MD (Res) Scholarship 2019: Cate Bailey; King’s College London
Project Title: Experiences, understanding and conceptual 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.
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.
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
Progress report year 4 2023
The last 12 months have been hectic, challenging but also extremely productive. Within the last year I’ve been supported by supervisors and MHRUK to take a 6 month break from my studies due to overwhelming clinical commitments. However, since this break I’ve negotiated a timetable which includes working compressed clinical hours leaving more uninterrupted time for research. I returned to studies formally in February 2023 with a clearer plan and excited to move forward.
I’ve made steady progress with the systematic review of the lived experiences of people with motor and sensory FND. The review collates and synthesises qualitative (eg: interview, focus group) data from 12 published studies. Alongside co-authors I’ve written a final draft, ready for submission to a journal in the coming weeks. The outline of the review has been published on a systematic review protocol database (PROSPERO) here: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021293759
Analysing the themes and developing a synthesis has been a fascinating process and I have learned so much which will inform analysis of the data I am collecting. I have also been particularly grateful to two people with lived experience of FND who have contributed to the review.
Recruitment to both qualitative and quantitative parts of my project has generally gone well. I’ve now completed 9 ‘think aloud’ interviews, which is close to the 10 I was hoping for. I have started transcribing these and will be analysing them with colleagues including someone with lived experience of FND. I’ve recruited 55 people who have completed surveys on illness perceptions, mood, experiences of stigma, quality of life, before and following the FND education session at St George’s. This means I’ve reached my quantitative recruitment targets and have begun to analyse the data with a view to submitting a paper to an appropriate journal before the end of the year. I’ve completed a second focus group with 6 people, and will be exploring options to recruit to a third.
I am preparing to write up my thesis, which has a revised due date of the beginning of May 2024. So the next 6-8 months will be focussed on analysing the data I already have and submitting papers for publication where possible, for inclusion in my thesis.
Although in my clinical work I am not currently seeing a large number of people with FND, I have joined a working group exploring how to develop services for FND in my local trust. My experiences of research in this area, and hearing about the challenges faced by people with FND in accessing diagnoses and treatment has made me passionate about how to ensure where I work can offer a high quality, co-produced service.
As always I am extremely grateful to MHRUK for their support and patience with my juggling clinical and academic work, and to my colleagues, supervisors, St George’s neuropsychiatry service clinicians, and the Psychiatry Research Trust, for their assistance with participant payments. The people with FND I have met through this study have been open and generous with sharing their experiences. I hope that this research can contribute in some way to raising awareness of FND, challenging stigma and add to the case for co-produced multidisciplinary treatment pathways for this frequently neglected disorder.
Progress Report year 2, 2021
The last year has been challenging in terms of conducting research and due to increased clinical work. In March 2020 I returned from an educational post within Barts and the London Medical School to clinical work on an acute inpatient mental health ward. At the time there were significant staff absences as well as a need to support in educating staff about emerging issues related to COVID-19, and ensure that high quality care was provided to our patients. I lead on an educational project which saw production of 10 interactive webinars which involved the contributions of 48 peer reviewers and was also co-produced with East London NHS Trust People Participation. Although not specifically related to my MD I was able to utilise research skills, ability to appraise and rapidly synthesise new information to apply to patient care.
Progress with my part-time MD has faced a number of delays but has remained steady and I returned to my studies after a 3 month break (due to the additional clinical work during COVID) in June 2020. Over the last year I have re-written my study protocol (the study design) to accommodate the many changes which have happened since the pandemic. This has meant a significant revision of the processes, specifically considering the move to remote, online interviews and the ethical and safety issues with these methods. The project now has the capacity to offer both online or in person interviews, depending on preference and current COVID guidance. This option has the potential to make participation possible for people who live further away from the hospital or might have previously been hesitant to participate due to mobility issues. Although there have been further delays my ethics application is now ready to submit.
In terms of other parts of the project I have commenced work on a systematic review looking at the experiences of people with motor and sensory FND (meaning paralysis, tremors, numbness or altered feeling). As part of this I am working jointly with and supervising an MSc student from King’s College London and we have completed the searching for relevant literature and papers and have been bringing together themes from across the these. The aim in the next 6 months is to write this up for publication in a peer reviewed journal, in conjunction with my supervisors and a researcher with lived experience of FND. In July 2021 I presented my work so far to the departmental committee which oversees postgraduate degrees and I was successful in achieving the ‘upgrade’ to proceed with my MD(res) degree.
