FORWARD-ME: Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 7 February 2017, 2pm
Countess of Mar (Chairman)
Janice Kent (reMEmber)
Bill Kent (reMEmber)
Dr Charles Shepherd (ME Association)
Clare Ogden (Action for ME)
Tony Crouch (representing the 25% Group and TYMES Trust)
1 APOLOGIES had been received from Sue Waddle, Christine Harrison, Hannah Clifton, Jane Colby and Cath Ross.
2. GUEST SPEAKER, Professor Ian Curran Assistant Director of Education and Professional Standards at the General Medical Council (GMC)
2.1 Prof Curran explained his background was anaesthesia and chronic pain. He was responsible for education policy at the GMC. The GMC is responsible for the regulation of undergraduate and postgraduate medical education. There are 34 medical schools in the UK. Postgraduate medical training is organised across 98 specialties and reflects 55,000 doctors in various areas of training. The GMC was responsible for setting standards and assuring the quality of undergraduate and postgraduate education.
2.2 The Chairman raised the problem of misdiagnosis – people being given the ME label who, in fact, were found to have other, frequently treatable, conditions. Was there anything the GMC could do about this? Prof Curran referred to the “infinite complexity” of medical conditions which is increasing all the time. For example, when he was at medical school thirty years ago, seventy forms of cancer were known. There were now over 200. This ever increasing complexity was found in all areas of medicine. He gave as an example phantom limb pain. A subset of amputees describe a range of nasty symptoms. They describe these with such clarity that it is clear the pain is real. There are so many subsets or clusters of symptoms throughout all areas of medicine. Through research the exact cause of many such clusters has been found, and when you have a definite entity you can progress, but until then diagnosis and definitive management can be problematical.
2.3 Dr Charles Shepherd said he had trained at the Middlesex Hospital where he had received no training about ME but two doctors there had produced a paper for the BMJ (based only on case reports on the subject; they did not see any patients) saying that the Royal Free outbreak was not a real illness but “mass hysteria” and doctors should forget about ME. This attitude had led to patients getting no diagnosis from their doctors, or else a misdiagnosis. Patients were reporting this regularly to the ME Association helpline. This was bordering on professional misconduct.
2.4 Prof Curran said that patients he had worked with who had chronic pain reported the same experience.
2.5 Returning to the subject of phantom limb pain, Janice Kent said research had shown that it didn’t happen in amputees who had received an epidural. Could there not be similar research for ME? Prof Curran said that the GMC did not get involved in clinical research but he agreed that research was often helpful in moving understanding forward.The NHIR should be encouraged to consider funding such research.. This applied to chronic pain too, but pain and distress were very difficult to measure – unlike, say, high blood pressure which could be monitored and measured. However, advanced imaging methods were beginning to show differences between chronic pain groups – and other entity groups. There was a need for clinicians to be more aware of the effects of ME/CFS and he would be happy to make contact with the Royal College of General Practitioners about raising awareness. The Chairman and members urged him to do so.
2.6 Dr Charles Shepherd said that only about ten of the 34 medical schools cover ME to the extent of having a distinct clinical service so a lot of students leave medical school knowing little or nothing about the illness. It ought to be on the curriculum of all of them. Prof Curran commented that for 150 years the GMC had had a statutory responsibility for undergraduate medical training, but no legal authority to approve curricula. That is down to the individual medical schools.
2.7 Tony Crouch said that a survey in Scottish medical schools of training in services for children had shown that either ME was not covered at all or else it was regarded as a psychiatric problem. And yet ME/CFS was probably the biggest reason for sick absence from schools. The Chairman added that there was a serious lack of knowledge among doctors about paediatric ME.
2.8 Professor Curran said that from April of this year the GMC would be introducing a generic capability framework covering core areas of practice in all postgraduate training. It was in part seeking to raise awareness of and to prioritise training in areas that commonly present fitness to practice concerns. For example, some doctors show disrespect to patients or who seem to be unable to work collaboratively with colleagues. The Chairman asked how the entrenched views of those doing the training might be overcome. The Professor said this was being addressed through new standards for undergraduate and postgraduate medical education. A number of core requirements were being set (“This is what is required of you”). There were three fundamental domains of behaviour – professional values and behaviours, professional knowledge and professional skills; further there were six themed domains including management complexity and uncertainty, etc., each with detailed requirements.
2.9 Charles Shepherd asked how the different medical schools would interact with each other on this subject, and how could we, as patient representatives, have input. Prof Curran said there was a Medical Schools Council representing the established medical schools (including private medical schools). The GMC is also currently consulting on a “Medical Licensing Assessment” (MLA) to be applicable to all doctors wishing to become Registered Medical Practitioners and to every doctor that comes from overseas. Dr Charles Shepherd asked who we might contact at the Medical Schools Council. Prof Curran said the Chair was Professor Jenny Higham at St George’s Hospital Medical School. The Chairman said she would write and invite Prof Higham to come and speak to us.
2.10 Janice Kent expressed concern about patients diagnosed with ME not being referred elsewhere when another serious condition had become apparent. Prof Curran said this was a challenge that had been seen in various different areas of medicine. It was often easier to put patients on a standard care pathway than to look at them all individually. He referred to the problems that had arisen with the Liverpool Care Pathway for the terminally ill.
