Forward ME Group Minutes

Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 25 October 2016, 2.00 pm

Present: Countess of Mar (Chairman); Janice and Bill Kent (reMEmber); Jane Colby (TYMES); Anita Williams (TYMES); Christine Harrison (BRAME); Dr Charles Shepherd (ME Association); Dr Paul Worthley (ME Trust); Sue Waddle (ME Research UK); Cath Ross (25% ME Group) and Katie McMahon (AFME).

1. Apologies had been received from Sonya Chowdhury (AFME) and Hannah Clifton (ME Trust).
2. Speakers; Dr Ian Gargan, Chief Medical Officer of Capita, UK and Northern Ireland and Rebecca Papanicolas, Communications and Stakeholder Manager, Capita.
   Dr Gargan explained his background was in mental health. He had trained first as a psychologist and then as an orthopaedic surgeon. He had taken a keen interest in “medically unexplained” conditions. ME appeared to be an umbrella term covering collections of different symptoms, with no exact diagnostic tool. As he saw it Capita had three remits -1) the care of the customer, 2) to conduct fair, accurate assessments and 3) good training of their staff. As it was most important that they should listen to the concerns and frustrations of their customers, they wanted to hear from groups like ours. Assessments, of course, were based on the functionality of the claimant. The assessors had to look at that objectively, then make a fair and evidenced assessment which then would go back to the DWP to decide on the award. He then invited questions.
3. Questions and discussion
   1. Sue Waddle spoke about a relative whose case was due to go before a tribunal. She needed aids for her disability but the assessor did not believe she had a problem because the aids had not been prescribed on the NHS. Sue said that ME patients could not get aids because doctors who knew the nature of the disability were just not there. Ever since she had been a child she had been expected to prove that she was not lying and did have a disabling incapacity. At the recent assessment she had been asked to take a pen out of her handbag; because she was able to she was deemed to have functionality. Dr Gargan apologised for Sue’s relative having had a bad experience. It was the job of the assessor to record what the patient was telling them about the nature of their disability, and to ask whatever questions were necessary to determine how that affected their functionality. The overall process was that the DWP send Capita the Clamant Questionnaire and any supporting evidence provided by the claimant. Capita then conducted an initial review, at which point a Disability Assessor considers all the information and decides:1) if the claim falls under the normal rules or could be a terminal illness case; 2)if further evidence is needed; 3)if the assessment can be completed as a paper-based review or if there was a need for a face-to-face interview. If the latter, the Assessor would decide what type of appointment was appropriate – home, assessment centre or either. They would also consider whether any reasonable adjustments needed to be made, such as booking an interpreter.
   2. Dr Gargan went on to explain that written evidence from the patient’s doctor could be very helpful, but the Chairman pointed out that ME patients seldom see their GPs. Dr Charles Shepherd added that a MEA member had written to him saying that when he went for assessment for PIP he was told if he wanted them to consider evidence from his doctor he would have to get it himself. However, his doctor would charge him £45 for a letter to that effect which he could not afford. Ms Papanicolas said they couldn’t comment on specific cases but if they were sent written details they could look into it. Dr Gargan added that in those circumstances the patient should not have to pay. Capita should request the medical evidence and would pay for it. The Chairman outlined some cases where what Capita said should be done was not being done. Dr Gargan agreed to look into the problems as well as any other cases. These should be sent through the Chairman.
   3. Christine Harrison pointed out that she had raised repeatedly with Capita that many people with ME are extremely sick and disabled, often with no specialist care and no supportive and understanding GP, often abandoned in the community so it is difficult to get supportive evidence. Despite their obvious illness, people with ME appear to be treated differently from others with chronic ill health. DWP and Capita should give this matter urgent attention. Dr Gargan asked what sort of specialist ought to be advising on the condition of these patients. Janice Kent suggested immunologists. Dr Paul Worthley said it should be a doctor who knows the patient and sees them frequently. Dr Charles Shepherd said you were dealing with an illness that crosses many boundaries. The need was for any “ologist” who has good knowledge and experience of the illness, but there are not that many.
   4. Dr Gargan suggested members should put together for him details of ME disability (challenges, conditions, diagnoses, epidemiology etc) and he would distil that into guidance for assessors. Ms Papanicolas said that on that topic they were doing an internal comprehensive review. It would be complete soon and they could let us see it. Referring back to the view that ME is “medically unexplained”, the Chairman said there is now abundant evidence of the medical nature of the illness, and members could send them papers on that. Dr Charles Shepherd added that if you call it “medically unexplained” people immediately assume it’s a psychological condition. He also referred to the high proportion of patients who get an adverse assessment from Capita, Atos or Matrix, but then win when they go to appeal.
