Ivet Pritomanova, Sarah R. Cope, Billie James, Mark J. Edwards, Jared G. Smith, Sharif El-Leithy, Serena Vanzan, Patricia Hogwood, Dawn Golder, Kati Jane Turner, Jo Billings
Abstract
Functional neurological disorder (FND) is a common condition, associated with high disability and healthcare costs, and poor treatment access. This qualitative study aimed to explore participants’ experiences of being diagnosed with functional neurological disorder (FND), accessing treatment, and navigating life after diagnosis.
Introduction
Functional neurological disorder (FND) is a common condition characterised by neurological symptoms (e.g., weakness, tremors, seizures) which appear to result from a loss of voluntary control over movement or perceptual experience, despite normal structure of the nervous system.
Materials and methods
The core team involved in this qualitative study were women from ethnically diverse backgrounds and various occupations and included experts by experience. A wider group of researchers drawn from the MODIFI trial team, including men, contributed to the final paper.
Results
Through inductive and iterative thematic analysis of the data we identified six main themes and 13 sub-themes, presented in a thematic table in Table 2.
Discussion
This qualitative study provides a narrative of participants’ experiences of living with FND from the onset of symptoms through seeking diagnosis to possibly accessing treatment. Six main themes were identified: (1) seeking a diagnosis and relief from the physical struggles, (2) receiving a diagnosis of FND, (3) treatment for FND, (4) the impact of FND on day-to-day life, (5) the need to take control of one’s life and return to normal, and (6) hopes for the future.
Conclusion
This qualitative study presents six key themes that reveal common, often negative experiences of individuals with FND. The findings emphasise the disabling impact of FND and how much the lives of participants changed as they experienced losses, and profound negative effects on their health and wellbeing.
Citation: Pritomanova I, Cope SR, James B, Edwards MJ, Smith JG, El-Leithy S, et al. (2026) The journey to diagnosis and care of functional neurological disorder (FND). PLoS One 21(4): e0328321. https://doi.org/10.1371/journal.pone.0328321
Editor: Ioannis Liampas, University of Thessaly Faculty of Medicine: Panepistemio Thessalias Tmema Iatrikes, GREECE
Received: June 30, 2025; Accepted: March 1, 2026; Published: April 22, 2026
Copyright: © 2026 Pritomanova et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: Data in this study (interview transcripts) contain potentially identifying or sensitive patient information and has not been made publicly available, in line with ethical approvals for this study. Requests for further information can be made to NHS West Midlands Edgbaston Research Ethics Committee and Health Research Authority (ref: 22/WM/0178) at edgbaston.rec@hra.nhs.uk.
Funding: This project is funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number 202277). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Competing interests: The authors have declared that no competing interests exist.
