‘I Want to Live My Life’: Fibromyalgia Sufferers Say NHS Systematically Fails Them
Aberdeen, Scotland – A new UK-wide study reveals a systemic failure in the diagnosis and care of fibromyalgia patients within the national Health Service (NHS), leaving manny feeling dismissed, misdiagnosed, and reliant on ineffective pain medication. The research, led by Professor Gary Macfarlane of Aberdeen University, highlights a critical lack of consistent care pathways and widespread skepticism among clinicians regarding the legitimacy of the chronic pain condition.
The study found diagnosis is frequently enough substantially delayed, especially for men, and post-diagnosis support is severely limited. Patients frequently experience a frustrating “revolving door” of referrals between pain, gastroenterology, and surgical specialties, incurring significant personal costs and negatively impacting their ability to work.
Adele, a fibromyalgia sufferer, recounted her own arduous journey, ultimately requiring a private diagnosis after years of unanswered questions. “The diagnosis was a relief but as then it’s been a case of there is no care pathway. You are told it’s definitely fibromyalgia you have – here are some pain killers,” she said.
Despite patients expressing a preference for personalised, holistic, and non-drug support, medication remains the default treatment approach. Professor Macfarlane warns the current situation represents only the beginning of the challenge.”We are really only in the changing room of the race,” he stated. “Patients are not getting the early diagnosis and thay don’t have access to effective care. Instead they are being given painkillers that are only marginally effective and can have side effects.”
The research also uncovered concerning attitudes among some healthcare professionals. “A lot of clinicians have very unhelpful attitudes, many actually not believing that the condition exists, so patients will never get the diagnosis, and saying that patients are just distressed or lazy, or are making up symptoms,” Professor Macfarlane added.
Fibromyalgia is a long-term condition causing widespread pain and fatigue. While its cause is unknown, it’s believed to affect around 2-4% of the population. The study’s findings underscore the urgent need for improved awareness, consistent diagnostic criteria, and thorough care pathways for fibromyalgia sufferers within the NHS.
