amess left the meeting at this point and Annette Brooke MP took over the chair.
7. Provision of NHS Services for M.E. patients
Concerns were raised about the delegation of responsibility from central Government to local care commissioners which has led to wide variations across England in the quantity and quality of specialist health care provided to M.E. patients. Children with M.E. and the severely affected are particularly badly provided for by the NHS in most areas.
It is possible that new Information Systems being installed to enable all Primary Care Trusts to report on the outcomes of the health care provided in their area will help to identify deficiencies in M.E. service provision so long as there is sufficient detail in the reports, a point that this APPG could usefully first monitor and then raise with the Department of Health if necessary.
In summing up from the chair, Annette Brooke said that the three major themes of the meeting – Welfare support, Scientific Research and NHS Service Provision needed to be kept under continuous review at future meetings. The Group agreed to draft letters to Paul Burstow, Lord Howe and Chris Grayling highlighting key concerns and inviting them to meetings with the Group during the course of 2011.
8. Date of next meeting
February 2011, exact date to be arranged.
9. Any other business
The Countess of Mar commended “The Sound of a Wild Snail Eating” a book by Elisabeth Tova Bailey which might be appreciated by many people with M.E., their carers and supporters.