Understanding Fibromyalgia

Healthwatch West Sussex conducted a survey in spring 2026 to better understand the experiences of people living with fibromyalgia, particularly their access to health, wellbeing and community services. Forty-two people responded, with 90% reporting that they lived with fibromyalgia. Most respondents were from the Horsham, Worthing, Crawley and Chichester areas. 

The survey found that obtaining a diagnosis was often a lengthy and difficult process. While 77% of respondents had received a fibromyalgia diagnosis, more than half reported waiting up to five years for a diagnosis and 38% waited between five and ten years. Many participants felt unsupported during the diagnostic process and said they needed clearer information and greater understanding from healthcare professionals.

Respondents generally spoke positively about support received from GPs, pain management services, musculoskeletal (MSK) services and physiotherapy. However, mental health support was frequently identified as inadequate, with some people feeling that there was little ongoing support available after diagnosis.

A common theme was the need for better awareness and knowledge of fibromyalgia among healthcare professionals. Respondents wanted clinicians to spend more time explaining the condition, listening to patients and providing consistent advice. Some reported frustration at receiving conflicting opinions from different healthcare providers and having to repeatedly explain their medical history. 

People also highlighted the need for improved access to reliable information, practical advice and ongoing support. Suggestions included greater use of social prescribing, peer support groups, regular check-ins from primary care services, and clearer guidance on self-management approaches such as hydrotherapy, meditation, acceptance therapy and pain management techniques.

Many respondents described difficulties accessing benefits, housing support and social care. Some felt that existing benefit systems do not adequately recognise fluctuating conditions such as fibromyalgia and wanted more assistance with navigating applications and support services. 

The report found that people living with fibromyalgia often experienced a lack of coordinated and joined-up care. Participants called for more compassionate, informed and consistent support from health and social care services to help improve their quality of life and wellbeing.

Healthwatch West Sussex recommended improving professional awareness and training, providing clearer information and signposting, exploring improvements to mental health support, mapping existing local support services, and using the findings to inform discussions with healthcare commissioners, providers and community organisations.

Overall, the report concludes that people living with fibromyalgia want better understanding from healthcare professionals, more practical and emotional support, easier access to information and services, and a more coordinated approach to managing their condition.