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

7. Key Findings and Conclusion

The objective of this report is to understand current ME/CFS service provision, the awareness and implementation of the updated NICE guidelines, barriers and opportunities to their implementation, and where further support is needed. The key barriers to implementing the NICE guidelines were around resources, challenging views that do not align with NICE guidelines, and concerns about how the new guidelines would be implemented consistently across Scotland. Despite these barriers, the NHS Boards that participated in this survey anticipated that the new guidelines would provide improved knowledge to support people with ME/CFS and empower people with ME/CFS about living with and manging the condition: potentially challenging some of the barriers stemming from outdated views of this condition.

In addition, NHS Boards highlighted that the new guidelines would provide improved outcomes for other long-term condition management as well as strengthen links with third sector organisations and public health strategies: potentially providing a collaborative approach to ensure a consistent and equitable implementation of ME/CFS support across Scotland. The responses to this survey and the previous stakeholder consultation review suggest that enhancing or establishing ME/CFS care in Scotland requires knowledge sharing among staff and people with ME/CFS to ensure that a care pathway is informed from both a clinical and lived experience perspective. This would have the potential to dispel outdated views that may shape the care received for this condition and create a guide for best practice to reference across Scotland.

Based on the results of this survey and taking into consideration the consultation review, this concluding section highlights four key findings from this survey that require further investigation (Figure 2) to identify the most effective services or pathways for providing ME/CFS care.

Further investigation is required to fully understand whether specialist provision for ME/CFS is the most effective service approach compared with integration of ME/CFS support into other long-term condition management pathways. The results of this survey highlight that long-term condition pathways of support are already being used for people with ME/CFS where no specialist service or specific ME/CFS pathway exists. It would be key to understand whether this type of integrated support pathway should be developed further or whether establishing a stand-alone specialist ME/CFS support service or specific pathway would be more preferrable for local services. This work would require engagement and consultation with NHS Boards, as well as patient representatives, to understand local preferences and transfer learning to a national level.

Linked to the question of whether specialist or integrated pathways are preferred, responses to this survey show that some people with ME/CFS receive support through individual staff and others through multi-disciplinary care. In some cases, where there is one specialised nurse or practitioner available to people with ME/CFS, there are still subsequent referrals to other staff members or third sector organisations who can provide support for specific symptoms or long-term condition management. NHS Boards who responded to this survey reflected on the significant benefits for patients and staff if ME/CFS was integrated formally into these pathways or a multi-disciplinary team was made available to provide care, although this may be reflective of the lack of a ME/CFS specialist service. The support for MDTs builds on the results of the stakeholder review, where stakeholders indicated a preference that ME/CFS support should be delivered through a specialist community-based service which includes a "network of different specialisms." Further investigation is required to ascertain whether strengthening existing multi-disciplinary approaches utilised by some NHS Boards or training staff to provide ME/CFS specialist care would be the best way to provide support. Equally, as provision of services is dependent on staff availability, funding, and training opportunities, it would be key to understand whether these two types of support, specialist staff or MDTs, differ depending on local resources. For some NHS Boards, financial and resourcing issues emerged as a barrier to the implementation of the NICE guidelines as well as establishing a specific ME/CFS support pathway. Where barriers around establishing ME/CFS specific support may exist for financial or resourcing reasons, the potential to utilise existing long-term management pathways may be a viable alternative to specialist services. Further insight is required from NHS Boards to ascertain the benefits or limitations of specialist or integrated pathways for ME/CFS service development.

NHS Boards in this survey have indicated a desire to build education and research programmes for current and future clinical staff, which would decrease views and stigma surrounding ME/CFS that do not accord with current NICE guidelines, increase awareness, and potentially increase the intent to train in ME/CFS as a speciality. The stakeholder review also suggests forming a specialist national or regional centre for research and care by clinicians to increase understanding about the management and treatment of ME/CFS.

Due to MDTs and long-term condition pathways providing the majority of support in Scotland at present, it may not be possible for individual services to gather comprehensive patient feedback about their experiences, yet responses to this survey highlighted how patient and carer feedback have informed programmes of support. The stakeholder review not only provided a means by which to gather a wide range of lived experience but also emphasised the importance of feedback surveys, highlighting that they are essential in the development of pathways and reviewing care for patients. In this context, commissioning further engagement to gather feedback from patients across Scotland would be the best method to capture views on the most effective pathway and delivery of support from a patient perspective in the future.

Given resource constraints and funding pressures highlighted in this survey of NHS Boards, the implementation of these key findings may be dependent on an increase in the availability of resources at local and national levels.