The results from an autumn 2022 survey completed by ten (of fourteen) NHS Health Boards in Scotland was released by the Scottish Government on 16th May 2023. It aimed to understand delivery of ME/CFS services in Scotland, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development. On 20th November 2024, the Scottish Government published an update as responses had been received from all 14 territorial NHS Boards in Scotland. Of the 14, 7 updated their 2022 response, 3 NHS Boards reported no updates and 4 provided a response for the first time.
There are limitations to the survey –
- The returns provided by NHS Boards provide a snapshot of services for people with ME/CFS that were in place or planned as at July 2024. The analysis therefore does not capture any developments in services or support that have occurred since Summer 2024.
- All questions within this survey were optional, and not all NHS Boards answered every question, with responses varying in the level of detail provided.
- An analysis of change over time was also limited to NHS Boards that responded to both the first and second iteration of the survey. As a result, the national picture of services and changes over time presented is incomplete.
Report Summary
Survey responses highlighted that provision for ME/CFS varies greatly across Scotland and ranges from generalist to specialist support by staff trained in ME/CFS. Only two NHS Boards have a specific specialist ME/CFS pathway for patients in their area and, at the time of this survey, only one of these pathways was active. Most NHS Boards agreed there are potential synergies between a specialist ME/CFS service and pathways for other long-term conditions.
The report highlights where each NHS Board receive their ME/CFS referrals from; what primary support is offered to people with ME/CFS by each NHS Board; what secondary support is offered by NHS Boards if there is no specialist service for ME/CFS or similar long-term condition management service available; how support delivered; and who delivers it.
Areas of Concern
However, within the report are a number of startling admissions but it must be recalled that the NICE guideline on ME/CFS is not directly effective in Scotland although the Scottish Government undertook a partial update of information materials in August 2022 which inserted key changes of practice culled from the 2021 NICE guideline as a temporary measure whilst it looked to update the Scottish Good Practice Statement on ME/CFS.
When asked ‘How aware NHS Boards are about the NICE guideline changes about Graded Exercise Therapy (GET), 2 Boards – NHS Highlands and NHS Western Isles gave ‘no response’ whilst NHS Dumfries and Galloway stated they were ‘moderatelly aware’. The remaining 10 stated they were ‘very aware’.
Similarly, reponses to the query ‘How aware NHS Boards are about the NICE guideline changes about Cognitive Behavioural Therapy (CBT)’ provided lesser certainty. NHS Highlands moved from ‘no response’ with regard to GET to ‘unknown’ for CBT. NHS Western Isles again gave ‘no response’. As for the other 9 were ‘very aware’, 2 ‘moderately aware’, and 1 ‘somewhat aware’.
This survey demonstrated only “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”.
On what specialist services the NHS Boards provided – 2 said that they already had specialist services in place (NHS Greater Glasgow and Clyde and NHS Lothian), 1 reported plans for a specialist service (NHS Dumfries and Galloway), and 1 NHS Board had suspended their specialist service temporarily (NHS Fife). Nine NHS Boards said they did not have plans to develop specialist services for ME/CFS in their area, and 1 NHS Board did not respond to the question (NHS Western Isles).
Given that the NICE guideline at 1.12.27 states clearly “Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.” NHS Glasgow and Clyde “…. highlighted a range of interventions and service developments that it is currently trialling or planning to support people with ME/CFS. Support includes: The Lightning Process within ME/CFS and long COVID Unit.”
In addition, dedicated long COVID funding was stated as having improved the scope of services available to people with ME/CFS, however it was pointed out that withdrawal of this stream of funding could create a risk of negative consequences for ME/CFS provision. Some NHS Boards raised concerns that this new focus could lead to staff re-deployment, unsustainable services or inequity in service provision depending on an individual’s condition.
For those with severe or very severe ME/CFS the mode of provision of service is also of concern. Whilst most NHS Boards described offering the option of phone or video consultations and interventions, some expressed challenges to provide further flexibility to meet the needs of people with severe or very severe ME/CFS. Home visits were part of the NHS Fife specialist ME/CFS service prior to its suspension. NHS Boards with an active specialist service described ‘rarely’ offering home visits for bedbound or housebound patients, or not offering this at all. Only NHS Ayrshire and Arran described having in-patient facilities if required via a Neurological Rehabilitation Service. Elsewhere, community health and care services were noted to provide input support people with ME/CFS at home.
Conclusion
…. 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.