Last year, ME Research UK used Freedom of Information requests to quiz Scotland’s 14 NHS boards on how they intended utilising the Scottish Government’s £4.5m allocation of annual funding to enable NICE compliant provision for people with ME/CFS.
On 12 October 2026, ME Research UK used FoI to contact NHS Highland concerning progress made in the opening of a specialist service to serve the needs of those with ME/CFS within the health board’s borders.
Considering the Scottish Government’s announcement on ‘Funding long COVID services’ (which encompasses ME/CFS services) and that NHS Highlands has undertaken that it will deliver a Post Infection Service covering Long COVID, ME/CFS, PTLDS (Post-Treatment Lyme Disease Syndrome), and similar conditions and has been allocated £300,000 per annum
- On what date did (or will) the Post Infection Service be available for referrals?
- If the Post Infection Service is in operation how many referrals have been made since it began?
- How has NHS Highland advertised the service to GPs and other healthcare professionals to allow for referrals?
- If the service is not yet running – how has the £300,000 allocated been spent and on what?
The Board responded on 10th November 2026 (FOI: 300681) as follows
- NHS Highland does not hold information on the date the Post Infection Service will be available for referrals. The date for this is still to be confirmed as medical recruitment is still in progress. In accordance with section 17(1) of the Freedom of Information (Scotland) Act 2002, NHS Highland confirms that it does not hold the information you have requested. This response therefore represents formal notice that the information is not held.
- None. NHS Highland is not open to referrals at this time. In accordance with section 17(1) of the Freedom of Information (Scotland) Act 2002, NHS Highland confirms that it does not hold the information you have requested. This response therefore represents formal notice that the information is not held.
- The service is closed to new referrals at the moment, pending medical recruitment. Referrals will be via SCI store [SCI Store is an information repository that provides clinicians with secure access to patient information at the point of care]. We have a referral structure agreed with the GPs and secondary care doctors and the SCI store criteria already in place. Referrals will then be vetted by the team. Communications are also drafted – ready to share once open.
- The money has been ring fenced for use for the PACCs service. Some has been spent on additional clinical hours to reduce the current patient backlog (from the CRS) and facilitate service building – e.g. writing and getting the referral criteria approved and setting up governance structures. In anticipation of an initial increased rate of referrals, its proposed to use part of this money on extra sessions for staff once open. Funding has largely been used for clinical staffing, setting up of service
In the 21st October 2026’s edition of the Inverness Courier, it was reported that although the Health Board had been working towards launching a provisional service supporting people living with ME/CFS in September 2026 “New patients will be referred to a much-needed specialist service before the end of the year” The newspaper reported that ‘Acceptance of new referrals remains paused while recruitment to two key medical posts is finalised. Once these clinicians are in post we anticipate new referrals will reopen before the end of the year.’ What happens if the positions are not filled?
