I worked as an occupational therapist in community mental health for over 20 years. In the last 12 years I had several referrals for people with FND. Initially, although I had heard of the condition, I had no experience of helping people with it, and little knowledge about it. A search of the internet produced very little information to help, but in the last few years research has proliferated. We now understand more of the neurology and psychology of FND, but so far this hasn’t resulted in new, targeted treatment methods.

Across Britain there are very few services for people with FND, and people with this diagnosis very often feel dismissed, not listened to and abandoned by health professionals. Worse, they may understand what they are told as “it’s all in your head”, or even be accused of faking symptoms. It goes without saying that this is unacceptable, but it must also be remembered that clinicians are frustrated and disempowered by being unable to help their patients.

I quickly realised that I was alone in working with my people with FND as there were no other professionals in my team with any more knowledge than me. Basic OT principles were a good starting point, but I spent many hours scouring the internet for research articles and educating myself about this common, but little known, condition. Liaison psychiatry ran a group for people with functional seizures, but this quickly became overwhelmed by referrals and closed down. A neuro-physiotherapist whom I met a couple of years ago (via the FND Society, an international multidisciplinary group of professionals) commented: “If you don’t have a therapist, become one”. This sums up the experience of many interested clinicians across the country, who find themselves isolated in treating people with FND.

As much as professionals find themselves isolated, people with FND are more so. Without meeting similar people at treatment venues, it is easy to think you’re the only one experiencing these difficulties that reduce quality of life so significantly. This is the reason I set up this support group when I retired in March 2023. We settled on the name FND Together to emphasise the supportive aspect of the group, and I added Finding New Directions (an idea that came to me while waiting at a red traffic light – an enforced pause can sometimes be beneficial!) because the use of the initials FND again amused me.