Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) services in Scotland: health board survey - updated analysis

7. Key Findings and Conclusion

The aims of this report were to understand ME/CFS care provision in Scotland, the barriers and opportunities to implementing the updated NICE guidelines and how NHS Boards can be best supported to create ME/CFS specific care in the future. Survey responses highlighted that there are a variety of different care models and referral pathways for people with ME/CFS in Scotland and suggests that these have diverged somewhat since 2022. Diagnosis and onward referrals take place largely within primary care, with services offered dependent on local resources, referral pathways, and geography of the NHS Board area.

Dedicated long COVID funding has improved the scope of services available to people with ME/CFS, and NHS Boards described applying learning from evaluation of long COVID services and embedding this in service design. Nearly all NHS Boards agreed that there are potential synergies between a specialist ME/CFS service and pathways for other long-term conditions, with some NHS Boards having planned or rolled out integrated pathways in place of a specific ME/CFS specialist service. Access to specific specialist ME/CFS care remains limited: two NHS Boards have a specialist pathway specific to ME/CFS, of which only one was active at the time of the survey. Four additional NHS Boards described access to specialist support by staff trained in ME/CFS. Lack of specialist services including few in-patient facilities is likely to impact care for those severely or very severely affected by ME/CFS and NHS Boards described provision for this group of patients as challenging.

That all 14 territorial NHS Boards provided information on current service provision for people with ME/CFS suggests engagement amongst service planners to improve support for people with ME/CFS. There have been expansions in service provision, improvements in knowledge sharing and educational resources for professionals and the public, and a broadening of referral routes to manage ME/CFS and co-existing conditions since 2022. This survey demonstrates there has been an overall small increase in awareness of key changes to the NICE guidelines amongst health care staff as reported by NHS Boards in Scotland between 2022 and 2024. Only one NHS Board has faced specific recruitment challenges and a reduction in specialist service provision over time. Moreover, responses highlighted shared priorities across NHS Boards of research and investment in technology to better assess a range of clinical features and symptoms associated with ME/CFS.

However, similar barriers to implementing the NICE guideline were voiced by NHS Boards as in 2022. Constraints around resourcing and funding, outdated professional and public views about ME/CFS, and legacy waiting lists were raised. New and updated responses also highlighted recruiting staff with specialist skills, coping with an increase in demand for services, sustainability of funding (including long COVID funding and fixed-term specialist resource), and limited staff capacity for training as emerging issues. The results of this survey highlight a willingness of NHS Boards to develop ME/CFS specific treatment and support, yet there is an acknowledgement that better understanding and awareness of ME/CFS, investment in training capacity and sustainable service design will need to be addressed first.