Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 21 October 2014, 2pm
Present: Countess of Mar (Chairman), Dr Charles Shepherd (MEA), Sonya Chowdhury & Mary Jane Willows (AFME), Bill Kent (reMEmber), Jane Colby & Anita Williams (Tymes Trust), Sue Waddle (ME Research UK), Christine Harrison (BRAME) and Hannah Clifton (ME Trust). In attendance: Clare McDermott and Prof George Lewith (University of Southampton).
1. Apologies had been received from Dr Paul Worthley, Janice Kent and Prof Damien Ridge.
2. Presentation by Clare McDermott and Prof Lewith
2.1 Clare outlined their research proposal to put ME on “Healthtalkonline” (HTO) and provided the Group with handouts. They had put together a strong team for this research project, and she thanked MEA, AFME and reMEmber for taking part in a teleconference to consider and discuss the proposal.She explained that HTO was a highly regarded website initiated in 2000 by Dr Anne Macpherson who had been diagnosed with cancer. The idea was that patients could share their experiences. Over 80 illnesses were now covered by it including diabetes, asthma and heart disease. The website has won many awards including the BMA ‘Patient Information Award’(2011) and the Medical Journalists Association “Health Website of the Year”. Ann McPherson, the co-founder of Healthtalk was awarded the BMJ ‘ Health Communicator of the Year’. It was already used by GPs and medical students. Doctors could recommend it to their patients. She was concerned that ME was not on it. What sort of message was that sending to the medical profession?
2.2 The research team are planning a bid for funding to be submitted in either January or May 2015, depending on how long the bid takes to finalise.. The funding panel considering their bid would want to know what benefits there would be for the patients. The research team were seeking feedback from Forward-ME. If we felt we could support the bid they would like our letters of support. (MEA, AFME and reMEmber had already supplied theirs). They would also like help and advice from those members of Forward-ME who already had a website. An advisory group would need to be formed. Contact details were on the last page of their handout.
2.3 Prof George Lewith said they had a 30-page draft plan for the project. HTO wasn’t just people talking about themselves. There were many useful interviews, and clear themes came out of them. HTO was good, important qualitative research. But without the backing of charities within Forward-ME the project would probably not be able to go ahead. Any suggestions we could give about using and evaluating patients’ input would be most welcome. That input would be available not only to patients and doctors but also to researchers for some time into the future. He recognised the value of this. He had suffered from Chronic Fatigue some years ago and had treated patients with CFS/ME for over 20 years.
3. Questions etc.
3.1 Hannah Clifton agreed about the value of communication to patients. It gave them a feeling of self-worth. At Burrswood they had found that even patients in a darkened room (especially the young ones) had still been able to use computerised communication (laptops, mobile phones etc). George Lewith added that even if such patients couldn’t access the website themselves, their carers would be able to. The Chairman said she had found that youngsters, even those who had lost the ability to speak, could still communicate by text.
3.2 Dr Charles Shepherd asked whether there was scope for patients to communicate with doctors by this process. If so it would be extremely valuable. George Lewith said that large numbers of doctors, especially young ones accessed this website, but Clare McDermott explained that HTO was all about the patient’s voice. The website covers a large number of illnesses using a similar format for each and it needed to be kept that way for consistency. There could potentially be problems with giving medical advice on it. There followed some discussion on the useful information that could be obtained from the website.
3.3 Jane Colby asked what had happened to all the data that we had provided to the PRIME project. Others agreed. Sue Waddle asked how much the project would cost (Professor Lewith gave an estimate of £350,000). Sue Waddle then suggested the money would be better spent on biomedical research or, as Hannah Clifton suggested, on inpatient beds for the severely affected. Sue Waddle said that when people had been extremely ill for many years they didn’t want to know any more about others’ experiences – they wanted to be cured.
3.4 Returning to subject of PRIME, Mary Jane Willows offered to contact Sally Crowe to find out what had happened to the data. Members discussed the perceived shortcomings of PRIME. Clare McDermott said the PRIME website was still there. She had looked at it; it contained some information that might be very helpful, but the difference was that HTO was a mainstream website. It therefore had the infrastructure that could be built upon.
3.5 Sonya Chowdury returned to the question “why not fund research instead of a website”. She said that a lot of people find websites like this extremely helpful, but a strongly-argued case was needed for a project like this when money for ME was so scarce. Mary Jane Willows and others suggested that it could be very helpful if we could access the PRIME data to save patients having to give that data all over again. George Lewith said this certainly could be done, but their main concern was to make it known that ME/CFS is a real, serious illness. If that message were got across it would attract the resources needed for the research.
3.6 Sue Waddle and the Chairman stressed that the project should be very clear about which illness it was researching; it must clearly distinguish between ME/CFS and Chronic Fatigue. Professor Lewith referred to the problem of doctors with ‘burn-out’. Jane Colby pointed out the ME was not burn-out. Would their website differentiate between such cases and ME – e.g. following infection? Christine Harrison asked whether the website would define these illnesses. Clare McDermott said it would, and they would like the help of Forward-ME in clarifying this. They would certainly not include Chronic Fatigue as this had a different case definition from CFS/ME. George Lewith added that they would define the illness, and fibromyalgia, probably with a broad definition at the start, but using patients’ experiences to point up the many variations in symptoms.
