1st March 2011

FORWARD-ME

Minutes of the meeting held on

Tuesday 1^st March 2011

1 pm

HOUSE OF LORDS.

1. Present:

Margaret Mar – Chairman

Christine Harrison – BRAME

Bill Kent ReMEmber

Janice Kent – ReME

Sue Waddle - MERUK

Charles Shepherd – MEA

Mary-Jane Willows – AYME

Jane Colby – TYMES Trust

2. Apologies:

Tanya Harrison – BRAME

Peter Spencer – Action for M.E.

3. Minutes of the meeting held on 26 January 2011

The minutes were agreed as a true record.

4. Matters arising

The Chairman told the Group that she had invited Anne Faulkner of the CFS Research Foundation to join the Group. Ms Faulkner had replied that her health was not good enough to attend at present but she would like to be included in any communications and would reconsider if her health improved.

5. NHS Commissioning and ME/CFS service models

CH had asked that the proposed changes to the NHS, including the introduction of GP consortia be discussed. She reported on the current situation in her region and the real concern, at all levels. The proposed changes were likely to make it more difficult to highlight the need for appropriate biomedical services and to negotiate on behalf of people with ME/CFS.

JC said the Tymes Trust agreed with the principle of GP Consortia as the Trust had had some success in helping families get a good relationship with their GP and had always felt that basing services around the GP was a better principle than the fatigue clinics. She knew of great dissatisfaction with the clinics and believed that the freedom to change GPs could be better for children with ME/CFS. CH suggested that it might be more difficult for those who were housebound or bedbound to choose a GP/GPC, particularly in rural areas or where GP’s were no longer doing domiciliary visits.

Several speakers stated that they were not happy with the style of clinics that provided the current psychosocial model of ‘therapy’. However, if these clinics were closed, some way should be sought to preserve the funding for ME/CFS clinics with a biomedical approach. CH had battled for almost 5 years with 3 PCTs for the re-establishment of their specialist, consultant-led, biomedical ME/CFS service based on the Canadian Clinical Guidelines and Criteria. She said that the patient representatives and patient surveys in her region would accept nothing less.

The Chairman told the Group that many members of the House of Lords were unhappy with the proposals for GP Consortia and were going to oppose them.

M-JW reported that she was still waiting for responses from some Health Authorities. Those that had responded so far were all expecting their services to be cut within the next 2-3 months. Mary-Jane will forward full details when all the results are in. (Update: She will need their written permission to do so as some are concerned that ‘going public’ might worsen matters).

JK told the Group that on the 14^th of May, Dr Kevin Davies, Head of Research at Brighton & Sussex Medical School, was to give a talk on CFS and fibromyalgia.

MJW told the Group that she planned to continue to look to support specialist NHS services as many AYME members were pleased with the service they receive and do not want the services to close. If the services closed altogether that funding might be lost.

BK said that there was always scope to improve services. JC told the Group that there may be difficulties in putting together a joint response from Forward M.E. as Tymes Trust would not wish to be associated with a statement supporting the present clinics.

The Chairman said that people in their local areas should be encouraged to give feedback to their local services if they were not happy. JK suggested that if people are unhappy with their local service they can always go through the complaints procedure.

CS said that patient feedback indicated that patients would like a biomedical-based service. There was considerable concern as to what would happen as a result of the PACE trial.

6. Child protection and the use of the Mental Capacity Act

JC thanked the Group for supporting her request for this to be added to the agenda of the APPG on M.E. She advised the Group of a copy of a letter she had from a consultant to the parents of a child with ME/CFS which indicated that, because the child had not responded to any of the treatments recommended in NICE they were rescinding the diagnosis of ME/CFS and referring them to social services. SW said that she had also encountered such cases.

The Chairman said she would raise this with the Minister, Earl Howe and with the General Medical Council as it indicated a training need for doctors.

JC also raised the issue of access to education for children with ME/CFS and the concern that paediatricians often seem unaware of the child’s right to suitable education, using school attendance as if it were a treatment.

The Chairman asked JC and M-JW to work together on some draft questions she would be able to table some parliamentary questions.

SW expressed concern at the conduct of the CAMHS who, when a patient did not recover quickly enough from ME/CFS referred them to mental health services. The Chairman said that she has also heard reports of the Mental Capacity Act being used on adults with ME/CFS. She would like to be informed of any further cases which the Group become aware of.

JK described the case of a child with ME/CFS being referred to Child and Adolescent Mental Health Services (CAMHS) because they were upset at losing their friends. The Group discussed concerns about awareness of ME/CFS within CAMHS units. M-JW stated that poor awareness was often evident within education services as well.

CH was concerned that the statements that her daughter fought so hard for during the NICE negotiations on the Guidelines were being ignored, such as “You can refuse treatment without detriment to your current or future care.” Both M_JW and JC said that they had found these statements helpful.

7. DWP matters

CS reported back on the latest meeting with Professor Harrington’s working group which was looking at Work Capability Assessment Descriptors for fluctuating conditions. A major concern was the recent Statutory Instrument which would implement the recommendations of the DWP internal review. There was to be a meeting of the Chief Executives of the charities on the working group to ask Professor Harrington and the DWP clarification on how Professor Harrington’s task group report would be implemented alongside the internal recommendations.

8. Research

The Chairman told the Group that Professor Malcolm Hooper is preparing a scientific riposte to the PACE trial which he is hoping to get published in The Lancet.

SW stated that Dr Neil Abbott of MERUK was preparing a response to PACE.

CS planned to draft a letter to the Lancet which he will forward to the Chairman so that the Group can consider registering support. CH suggested that it would be more effective if the group showed support for the letters in order to present a united voice.

The Chairmen told the Group that the last meeting of the APPG on M.E., which was addressed by Professor Stephen Holgate, was most productive and hopeful with regard to the research agenda for ME/CFS

9. NICE

The Group expressed concerns that the results of the PACE trial would reduce the likelihood of a review of the NICE Guidelines.

10. Any other business

CS told the Group that the MEA and Action for M.E .were making progress in setting up the Biobank for M.E., and also that there was also a new investigation into gene expression being funded by the CFS Research Foundation.

The Chairman told the Group that she had written to NICE to request a speaker to address the Group but they had declined.

JC said that it had been announced that there was going to be a new joint director for Children’s Services in three London Boroughs, and suggested the Group might invite them to meet Forward-ME.

The Group agreed to re-invite Professor Malcolm Harrington to address Forward- ME.