Question

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

Answer

The National Institute for Health and Care Excellence (NICE) produce a framework of recommendations to the NHS and social care services in the form of Clinical Guidelines which apply in England, Wales and Northern Ireland.

They are taken note of in Scotland (population = 5.5 million with 14 Health Boards) but they have a different system for clinical guideline production called the Scottish Intercollegiate Guidelines Network (SIGN). However, in the case of ME/CFS the official guidance on the diagnosis and management of ME/CFS is called the Scottish Good Practice Statement (SGPS). We were involved in the preliminary preparation of the SGPS with Dr Gregor Purdie, a GP from Dumfries, many years ago and are involved with its review.

The SGPS was published in 2010 and is currently under review as a consequence of the 2021 NICE Guideline on ME/CFS (NG206). An interim statement to this effect was issued in March 2023. While we acknowledge that it is temporary, we can’t help but be disappointed, as the statement has not actually updated the SGPS to any notable effect. So, we continue to wait on the Government, the NHS and social care services in Scotland to make more progress in this area.

• In July 2022 an independently-produced stakeholder report on the 2021 NICE Guideline on ME/CFS was received by the Scottish Government. Maree Todd, MSP, Minister for Public Health, Women's Health and Sport, issued a supportive statement: “The Scottish Government is fully supportive of the NICE guideline, and the accompanying implementation statement. We have also written to health boards and those providing medical education to highlight the key changes within the NICE Guideline. We will continue to work to raise awareness on the condition and ensure the Scottish guidance is updated to reflect these changes.”
• In February 2023, Sue Webber, MSP, led a parliamentary debate in Holyrood about ME/CFS. Maree Todd responded stating the government is working with the Royal College of General Practitioners Scotland on how to progress dissemination and promotion of Guideline. Referring to calls for specialist service provision, she talked about current health policies in recruiting healthcare personnel, generally developing multidisciplinary teams in primary care, and implementing their policy “Realistic Medicine”. She continued, saying that the Government has surveyed Health Boards regarding their care pathways and service provision for ME & CFS patients, and expect to report on the results in May. She indicated the results should help identify locations for piloting aspects of service development.

As you correctly indicate, hospital-based referral services in Wales and Northern Ireland (and Scotland) are inadequate or 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 but have had to wait a lot longer, relying on the abilities of GPs or seeking referrals to specialists in England – which is far from satisfactory.

The recommendations in sections 1.4.3 and 1.4.4 of the NICE Guideline on ME/CFS, relating to management after a diagnosis has been made, make it very clear that people should be referred by their GP to a ME/CFS specialist service. This applies to adults, children and adolescents. 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 7 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. We understand that the NICE Guideline on ME/CFS is now being discussed by the Welsh Government. 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 6 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. We think 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 economic or geographical reasons for doing so and having a fully joined-up service. The Isle of Man launched a new ME/CFS and Long Covid specialist service in April 2023.

• Please let us know if you are using the 2021 NICE Guideline on ME/CFS to try and establish a new hospital-based referral service anywhere in the UK or would like more information about the MEAs Health and Social Care Initiative which will provide support to help local people lobby for improved or new services: health@meassociation.org.uk