Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) services in Scotland: health board survey - updated analysis

6. Discussion

Analysis of the first iteration of this ME/CFS scoping survey in 2022 highlighted that provision of support in Scotland varied from generalist support across multidisciplinary teams to specialised support by staff trained in ME/CFS. Further that the implementation of the NICE guidelines in relation to ME/CFS was mixed, with variation due to limited resources, lack of specific pathways or trained ME/CFS staff, 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.

Updated and new contributions from NHS Boards in 2024 largely repeat these themes, with some key service developments and changes to ME/CFS care delivery between 2022 and 2024. These changes have been grouped together in the following themes, which are described in more detail below:

• Learning from long COVID and integrated pathways
• New developments in ME/CFS services
• Delivering services to people with severe or very severe ME/CFS
• Resourcing and referrals

6.1 Learning from long COVID and integrated pathways

As in 2022, a variety of models of service provision for ME/CFS were reported by NHS Boards in Scotland, ranging from generalist to specialist support by staff trained in ME/CFS, to a specific ME/CFS specialist service, depending on NHS Health Board area. Recent survey responses indicate that local long COVID service funding has provided an opportunity to review care delivery models for ME/CFS and prompt change.

In some cases, dedicated long COVID funding has improved the scope of services available to people with ME/CFS. In NHS Lothian, since 2023, there have been two 12-month fixed-term posts providing Occupational Therapist support to adults, children, young people and their families affected by post-viral conditions. A newly funded Physiotherapist post in NHS Orkney was also established in 2022 with the role of overseeing and co-ordinating care for people with long COVID and ME/CFS.

More broadly, NHS Boards are applying learning from the evaluation of long COVID services to improve communication between professions and locate appropriate support for people with ME/CFS. This is exemplified in NHS Dumfries and Galloway where a new single service model for energy-limiting conditions has been developed, and in NHS Tayside where an evaluation of the long COVID rehabilitation service has been used to improve a model of peer to peer clinical discussion and will be used in future wider service development to support people with long-term conditions.

Yet a recent focus on long COVID 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 example, NHS Grampian noted that “the additional funding that was received to support Long Covid Pathways development has been welcomed and does provide support [to] a number of patients with symptoms including CF[S], however this funding is time-limited and our exit planning from our current model will need to be part of our wider local long term management solutions.” Specialist ME/CFS services in the UK within the BACME National Services Survey have also described the impact of uncertainty of future funding, following the benefits of accessing funding from long COVID. It is evident that most NHS Boards feel there are significant synergies between ME/CFS and pathways for other long-term conditions including long COVID but that recurring funding is needed to better meet the needs of people with ME/CFS.

6.2 New developments in ME/CFS services

There has been a small increase in overall awareness of key changes in the NICE guidelines relating to CBT and GET across NHS Boards since 2022 (see Table 6 and Table 7). Updated and new survey responses provided examples of steps taken to support implementation of the guideline, mostly in relation to staff training about ME/CFS, establishing learning networks and resources and clinical governance structures to monitor practice. That health care professionals from a variety of disciplines have the right training and experience to assess, diagnose, treat and manage ME/CFS is a core part of the NICE guideline.

However, as with the previous iteration of the survey in 2022, NHS Boards responding in 2024 referenced outdated views about ME/CFS acting as a barrier to implementation of the guidelines. This is also a central theme of actions within the UK cross-government interim delivery plan for improving the experiences of people with ME/CFS. One NHS Board explained the guidelines’ size and complexity, and lack of translation to a Scottish context may be causal factors.

Overall, in 2024, NHS Boards reported a greater breadth of referrals for people with ME/CFS than in 2022 (see Table 5). Some NHS Boards recognised relationships had strengthened between NHS, third sector and community organisations partners delivering care. For example, NHS Dumfries and Galloway described new forms of support through volunteer and fitness programmes, as well as stronger links with Dieticians and Mental Health Nurses. In NHS Greater Glasgow and Clyde, new interventions to promote psychological, emotional and social wellbeing and new lifestyle management courses were mentioned. NHS Lanarkshire noted recent developments in wearable technology for self-monitoring and symptom management. In addition, in NHS Tayside, the long COVID pathway that was described as 'no longer operational' in 2022, was described as rehabilitation services 'embedded in community teams'. This service landscape aligns well with advice surrounding symptom management in the NICE guidelines which recommend a coordinated multidisciplinary approach.

There continues to be a persistent gap between NICE recommendations surrounding access to a specific ME/CFS specialist service, or a ME/CFS specialist team. Only two NHS Boards reported a specific ME/CFS pathway for patients in their area, of which one was active. An additional four NHS Boards referred to staff with training in ME/CFS as the primary service offered to people with ME/CFS. This means that access to specialist expertise for people with ME/CFS varies across NHS Boards, and is likely to have a direct impact on provision for people with severe or very severe ME/CFS symptoms. Few details on other aspects of the NICE guidelines were provided in responses, such as transitions for young people moving into adult services, and managing flare ups in symptoms, therefore there is a limited picture of implementation in these areas. That only three NHS Boards reported to have access to patient feedback or outcome data about the experiences of people with ME/CFS highlights a gap in broader understanding of how service provision or pathways are impacting outcomes for people with ME/CFS.

6.3 Delivering services for people with severe or very severe ME/CFS

While most NHS Boards described offering the option of phone or video consultations and interventions (see Table 4), 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.

Despite these challenges, NHS Boards reported that online or digital platforms have improved access to support for people with ME/CFS over time by reducing the need to travel to outpatient appointments. Online resources, flexible appointment times, offering classes at different times of day and keeping in touch remotely were also identified as flexible forms of support in place in some NHS Boards for people with more severe presentations of ME/CFS. These align with the NICE recommendation that “service providers should be proactive and flexible in delivering services to people with severe or very severe ME/CFS, who may have particular difficulty accessing services and articulating their needs”.

6.4 Resourcing and referrals

There were several examples of new resource assigned to provide support for people with ME/CFS. Recent fixed-term posts established in NHS Lothian and NHS Greater Glasgow and Clyde highlighted a growing recognition of the role of Occupational Therapy to enhance support for people with ME/CFS in work, education and training. In addition, there were examples of cross-sector collaboration, for example, clinicians working alongside Action for ME in NHS Ayrshire and Arran, to create educational resources and improve knowledge and understanding about ME/CFS.

As in 2022, funding constraints on service development was a key theme of responses (see Table 8), with more than half of NHS Boards mentioned finances as a constraint in 2024. These were described in a relation to a constraint on developing a specialist service, on augmenting services, and on improving local training. Limited capacity for training (i.e. time to release staff for training) was raised by two NHS Boards as a resource-related factor. A high volume of referrals was described by two specialist services and NHS Boards described drawing on core-funded or generalist services to cope with these constraints. This echoes findings from the 2023 BACME National Services Survey which finds that some ME/CFS specialist services in the rest of the UK have experienced a significant increase in referral numbers, which has not always been met with extra funding or staffing.