“Functional neurological what?”

Hear from honorary Secretary of the PDA Ability Network, Hazel Gueldner, who shares with us her personal experience of living with Functional Neurological Disorder.

Hazel Gueldner is a retired hospital clinical pharmacist who worked in Scotland. In this candid ACTNow story, she explains what Functional Neurological Disorder (FND) is, how it affected her life and how people living with the condition can seek support and be supported.

Another sleepless night, but it’s nothing new. I don’t know if you can call it living, but living with a disability can be hard. It’s even harder living with a disability that few have heard of … and even fewer understand.

Have you heard of functional neurological disorder (FND)?

You may have seen it a little in the media – the likes of Liam Virgo, Alex Mitchell from 2024 Britain’s Got Talent, DJ April Stocks and singer Lisa McHugh are all living with the condition. Many, many more in the UK also have FND, so possibly you have them or their carers coming into your pharmacy. To put it into perspective, UK figures show that people living with FND is the same as people diagnosed with brain tumours (120,000 – 150,000)*.

So, what is this FND all about?

An often-misunderstood condition, many living with FND can be accused of faking it … believe me I did not fake being unable to walk for two months! Despite these misconceptions, Functional Neurological Disorder is specifically mentioned in the Equality Act 2010.

The causes are varied; in most cases it’s the result of an infection, whilst for others it’s due to physical trauma such as car accidents, domestic abuse and even childbirth. My own FND symptoms appeared a few weeks after I had Covid for the first time in 2023. Within 24 hours my brain was so inflamed it stopped being able to ‘talk’ to the rest of my body. I couldn’t walk, think very clearly or read … even eating and drinking became a struggle. So work was out of the question.

Pharmacy employers, managers and supervisors can make a real difference to colleagues living with ... neurological conditions by creating a supportive, understanding workplace.

Hazel Gueldner

As you can imagine, being stuck in bed, unable to do most basic of tasks like walking without pain is incredibly lonely.

Just after diagnosis, I reached out to the charity FND Dimensions which is run by trustees and volunteers who live with FND. The charity does incredible work running online meetings, and events, even though they themselves are poorly. Most importantly, they believed me, supported me and cheered me on.

By month three I could get up, get dressed and go downstairs. Granted that would maybe take three hours or so to do with my non-existent energy, but to do it felt like a miracle. Yes, my left leg dragged and I had to go up and down levels carefully, but I could actually move. I started being able to watch maybe five minutes of television and take something in, but reading was beyond my brain. For someone who could read a book in a few days it was awful.

Fast forward to a year in and I was almost walking normally. However, sleep would sometimes evade me, and my left leg and arm are in constant pain. Neuropsychiatry prescribed duloxetine, but I had issues with severe indigestion. Very slow titration and a PPI helped to get me up to 90mg daily. I continued to do as much as I could within my “energy envelope”. Work had long written me off – dismissed under the NHS capability process after over 30 years.

I was determined to still have some purpose.

I started helping out with the Scouts, firstly with admin and then becoming a cub leader. I also started volunteering at Dimensions, sharing my lived experience. Things lead to organisations such as the Neurological Alliance of Scotland and the PDA EDI networks.

Advocating for those with FND as a pharmacist will now always be a part of me. I was elected as honorary Secretary of the PDA Ability Network in 2025. I’ll always remain hopeful – my duloxetine is being titrated down now and I am kept busy with a number of projects.

How people with FND can access support

England, Scotland and Wales all have optimal FND pathways, and people can also find support through the Neurosymptoms app and the myFND app. I believe much more work still needs to be done, especially through education, adequate funding for research and support for people living with FND. One thing that I’m passionate about is support for children, as FND is found in all ages – the youngest person living with the diagnosis is aged around 4. Three years ago, the Royal College of Paediatrics and Child Health added FND to its top 10 child neurological health priority list, this year it is priority number 2, behind childhood epilepsy. Despite this, many children are missing education due to FND and even the above published pathways are only directed at adults.

Supporting pharmacy colleagues with FND

Pharmacy employers, managers and supervisors can make a real difference to colleagues living with FND (and other neurological conditions) by creating a supportive, understanding workplace. Listening to the individual, avoiding assumptions and having open conversations about what support they need are important first steps. Practical adjustments, such as flexibility around working patterns, breaks, workload or duties, can help colleagues manage fluctuating symptoms while continuing to contribute their skills and experience.

* Data extrapolated from the Scottish Government estimated prevalence of neurological conditions 2026 and statistics from the Brain Tumour Charity.