Forward-ME

Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 15 January 2013, 2pm

1. Present: Countess of Mar (Chairman); Dr Charles Shepherd (MEA);
Sonya Chowdhury, Tristana Rodriguez and Jenny Lincoln (AFME); Janice and Bill Kent (reMEmber); Jane Colby and Anita Williams (Tymes Trust); Sue Waddle (ME Research UK) and Christine Harrison (BraME)
2. Apologies had been received from Mary Jane Willows, Anne Faulkner and Arlene Wilkie. The Chairman welcomed Professor Malcolm Harrington.
3. Professor Harrington’s address – The Chairman welcomed Professor Malcolm Harrington
a) Prof Harrington said this part of the Review had disappointed many people because it appeared to say nothing new. But the work was nowhere near finished. Dealing with benefits was very difficult work and he had some sympathy for those working in benefits. Mostly they could see the value of his recommendations. The numbers of people found unfit for work had gone up whilst the numbers found fit for work had gone down, but the majority remained somewhere in the middle. Getting the co-operation of the Tribunal judges had been difficult. Training was taking place in Atos – they were doing a lot of courses. He described the Government’s response to his report as “lukewarm”. He did not know who would replace him now that he was leaving.
b) The Professor said he was recommending that independent medical assessment was crucial. The decision maker should be the person who looks at the assessment. He had agreed to try to keep this evidence-based review on track and make sure it was done properly. Atos people must be fully trained to do assessments, and there should be a scrutiny group to oversee the whole process. His prediction was that the DWP’s descriptors would be found to have flaws but they would be better than they are now. It was important that DH should deal with the patient representative groups and ask what they think of the guidance.
4. Questions
a) Christine Harrison said she was having difficulty getting people to accept her questions – for example, regarding PIP, why had terms like “pain”, “fatigue” and “breathlessness” been removed? Dr Shepherd commented that they were pressing for that to be changed. Christine also asked, regarding DLA files, how long should they be kept? There was some discussion about this. The Chairman asked to be provided with details as there was to be a debate in the House of Lords soon. Tristana Rodriguez asked what the Evidence-based Review was based upon.
b) Professor Harrington commented that pain and fatigue were clearly important factors in fluctuating conditions. Arthritis for example was all about the effects of pain and fatigue. ME was about a lot more. The evidence base was that patients were known to have these effects. The fact that you were dealing with a complex condition did not mean you should do nothing about it. You had to recognise that patients might well be unable to work several days a week and that employers would be unlikely to want to employ people in these circumstances. You had to build this into your decisions about work capability and entitlement to benefit.
c) On “evidence base” Jane Colby commented that the patient’s information was evidence and the Chief medical Officer had given it much weight as evidence.. Professor Harrington replied that epidemiological evidence was stronger than anecdotal evidence, but anecdotal evidence could be very useful – particularly if there was little or no epidemiological evidence. On the recording of interviews he thought it was reasonable to try it out to see if it improved outcomes.
d) Dr Shepherd asked about the independence of the Steering Group. Prof Harrington replied that it was important that potential members had no axe to grind. He wanted an independent scrutiny group.
e) The Chairman said there was a lot of concern in the House about PIP. On the following Monday there would be a full debate on Atos. There was a discussion about whether Capita or Atos should administer PIP. Members agreed DWP should take our views into account.
The Chairman thanked Professor Harrington for his excellent presentation.
5. Minutes of last meeting (13 November 2012) were agreed to be a true record.
6. Matters arising.
a) Jane Colby referred to item 9.2, Guidance on Education for sick children. The new statutory guidance for Local Authorities had been published the previous week and remained substantially the same as the final draft. She believed it improved on previous guidance. For example there was a clear statement that GP information can be used, not just information from a consultant and that delays due to waiting for a consultant’s opinion or asking for repeated opinions from a consultant should not occur (paras 11/12). Virtual education can be provided on its own when necessary (para 7). Sick children cannot just be removed from the roll of a school. The Local Authority’s responsibility is to see that sick children get the education they need, and this applies over all types of schools including Acadamies and Free schools.
b) Referring to item 9.3 Janice Kent said the question about the Lightning Process was still under investigation. Dr Shepherd referred to the SMILE project which was still being conducted. Bill Kent said that he had been surprised that the SMILE project had been given Ethics Committee approval, but he had not seen all the evidence that had been considered by the Ethics Committee concerned
7. Research – The Chairman said Professor Stephen Holgate had agreed to speak at one of our meetings. The launch of the Research Collaborative would now be held at the Wellcome Collection, not Westminster. Dr Charles Shepherd said good progress was being made. The launch would be on 22 April and about 70 to 80 doctors and researchers would be there as well as representatives of charities, the MRC etc. There would be a press conference before the launch. Sonya Chowdhury added this information was just about the launch; more details would be given later, eg the terms of reference of the Collaborative which were not yet finalised. Dr Shepherd said that anyone wanting to give information to Professor Holgate could contact him directly or via himself or Sonya. Christine Harrison asked if Forward-ME members would be invited to the launch. Sonya said she thought so.
8. Any other business The Chairman said she had made a formal complaint to the Press Complaints Commission about the Lancet and the PACE Trial. She added that we could quote the PACE Trial if we wanted to say that no-one who had received CBT or GET had been found fit for work.
There being no further business the meeting ended at 3.00pm

Research Update by Dr Charles Shepherd, Hon Medical Adviser, MEA