Report on a meeting held on Thursday 16th June between Forward ME (FME) and the Royal College of General Practitioners (RCGP) to discuss implementation of the new NICE guideline on ME/CFS in primary care.
Representing Forward ME
Andrew Morris – Chair, Forward-ME
Jonathan Davies – Chair, ME Research UK
Dr Charles Shepherd – Trustee and Hon. Medical Adviser, ME Association
Denise Spreag – ME Action advocate
Dr William Weir – doctor
Peter White – Forward-ME
Professor Martin Marshall – Chair, RCGP and a GP in East London
Dr Michael Mulholland – Hon Secretary, RCGP and a GP in Buckingham
Aislinn Santoni – Senior clinical policy officer at the RCGP
Having decided that it would be helpful for FME to speak to representatives from all of the Royal Medical Colleges about implementation of new NICE guideline, our first meeting was arranged with the RCGP.
This took place on Thursday 16th June and lasted for about an hour.
Before the meeting took place we supplied the RCGP with the following background information on key aspects of the new NICE guideline on ME/CFS that relate to primary care:
1 The need for education and training of GPs on ME/CFS – as many GPs are still unsure about how and when to diagnose ME/CFS and how to manage these patients (NICE guideline 1.16.1)
2 Making an early and accurate diagnosis – normally during the 3 months from the onset of symptoms – and providing appropriate management advice when ME/CFS is being suspected (NICE guideline 1.2 and 1.3)
3 Referral to a specialist team/service for confirmation of the diagnosis and preparation of a care and management plan – including the problems that occur where no local ME/CFS specialist referral service exists (NICE guideline 1.4)
4 GP management of basic symptoms – including activity and energy management, pain, sleep, and dysautonomia (NICE guideline 1.11 and 1.12)
5 Care of the severely and very severely affected – including home visiting (NICE guideline 1.17)
6 Follow up and regular monitoring in primary care (NICE guideline 1.15)
We also referred to some important developments over the past few weeks regarding both management of people with ME/CFS and research into ME/CFS:
Publication of the James Lind Alliance Priority Setting Partnership list of research priorities:
FME thanked Professor Marshall for agreeing to meet with us and listen to our views about the way in which primary care should be responding to the new NICE guideline.
FME stated that the patient community had welcomed the new guideline, especially the removal of GET and the new recommendations on activity and energy management that are consistent with pacing.
FME pointed out that GPs now have a very important role in both the diagnosis and management of people where ME/CFS is being suspected and that once a diagnosis has been made, ideally no later than 3 months from the onset of symptoms, patients should be referred to a specialist team/service where a care and support plan can be prepared and agreed. Patients would then be jointly managed in varying degrees in both primary and secondary care.
The new role for GPs in both diagnosis and on-going management will obviously require education and training.
So we discussed a number of initiatives where we would like to work with the RCGP – including the preparation of a new RCGP learning module on ME/CFS and sending out a paper version of the guideline covering key recommendations to all GP surgeries in the UK (MEA to action).
Implementation of the recommendations in primary care will also involve GPs spending more time with people who have ME/CFS.
The RCGP explained that there are things that they can be doing and things that they should be doing if they have the resources to do so.
On the subject of care for people with severe and very severe ME/CFS, FME pointed out that for many people in this situation obtaining a home visit was often impossible.
We questioned whether this situation could be improved by the NHS providing financial incentives to carry out home visits.
RCGP explained that the problem was not really financial but far more related to the crisis in the workplace in primary care, shortage of GPs, and pressures on GP time.
The RCGP asked us about the current position of members of the Royal Colleges who had opposed the new recommendations relating to CBT, GET and child protection.
FME explained that some of this opposition remained and that we were now hoping to meet with other Royal Colleges in due course and would welcome any help and introductions that the RCGP could provide here.
FME also questioned what powers the RCGP have where a GP is clearly not following a recommendation in the new guidance.
RCGP explained that they do not have any regulatory powers.
So complaints about non compliance with guideline recommendations would have to be made elsewhere.
Overall, there was a lot of common ground and an acknowledgement that we should be working together on education and training initiatives, the provision of specialist referral services where none currently exist across the whole of the UK, and improving the way in which GPs view, diagnose and manage this illness.
However, there were some differences of opinion, in particular the use of the term biopsychosocial.
The RCGP explained that this is now widely used in primary care in relation to almost all illnesses they treat because GPs often have to deal with social, psychological and medical consequences of the conditions they treat.
However, as FME pointed out, the biopsychosocial model has become a very toxic term in relation to ME/CFS due to the way in which psychological and social factors are consistently over-emphasised resulting in many health professionals believing that ME/CFS is a psychosomatic illness. FME explained that we do not have any problem with accepting that, as with any long term condition, there can be psychological distress in some cases, but it is not a psychological illness. RCGP accepted that ME/CFS is a medical condition..
FME also emphasised that while some doctors do regard ME/CFS as a physical illness, there were still some who did not even believe that ME/CFS exists as a clinical entity or were generally hostile to the condition.
So there needs to be a major cultural change in the way that general practice views ME/CFS and manages the people who have it.
We felt that this was a good start in relation to be able to express what we felt needed to be done in primary care.
However, there is clearly much work to be done and this includes a significant change in the way that some GPs view and manage people with ME/CFS.
We hope that this will be the start of a new and positive relationship with the RCGP.
With acknowledgment to Dr Charles Shepherd of the ME Association for providing this report to members of Forward-ME