A study exploring patient perspectives following FND diagnosis
Research type
Research Study
Full title
Patient perspectives on navigating support following a diagnosis of functional neurological disorder amidst limited specialised services in the NHS
IRAS ID
343133
Contact name
Lucy Piggin
Contact email
Sponsor organisation
Bangor University
Duration of Study in the UK
0 years, 10 months, 31 days
Research summary
Summary of Research
Functional neurological disorders (FND) refer to the presence of neurological symptoms without a known cause. It is estimated that between 4 and 12 per 100,000 population is diagnosed with FND each year. However, much debate surrounds FND in terms of its classification, cause and management. Therefore, service provision, resources and knowledge about FND varies within health services across the UK. As a result, people with FND experience delays and uncertainty in diagnosis, while outcomes with current management is often poor. Despite these concerns, this field is dominated by research exploring healthcare professionals' experiences, and there is minimal research dedicated to the experiences of people who have received a diagnosis of FND. Therefore, this research will explore patient experiences following a diagnosis of FND. Between 8-12 participants will be invited to complete a qualitative interview, which will be conducted remotely or in a clinical setting, depending on participant preference. Interviews will be analysed using interpretive phenomenological analysis. The project will be completed by July 2025.
Summary of Results
Research has demonstrated negative attitudes and perceptions of functional neurological disorder (FND) held by health care professionals, as well as negative experiences of receiving care by those diagnosed with FND. To improve understanding of the needs of this client group, this research aimed to explore the post-diagnostic experiences of people with FND navigating support within the NHS. Interpretative phenomenological analysis was used on data collected from semi-structured interviews. Four interconnected themes emerged from the participants’ accounts: 1) the complexity of a diagnosis, 2) deserted with a diagnosis, 3) journey towards disillusionment, and 4) specialist support: a positive ending?, highlighting the complex post-diagnostic experiences related to seeking support in the NHS. The findings provide new insights into support-seeking in FND and its impact on participants’ relationships with healthcare professionals and health services, as well as their ability to access and utilise specialist support.REC name
North of Scotland Research Ethics Committee 2
REC reference
24/NS/0117
Date of REC Opinion
19 Nov 2024
REC opinion
Further Information Favourable Opinion