   5. Jane Colby pointed out that it’s not only benefits assessors who sometimes get things wrong. Healthcare professionals, teachers and others do. Some things said to ME patients could be construed as hate crime towards disabled people. Dr Gargan said it was important to raise this point. He had encountered this sort of thing in the world of mental health care. It was unacceptable and he was committed to making sure that health professionals and assessors know that. In some cases disciplinary action might be necessary. He encouraged people to complain about this sort of treatment.
   6. Janice Kent said she could supply papers written by Dr Amolak Bansal and Dr Willy Weir which explain the medical nature of ME. She added that Dr Charles Shepherd had written a brilliant book (The Purple Book) on this subject. Dr Gargan asked that we provide The Countess of Mar with such papers and she could send them on to him.
   7. Dr Paul Worthley referred to there being no means of measuring the level of fatigue in ME patients, also the phenomenon of post-exertional malaise – fatigue catching up with patients 24 hours after exertion. Christine Harrison said that if you saw these patients not knowing the name given to their illness you would immediately recognise that they are disabled. Jane Colby made the point that managing your condition (with pacing for example) so that you don’t deteriorate doesn’t mean that increased exertion will make you better. Sue Waddle said that assessments were only as good as the people making them, and in her experience over many years they were not very good. She went into details of the experience of her relative. Dr Gargan agreed this had been a bad experience. He detailed the training that assessors receive. Assessments are audited internally and externally.
   8. Janice Kent and Jane Colby both made the point that most ME patients have difficulty in expressing the details of their illness/disability. That difficulty is recognised in people with other conditions (eg, brain injury), why not in ME people? Dr Gargan said he recognised there was a need for assessors to receive training in this and other areas. They must learn to ask questions in the correct way and to speak to patients empathetically. Cath Ross referred to a letter on behalf of severely affected patients who are not well enough to submit to assessment, and asked that Dr Gargan scrutinise it carefully. He agreed. He also confirmed that all telephone calls are recorded.
   9. Christine Harrison said Capita has to address and improve the training of their health assessors and that each question should begin with: ‘Can the claimant do the following activity reliably, repeatedly and in a timely manner for more than 50% of the time?’ Additionally, every question should be followed by at least two further questions – ‘How often can you do that activity?’ and ‘What is the impact?’
   10. The Chairman thanked Dr Gargan and Ms Papanicolas for dealing with our questions and hoped they had got the message. We would be happy to work with them in order to get things right. Ms Papanicolas added that if we had cases where something appeared to be wrong please send them details right away without waiting for a decision on the claim. They can then intervene at the earliest opportunity.
4. Minutes of last meeting (24 May 2016) and matters arising.
   The minutes were agreed as a correct record. There were no matters arising.
5. PACE Trial and NICE
   1. Members discussed the release of the raw data of the PACE Trial. Sound analysis was now necessary to determine whether it was flawed. Jane Colby asked whether the matter would be discussed in the House of Lords. The Chairman confirmed that it would but she would need to wait until a peer reviewed paper was published. Sue Waddle suggested it should be brought before the Public Accounts Committee, as the whole exercise had cost such a lot of public money. The Chairman said she would look into that too.
   2. Dr Charles Shepherd said we needed the re-analysis of the raw data that has now been released to be published in a reputable peer-reviewed journal. Dr Shepherd said he had been in touch with the person who had made the Freedom of Information request; a small group was putting together a paper but it would take time to prepare this paper and go through the process of submission, peer review, etc. So a paper was unlikely to be published before Spring or Summer next year. The Chairman said she couldn’t do anything until she had that paper.
   3. Turning to NICE, Charles Shepherd referred to the “remarkable” correspondence between Professor Mark Baker and Dr Martin McShane which members had seen. It looked as though NICE would do some sort of review of the guideline on ME/CFS next year – they called it a “surveillance review”, whatever that might mean. The Chairman said she would find out; she also commented that NICE seemed very reluctant to accept anything that had not been conducted in the UK.
