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.


9. Appendix One: Questionnaire

The below is the questionnaire sent out to all NHS Health Boards in Scotland.

1. Health board area?

2. What support is being provided to people with ME/ CFS in your area?

You may wish to comment on:

  • General and specialist services
  • Primary and secondary care
  • Services for children and young people, and adults
  • Services for those with mild, moderate or severe symptoms
  • Therapeutic interventions

3. How is support being delivered?

4. What staff or volunteers provide support to people with ME/ CFS in your local area?

5. How are individuals in need of support identified?

6. To which services are people with ME/ CFS referred to?

7 (i). How would you describe your awareness of the key changes within the NICE guideline on Graded Exercise Therapy?

(ii). How would you describe your awareness of the key changes within the NICE guideline on Cognitive Behavioural Therapy?

8. To what extent has your area started to implement the updated guideline?

You may wish to comment on particular aspects of the updated guideline, for example:

  • Training for health and social care staff
  • Access to ME/ CFS specialist teams
  • Provision of care for people with severe ME/ CFS
  • Availability of experts in secondary care to provide guidance to primary care
  • Referring children and young people with suspected ME/ CFS
  • Reviews of funding and capacity

9 (i). Are you provided with outcome data or patient feedback from services to understand the impact or experiences of people with ME/ CFS?

(ii). If yes,

What types of outcome data or patient feedback do services provide to you?

10 (i). Do you have plans for a specialist ME/ CFS service in your area?

(ii). If yes,

Where will the specialist the team be located, and who will be in this team?

11. What barriers do you anticipate in implementing the updated guideline?

12. What opportunities do you anticipate in implementing the updated guideline?

13. What are the potential synergies between a specialist ME/ CFS service and pathways for other long-term conditions, for example, Long COVID pathways?

14. Do you have any additional comments on current ME/ CFS services or future plans that you would like to share?

Contact

Email: socialresearch@gov.scot

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