‘Most common condition you’ve never heard of’: Campaigners demand new plan for FND treatment | UK News

Described as “the most common condition you’ve never heard of”, functional neurological disorder (FND) affects 100,000 adults in the UK.

And campaigners are warning that there is no concrete plan for patient care on the NHS.

Many sufferers, like Tom Plender, struggle for years to be diagnosed because of a lack of knowledge by healthcare professionals.

Tom is an aspiring jazz musician at the Guildhall School of Music and Drama in London.

His packed schedule damaged his wrists and knees, which triggered FND.

“I’ve been doing gigs every night, my career is really taking off,” he said.

“Suddenly you became disabled, and I found myself in a situation where I had to stay at home. I gradually lost the ability to use my limbs and had to have a caregiver come to help with the daily laundry.”

FND has a number of symptoms including seizures, spasms, and chronic pain, but these are often considered 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 had FND.

“It’s right at the intersection of neurology and psychiatry, which is a neuropsychiatric condition,” he said.

“One way of thinking about this is that there’s a problem with being able to access or control your own body normally so you have a situation where that person is trying as hard as they can, all systems basic wiring is fine, but people can’t seem to be able to access it in the usual way.”

Because of this unusual intersection of neurology and psychiatry, many patients say they are stigmatized.

The charity FND Hope UK says people with FND face many challenges trying to access effective treatment and care.

They recently surveyed all clinical operations groups and medical boards and found that 50% had no specific agreement to treat FND and 9% said they would not accept a treatment referral.

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On February 8, doctors and campaigners will sit down with MPs in Westminster to discuss the FND.

Cindy Smulders, trustee of FND Hope UK, said: “We are very much looking forward to an optimal route of care for FND.

“Because there isn’t currently. It’s very difficult to diagnose, 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.

“No path means you get thrown from department to department, you go around, with endless sweeps and no one connects the dots.”