3.7 Dr Charles Shepherd asked whether the Advisory Group (see para 2.2 above) would be set up fairly soon – to advise on the application – or later. There was not much time if the bid was to be submitted in January. Clare said they would like to set it up as soon as possible. Prof George Lewith added that the bid might not go in until March. Dr Shepherd asked if they would send the draft bid around the members of Forward-ME. Claire McDermott said she had copies of a draft (not yet finished) which we could take with us and comment upon. We should e-mail her if we were interested in being on the Advisory Group. Charles Shepherd pointed out that we would need to consult members/trustees, some of whom might have concerns about the cost of the project. Clare returned to the issue of funding priorities. She explained that there were different funding streams within medical research, some focussing on biomedical research; others on studies for more immediate patient benefit, such as improving patient care or information. A funding bid submitted to one funding stream only would be in competition with other bids in that stream. Therefore, it was highly unlikely that this bid would be competing in any way with biomedical research on ME. George Lewith added that they would probably have to do several re-submissions.
3.8 Jane Colby proposed that Forward-ME should be the patient reference group for the project. Claire said this sounded a good idea but she would leave that for members to discuss. The presentation then ended. The Chairman thanked both presenters very much.
4. Minutes of last meeting (25 June 2014) – The minutes were agreed as a true record.
5. Matters arising
NICE/patient decision making aid (3.5 and 3.7 of last meeting) Dr Charles Shepherd asked if we were going to take this proposal forward. The Chairman said she had written to Martin McShane but had received no response from him. Christine Harrison said she had written too, and had received an unsatisfactory reply. Sonya Chowdury proposed another letter from the Chairman and Annette Brooke, Chair of the APPG. Charles Shepherd suggested that Christine try writing to Mike Durkin at NHS England who he knew and could speak to if necessary. The Chairman said she could ask a PQ too, and we should continue this discussion at the next meeting.
6. DWP Matters
6.1 Christine Harrison referred to new measures relating to PIP claims. There was some basic information on the DWP website. she would supply Bill Kent with written details for the minutes. Apparently up to 25% of people called for assessment were “no shows”. It was not known why and she would like any information members could supply. Sonya asked her for details and she would arrange for a question to go out to claimants from the charities.
6.2 On 17 June 2014 Christine Harrison formally asked DWP PIP Team: In the June statistics report page 7 – Caseload main disability – a) In which group are ME (Myalgic Encaphalomyelitis) and CFS (Chronic Fatigue Syndrome included? b) ME and CFS are classified by WHO ICD-10 G93.3 as neurological diseases – so if they are not included in the “Neurological group” why not? and, c) If they are not, can this be addressed and corrected?
The response received from the DWP PIP Team in time for the PIP ISF meeting which Christine attended on 25 September 2014:
After discussions with the Medical Policy Officers and analysts we have made a decision about how we will group the published data in the future. In addition to the PIP categorisation of medical conditions, main disability will also be published according to the International Classification of Diseases and Related Health Problems (version 10) i.e. ME and CFS will be grouped under neurological diseases under the ICD 10 categorisation. Statistics on the ICD categorisation basis are provisionally scheduled for the December 2014 publication – with a contingency of March 2015 if the necessary development and quality assurance work require more time.
Christine had achieved the clarification she had wanted that the DWP would recognise WHO classification of ME and CFS as neurological diseases – however she was seeking clarification on another point which she hoped to have by the next Forward-ME meeting on 4 November.
6.3 Christine said she had one piece of good news from DWP about categorisation of ME/CFS. In future it would be categorised under neurology. Charles Shepherd said the MEA were getting some feedback on PIP. There was criticism of the medical assessment process (“long, stressful etc”). On mobility people were being asked how long they could walk for, ie time as distinct from distance which is what they are supposed to be asked. Christine asked members to let her have any feedback they get on benefits, PIP particularly. Charles Shepherd reported on a meeting with DWP about ESA, WCA, fluctuating conditions etc. Not much achieved as we are now in the run-up to the general election.
7. Research collaborative
Dr Charles Shepherd said there was little to add. The content of the very successful conference had been nearly all biomedical – very little psychiatry. Since then there had been a conference post-mortem and he had had a teleconference with Stephen Holgate and Hugh Perry. There would be another conference next year in September (2nd and 3rd) in Newcastle. Julia Newton would be the key person in the organisation of this meeting. The Chairman said she understood that the collaborative would encourage funding for research. Was that happening? Jane Colby asked who had actually received any money as a result of the Collaborative. Charles Shepherd said he was not aware of any research grants as a result, although Sonya, who had now left the meeting, might be, and applications might have gone to the MRC. Sue Waddle said she knew that two applications had come into MERUK but she did not know whether these were as a result of the Collaborative.
8. Any other business
8.1 The Chairman asked Dr Shepherd what was happening about the confusing information discovered in Kumar and Clarke’s “Clinical Medicine”. Charles said he was not aware of it until Dr Nigel Speight had contacted him the previous week. The two of them were keen to write to the editors. The Chairman asked them to frame a letter and let us see the draft.
8.2 Jane Colby formally thanked the Chairman, on behalf Tymes Trust and other Forward-MDE members for writing to NICE when the Trust’s Advice Line Team had found that the CFS/ME Guideline was listed under mental health. She also said that the Trust was concerned that there was no opt-out for families from the new Education Health and Care Plan (ECHP) if, for example, they did not agree with the recommended provisions. The Trust’s queries had to the Department for Education and the Department of Health had not been satisfactorily answered. The Chairman asked for details and said that she would ask a Parliamentary Question on the matter. (See written answers listed below)
8.3 Jane Colby reported that a Judicial Review challenging the Named Persons (‘state guardian’) requirement for every child in Scotland would come to court in a four day hearing in Edinburgh from 11 – 14 November. Tymes Trust is a co-petitioner in the action.
9 . Date of next meeting – Tuesday 4 November.
The speaker would be Dr Devlin from the Medical Defence Union.