REDESIGNING THE CARE JOURNEY:
FUNCTIONAL NEUROLOGICAL DISORDER (FND)
Overview
This page provides an overview of the project process and findings focusing on redesigning the care journey specifically for people living with Functional Neurological Disorder (FND).
People living with FND experience a variety of physical, sensory and cognitive symptoms that can impact on their quality of life and experiences with health and care services.
To better understand this from the perspective of people with lived experience of the condition, three semi-structured interviews were conducted with people who have experience of diagnosis of FND and captured using a bespoke experience mapping tool. The experience map was synthesised by the research team and shared with the interviewees for review, giving them opportunity to amend and add or remove any details as well as to choose a pseudonym to use in the map. These anonymised experience maps were used to represent the person receiving care in the workshop rather than having them attend as there was potential for their healthcare professionals to be present and this was considered as a potential ethical risk.
The workshop was organised with a wide range of health and care professionals across NHS Grampian who deliver care for people living with FND to consider new care pathways based on the experiences of those living with FND. Participants included a GP, Neurologist, Occupational Therapist, Physio Therapist, Psychologist, Psychiatrist and Speech & Language Therapist. In the workshop, participants reflected on the challenges they face with current ways of delivering care for people living with FND and discussed areas for improvement, collaboratively reviewed the experience maps generated from the interviews, and developed ideas for the future pathway by responding to what matters to people with lived experience of FND.
Participatory methods were adapted to enable remote engagement digitally due to Covid-19 restrictions. The interviews and workshop were conducted using video conferencing software (Zoom/Teams) and a virtual whiteboard application (Miro).
Findings
Understanding lived experience
This section synthesises key insights, challenges and areas for improvement from the perspective of people living with FND, using the visual summaries. Lived experience maps capturing detailed insights from each of the interviews are also available for download.
ELAINE’S EXPERIENCE
Elaine was diagnosed with FND two years ago after a long journey to diagnosis. She also lives with IBS and Fibromyalgia. She has four children and two grandchildren. She is a widow and recently entered a new relationship. She lives alone in the countryside as she needs the peace and quiet for her headaches.
A visual summary of key insights related to Elaine’s current experience and opportunities for change is provided below. For further information on Elaine’s experience, please download and view Elaine’s experience map.
“Keeping me well is staying at home.”
WILLIAM’S EXPERIENCE
William is 59 years old and lives with his wife and two children. He retired from the Royal Air Force about 5 years ago, and was recently diagnosed with FND.
A visual summary of key insights related to William’s current experience and opportunities for change is provided below. For further information on William’s experience, please download and view William’s experience map.
“...in some ways I really want it to be FND, because it makes my life and world a lot easier. The trouble with FND, it’s such a broad spectrum, it’s very, very wide, it’s almost what they call an umbrella diagnosis, and I think that’s what I found a bit hard to fit in.”
LINDA’S EXPERIENCE
Linda lives on an island which can mean its challenging to access services and specialists. She used to work as a psychologist. Linda has a very supportive family and network of friends. Her religious faith is also fundamental to her. Linda has cognitive difficulties and her condition is very unpredictable as a result of FND. Linda also has Periodic limb movement disorder, complex post-traumatic stress disorder, diabetes and arthritis.
A visual summary of key insights related to Linda’s current experience and opportunities for change is provided below. For further information on Linda’s experience, please download and view Linda’s experience map.
“I know he [the neurologist]’s interested in me as a whole person and not just which bits of my brain aren’t working and which symptoms I get so that means a huge amount, that’s massive.”
UNDERSTANDING current wayS of working
At the beginning of the workshop, each of the health professionals presented key challenges that they face when delivering care for people living with FND from their individual perspective, and as a group critically reflected on the current ways of working in Grampian. Four key themes emerged from this discussion.
Improving communication and coordination between services and with the patients, and the need for multidisciplinary input and collaboration in order to better support the needs of people living with FND was highlighted by all participants as an important focus area for the future.
Addressing service capacity by considering a lack of resources or inefficient use of resources due to barriers in coordination and consistency of approach was also identified as important for creating a realistic future pathway. Time was also highligted as a key factor related to capacity when supporting people with complex conditions such as FND. Time constraints alongside other clinical priorities could pose difficulties for health professionals to devote the additional time required to build rapport and trust with patients before making progress in terms of treatment and supporting self-management.
Creating a better understanding of FND both amongst health professionals and people living with FND was seen as key to earlier diagnosis and acceptance. It was felt that there was a lack of confidence in many health professionals, particularly those working in primary care settings, in diagnosing FND. From a patient perspective, a lack of understanding could lead to disbelief in the diagnosis and result in delayed uptake of services such as rehab.
Developing a clear and joined up pathway was also highlighted by all participants as a key area. Current challenges included a lack of understanding and information available to health professionals around referral options to different services. The dualistic nature of service provision in the management of physical and mental health separately was also highlighted as a issue as it does not meet the needs of people living with FND who often require both physical and psychological support, therefore, a more joined approach was deemed to be necessary when designing the future pathway.
Figure 1. Challenges of providing care for people living with FND from the perspective of health professionals.
OPPORTUNITIES AND IDEAS
During the discussion related to current practice, health professionals also reflected on opportunities and ideas for improving care for people living with FND. Key focus areas that emerged include:
Developing systems and tools for communication and collaborative working across silos
Enabling multi-disciplinary care through understanding patient goals and setting up multi-disciplinary team (MDT) goals and shared access to information on SCI Store
Developing a coordinated pathway that works across boundaries to link different services and sectors
Visual tools to enable health professionals’ understanding of the person’s experience of their condition and their health and care interactions to ensure tailored, person-centred care
Developing resources for patients to support an early understanding of FND, and signposting them to appropriate resources for further information
Training and education for primary and secondary care health professionals to increase their confidence in diagnosing FND and capacity for providing ongoing reassurance and support to people living with FND
Figure 2. Opportunities and ideas for improving care from the perspective of health professionals
future EXPERIENCE OF CARE
Working in three groups to review each of the lived experience maps alongside the scoping review insights on care pathways for FND, workshop participants reflected on future ways of working and developed ideas for the future pathway for FND. A synthesised map of the future experience pre-, during and post diagnosis is provided below. A number of questions on how might the future pathway be supported through developing/adapting services, tools, resources and ways of working have also emerged, and have been highligted at the bottom of the map for further exploration during the final workshop with health professionals.
Figure 3. Emerging ideas for future care pathway for FND. Please download a copy of the map here.
The final workshop in Stage 2 will focus on identifying commonalities across the emerging future pathways for FND, IBS and Fibromyalgia, and explore responses to some of the ‘how might we..’ questions to understand opportunities for new ways of providing care for people living with a broad range of functional disorders.
To return to the main page ‘Redesigning the Care Journey for People Living with Functional Disorder’, please follow this link.
Authored by Sneha Raman, Angela Bruce and Gemma Teal, October 2021.
