A recent study by the University of Aberdeen underscores the urgent need for reform in fibromyalgia care across the UK. The PACFiND (Patient-centered Care for Fibromyalgia: New pathway Design) project, led by Professor Gary Macfarlane and Dr. Rosemary Hollick, has identified significant barriers faced by patients in receiving timely and effective treatment for this complex condition.
Fibromyalgia, characterized by widespread pain, fatigue, and cognitive difficulties, affects approximately 1 in 50 individuals. The PACFiND project surveyed over 2,700 patients and health care professionals and analyzed health data from nearly 100,000 people. The findings reveal that many patients endure prolonged waits—often up to three years—before they receive an accurate diagnosis. Alarmingly, only about one in four individuals in the UK with fibromyalgia are diagnosed.
The research highlights a troubling “revolving door” effect for patients, who frequently navigate a maze of appointments, referrals, and unnecessary tests. This situation is compounded by what researchers describe as “postcode lotteries,” where access to care varies dramatically depending on geographical location. Many healthcare professionals express a lack of confidence in diagnosing fibromyalgia, leading to inconsistent treatment and support.
Key Findings and Recommendations
The PACFiND team has developed a set of principles aimed at improving care pathways for fibromyalgia patients. Their toolkit, which will be available in early 2026, aims to provide practical guidance for policymakers, clinicians, and patient advocacy groups. As Professor Macfarlane notes, “Many people with fibromyalgia face long waits for recognition and inconsistent access to care. By focusing on earlier diagnosis and patient-centered pathways, we can make care more consistent, reduce inefficiencies, and provide better support across the NHS.”
The study also stresses the importance of validating patient experiences. Dr. Lucy Donaldson, Director of Research at Arthritis UK, points out that while the causes of fibromyalgia remain poorly understood, it is often associated with conditions such as rheumatoid arthritis. The validation that comes with a diagnosis can significantly impact patients’ well-being. A recent report indicated that more than 62% of individuals with arthritis felt that receiving a diagnosis validated their experiences.
The Broader Impact of Fibromyalgia
The burden of fibromyalgia extends beyond physical symptoms, often impacting individuals’ ability to work or pursue education. Dr. Rosemary Hollick emphasized that the cumulative effect of fatigue, pain, and cognitive difficulties can disrupt career development, particularly among younger adults. She stated, “This not only takes a toll on patients but also places unnecessary strain on health services. By providing more effective, supportive care, we can reduce unnecessary investigations, improve quality of life, and help people stay active and at work.”
These findings from the PACFiND project are crucial for reshaping how fibromyalgia is understood and treated within the healthcare system. The initiative aims to ensure that patients feel heard and supported throughout their healthcare journey.
For more information, visit the University of Aberdeen research project page at www.abdn.ac.uk/achds/research/projects/pacfind/.