2.11 Clare Ogden asked what we could realistically feed into the MLA to move things along. Prof Curran said we should feed into the MLA public consultation and outline the prevalence of ME and the problems ME patients encounter. This public consultation runs until the end of April 2017.
2.12 The GMC was widening the requirements of postgraduate training curricula through the generic professional capability framework. This will be published in May 2017. All the colleges have Patient Liaison Fora that we could engage with. From April 2017 all the colleges would have to revise their curricula to include the generic professional capability framework under the new GMC standards for curricula. It would take some three years to revise all 98 postgraduate curricula.
2.13 Clare asked whether patients would be consulted about the post-April work. Professor Curran said that the colleges are not required to organise formal public consultation as such but that the postgraduate curricula must take patients’ views into account, so we should contact the Medical Royal Colleges and Faculties through their Directors of Education to make representations.
2.14 For inclusion in Medical School curricula he suggested Heads of Curriculum would be the most appropriate contacts. In both undergraduate and postgraduate curricula it would help if we could evidence that there is a high prevalence and they must also take patient safety, risk, etc., into account.
2.15 Prof Curran also referred to the UK Foundation Programme. This was a generic training programme for newly graduated doctors which was being completed by 7,600 doctors a year. He suggested contacting David Kessels, the Head of the Foundation Curriculum Programme.
2.16 The Chairman thanked Prof Curran for being so helpful.
3. MINUTES OF THE LAST MEETING (7 December 2016) were agreed to be a true record.
. 4.MATTERS ARISING
4.1 The Chairman referred to the presentation by Professor Stephen Holgate. There had been some unhappy comments about the CFS/ME Collaborative and the MEGA project – for example there were claims of secrecy and members of the Patient Advisory Group (PAG) not being allowed to speak to each other. Clare Ogden said that in fact the PAG converses on the subject regularly, staying in touch with other by email and telephone outside the meetings. A response to MEGAs initial expression of interest, submitted in January, was expected in a couple of weeks. Dr Charles Shepherd said he had spoken to a member of the PAG who had informed him there was very robust and active discussion going on. Clare added that members had been asked, though, to keep the content of any papers and e-mails confidential.
4.2 Tony Crouch asked whether the PAG was representative of all types of ME patient, for example the severely affected. Clare confirmed they were and that the members are listed on the MEGA website. Charles Shepherd added that he had been on the selection panel for the PAG and had ensured there was wide representation. The Chairman asked whether severely affected patients would be the actual subjects of research. Clare confirmed they would be. Tony and Janice asked how those patients would be identified, and Charles Shepherd said the ME Biobank used a research nurse to visit people with severe ME at home but it was not known how they would be found in relation to the MEGA study. Clare said that had yet to be decided.
5.1 The Chairman said she had received a very full and sympathetic letter from the Chair of the Parliamentary Accounts Committee (PAC) which she would copy to all members. Referring to FITNET she had had a meeting with the Deputy Chief Medical Officer (DCMO) who said it was being investigated by the CMO’s office.
5.2 Dr Charles Shepherd said the MEA had agreed to pay for the release of the re-analysis paper; it had been agreed with the publisher the day before.
5.3 The Chairman referred to a paper which had been tabled proposing an Inquiry into the PACE trial by the Health Select Committee. It had been suggested that Forward-ME endorse this paper calling for an Inquiry. It was agreed that there was likely to be a better chance of success if any proposal covered broader aspects of ME/CFS. The Chairman said she might suggest an investigation into all the “Medically Unexplained” conditions. Clare agreed that any investigation should cover a much broader area. The Chairman would contact the author of the paper on this basis.
The Chairman said Mark Baker’s response to her last paper had been “Just what we were waiting for”. Charles Shepherd said he would send him the full re-analysis paper. Janice Kent referred to a paper on Ethics and Medical Research which she had forwarded to the Chairman. The Chairman said she had another which she would distribute.
Dr Charles Shepherd said the MEA Christmas Appeal had brought in £60,000 in a matter of weeks. It would help to fund a Metabolomics study at Oxford. The Chairman said she had received an invitation to visit the UK Biobank at Oxford.
Dr Charles Shepherd reported that he had received a document from Maximus; it was a new training module foR medical staff doing benefit assessments. There were some inaccuracies, and there were six pages on DLA but nothing on PIP. The Chairman asked Charles and Clare to let her have their critiques. Clare referred to the Green Paper on Work, Health and Disability.
9. ANY OTHER BUSINESS
9.1 Dr Charles Shepherd said there had been a very good investigation by the Disability News Service into apparent inaccuracies relating to DWP benefit medical assessments carried out by ATOS and Capita. Apparently, too, an MP was leading an investigation into work capability assessments. Members had been informed by ME sufferers of inaccuracies in their assessment reports.
9.2 Bill Kent asked whether the MEGA project had received the funding it was seeking. Clare Ogden explained that the initial expression of interest to the Wellcome Trust had been submitted. They should know within four to six weeks.
9.3 Tony Crouch referred to the speaker for the next meeting, Isabelle Trowler. There were some problems he wanted to put to her. The Chairman asked him to come to the meeting and put the questions.
9.4 The Chairman asked members if they would like her to write to the Royal College of General Practitioners again (the CEO rather than the President). This was agreed.
10. Date of next meeting 14 March 2017. Speaker Ms Isabelle Trowler, Chief Social Worker for Families and Children.
The meeting closed at 3.20 pm.
from ME Association