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Patients have been left feeling suicidal after feeling like their doctor was saying their symptoms were 'all in their head'—according to research from the University of East Anglia and the University of Cambridge.
A new study uncovers concerns about misdiagnosis, stigma and inconsistent care for people with autoimmune diseases who are also diagnosed with functional neurological disorder (FND). It also reveals deep disagreements between clinicians over FND diagnoses.
The research team says better communication, multidisciplinary working and more holistic care are needed to improve patient outcomes.
Lead author Dr. Melanie Sloan, from UEA's Norwich Medical School and the Department of Public Health at the University of Cambridge, said, "FND is a recognized neurological condition that can cause symptoms such as weakness, shaking, changes in movement or feeling, and nonepileptic seizures.
"These symptoms are real and are not made up or under a person's control.
"We wanted to better understand the challenges of diagnosing complex neurological symptoms in autoimmune diseases, and why patients and clinicians can sometimes see things very differently.
"Ultimately, our aim was to identify practical ways to improve communication, reduce distress and help ensure patients receive the most appropriate care and support."
The research team explored how FND diagnoses are used and understood in people with autoimmune diseases, and where disagreements arise between patients and clinicians.
Researchers analyzed responses from international surveys involving 1,853 patients, 400 clinicians and 463 members of the public, as well as conducting in-depth interviews with patients and doctors.
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