A recent investigation by the University of Aberdeen has revealed significant shortcomings in the care provided to individuals suffering from fibromyalgia, highlighting the urgent need for a comprehensive reevaluation of existing health services. The study, part of the Patient-centered Care for Fibromyalgia: New pathway Design (PACFiND) project, surveyed over 2,700 patients and health care professionals, analyzed data from nearly 100,000 individuals, and gathered insights from personal interviews and workshops.
The findings indicate that many patients endure prolonged waits—typically around three years—before receiving a diagnosis. This delay often leads to frustration and a sense of being disregarded by the healthcare system. The investigation also pointed out a troubling trend of “postcode lotteries,” where access to care varies widely depending on geographical location, leaving many patients without adequate support.
Fibromyalgia is characterized by widespread pain, fatigue, and cognitive symptoms such as brain fog. It is estimated that approximately 1 in 50 people are affected by this disorder. However, the study’s results suggest that only about one in four individuals actually receive a diagnosis, and many experience a “revolving door” of appointments and referrals that yield little progress.
One of the major challenges identified was the inconsistency in healthcare professionals’ confidence regarding fibromyalgia diagnoses. Some practitioners reportedly held “unhelpful views” about the condition, which can further complicate patients’ paths to appropriate care.
Proposed Solutions for Improved Care
Based on these insights, the PACFiND project team, led by Professor Gary Macfarlane and Dr. Rosemary Hollick, formulated a set of principles aimed at enhancing care pathways for fibromyalgia patients. A toolkit is scheduled for release in early 2026, designed to provide practical guidance for policymakers, clinicians, and patient advocacy groups.
Professor Macfarlane commented on the findings, 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 health care 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, emphasized the importance of timely and accurate diagnoses for individuals living with arthritis and fibromyalgia. She noted that their recent report highlighted the value of diagnosis, as more than 62% of participants indicated that validation of their experience was the greatest perceived benefit of receiving a diagnosis.
The Broader Impact on Patients
Dr. Hollick added that the lengthy process of obtaining a diagnosis often subjects patients to unnecessary tests and treatments that may not only fail to alleviate their symptoms but could also exacerbate their condition. This inefficiency not only affects patients’ quality of life but also places undue strain on health services.
With symptoms like fatigue and cognitive difficulties, individuals with fibromyalgia often struggle to maintain their educational and professional pursuits. Dr. Hollick emphasized the necessity of implementing more effective and supportive care strategies to enhance patients’ quality of life, enabling them to stay active and engaged in work or education.
The PACFiND project serves as a crucial step toward improving the landscape of fibromyalgia care in the UK. As the toolkit becomes available, it is anticipated that healthcare professionals and policymakers will be better equipped to address the unique challenges faced by those living with fibromyalgia.
For more information, visit the PACFiND project at the University of Aberdeen: www.abdn.ac.uk/achds/research/projects/pacfind/
