The draft Scottish Budget for 2025/26 was delivered by Shona Robison MSP, Scotland’s Finance Secretary to Holyrood on 4th December and contained a commitment for an ‘additional £4.5 million to deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions.’
As the Scottish government is a minority one the budget may be amended or rejected and so may fall but as health is a fully devolved matter the priorities stated by the Scottish government could have an impact on those affected by ME, CFS, Long Covid, and the like, in Scotland.
Ben Macpherson, MSP‘s Written Question S6W-32043 probed how the funding proposal, covering a number of areas, would impact ME/CFS – especially in implementation of the NICE guideline on ME/CFS. It ought to be remembered that the guideline is not directly effective in Scotland. Rather, the Scottish Good Practice Statement in ME/CFS has been updated partially to include certain elements of the 2021 NICE guideline with an understanding that the Statement will be revisited once the Delivery Plan on ME/CFS is finalised and (eventually) published – now due March 2025.
Q – To ask the Scottish Government, in light of the announcement in its draft Budget 2025-26 of an additional £4.5 million to “deliver new specialist support across the country for Long Covid, ME, Chronic Fatigue, and other similar conditions”, whether this will include funding for the implementation of the NICE guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), in the event that the draft Budget is agreed to by the Parliament.
A – We want everyone living with ME/CFS in Scotland to be able to access the best possible care and support. That is why the Budget includes a new investment of £4.5 million to deliver specialist support for ME/CFS, Long Covid and other similar conditions. We have commenced early work to determine how this funding should be allocated.
This important investment will help support people with ME/CFS across Scotland, and we are asking Parliament to unite behind the Budget to ensure this funding reaches the people who need it.
While the Scottish Government sets the strategic policy for the NHS in Scotland, it is NHS Boards and healthcare professionals locally who have responsibility for both service delivery and ensuring people receive the right care for them, taking into account relevant guidance and the needs of patients. The Health and Social Care Standards, issued in 2017, also set out the expectation that care should be provided by health and social care professionals based on the most relevant evidence, guidance and best practice, as is appropriate to their profession and patient group.
We have already taken a number of steps to demonstrate our support for the NICE guidelines. Most recently in November 2024 we published an analysis of data from all NHS boards about their arrangements for ME/CFS care and their awareness and implementation of the NICE guidelines.
ME Research UK has previously commented on both the original and updated NHS data and highlighted the lack of provision, inconsistencies of approach, and general dire landscape for those entitled to NHS support throughout the country.
As the updated survey found – the
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.
Within the NHS, a commitment of £4.5m across the country and spread through several ilnesses and diseases, seems small beer in light of the manifest need and the complete lack of specialist services which exist across large swathes of Scotland. How the funding will deliver real change tailored to the needs of those living with ME/CFS in Scotland and how long the government’s deliberations will last on how the funds will be allocated and utilised are unknown. The report ‘Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) services in Scotland: health board survey – updated analysis’ highlighted just how much needs to be done – even at a basic level of understanding what services are needed and of developing a care pathway which is consistent and appropriate in light of NICE. The Survey actually evidenced how much basic work was needed within the NHS and likely that whatever proportion of the £4.5m is allocated to services relevant to ME/CFS will it really be enough to fund the “best possible care and support”?
Afterall
- The 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”.
- 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’.
- When asked ‘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’.
- 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.”
