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UK healthcare services for people with fibromyalgia survey results

Abstract – UK healthcare services for people with fibromyalgia: results from two web-based national surveys (the PACFiND study)

Background

The UK’s “Getting It Right First Time” programme recommends that management of people with fibromyalgia should centre on primary care. However, it remains unclear as to how best to organise health systems to deliver services to optimise patient outcomes.

Aim
To profile UK healthcare services for people with fibromyalgia: provision of National Health Services (NHS) and use of non-NHS services by people with fibromyalgia.

Methods
Two online open surveys (A and B) incorporating questions about diagnosis, treatment and management of fibromyalgia and gaps in healthcare services were conducted between 11th September 2019 and 3rd February 2020. These were targeted to NHS healthcare professionals consulting with people with fibromyalgia (Survey A) and people ≥16 years diagnosed with fibromyalgia using non-NHS services to manage their condition (Survey B). Descriptive statistics were used to report quantitative data. Thematic analysis was undertaken for qualitative data.

Results
Survey A received 1701 responses from NHS healthcare professionals across the UK. Survey B received 549 responses from people with fibromyalgia. The results show that NHS services for people with fibromyalgia are highly disparate, with few professionals reporting care pathways in their localities. Diagnosing fibromyalgia is variable among NHS healthcare professionals and education and pharmacotherapy are mainstays of NHS treatment and management. The greatest perceived unmet need in healthcare for people with fibromyalgia is a lack of available services. From the pooled qualitative data, three themes were developed: ‘a troublesome label’, ‘a heavy burden’ and ‘a low priority’. Through the concept of candidacy, these themes provide insight into limited access to healthcare for people with fibromyalgia in the UK.

Conclusion
This study highlights problems across the NHS in service provision and access for people with fibromyalgia, including several issues less commonly discussed; potential bias towards people with self-diagnosed fibromyalgia, challenges facing general practitioners seeking involvement of secondary care services for people with fibromyalgia, and a lack of mental health and multidisciplinary holistic services to support those affected. The need for new models of primary and community care that offer timely diagnosis, interventions to support self-management with access to specialist services if needed, is paramount.

MEA Comment

Dr Charles Shepherd, Honorary Medical Adviser to the ME Association comments:

“These are the results from what is probably the largest ever UK survey of health professionals' attitudes to fibromyalgia (FM) along with the treatments and services that the NHS provides (or should be providing) for people with FM

“NHS website information on FM can be found here

“There is clearly a lot of clinical overlap between FM and ME/CFS and some people with ME/CFS have what I think is best described as a fibromyalgic component to their ME/CFS

“MEA information leaflet on FM and ME/CFS:

“When it comes to treatment for FM, exercise programmes are often recommended and there is a resistance from some health professionals to use prescription-only pain killers.

“Finally, it is strange to find that there still isn’t a NICE guideline on fibromyalgia.”

Dr Charles Shepherd
Trustee and Honorary Medical Adviser
(Member of The NICE Guideline Committee on ME/CFS (2019 – 2021) and The DHSC Research Working Group (2022-23)

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