Clinic offers new lease on life for 21-year-old

A New South Wales-first tertiary clinical program has significantly improved the quality of life of a young woman diagnosed with functional neurological disorder (FND).

21-year-old Grace Corkhill, from regional New South Wales, had a cerebral artery aneurysmal rupture in 2013 that caused a stroke. She was then diagnosed with epilepsy and developed FND in part related to the original trauma of her significant health issues.

Thought to develop due to a ‘disconnect’ in signalling between the brain and the rest of the body, FND can present with a variety of neurological symptoms that include seizure-like attacks, weakness, sensory disturbances, tremor, brain fog and issues with speech, walking and vision.

It is often accompanied by chronic pain, fatigue and various other distressing symptoms. One Australian study noted that approximately 1 in 6 people who see a neurologist will be diagnosed with FND, with many patients stigmatised for having a condition that is poorly understood.

Grace’s disorder manifested in intermittent, involuntary attacks of shakes in her limbs and body, which left her housebound and terrified.

“I struggled significantly with the fact that I couldn’t pinpoint a trigger to the shakes,” she said. “I became very anxious about it happening in public.

“Pretty soon I stopped work and just stayed home, which in turn impacted my mental health.”

The Mindgardens FND Clinic at Prince of Wales Hospital in Sydney brings together specialists from different disciplines, including neurology, rehabilitation medicine, physiotherapy, occupational therapy and psychology, to develop individual programs that respond to patients’ own treatment priorities for FND.

Dr Adith Mohan, a neuropsychiatrist and Head of the clinic, said that “its success thus far has been extraordinary, with most patients treated through the clinic showing clinical and functional benefit”.

“The loss of hope in FND patients is common,” Mohan said.

“In Grace’s situation and in the absence of intervention, her symptoms would likely have become persistent and made living her life more difficult.

“This is true of any FND patient, and although finding a cure is far too simplistic a way of looking at the disorder, FND is eminently treatable.”

The clinic also encompasses a research component led by Mohan through UNSW Sydney’s Centre for Healthy Brain Ageing (CHeBA), which is addressing the fundamental gap in information and education for patients and their clinicians around FND.

“What we have built into the clinical service is a robust data collection system which allows us to measure real-world outcomes of the clinic and capture patients’ levels of illness and disability,” Mohan said.

“Beyond improving the lives of these young patients, we are ultimately going to end up with a high-quality dataset that shows us the distinct needs of FND patients. The research will also inform us of the economic cost of FND on patients and their families, as well as society at large, which has great implications for decision-making by policymakers.”

Demand for the clinic has already exceeded capacity with nearly 100 referrals received over its first year of operation, demonstrating a clear need for the intervention services — especially in rural and regional areas. Patients have reported their experiences as being overwhelmingly positive, with many commenting on the need for such services across NSW and nationally.

While Grace did not have high expectations at the start of the 6-week intervention, she was surprised to notice genuine improvement every week. “It was clear that everything they had put into place worked.”

She is now back at work, has re-engaged socially and is exercising daily.

“I feel back in control of my life because of the treatment I received,” she said.

The clinic is funded by Mindgardens Neuroscience Network: a translational research partnership between South Eastern Sydney Local Health District, the University of NSW, Black Dog Institute and Neuroscience Research Australia (NeuRA).

Findings from the Mindgardens FND Clinic will be showcased at the RANCZP Section of Neuropsychiatry 2023 Conference.

Image caption: Grace Corkhill. Image courtesy of UNSW Sydney Centre for Healthy Brain Ageing (CHeBA).