Medical Matters > The 2021 NICE Guideline ME/CFS: Scotland, Wales and Northern Ireland

ME Essential Autumn 2021

Question

I know that the recommendations in the new NICE guideline apply to England. But what is the situation in Scotland, Wales and Northern Ireland where GPs often lack the necessary skills to diagnose and manage people with ME and hospital-based referral services are either poor or non-existent.

Answer

NICE guidelines apply in England, Wales and Northern Ireland. They are taken note of in Scotland (population = 5.5 million with 14 Health Boards) where they have a different system for clinical guideline production called SIGN. However, in the case of ME/CFS the official guidance on diagnosis and management of ME/CFS is called the Scottish Good Practice Statement (SGPS).

I was involved in the preliminary preparation of the SGPS with Dr Gregor Purdie, a GP from Dumfries, many years ago. The SGPS was published in 2010 and is now in need of a major update.  Consequently, NHS Scotland has stated that a review of the SGPS will now occur after publication of the new NICE guideline. At the time of writing, no further information had been issued by NHS Scotland.

Some people in Scotland have asked for a SIGN guideline on ME/CFS. However, the problem here is that the whole process of appointing a guideline development committee, agreeing on the scope of the guideline, reviewing all the evidence and then writing a guideline with stakeholder consultation is a very time-consuming process and could easily take two years – or even longer.

As you correctly indicate, hospital-based referral services in Wales and Northern Ireland (and Scotland) are inadequate and are often non-existent. The regional governments have also been very reluctant to set up any sort of proper referral services for people with Long Covid like the ones in England. So people with ME/CFS are not alone.

The recommendations in sections 1.4.3 and 1.4.4 of the new NICE guideline regarding management following diagnosis make it very clear that people should then be referred by their GP to a ME/CFS specialist service. This applies to adults, children and adolescents with ME/CFS. So where no local ME/CFS referral service currently exists it is going to be very difficult for health boards and other health service providers to refuse to do so, or use delaying tactics to avoid doing so. Consultation with people who have ME/CFS regarding what sort of service they want, and where, is going to be essential. Time-wasting initiatives are not acceptable.

In Wales, where there is a population of around 3.2 million, and seven health boards, each health board is looking after the needs of around 400,000 people. With ME/CFS having a prevalence of around 4 per 1000, around 1,600 people in each health board could have ME/CFS and up to 400 will have a severe form of ME/CFS. So there really is no excuse for not providing a proper multidisciplinary referral service. My understanding is that the new NICE guideline is now being discussed at government level in Wales. So it’s essential that people in Wales also involve their political representatives in both Cardiff and Westminster to get things moving.

In Northern Ireland, with a population of 1.9 million with six Health and Social Care Trusts, there have been several attempts to set up a specialist ME/CFS service – as well as discussions as to whether an ME/CFS service could be combined with a Long Covid service. My personal view is that there is a real danger of the Long Covid service being the dominant partner and it would therefore be better to keep things separate but linked – unless there are good geographical and population reasons for doing so and having a fully joined-up service.

  • Please let us know if you are using the new NICE Guideline to try and to set up a new hospital-based referral service for people with ME/CFS anywhere in the UK: Feedback@meassociation.org.uk

Further information: 

MEDICAL DISCLAIMER

Medical Matters is for information purposes only. The answers provided by Dr Shepherd and the ME Association’s other expert advisers should not be construed as medical advice. We recommend that any information you deem relevant is discussed with your GP as soon as possible. It is important to obtain advice from a GP who is in charge of your clinical care, who knows you well, and who can consider other likely causes for symptoms. Seek personalised medical advice whenever a new symptom arises, or an existing symptom worsens. Don't assume that new or worsened symptoms are a result of having ME/CFS.

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