MD (Res) Scholarship 2019: Cate Bailey; King’s College London

Project Title: Illness beliefs and explanatory models in patients with functional neurological disorders.

Supervisor: Dr Timothy Nicholson, Dr Norman Poole, Professor Thomas Craig, Dr Virginia Eatough

Summary:

This study will explore how people diagnosed with Functional Neurological Disorders (FNDs) explain and make sense of their experiences. FNDs occur when a person develops neurological symptoms (such as weakness, numbness, tremors or seizures) which are not caused by neurological disease. This means that there is a problem with the functioning of the neurological system, but no identifiable structural, biochemical or electrical diseases such as a stroke or multiple sclerosis to account for the symptoms. FND symptoms are common and treatable, though remain poorly understood and are associated with high levels of stigma and disability. Over time the name for these conditions has changed often – from “hysteria” to “conversion disorder” – and more recently the preferred term has become “functional neurological disorders”.

Previously, patients were often told that their symptoms were “all in your head” or caused by unconscious psychological trauma. However, recent research advances have contributed to explanations which incorporate the mind, brain and the body. Clinicians who work with people who have FNDs are increasingly trying to develop explanations which incorporate biological, psychological and social factors (often termed bio-psycho-social), in keeping with other medical conditions. Part of the assessment process involves demonstrating the reversibility of symptoms, ie: that the affected area can function normally under certain circumstances, which can engender hope in the potential for recovery and engagement in treatment.

Although there have been major advances in the neuroscientific study of these disorders there have been few studies exploring patient experience. Therefore, the aim of this project is to explore how patients with FNDs experience their illness and make sense of the diagnosis. A second aim is to understand how newer bio-psycho-social explanations, when delivered through a psychoeducation session, are received by patients living with FND. The psychoeducation session is a novel 2 hour program for patients with FNDs and their family. This includes lectures from an experienced neurologist, neuropsychiatrist, psychologist, specialist physiotherapist, and patient-expert.

Student:

Hi, I’m Cate and in June 2019 I started an MD (Res) at King’s College London. I’m a higher trainee in older and general adult psychiatry and work clinically in East London Foundation NHS Trust. This year I’ve taken a year out of my training to work as a Fellow in Medical Education at Barts and the London School of Medicine and Dentistry, and Queen Mary University.

I previously completed an NIHR Funded Academic Clinical Fellowship in Old Age Psychiatry during my core training in East London. During this time I attained a Masters in Research and my work focussed on functional memory disorders and communication of dementia diagnoses in memory clinics, as part of the ShareD (Shared Decision Making in Dementia) Study.

My clinical interests are in liaison and older adult psychiatry, and my research interests are focussed on communication between clinicians and patients and understanding and improving the experience of people with disorders at the interface between physical and mental health. I am also the editor of the trainees’ section of the BJPsych Bulletin which allows me to foster collaborations between trainee psychiatrists, members of the multidisciplinary team and those with lived experience. I’m thrilled to have been awarded an MD (Res) Scholarship for this project and am grateful for the support it affords me in pursuing this important area of research.

Start Date: June 2019

Scientific Goal:

This project aims to explore illness beliefs, explanatory models and the experiences of patients with functional neurological disorders. This will be achieved through both qualitative and quantitative inquiry. The quantitative aspects of the study will involve gathering data on illness beliefs, comorbidities, quality of life, functioning and perceptions of stigma before and after patients attend the above psychoeducation session. The qualitative aspects will include in depth interviews with patients with functional weakness or movement disorders and focus groups with patients who have attended the psychoeducation session to try to understand their experiences and ongoing needs.