Described as the “most common condition you’ve never heard of”, functional neurological disorder (FND) affects up to 100,000 adults in the UK.
And campaigners warn there is no specific plan for patient care in the NHS.
Many patients, such as Tom Plender, struggle for years to get a diagnosis due to the lack of knowledge among healthcare professionals.
Tom was an aspiring jazz musician at the Guildhall School of Music and Drama in London.
His demanding schedule damaged his wrist and knees, causing FND.
“I was doing gigs every night, my career really took off,” he said.
“Suddenly you’re disabled and I’m in a housebound situation. I gradually lost the use of my limbs and caregivers came by every day to help with washing.”
FND has a number of symptoms, including seizures, spasms, and chronic pain, but these are often dismissed as purely psychological.
After 12 years of trying to find a diagnosis, Dr Mark Edwards, Professor of Neurology and Interface Disorders, King’s College London, confirmed that Tom suffered from FND.
“It’s right at the intersection of neurology and psychiatry. It’s a neuropsychiatric disorder,” he said.
“One way to think about it is it’s a problem accessing or controlling your own body normally, so you have a situation where the person is trying as hard as they can, all the basic wiring is fine, but people can’t seem to access it in a normal way.”
Because of the unusual way the condition intersects neurology and psychiatry, many patients say they are stigmatized.
The charity FND Hope UK says people with FND face multiple challenges when trying to access effective treatment and care.
They recently surveyed all clinical commissioning groups and health boards and found that 50% had no specific agreement to treat FND and 9% said they were not accepting referrals for treatment.
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On February 8, doctors and activists will meet MPs in Westminster to discuss FND.
Cindy Smulders, a trustee for FND Hope UK, said: “We are very keen to get an optimal care pathway for FND.
“Because there isn’t one at the moment. It’s very difficult to get the diagnosis, it can take up to two years or more.
“And when you get one, you get a website and a flyer and that’s it.
“If you don’t have a path, you just get flung from one department to another, going around in circles, with endless scans and no one connecting the dots.”