Forward ME minutes, meeting held in House of Lords, 17 October 2017.
Countess of Mar (Chairman), Janice Kent (reMEmber), Bill Kent (reMEmber), Hannah Clifton (ME Trust), Jane Colby (TYMES Trust), Anita Williams (TYMES Trust), Tony Crouch (representing 25% Group and TYMES Trust), Clare Ogden (Action for ME), Dr Charles Shepherd (ME Association), Dr Paul Worthley (ME Trust). Dr Max Davie (Paediatrician).
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1. Apologies had been received from Christine Harrison (BRAME) and Sue Waddle (MERUK)
2. Dr Max Davie
2.1 The Chairman welcomed Dr Davie who explained he was a Consultant Paediatrician with Evalina London Children’s Healthcare, Guy's and St Thomas’s NHS Trust working in the community in Lambeth and based at the Elephant and Castle.
He was also Assistant Officer for Health Promotion at the Royal College of Paediatricians. He had a particular interest in “unexplained illnesses”. Although not an expert in ME/CFS he had acquired a lot of knowledge of that condition. He then invited our questions.
3. Discussion and questions
3.1 Jane Colby introduced herself and explained her background. She said the problem of discrimination against children with ME existed in all areas. She outlined a number of cases where children and/or parents had been badly treated by schools, GPs and Social Workers. A common problem was apparent lack of understanding of the illness and the assumption that children were not really ill.
3.2 Dr Davie agreed there was ignorance of the condition on the part of doctors and others. Jane went on to explain that sufferers feel so ill they cannot face interacting with others. Dr Paul Worthley added that recovery to any extent takes a great deal of time. Jane went on to explain how children can suddenly “go off” with the illness; they may not be aware themselves of what is happening. Knowledgeable doctors can spot this, she said, but there are not many of them.
3.3 Dr Charles Shepherd referred to the Report of the Chief Medical Officer’s Working Group on ME/CFS published in January 2002, especially the chapter on children and young people. It said that the Royal Colleges have a major role to play in getting good services for children and young people. Could Dr Davie take that back to the Royal College of Paediatricians?
3.4 Tony Crouch explained he was a former social work manager. He referred to cases where there had been threats to take action against parents of children with ME for non-attendance at schools. There had even been a case of an occupational therapist and a physiotherapist who knew a child really well being overruled by community paediatricians. Charles Shepherd asked whether the College had a role to play in bringing these different factions together.
3.5 Dr Davie said there was better guidance now on disability and local responsibilities. “Collective Responsibility” is starting to be recognised in the field of mental health. Health professionals were beginning to recognise that that there are a number of poorly understood conditions which they need to discuss together with open minds. Tony Crouch commented that this was much needed. He gave the example of graded exercise which was being imposed without the needs of the individual child being considered.
3.6 Referring to FII, Jane Colby said the real statistic was really very small compared to the numbers being accused. None of the families the Tymes Trust had helped had been found guilty of anything. Dr Davie said FII is misdiagnosed sometimes although it does occur in a small number of cases. He agreed doctors do make errors. The Chairman referred to the NICE Safeguarding Guidelines which, she said were very bad where they relate to ME.
3.7 Clare Ogden said that teachers often do not recognise the condition, or what should be done if they are aware a child has ME. Dr Davie pointed out that there is guidance in this area so perhaps we could do something about it. Janice Kent explained how terrible she had felt when badly affected, so imagine how a child must feel. Jane Colby agreed.
3.8 Summing up, Dr Davie said that Charles Shepherd had asked for some kind of lead from the College. A key question was do we regard ME as a disability? There was general agreement that this was so. Dr Davie said that puts us in a powerful position. Children and families get great protection if there is a disability. Jane Colby said she had received that assurance from Earl Howe. It was on the TYMES website and she could send Dr Davie the reference. (www.tymestrust.org/publications)
3.9 Dr Charles Shepherd pointed out that in 2003 the Department of Health made £8 million available to enable health authorities to set up ME services for adults and children but very little had been provided for children. Anita Williams explained how her child had received little or no help when her diagnosis was ME but when she was diagnosed with lupus a range of services were immediately offered.
3.10 The Chairman explained that Dr Davie needed to go to another meeting. She thanked him for listening carefully to all our points and hoped this would lead to better things in the future.
