The inexactitude of how the Scottish Government’s £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS led Rhoda Grant MSP (with assistance from ME Research UK) to seek more details via Freedom of Information requests from the Boards in her constituency – Highland, Western Isles, Orkney and Shetland NHS Boards.
ME Research UK has built upon these and sought similar information from the remaining Scottish Boards to discover what provision they will be making and whether they will be adhering to NICE principles of care and support.
ME Research UK was concerned that the September 2025 funding announcement failed to mention a commitment to ensure NICE compliant ME/CFS options given the dire lack of knowledge and NHS services currently available for those with ME/CFS – as evidenced by the Scottish Government’s own report. When Ben Macpherson MSP tabled a question to enquire how the funding proposal of £4.5m, covering a number of areas, would impact ME/CFS – especially in implementation of the ME/CFS NICE guideline – now Scotland’s “the default clinical guidance on ME/CFS“ – there was no mention other than “It is expected that NHS boards will develop support based on their understanding of local population need and synergies with existing local service provision.”
ME Research UK therefore asked
Considering the Scottish Government’s announcement on ‘Funding long COVID services’ (which encompasses ME/CFS services –
- How does NHS Greater Glasgow and Clyde intend tailoring appropriate and NICE NG206 compliant services for those affected by ME/CFS and how will it ensure services meet best practice as benchmarked by NICE – especially for those severely affected?
- How much is NHS Greater Glasgow and Clyde’s share of the allocated annual £4.5 million.
The answer (Freedom of Information Request – Ref 2503070 ) is long on form but short in specifics.
- NHSGGC were advised on 18 September, embargoed until 25 September that the bid submitted to the Scottish Government had been successful with funding letter following in October. The health board plans to augment the existing AHP Long Covid Service staffing and then to work at pace with a number of stakeholders including people with lived experience of long-term conditions, as well as third sectors providers and registered charities that support people living with a range of long-term conditions.
In addition to augmenting the long covid service we will work closely with the Centre for Integrated Care to ensure that where required, patients will be able to access medical professionals and psychology services, in addition to specialist physiotherapy and occupational therapy.
The NHSGGC Long Term Conditions Service (LTCS) will accept referrals from General Practices as well as secondary care services such as Respiratory, Rheumatology and Cardiology. The GP or physician referring from secondary care will remain the Responsible Medical Officer (RMO).
The LTCS is not a diagnostic service, the RMO will carry out all required tests to assist with diagnosis before referring to the service. This model has worked well for Long Covid.
The LTCS will carry out a detailed holistic assessment of a referral accepted into the service. This assessment will cover all aspects referred to in the NICE Guideline.
As with many long-term conditions there is currently no cure for ME/CFS. The NHSGGC service will recognise that everyone’s experience of this condition is unique to them. Patients and where helpful carers will work with a clinician to agree a package of care that meets the individual’s needs and aspirations.
The NICE guideline focuses on symptom management and use of supported self-management techniques, assessment and prescription of mobility equipment and equipment that maintains or improves independence levels. In addition, it focuses on energy conservation techniques, access to social care, focus on income maximisation and finally vocational rehabilitation (work, study and voluntary work). It also recognises the psychological and emotional distress ME/CFS can cause. We have access to psychology and can refer onto Primary Care Mental Health Teams or advise referral to CMHT if required.
We also have advanced practitioners who are experts in all these areas. We utilise evidence-based approaches and use pre and post clinical outcome measures that will objectively assess if interventions are effective.
Our practitioners receive clinical supervision in line with NHSGGC AHP Supervision policy. We also routinely audit clinical case notes to assure the organisation that interventions are safe, effective and efficient.
The LTCS sits within a larger health and social care system. If a patient’s condition is very severe and requires escalation due to clinical concerns this will be done. The patient will always be supported by the clinical service that can best meet care needs.
CIC’s role is to manage patients who have already undergone treatment and investigation for their associated condition elsewhere. - £957,544.
