A comprehensive survey by the University of Aberdeen highlights significant gaps in the care and diagnosis of fibromyalgia, a chronic condition characterized by widespread pain and fatigue. The findings, part of the Patient-centered Care for Fibromyalgia: New pathway Design (PACFiND) project, indicate that many individuals face long delays in receiving proper recognition and treatment for their symptoms.
Led by Professor Gary Macfarlane and Dr. Rosemary Hollick, the PACFiND team conducted extensive research involving over 2,700 patients and health care professionals, alongside an analysis of health care data from nearly 100,000 individuals. Their investigation aimed to identify the barriers faced by those living with fibromyalgia in the UK, where it is estimated that only 1 in 4 affected individuals receive a diagnosis after an average wait of three years.
The study revealed that many patients experience a “revolving door” of appointments across various health services, leading to multiple referrals and unnecessary tests. This variability in access to care, often referred to as “postcode lotteries,” leaves many without the necessary support. The research also found that primary care professionals frequently lack confidence in diagnosing fibromyalgia, which contributes to a culture of misunderstanding surrounding the condition.
Key Findings and Recommendations
The PACFiND project uncovered crucial insights into the patient experience, emphasizing the urgent need for reform. Professor Macfarlane noted, “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.” The findings advocate for a shift towards earlier diagnosis and patient-centered treatment pathways to enhance care consistency and efficiency.
In response to the survey results, the research team is developing a toolkit set to be released in early 2026. This toolkit will provide practical guidance for policymakers, clinicians, and patient groups, outlining strategies for implementing the recommended improvements in fibromyalgia care.
Dr. Lucy Donaldson, Director of Research at Arthritis UK, emphasized the importance of timely diagnoses, stating that conditions such as rheumatoid arthritis and axial spondylarthritis often intersect with fibromyalgia. She mentioned, “The findings of this research will help people feel heard and seen,” pointing to a previous report where over 62% of respondents noted the validation of their experience as a key benefit of receiving a diagnosis.
Impact on Patients and Health Services
The current challenges not only affect patients but also place a burden on health services, as individuals undergo repeated tests and appointments. Dr. Hollick remarked, “People with fibromyalgia often face years of appointments, repeated tests, and prescriptions for medications that may do more harm than good.” Such inefficiencies disrupt patients’ education and career prospects, particularly affecting younger adults who struggle to manage their condition while pursuing their goals.
Improving care pathways could lead to better quality of life for those living with fibromyalgia, enabling them to remain active and engaged in work and study. The PACFiND project aims to change the narrative around fibromyalgia care, creating a more supportive framework for those affected.
As the toolkit’s release approaches, the hope is that these findings will pave the way for a more informed and compassionate approach to fibromyalgia care, ultimately benefiting the thousands who live with this often-misunderstood condition.
For further information about the PACFiND project, visit the University of Aberdeen’s dedicated webpage: www.abdn.ac.uk/achds/research/projects/pacfind/.
