The Vice Chair of FND FrieNDs, a charity supporting people with Functional Neurological Disorder (FND) across the South West of England, is calling for greater recognition of the condition among politicians and the NHS.
Dave Penny, who lives with FND himself, says there is very little understanding of the illness among healthcare professionals and “virtually zero support” available.
“Unfortunately, this illness is fairly unknown by both the public and the medical profession, and very few staff, including OTs and physios, are trained to support people with FND,” he told Neuro Rehab. “Because of this lack of understanding, healthcare professionals often give us the impression that it’s all in our heads and that there’s nothing wrong with us.”
FND affects how the brain and nervous system communicate, leading to debilitating symptoms such as tremors, slurred or stuttered speech, memory problems and seizures.
Dave received his diagnosis in 2023 after experiencing tremors for several years. He was initially referred to a Parkinson’s specialist in 2012 and remained under her care for eight years, during which time his condition worsened.
“My FND progressed from slight arm tremors to full‑body tremors. Throughout this time, my consultant was certain I didn’t have Parkinson’s and carried out many tests to understand why I was experiencing tremors, none of which proved conclusive.
“Finally, when I started having seizures, I was referred to a neurologist who diagnosed FND. I was then passed on to the Rosa Burden Centre in Bristol, which specialises in neurological disorders and FND.”
There is currently no cure for FND, but treatments such as physiotherapy for motor symptoms and speech and language therapy can help improve day‑to‑day functioning.
Dave says that with support from the Rosa Burden Centre, he can now manage his symptoms to a high degree. However, he stresses that this level of specialist help is far from the norm.
“Once diagnosed, people with FND are usually handed a single piece of A4 paper with the names of charities that can offer support, with no mention of help from any other service,” he explained.
Dave says that meaningful change, including early diagnosis and improved patient care, will only come when FND receives the recognition it deserves.
He is calling for increased Government funding to help uncover the causes of FND and to support better training for healthcare professionals across multiple departments.
“At the moment, a good proportion of NHS staff have never even heard of FND, let alone know how to treat it, and this needs to change,” he said.
Dave joined FND FrieNDs as a volunteer six months after receiving his diagnosis and became a trustee in 2024, before being appointed as Vice Chair in April this year.
The charity supports people with FND to improve their mental and physical wellbeing by connecting them with others who live with the condition through group meetings.
It also offers seated Pilates, craft workshops and pain clinics. In addition, FND FrieNDs works in partnership with NHS Trusts and local hospitals, supporting patients and holding awareness sessions to help promote a greater understanding of FND among healthcare professionals.
“We have a close relationship with the Rosa Burden Centre in Southmead, giving talks to staff and inpatient groups who are due to be discharged,” Dave said.
“We try to also raise awareness and funding through local events as we currently receive no grants to support our work.”
To find out more about FND FrieNDs and Functional Neurological Disorder click here.