The results from an autumn 2022 survey completed by ten (of fourteen) NHS Health Boards in Scotland was released by the Scottish Government on 16th May 2023. It aimes to understand delivery of ME/CFS services in Scotland, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development. In effect, it highlights the scale of work to be done.
The aims of the survey were to understand:
- current service provision,
- awareness of the updated NICE guidelines and how they have been implemented so far,
- barriers and opportunities to implementing the guidelines,
- where support is needed to embed the updated guidelines.
In summary, the results showed that
- 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 the 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 to long-term condition management pathways for other illnesses, such as Long COVID or chronic pain, as these often provided, in the words of the Report, 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 and Cognitive Behavioural Therapy.
- implementation of the 2021 NICE guideline varied across the Boards due to limited resources, lack of specific pathways or trained ME/CFS staff to support implementation.
Nonetheless, the authors of the Report were able to say that “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barriers to implementing the new NICE guidelines or developing an ME/CFS specific pathway included challenging outdated views and application of ME/CFS knowledge.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 areas were identified
- Specialist or integrated pathways.
- Individual or multi-disciplnary staff support
The areas to be studied to understand clinical, lived experience, and stakeholder perspectives on whether ME/CFS services should be delivered through a specialist pathway or whether support should be integrated into pathways for the management or treatment of other long-term conditions. In addition, to learn whether this support should be delivered by an individual staff member or via a multi-disciplinary team.
- Enhanced knowledge and research opportunities.
- Include lived experiences.
Results of the survey combined with the stakeholder consultation review show support for establishing further education and research opportunities in Scotland for people with ME/CFS. With delivery of pathways and education opportunities to 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.
The ME Association has launched a survey aiming to discover whether ME/CFS services round the UK are using the most up-to-date guidance from the National Institute of Health and Care Excellence (NICE) on how to manage the incurable illness. The ‘Count ME In’ survey questionnaire went live on 22nd May 2023.