Described as the “most common condition you have never heard of”, functional neurological disorder (FND) impacts up to 100,000 adults in the UK.
And campaigners are warning there is no specific plan for patient care on the NHS.
Many sufferers, like Tom Plender, struggle for years to get a diagnosis because of the lack of knowledge by 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 which triggered FND.
“I was doing gigs every night, my career was really taking off,” he said.
“Suddenly you’re disabled, and I find myself in a situation where I’m housebound. I progressively lost the use of my limbs and had carers coming in everyday to help with washing.”
FND has a number of symptoms including seizures, spasms and chronic pain, but they are often dismissed as being 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 Tom suffered from FND.
“It sits right at the junction between neurology and psychiatry, it’s a neuropsychiatric condition,” he said.
“One way of thinking about it is that it’s a problem with being able to access or control your own body normally so you have a situation where the person is trying as hard as they can, all the basic wiring is ok, but people can’t seem to access it in a normal way.”
Image: Tom Plender was an aspiring jazz musician Because of the way the condition unusually intersects between neurology and psychiatry, many patients say they are stigmatised.
The charity FND Hope UK says those with FND face multiple challenges when trying to access effective treatment and care.
They recently surveyed all of the clinical commissioning groups and health boards and found that 50% had no specific agreement to treat FND and 9% said that they did not accept referrals for treatment.
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On 8 February, doctors and campaigners will sit down with MPs in Westminster to discuss FND.
Cindy Smulders, a trustee for FND Hope UK, said: “We are very keen to get an optimum care pathway for FND.
“Because at the moment there isn’t one. It’s very difficult to get diagnosed, it can take up to two years or more.
“And when you do get one, you get given a website and a leaflet and that’s it.
“Not having a path means you just get thrown from one department to another, you go round and round in circles, with endless scans and nobody connects the dots.”