Forward-ME Group Minutes 10th July 2019

Minutes of the Meeting held in Residence 1, House of Lords, Wednesday 10 July 2019, 2.00 pm

Present: Countess of Mar (Chairman); Bill & Janice Kent (reMEmber); Dr Nina Muirhead; Hannah Clifton (ME Trust); Christine Harrison (BRAME); Suzie Henson-Amphlett (TYMES Trust); Esperanza Moreno (ME Action); Sam Bromiley (AFME); Dr Charles Shepherd (ME Association); Dr Willy Weir; Sue Waddle (ME Research UK); and Philip Gowan.

1. Apologies and Introductions. Apologies have been received from Carol Monaghan MP, Dr Nigel Speight, Sarah Reed (ME Action), Tony Crouch (25% Group) and Gareth Tuckwell (ME Trust). The Chairman welcomed Michelle Bull and Natalie Hilliard, physiotherapists working with the ME Association.
2. Medical Schools Council
   1. Nina Muirhead said she had sent a questionnaire to medical schools and more than half said they do not teach ME/CFS but most are willing to receive information on it. She introduced Clare Owen, assistant Director of the Medical Schools Council. Clare detailed their role and the number of e-mails they receive requesting things to be added to the curriculum. There are 40 medical schools, with each setting their own curriculum. Getting all 40 to change in the way we might wish could be difficult. In her view nothing was likely to change until NICE had reported.
   2. Nina Muirhead said that what we could do as a group is to get a set of names from each region of patients who are willing to go into medical schools and help educate health professionals. Students will then have the experience from patients and can challenge the teaching they are receiving. Clare Owen said she is happy to receive further queries from the group. Charles Shepherd said it could be productive to have more patient involvement, but you need to have a clinician there to facilitate patient involvement – and unless that clinician has expertise in the field of ME it will be very difficult to make it work.
   3. Susie Henson- Amphlett related her experience of patients working with NHS bodies which was quite positive.
   4. Dr Willy Weir said one of the obstacles we all face is that many doctors still believe ME/CFS is a psychological disorder and, although evidence to the contrary is compelling, many of these doctors don’t seem to want to understand.
   5. Nina Muirhead said she quite agreed with Willy. She had had a meeting with Dr Duncan Cole, Clinical Senior Lecturer for Medical Education at the University of Cardiff Medical School, and a medical student at Cardiff University where they had devised a method by which students would be armed with patient evidence and with this would start challenging their tutors. Clare Owen said the Royal Medical Colleges have an important role to play here in encouraging clinicians to listen to their patients.
   6. Christine Harrison related her daughter’s experience with clinicians; she had encountered negative responses when she related details of her condition. The one positive thing that medics could do is believe patients and give them the appropriate support. Susie Henson-Amphlett said that the freedom of some doctors to support patients as they felt appropriate may be restricted because of the differing opinions and the influence of lead doctors/colleagues. Some may also be restricted by the “patient pathways” as directed by Clinical Commissioning Groups, etc. The Chairman asked Susie to write to her about this; she would take it up with the Minister.
   7. Charles Shepherd asked Clare Owen if she would be happy for Forward-ME members to contact her on this subject. Clare said she would, particularly if they write with ideas for securing more patient involvement. She mentioned videos and podcasts as education methods favoured by medical students.
   8. The Chairman thanked Clare Owen, and Nina Muirhead for their presentation.
3. Minutes of meeting held on 8 May
   1. The Minutes were agreed to be a true record.
4. Matters Arising
   1. NICE – item 4 of last meeting; the Chairman said she had been advised that the work of the NICE Guideline Committee should not be discussed in detail by Forward-ME. Charles Shepherd explained that he and Willy Weir are members of the Committee. He had spoken to the Chairman of the Committee who had confirmed that he and Willy may tell us what subjects have been discussed at NICE Committee meetings but not the outcomes of the discussions. They had, for example, discussed medical training but they were not permitted to reveal the details.
5. NICE GDG
   1. Sam Bromiley said he had been in touch with Oxford Brookes University who had submitted a proposal for research into children and adolescents to the NICE Guideline Development Group.
   2. Susie Henson-Amphlett said NICE should be aware that people in the 16 to 25 age group tend to fall through the NHS, educational support and Social Services “gap”. The importance of appropriate healthcare support, inclusion and the need for advocacy support (often the parent) through this ‘transition period’ must not be overlooked when the new NICE Guideline was being constructed. The Chairman asked Susie to ensure that TYMES Trust provide her with details.  
6. Whitehouse Proposals for Public Relations
   1. The Chairman said Phil had provided a list of PR topics. We needed to decide whether to go ahead with Whitehouse and if so what we want them to concentrate upon.
   2. Sam Bromiley explained that he, Clare Ogden and Sonia Chowdhury had been given assistance for Action for ME in the past by Whitehouse. There would be some costs if the Forward-ME proposal was accepted.
   3. Hannah Clifton said that Whitehouse would require a company register number or a charity number. The Chairman said she thought we might have to apply under the name of one of the charities.
   4. The Chairman proposed we get Phil to put in an application. The theme should be “what ME patients want” – which is to be heard, their problems to be carefully considered and to be treated as human beings.