In the coming year I will be finishing three years as the editor of the trainees’ section of the BJPsych Bulletin to allow me to focus more exclusively on my MD. The role has given me many opportunities to develop transferrable skills which will be useful in my MD, including editing, peer reviewing and commissioning co-produced papers. My MD goals for the next 12 months are to progress to ethical approval for the study, to begin recruitment for both quantitative and qualitative aspects and to finish writing the systematic review.
As in previous years I have found the support of MHRUK incredibly motivating and inspiring. Although the pandemic has felt isolating hearing about other scholar’s experiences and challenges and being able to connect (even virtually) has been very helpful. I have also been grateful for MHRUK’s flexibility and understanding with the effects of the pandemic.
First Year Report 2020
Revised study title: Experiences, understanding and conceptual models in patients with functional neurological disorders: a qualitative and quantitative study
Supervisors: Dr Timothy Nicholson, Dr Norman Poole, Professor Thomas Craig, Dr Virginia Eatough
I commenced my part-time MD(Res) at King’s College London in June 2019 and was thrilled to receive news of the MHRUK Scholarship in September 2019. My first task in this year was to finalise the outline and exact details of the study in preparation for application for ethics approval.
The primary aim of this study is to explore the lived experience, understanding and conceptualisation of the illness, engagement and needs of people with Functional Neurological Disorders (FND). A secondary aim is to investigate the experiences of people with FND who receive a novel multi-disciplinary psychoeducation session. Over 2019 and early 2020 I completed the protocol which detailed the background to the study, exact recruitment strategy, quantitative measures and procedures for qualitative interviews. Conversations with people with lived experience, and reviewing the literature lead me to include quantitative measures on stigma, which had not previously been researched in this group. I have liaised with FND Hope (a global charity for people with FND which has an advisory committee for reviewing scientific research). Feedback from FND Hope has been incredibly helpful in shaping the focus of the study on the lived experience of people with FND. It has highlighted that one of the proposed measures for the quantitative aspect might cause some frustration to people with FND, and as such there are ongoing discussions in how to mitigate this. Options include using a longer and more detailed measure, and the addition of a “think aloud” aspect where participants are invited to voice their experiences of the questionnaire as they complete it. This option would allow data to be gathered on the acceptability of the measure for people with FND, given that it is widely used in FND and other medical conditions. Further consultation is planned with FND Hope following revisions to the protocol. Advice from the McPin foundation has also been very helpful in thinking about how to engage people with lived experience in all aspects of the study.
In light of the ongoing effects of COVID I have made amendments to accommodate the potential need for interviews and focus groups to be conducted remotely. The quantitative aspects of the study will already be collected online with secure software called RedCap.
I have been successful in being granted funding from the Psychiatry Research Trust for participant fees and travel.
I have completed draft outlines and search strategies for a scoping review of patient and family experiences of FND, and systematic review of healthcare professionals’ experiences of FND. The future plan is to collaborate with a service-user researcher on both these reviews, the “think aloud” aspects of the research and the focus groups.
In responding to the COVID-19 pandemic I reduced my number of academic days and returned to clinical work to assist on the acute mental health ward, to cover staff absences. My academic post in medical education also changed rapidly to accommodate virtual placements for students and providing COVID related education to doctors working in my trust. In discussion with my supervisors a 3 month deferment of my MD was agreed. I have now returned to my MD will be able to devote the required time in the coming months.
I have been incredibly grateful for the opportunities the scholarship has afforded, and for the understanding from MHRUK in the delays due to COVID-19. In the next year my plans include:
· Completing the revised protocol in conjunction with advice from FND Hope.
· Submitting the projected for NHS ethics approval.
· Commencing work on the systematic and scoping reviews, with a view to publishing these as pieces of independent research in a peer-reviewed journal.
· Pending ethics approval, beginning to recruit patients for the quantitative aspects of the study which will look at experiences of the FND psychoeducation session at St George’s.