A comprehensive survey conducted by the University of Aberdeen has highlighted significant shortcomings in the care provided for individuals with fibromyalgia. The findings reveal that many patients experience long waits for diagnoses, inconsistent access to care, and a general lack of understanding about the condition among healthcare professionals. This study, part of the Patient-centered Care for Fibromyalgia: New pathway Design (PACFiND) project, underscores the urgent need for reform in fibromyalgia services across the UK.
Led by Professor Gary Macfarlane and Dr. Rosemary Hollick, the PACFiND team surveyed over 2,700 patients and healthcare professionals and analyzed health data from nearly 100,000 people. They gathered insights through interviews, workshops, and surveys, constructing a detailed view of the challenges faced by those living with fibromyalgia. The research found that individuals typically wait around three years for a proper diagnosis, with only 25 percent of sufferers receiving one.
Fibromyalgia, characterized by widespread pain, fatigue, and cognitive difficulties such as brain fog, affects an estimated 1 in 50 people. The survey participants reported a “revolving door” of appointments, multiple referrals, and often unnecessary tests, leading to frustration and prolonged suffering. Furthermore, the analysis identified a troubling “postcode lottery” in access to services, resulting in inconsistent care across different regions of the UK.
Many primary care professionals expressed a lack of confidence in diagnosing fibromyalgia, with some holding views that were not helpful to patients. This uncertainty is compounded by the complexity of the condition, which remains poorly understood in the medical community.
To address these issues, the PACFiND project team has developed a set of principles for care, alongside a toolkit designed to provide practical guidance for policymakers, clinicians, and patient groups. This toolkit is set to be released in early 2026, aiming to implement suggested improvements based on the research findings.
Professor Macfarlane emphasized the importance of these developments, stating, “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-centered 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, noted that while the causes of fibromyalgia are not fully understood, there is a clear association with other conditions, such as rheumatoid arthritis. She highlighted the significance of timely and accurate diagnoses, stating, “More than 6 in 10 people (62%) said the greatest perceived benefit of diagnosis was the validation of their experience.”
The findings from the PACFiND study, along with similar research, could play a crucial role in improving the diagnosis and support available for those with fibromyalgia and related conditions. Dr. 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.”
The impact of fibromyalgia extends beyond health, affecting individuals’ ability to work and study, particularly for younger adults. By implementing more effective pathways for care, the research aims to enhance the quality of life for these individuals, enabling them to remain active in their personal and professional lives.
For more information on the PACFiND project and its findings, visit the University of Aberdeen website.
