8 Functional neurological disorder (FND) patients’ experience of healthcare interventions

ObjectivesDespite Functional Neurological Disorder (FND) accounting for approximately 25% of Neurology out-patient appointments, and being frequently comorbid with other neurological conditions, there are only 4 centres in the UK, offering in-patient treatment programmes. Subsequently, services are strained as patients face long waiting lists and likely deterioration of symptoms. We explored patients’ experience of this and the impact on their wellbeing.MethodsAn on-line survey was sent to patients with a diagnosis of FND, who had, at out- patient assessment been deemed appropriate candidates for in-patient rehabilitation, and had provided written consent to be included in research. The survey question themes included: demography, understanding of FND diagnosis, subjective opinion of symptom progression, use of primary care services and/or Emergency Departments, and access to support and employment opportunities.Response where subjective opinion was sought, e.g. understanding of diagnosis, was via Likert scale ratings (from 0 (no understanding at all) to 10 (full understanding). All responses were anonymous.Results12 patients completed the survey (n=12). Of these, 7 were female and 5, male. 11 patients were aged between 25–64 years and 1, aged over 65 years. More than half of patients had seen their GP or visited an Emergency Department with symptoms related to FND in the past year. Average understanding of FND diagnosis was rated as 6.5, of treatment options as 4.8 and confidence of the likelihood of full recovery as 3.5 (on a scale of 0–10). 7 patients had carers, of whom the majority were family members. 9 patients would consider the use of digital interventions or day therapy programmes and 10 patients had already completed an in-patient rehabilitation programme. Of these, 9 had been on the in-patient waiting list for over 6 months. 8 patients felt that their symptoms had deteriorated and 6 patients described their level of independence, as being ‘much worse’, while on the waiting list.ConclusionsWhile we appreciate that this is a small sample size, it does offer invaluable insight into the experiences of those with FND, particularly with regards to healthcare intervention. Patients with FND inevitably use what would be regarded as high levels of healthcare intervention, although this must be considered within the context of limited healthcare resources available to them.