A comprehensive survey conducted by the University of Aberdeen highlights significant shortcomings in the care provided to individuals with fibromyalgia. The findings reveal that patients often endure lengthy waits for diagnosis and face inconsistent access to treatment across the United Kingdom. The study, part of the Patient-centered Care for Fibromyalgia: New pathway Design (PACFiND) project, gathered insights from over 2,700 participants, including patients and healthcare professionals.
Led by Professor Gary Macfarlane and Dr. Rosemary Hollick, the PACFiND project analyzed health data from nearly 100,000 individuals. The research included interviews and workshops, offering a detailed perspective on the challenges faced by those living with fibromyalgia, a condition characterized by widespread pain, fatigue, and cognitive difficulties.
One of the most pressing issues identified was the prolonged duration patients experience while seeking a diagnosis. Many individuals reported waiting for an average of three years before receiving appropriate recognition of their symptoms. This lengthy process often results in a “revolving door” of appointments with various healthcare providers, leading to multiple referrals and unnecessary tests.
Key Findings on Access and Diagnosis
The study uncovered significant disparities in the availability of services, with variations in care often described as “postcode lotteries.” These inconsistencies leave many patients without adequate support, and many primary care professionals lack confidence in diagnosing fibromyalgia. Some healthcare providers reportedly hold “unhelpful views” regarding the condition, adding to the challenges faced by patients.
According to Professor Macfarlane, “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.” The PACFiND team aims to address these issues by focusing on earlier diagnosis and developing patient-centered pathways.
To facilitate improvements in fibromyalgia care, the PACFiND team is set to release a practical toolkit by March 2026. This resource will provide guidance for policymakers, clinicians, and patient groups to implement the recommended changes identified during the study.
Impact on Patients and Healthcare Services
The findings of the PACFiND project resonate with the broader community of individuals experiencing chronic pain conditions. Dr. Lucy Donaldson, Director of Research at Arthritis UK, emphasized the importance of timely and accurate diagnosis, especially for those living with arthritis, which is often associated with fibromyalgia. She stated, “We still don’t fully understand the causes of fibromyalgia, but it is crucial that people living with daily pain receive proper recognition of their condition.”
Research indicates that over 6 in 10 individuals (62%) believe that the most significant benefit of obtaining a diagnosis is the validation of their experiences. Dr. Donaldson highlighted that the insights from the PACFiND study may help improve the diagnosis and support structures for people facing fibromyalgia and related conditions.
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.” She noted that these challenges not only affect patients’ health and well-being but also impose an unnecessary burden on healthcare services.
The implications of inadequate care extend beyond health. Fatigue, pain, and cognitive difficulties can hinder individuals from working or studying, thereby disrupting education and career opportunities, particularly for younger adults. By advocating for more effective and supportive care, the PACFiND initiative aims to enhance quality of life and enable individuals to remain active in their work and education.
The PACFiND project underscores the urgent need for reforms in fibromyalgia care, with a commitment to improving diagnosis, treatment access, and overall patient support. More information about the project can be found at the University of Aberdeen’s dedicated page for the initiative.
