Redesigning fibromyalgia care: insights from ethnographic case studies of UK services

Objectives Fibromyalgia is associated with substantial burden for individuals and healthcare systems, yet care remains fragmented and inconsistent. Experiences of not being believed are common and contribute to delays in diagnosis, repeated consultations, and poor outcomes. There is limited evidence on how care should be organised and delivered. We sought to identify and characterise how those features of care valued by people with fibromyalgia are enacted across diverse UK services. Methods We conducted multi-site ethnographic case studies of services providing care for people with fibromyalgia across England, Scotland and Wales. Services were purposively sampled from various settings as identified through prior surveys, professional networks and stakeholder input. Data included observations, documentary analysis, and staff interviews, and were analysed thematically to identify shared features of care. Results 12 cases were studied, comprising approximately 200 hours of observation, 59 interviews and documentary analysis. Across diverse service models, common features included innovative approaches to multi-disciplinary team service delivery, underpinned by a holistic biopsychosocial ethos with a strong emphasis on validating patients’ experiences. Key aspects were relationship-based care, coaching to support self-management, continuity of care, opportunities for peer support. Validation appeared to enable engagement with care and support behaviour change. Conclusion These findings shift the focus from specific interventions to the organisation and delivery of care as key determinants of effective fibromyalgia management. By identifying how services can support validation, engagement and continuity, this work provides a practical foundation for co-designed principles of care to inform the development of more consistent, patient-centred services.