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

Nicky Wilson* (Corresponding Author), Marcus Beasley, Catherine Pope, Debra Dulake, Laura Moir, Rosemary Hollick, Gary Macfarlane

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

5 Citations (Scopus)
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Abstract

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.

Original languageEnglish
Pages (from-to)989
Number of pages18
JournalBMC Health Services Research
Volume22
Issue number1
Early online date3 Aug 2022
DOIs
Publication statusPublished - 3 Aug 2022

Bibliographical note

Funding
The PACFiND programme of work is funded by Versus Arthritis (Grant No. 21958).
Acknowledgements
We are grateful for the input of Fibromyalgia Action UK to this programme of work and for patient partner Simon Stones. The authors do not report any conflict of interest. The PACFiND study investigators are (in addition to authors NW, CP, RJH, GJM): Professor Corri Black, Professor Gareth T Jones, Professor Louise Locock, Dr Sara J MacLennan, Professor Paul McNamee, Dr Kathyrn R. Martin, Dr Peter Murchie (all University of Aberdeen), Professor Sue Ziebland (University of Oxford), Professor Karen Walker-Bone (University of Southampton), Professor Chris Eccleston (University of Bath), Professor Ernest Choy (Cardiff University), Professor David A. Williams (University of Michigan), Professor Neil Basu (University of Glasgow).

Keywords

  • Fibromyalgia/diagnosis
  • General Practitioners
  • Health Services Accessibility
  • Humans
  • Internet
  • United Kingdom
  • Fibromyalgia
  • Health services
  • UK
  • Candidacy

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