4. Minutes of meeting held on 11th July 2017
The minutes were agreed to be a true record.
5. Matters arising
5.1 NICE (Item 2 of last meeting). To be taken as the last item of this meeting.
5.2 Frontline magazine (item 5.1 of last meeting). Dr Charles Shepherd said our article had been submitted and he was waiting to hear from the Royal College of General Practitioners.
5.3 Meeting of Principal Social Workers (item 5.2 of last meeting). The Chairman said that the meeting in Birmingham had gone well. Tony Crouch added he thought our message had been well received.
5.4 RCGP Conference in Glasgow next year (item 5.3 of last meeting). Dr Charles Shepherd said he would write to the Royal College of General practitioners about attending.
5.5 The NHS services for ME/CFS (item 8.1 of last meeting). Janice Kent thanked the Chairman for submitting written questions. It was most frustrating therefore that the reply from Lord O’Shaughnessy was to the effect that it was not a matter for the Government or the DH but for the individual CCGs to decide what services for ME patients should be provided in their areas. This was not acceptable. Central Government must accept responsibility. Bill Kent added that the recent reports from Action for ME and Bristol University showed serious shortcomings in provision and outcomes nationwide. The Chairman asked for details by e-mail so that she could submit further questions.
5.6 Dr Charles Shepherd added that the cost of ME to the economy had been estimated as £3.5 billion annually. Clare Ogden commented that researchers who had recently published had said that this was a minimum figure.
6.1 SMILE. The Chairman congratulated Dr Charles Shepherd on his excellent report on this controversial study. Dr Shepherd reminded members that the Advertising Standards Authority had upheld his complaints about the claims made for the Lightning Process some years before.
6.2 SNOMED. The Chairman said there was ongoing correspondence about SNOWMED, ICD11 and the NICE Guideline on Neurological Conditions
6.3 Dr Charles Shepherd announced that the ME Association was funding Keith Geraghty for his work and that the ME Biobank had received a new grant of $2.1million from the National Institutes for Health in the United States. He spoke briefly about the ME/CFS Collaborative Conference in Bristol which he said had been very good. Clare Ogden agreed.
7. Any other business
7.1 Hannah Clifton said Gareth Tuckwell had suggested the different ME organisations should collaborate in order to avoid duplication so as to ensure that any projects that would benefit from charities working together, such as producing a leaflet, would be discussed collaboratively. This was agreed.
7.2 Clare Ogden asked to confirm that the dates of National ME Awareness week would be Sunday 13th May 2018.
7.3 Janice Kent said she had attended a recent meeting of BACME. Their new chairman was Dr Gabrielle Murphy, an immunologist who did not like the term “medically unexplained symptoms”. Charles Shepherd said the feedback on the service led by Dr Murphy was generally good.
8.1 The Chairman announced that Professor Mark Baker had phoned her to say they would withdraw the current Guideline on ME. This was announced publicly on 20 September 2017. He had asked to meet Forward-ME members at an early date. This had been arranged for 31 October 2017. Dr Charles Shepherd added that publication of the new guidance was planned for October 2020.
8.2 The Chairman said the intention was that the existing guidance would be abandoned and completely new guidance written. This would have regard to the recent international research. Charles Shepherd said that presumably a number of bodies, including Forward-ME would be involved in formulating the new guidance. The Chairman said she would print off the full NICE Guideline so that we could go through it line by line. She read from a paper on the subject written by Helen Brownlee.
8.3 Clare Ogden said we should look at the scope of the current guidelines. The Chairman commented that the scope of the new guidelines should include the American research. She requested we let her know what else we think should be included, before 31 October.
8.4 Charles Shepherd said children should be included as well as adults. Janice Kent said it should include what doctors (e.g. GPs) need. Charles Shepherd commented that NICE does not get involved in the provision of services.
8.5 There was discussion about the inclusion of a psychiatrist on the working group. Dr Paul Worthley said that would be OK as long as that person has an open mind, and as long as we look at the patient as a whole, not just the psychiatric area.
Future speakers. The Chairman said possibilities were someone from CAMHS and the Health Ombudsman. She then thanked all members. Date of next meeting 31 October 2018. The meeting ended at 3.40 pm.
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