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

This report analyses survey responses from ten NHS Health Boards in Scotland to understand delivery of ME/CFS services, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development.

4. Methodology

A scoping, qualitative survey was issued to Medical Directors in 14 territorial NHS Boards on 3 October 2022. The deadline for returns was extended to 30 November 2022 to maximise the response rate. Eleven responses were returned from ten NHS Boards. However, NHS Dumfries and Galloway Allied Health Professionals and the Clinical Health Psychology Service filled out two separate responses; so, in some instances, when referring to the overall position of this NHS Board, these two responses were combined. Responses from the ten participating NHS Boards are set out below in order to map health service provision across Scotland as at Autumn 2022.

NHS Boards were asked questions about local services available for people with ME/CFS in their area, implementation of the NICE guidelines, future plans for providing ME/CFS services, and any additional information they would like to share. The full questionnaire can be found in Appendix One.

Scottish Government social researchers analysed the survey responses and authored this report. The free-text responses were analysed using a qualitative thematic approach in Microsoft Excel. Excel was chosen as preferred method due to the manageable number of responses received. The information was coded to match emerging themes and then grouped together for the discussion of results, below.

4.1 Limitations

The returns provided by NHS Boards who participated in this survey provide a snapshot of services for people with ME/CFS that were in place or planned as at Autumn 2022. The analysis therefore does not capture any developments in services or support that have occurred since October 2022.

As it was optional to take part in this survey, the results do not provide a complete picture of the support and services offered to people with ME/CFS throughout Scotland. Some NHS Boards, for example NHS Lothian, did not respond despite having a specific ME/CFS support pathway (as reflected in a mapping of ME/CFS services in the UK by the British Association of Clinicians in ME/CFS). In addition, as referenced in the results section below, not all NHS Health Boards that responded to this survey answered all questions.

It must also be noted that responses or non-responses may have been impacted by the resources available to complete the survey given the ongoing and consistent nature of the pressure and demand facing NHS services in 2022.



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