Epi Group's Patient-centred Care for Fibromyalgia: New pathway Design (PACFiND) analysis of the state of care in the UK for fibromyalgia patients identifies multiple failings of current systems, and set to publish practical guidance to improve care
Fibromyalgia is a disorder of pain processing which is characterised by widespread pain, fatigue and other symptoms including brain fog and memory lapses. It affects around 1 in 50 people, but getting a diagnosis can be difficult and in the UK, and it is estimated that only 1 in 4 people receive a diagnosis, following a wait of around 3 years.
People frequently waiting years to be ‘taken seriously’, postcode lotteries for access to care and a general lack of knowledge are among some of the key findings from a University of Aberdeen investigation into fibromyalgia care.
Led by Epi Group members Professor Gary Macfarlane and Dr Rosemary Hollick, the PACFiND team brought together an extensive body of evidence. We surveyed more than 2,700 patients and healthcare professionals, analysed healthcare data from nearly 100,000 people, spoke with individuals living with fibromyalgia, and examined services across the UK. Through interviews, surveys and workshops, we have now built a detailed picture of people’s experiences and used this to design more effective, supportive health and work pathways.
Through complex data analysis, we identified several key issues that people living with fibromyalgia experience. One of the prevailing problems is with initial diagnosis with people typically waiting years for ‘recognition’ of their symptoms. They often described a ‘revolving door’ of appointments with different health services, multiple referrals and ‘unnecessary tests.’ We found a substantial variation in services and inconsistent access to care across the UK, with “postcode lotteries” leaving many unsupported. Many primary care healthcare professionals do not feel confident making a diagnosis, while others reportedly hold ‘unhelpful views’ about the condition.
Based on these findings, the PACFiND team have now developed principles for care and a toolkit will be available early in 2026 to provide practical guidance for policymakers, clinicians, and patient groups to implement their suggested improvements.
Professor Macfarlane explains: “Many people with fibromyalgia face long waits for recognition and inconsistent access to care.
“Our work shows these challenges are widespread and often compounded by uncertainty among healthcare professionals.
“By focusing on earlier diagnosis and patient‑centred pathways, we can make care more consistent, reduce inefficiencies, and provide better support across the NHS.”
Dr Lucy Donaldson, Director of Research at Arthritis UK, said: “We still don’t fully understand the causes of fibromyalgia, but what we do know is that rheumatoid arthritis and axial spondylarthritis are often associated with fibromyalgia. It is important that people living with arthritis, daily pain and fatigue receive a timely and accurate diagnosis. That is why we are proud to have funded Professor Macfarlane’s and Dr Hollick’s work which will help transform services to enable people to get a timely diagnosis and access to the right treatment.
“Importantly too, the findings of this research will help people feel heard and seen. We know from our recently published report into the lived experience of almost 8,000 people living with arthritis in the UK the clear value of a diagnosis. We found that more than 6 in 10 people (62%) said the greatest perceived benefit of diagnosis was the validation of their experience. Findings from the PACFiND study, and others like it, need to be implemented to improve diagnosis and support for people with arthritis and fibromyalgia.”
Dr Rosemary Hollick added: “People with fibromyalgia often face years of appointments, repeated tests, and prescriptions for medications that may do more harm than good. This not only takes a toll on patients but also places unnecessary strain on health services.
“Fatigue, pain, and brain fog can also make it hard for people to work or study, disrupting education and career development, particularly for younger adults.
“By providing more effective, supportive care we can reduce unnecessary investigations, improve quality of life, and help people stay active and in work.”
Debs Dulake, one of our key patient partners who helped shape the research under PACFiND, gave her thoughts on being involved with the study:
“Working on PACFiND has been educational, confidence building and inclusive, and working with the whole team which has led to further opportunities to get involved with other research. It even led me to returning to work - only for 12 hrs a week, working from home, but a massive step. I found out more about fibromyalgia from this research, discovering that there were many others like me, and I was no longer alone. The team became my friends, and they championed me throughout the project. Our relationship was symbiotic and all verbalised that they had also learnt from me. I will always say that my experience was the 'gold standard' of involving patients in research and I am so privileged to have been along for the journey.”