   4. Dr Charles Shepherd added that Professor Mark Baker said they had looked for evidence of harm being caused by GET and said that none had been found. But the ME Association had received 200 to 300 responses from patients saying they had been harmed or made worse by GET. Members spent some time discussing what GET was like and what patients had said about it. The Chairman asked whether the AFME and MEA patient surveys had shown that patients were being harmed. Charles Shepherd said the MEA had a large number of reports and transcripts of what patients had said about their experiences of GET – nearly all of them negative. The Chairman asked him to supply her with a selection of these. Sue Waddle referred to a paper produced by a statistician in the USA which set out the problems reported by patients in America. Did NICE not accept evidence from other countries? The Chairman said she had contacted Mark Baker who had said they examined all English language reports from other countries including the United States.
   5. Janice Kent said that at the BACME meetings the therapists appeared not to be impressed by GET, tending to prefer what they termed “activity management”.
   6. A review of the ME/CFS services was necessary to establish, among other things, exactly what therapies are being administered. There were very few good doctors connected to these units. Dr Paul Worthley agreed. The Chairman said the proposal for a review would be considered at item 7.
   7. Christine Harrison asked what had happened about the Kumar and Clark controversy. Charles Shepherd said we didn’t make any headway with that complaint. Paul Worthley said that many doctors would not accept that a patient could be ill for many years with ME. Jane Colby said they had encountered the same attitude towards children. They wouldn’t accept that children could be ill with ME/CFS long term despite the fact that the word “Chronic” was in the title.
6. Research
   1. Dr Charles Shepherd outlined the proposed MEGA study. It was to be a study by the Epidemiology and Genomics Alliance. It had developed from Stephen Holgate’s call to make use of a number of recently developed areas of investigation including genomics, metabolomics, epigenetics etc. as they apply to ME/CFS. It would be a big data study involving a large number of people – 10,000 adults and 2,000 children – and the only way you could collect that number of patients would be through the ME/CFS clinics. The aim is to put a preliminary application in January. He had discussed with other members of the Research Collaborative (AFME and MERUK) and they agreed there was merit in the proposed study. However there was disquiet among the public, mainly because of the uncertainties about how patients would be selected, difficulties in accessing people with severe ME/CFS and the background of some of the researchers who are involved in the planning group.
   2. Sue Waddle said MERUK’s position was that not enough was known about the project yet. They could give qualified support but needed more detail. The Chairman proposed writing to Prof Holgate asking him to come and speak to us about it before the preliminary application is submitted – in November or December. This was agreed.
7. Proposal for a review of the CFS/ME services
   1. Janice Kent referred to reMEmber’s paper which had gone out to all members. The idea was to get facts and figures from all the clinics. In particular there was concern over doctor input – or lack of it. There were hardly any experts although some claimed they were. Bill Kent asked the Chairman for her advice; if we were agreed this review should take place, by whom should it be done and how should they go about it? The Chairman replied she would like the Health Committee in the House of Commons to look at it, but they might have to do that with other “Medically Unexplained Conditions”. Asked whether the aim was to “expose” the services, Bill Kent explained we just wanted to know what was there, and whether it was any good by objective standards; what were the outcomes? No-one had done anything like this before, so we just didn’t know. We needed a properly conducted scientific study. Janice Kent added that the aim should be to get a really good service for patients with early accurate diagnosis and advice from expert doctors.
   2. The Chairman said that reMEmber should go ahead with the proposed survey. Other members could contact them with their views and information they hold. Bill Kent agreed that if we were simply to contact the services ourselves we would probably only get what they want us to know. That was why a review by an independent body was required. reMEmber would try to identify such a body.
   3. Christine Harrison said that BRAME had already done a detailed survey to ascertain the make-up of the clinic, expertise, criteria used, management/treatments used, etc. on services in the Eastern Region a few years ago, which she fed back to Forward-ME. The information was also sent to Sir Peter Spencer, CEO of AfME as he proposed to do a national survey, but this never materialised. She would forward the data to Forward-ME members.
8. Future Speakers
   The Chairman announced Professor Ian Curran of Post-Graduate Education, General Medical Council, would come to speak on 22 November. She had written several times to the Chief Executive, Health Education, England and had recently received a reply to the effect that they would respond at the end of the month about a speaker. She would write to Professor Stephen Holgate. Dr Willy Weir had been too busy but she would write and ask him again.
9. Any other business
   Referring to minutes of the last meeting, item 9.1 (Scottish Parliament and the “Named Person”), Jane Colby said they had won the case at the Supreme Court. The five judges had struck down the Scottish law that was trying to impose a “state guardian” on Scottish children. The Chairman congratulated TYMES on their success.

    The Chairman thanked all members. The meeting ended at 3.30 pm