   5. Sue Waddle agreed, saying that whilst there is not a cure and ongoing research has not yet produced the answers, what patients really want is understanding and to be believed.
   6. Janice Kent asked about the costs involved in a Whitehouse bid. If we know we could then work out what each charity might contribute which could be commensurate with their respective resources. Sam Bromiley said he would find out; the main cost was likely to be expenses.
   7. Willy Weir suggested a video might be produced (perhaps an animated cartoon) which would show how patients respond positively to being dealt with sympathetically. It could also include the negative impact of a “rude” GP. Members discussed this idea in some detail. It was believed something like this had been done before; possibly its circulation was restricted to a local area. The main target should be GPs, with the aim of getting them to say to patients something like “we know there isn’t a cure but we also know you are very unwell, and we will help you all we can”. Philip Gowan said he would look into this possibility. (Philip reported in August that the Forward-ME application had not been successful, but Whitehouse were to meet with him again as they found it interesting)
7. DWP   
   1. Dr Charles Shepherd said he, the Chairman and Vice Chairman had met Justin Tomlinson MP, Minister for the Disabled at DWP who seemed to be very understanding. He had listened carefully to what Charles and colleagues had to say. Charles had written a report for the Forward-ME website. Christine Harrison said she would have liked to have been involved. The Chairman said she was appreciative of all the work Christine had done in this area; unfortunately, this meeting had been arranged at very short notice.
   2. The Chairman referred to a nasty case of a claimant who was called for a benefits interview having explained that she could not manage more than 10 minutes face-to-face interview. In the event she had to undergo an hour-long discussion.
   3. Nina Muirhead referred to the wording of some DWP letters. They can be quite frightening to people who are ill. There was general discussion about the tone of such letters which are probably computer-generated and lack the personal touch.
   4. Christine Harrison had worked with Capita and IAT (Atos) who have asked her to help them with some training.
   5. Sam Bromiley referred to a Disability Consortium event involving charities for a variety of conditions. It would take place the following week in Westminster. Any of us could attend. 
8. RCGP Conference
   1. Sam Bromiley said that any day now they should receive the conference brochure. They had to bear in mind that they would not have the help of Carol Monaghan’s office this year. He proposed putting together some fairly straightforward information packs.  Sam added that straightforward details of the different charities would be prominently displayed. Charles Shepherd asked about the volunteer rota. Sam said they would call for volunteers, as last year. Members discussed arrangements for accommodation etc.
   2. Susie Henson-Amphlett asked if it was correct that there would be a Forward-ME poster this year instead of posters for the different charities. The Chairman and Sam Bromiley confirmed this was correct. It was important not to overload the stand with information.
   3. Charles Shepherd said that this year Forward-ME would have a corner stand which would be a much better position than last year. There would be room for a banner or similar. Regarding donations, Charles said we already have £1500, and there was the possibility of a further £500. Sam Bromiley referred to the cost of couriers, pointing out that it was really expensive to use them on Fridays. The Chairman suggested contacting Carol Monaghan who might have a contact in Liverpool.
9. Research
   1. Sue Waddle distributed copies of a handout on recent research projects and asked members to send in anything that ought to be included. Charles Shepherd explained that the CMRC and Biobank were still in discussion with the MRC about the wide-ranging research strategy proposal that had been submitted. Sue added that there were lots of pockets of research going on around the world that needed bringing together. The Chairman commented that at last NICE was beginning to look at this research.
   2. Charles Shepherd drew attention to an article from a United States medical journal about ME being a real biomedical condition – also interesting musculo-skeletal research taking place currently. Dr Willy Weir said he had seen a video produced at Harvard University which referred to blood circulation problems in ME patients (eg POTS).
   3. The Chairman referred very briefly to the paper produced by Prof  Diane O’Leary that members had seen. Prof O’Leary is still waiting to see if it will be accepted.
   4. Janice Kent referred to the benefit she had found by following the Atkins Diet and suggested this could be a good subject for ME research.
10. Any Other Business
    1. The Chairman announced she had been asked to chair a communications sub-committee of the Research Collaborative. The sub-committee would be meeting on 16 July.
    2.  Dr Charles Shepherd spoke about a ME patient who had received a bad decision from Local Authority Social Services reducing his care package considerably. The patient had taken the case to the Local Government and Social Care Ombudsman who had ruled that the patient’s fluctuating condition must be taken into account in these assessments and further ordered that the patient must be paid substantial compensation. Charles would send a copy of the full judgement.
    3. Suzie Henson-Amphlett provided a summary of the FOI response received by TYMES Trust from 5 Scottish Medical Schools

There being no further business the meeting was closed at 3.15 pm