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 that there is no specific plan for patient care in the NHS.
Many patients, like Tom Plender, struggle for years to get a diagnosis due to a lack of knowledge from 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, triggering FND.
“I was doing concerts every night, my career was really taking off,” he said.
“Suddenly you’re disabled and I find myself in a situation where I’m confined to my home. I progressively lost the use of my limbs and had carers coming in every day to help with the washing up.”
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 at King’s College London, confirmed that Tom suffered from FND.
“It sits right at the crossroads between neurology and psychiatry, it’s a neuropsychiatric condition,” he said.
“One way to think about it is that it’s a problem being able to access or control your own body normally, so you have a situation where the person is trying their best, all the basic wiring is fine, but people can.” It seems that I access it in a normal way.”
Due to the unusual way in which the condition crosses between neurology and psychiatry, many patients say they are stigmatized.
The charity FND Hope UK says that people with FND face multiple challenges when trying to access effective treatment and care.
They recently surveyed all clinical commissioning groups and boards of health and found that 50% had no specific agreement to treat FND and 9% said they did not accept referrals for treatment.
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On February 8, doctors and activists will meet MPs in Westminster to discuss FND.
Cindy Smulders, Trustee of FND Hope UK, said: “We are very interested in gaining an optimal care pathway for FND.
“Because right now there isn’t one. It is very difficult to be diagnosed, it can take up to two years or more.
“And when you get one, they give you a website and a brochure and that’s it.
“Not having a path means you’re just thrown from one department to another, going round and round in circles, endless scanning and no one connecting the dots.”