The Minutes of the Forward ME Group Meeting held in the Television Interview Room at the House of Lords on Tuesday 7 February 2017, have been posted on the Forward ME website.
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 (Countess of Mar) thanked Prof Curran for being so helpful.