A Service Evaluation of the Experiences of Patients With Functional Neurological Disorders Within the NHS

Abstract

Previous research into Functional Neurological Disorder (FND) has shown that there are significant barriers in providing patient-centred care. However, there has been no specific research into whether patient experiences of care for FND meet the current standards of care. This study aimed to investigate the types of problems experienced by FND patients, and whether these differed to patients with multiple sclerosis (MS). FND (n = 40) and MS patients (n = 37) were recruited from NHS tertiary neurology clinics and completed questionnaires on their experiences of health care services. Significant differences in experiences of care between the two patient groups were found, with FND patients reporting significantly more problems in their diagnosis and treatment (p = 0.003), patient-centred care (p < 0.001), relationships with healthcare professionals (p < 0.001), and in accessing community care (p = 0.001). Limitations include a small sample size, specificity to a single centre, and cross-sectional design. The results suggest that current care for FND patients is not meeting expected standards for long-term neurological conditions, highlighting the need for structured care pathways and patient-centred care.

Why functional neurological disorder is not feigning or malingering

“…Furthermore, the existence of structured care pathways and access to suitable rehabilitative treatments for FND are generally lacking 71 . Indeed, people with FND often report receiving a diagnostic explanation that leaves them feeling that symptoms are not real 80 . This experience, in combination with an approach to management that offers no support or treatment, would tend to lead to an understandable, logical change in behaviour to seek help repeatedly and to maximise the expression of symptoms to try to get understanding and help.…”

Attitudes and perceptions of Irish health care professionals regarding functional neurological disorder: A national survey

“…Patients with FND are typically seen either in extremely busy general neurology clinics in acute hospitals or in general practices, where rushed consultations are likely to be unsatisfactory for clinician and patient alike. Patients with FND frequently report negative relationships with HCPs in Ireland and elsewhere (O'Keeffe et al., 2021 ; Rawlings & Reuber, 2016 ) and experience a sense of invalidation regarding symptoms (Foley et al., 2022 ). It is possible that these difficulties are amplified by insufficient clinic time.…”

“…As a result, healthcare costs for FND have been shown internationally to be substantial (Stephen et al., 2021 ). Patients with FND often report delayed and poor communication in diagnosis, negative relationships with HCPs and challenges in accessing services and supports (O'Keeffe et al., 2021 ; Rawlings & Reuber, 2016 ). The patient experience can often involve feelings of stigma and a sense of invalidation regarding symptoms (Foley et al., 2022 ).…”

Clinicians' implicit and explicit attitudes about the legitimacy of functional neurological disorders correlate with referral decisions

“…Thus, MS was selected as a comparator among alternative neurological conditions due to parallels including confounding factors that could impact on perceived legitimacy (gender break down, age of onset, variability in symptoms etc. ; O'Keeffe et al, 2021; Walzl et al, 2022).…”