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

6. Discussion

Overall, provision of support across the ten NHS Boards that responded to this survey was varied from generalist to specialist support by staff trained in ME/CFS. More than half of these NHS Boards 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 GET and CBT. Despite this awareness, implementation of the guidelines was varied due to limited resources, lack of specific pathways or trained ME/CFS staff to support implementation. Additionally, implementation was varied due to the referral 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 a willingness from NHS Boards to develop ME/CFS specialised treatment and support, yet there is an acknowledgement that this might not be realised due to the potential barriers. Below are some of the specific themes that relate to the barriers and opportunities of developing ME/CFS specific pathways in Scotland summarised from the results of this survey.

6.1 Views that do not align with NICE guidelines

Outdated views impacting the uptake of Scottish guidance around ME/CFS support was found to be a barrier. Some NHS Boards highlighted that the barriers to implementation of the NICE guidelines were related to views about treating ME/CFS that did not reflect its status as a neurological condition (lack of knowledge development and education opportunities, discrediting treatment options, potential for patients not engaging due to stigma, or acknowledging the impact that ME/CFS can have on everyday life). As reported in the stakeholder consultation review, clinicians felt that the changes in guidelines left some confusion about what were appropriate treatment options for people with ME/CFS, which may be due to the referenced 'traditional' views of this condition. This perspective was reflected in the response of one NHS Board that participated in the current survey, suggesting that such outdated views may result in a lack of support to set up services.

NHS Boards in this survey also expressed a concern that the uptake of the new guidelines across Scotland might be slow and lead to some confusion about appropriate treatment due to variation. Worries around communication of guidelines across Scotland was also emphasised in the stakeholder consultation review, which highlighted that some clinicians may continue to recommend support that does not reflect current NICE guidelines while there is not an established infrastructure of ME/CFS care. The review also highlighted that pressure on time and resources might result in varied uptake of new guidance across Scotland, a concern which was raised similarly throughout the survey responses discussed in this report.

Despite these barriers, some NHS Boards believed that the changes to NICE guidelines would challenge previous perceptions and result in positive opportunities for Scotland's future ME/CFS support pathways. The opportunities mentioned included improvement of treatment and symptom management, improved outcomes for patients with long-term conditions more generally, education of staff around awareness of this condition, collaboration and increased coordination from MDT staff, increased patient engagement and feedback through reduction of stigma, and strengthened links to third sector ME/CFS/long-term condition management organisations or pathways. These opportunities were echoed in the stakeholder consultation review, where people were pleased with the potential to validate and recognise the condition as neurological rather than psychosomatic, increase education and training, and develop specialist services for people with ME/CFS. It was suggested that views which do not reflect the NICE guidelines may be a potential barrier for patients, which may dissolve with the increased positive attention and uptake of specialist support for this neurological condition.

6.2 Multi-disciplinary care and knowledge sharing

Support for ME/CFS in Scotland was provided by a range of staff members across multiple disciplines and organisations, which reflects the complexity of this condition where symptoms may require the knowledge and support from a multi-disciplinary team. The stakeholder consultation review highlighted that lack of capacity has a wider impact on care due to limited resources, waiting times, and increased caseloads. In addition to the benefits of multi-disciplinary support available, knowledge sharing across areas was highlighted in the analysis of this survey as a potential opportunity gained from implementing the NICE guideline changes to ensure that people with ME/CFS are receiving well-rounded expert care. This view is echoed in the stakeholder consultation review, where the work of the specialist nurse in Fife, the services in NHS Greater Glasgow and Clyde and NHS Lothian, and third sector organisations are considered to be good examples of ME/CFS support and care. Responses in the stakeholder consultation review showed an encouragement for peer practice-based learning and utilising existing systems to access a variety of support materials, echoing the responses from some NHS Boards involved in this survey.

The shared reflection provided by NHS Boards shows encouraging support for education and research in ME/CFS across Scotland to develop a better understanding of support and treatment options among current and future clinical staff. The stakeholder consultation review echoes this desire through their suggestion to build a "robust education programme" so that clinicians can confidently "diagnose ME/CFS and identify an appropriate management and care plan" as well as including this in the curriculum for the next generations coming out of medical schools.

6.3 Incorporating lived experience and patient feedback

As many people with ME/CFS are treated by multi-disciplinary teams or outsourced third sector organisations, it may also be a challenge to gather and incorporate patient feedback from one source where a specific pathway or centre does not exist. Only three NHS Boards reported measuring outcomes or gathering feedback from patients. NHS Greater Glasgow and Clyde reported using patient feedback to inform patient-centred care approaches, highlighting the benefits of patient-led care in managing their condition. This may be reflective of the fact that not all NHS Boards have specific ME/CFS pathways, support may only exist through staff with limited time to gather feedback, or people with ME/CFS are treated through multiple routes (meaning gathering feedback via one local service becomes challenging). The responses to this survey and the stakeholder consultation review consultation highlighted that patient empowerment, engagement, and de-stigmatising ME/CFS were potential opportunities from implementing the NICE guidelines, which may be better supported by the incorporation of lived experience and strengthening patient feedback opportunities.

6.4 Integrated pathways for long-term conditions

Some NHS Boards supported the approach to utilise pathways for other long-term conditions to support people with ME/CFS, especially long-term conditions where symptoms overlap. It became evident through the responses that, in some NHS Boards, people with ME/CFS are already being supported through these other pathways where there is no specific ME/CFS service. The potential to connect ME/CFS support to an established long-term condition management or other mainstream service, as highlighted in this survey analysis, was also supported by the consultation review.

6.5 Future intentions for ME/CFS services

Seven of the NHS Boards did not provide a response to the question about future intentions to create a specialist service for people with ME/CFS, which may be linked to the responses about barriers around implementation or specific support. This suggests the need for further engagement with NHS Boards to discuss how ME/CFS services and pathways can be developed further.