Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022

2. Executive Summary

This report analyses survey responses from ten NHS Health Boards in Scotland to understand what ME/CFS services are being provided and how services are embedding the updated National Institute for Health and Care Excellence (NICE) guidance on the diagnosis and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The aims of this report are to understand 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.

The survey analysed in this report was commissioned by the Scottish Government in response to the growing call for specialist ME/CFS services in Scotland (since 2002) and after the recent (2021) NICE ME/CFS treatment guidelines were updated. This report is to be considered alongside the publication of a stakeholder consultation review regarding the changed guidelines and the potential implications for support in Scotland.

The results showed that, overall, provision of care across the ten NHS Boards was varied from generalist to specialist support by staff trained in ME/CFS. More than half of the NHS Boards that responded to this survey did not have specific ME/CFS referral pathways, and only one had a specifically trained ME/CFS staff nurse. Many people with ME/CFS were referred onto long-term condition management pathways for other illnesses, such as Long COVID or chronic pain, as these often provided suitable support and management options for people who experience conditions with similar symptoms to ME/CFS. Most NHS Board responses highlighted that there is an awareness of the updated NICE guidelines, specifically around Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). Despite this awareness, implementation of the updated guidelines as a whole was varied due to limited resources, lack of specific pathways or trained ME/CFS staff to support implementation, referrals of people with ME/CFS to third sector organisations or other long term condition management pathways, and increased caseloads due to the impact of COVID-19. The results of this survey highlight the willingness of NHS Boards to develop ME/CFS specific treatment and support, yet there is an acknowledgement that potential barriers will need to be addressed first.

Through the analysis of this survey data, the key perceived barriers to implementing the new NICE guidelines or developing an ME/CFS specific pathway included challenging outdated views and application of ME/CFS knowledge. Both factors would potentially impact the variation of support across Scotland. In addition, NHS Boards highlighted issues around funding and resources specific to local service delivery. The responses highlighted the value of a multi-disciplinary team for supporting people with ME/CFS and the potential benefits of integrating support into other long-term condition management pathways. However, perhaps due to the lack of one specialist ME/CFS pathway within most NHS Boards, patient feedback or outcomes were more challenging to monitor or obtain.

Four key findings were identified from the results of this survey, highlighting potential areas requiring further research or understanding.

The results highlight a need to understand clinical, lived experience, and stakeholder perspectives on whether ME/CFS services should be delivered through a specialist pathway or support should be integrated into pathways for the management or treatment of other long-term conditions. In addition, whether this support should be delivered by an individual staff member or via a multi-disciplinary team. The results of this survey combined with the stakeholder consultation review show support for establishing further education and research opportunities in Scotland for people with ME/CFS. Finally, delivery of pathways and education opportunities should be created with consideration and involvement of those who live with and are impacted by ME/CFS to ensure that the design and development of ME/CFS care in Scotland is suited to meet the needs of those with this condition.