REDESIGNING THE CARE JOURNEY:
Fibromyalgia
OVERVIEW
This page provides an overview of the project process and findings focusing on redesigning the care journey specifically for people living with Fibromyalgia.
People living with fibromyalgia experience widespread chronic pain, and other symptoms that can have a major impact on everyday life. Diagnosis and management of fibromyalgia is complex, leading to people usually waiting a long time for a diagnosis and referral to specialists.
To better understand the challenges in diagnosis and management from the perspective of people with lived experience, two semi-structured interviews were conducted with people living with fibromyalgia and captured using a bespoke experience mapping tool. The experience maps were 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 for the map. These anonymised maps aimed to support health professionals and managers to understand the experience and perspectives of individuals receiving care, and use this to inspire new ideas for future pathways. Rather than having people living with fibromyalgia attend in person, this approach enabled healthcare professionals to see and reflect on the experiences in advance of the session, speak freely about the challenges they personally experience in their role, and collaboratively think about how they could work differently to better meet the needs of people living with fibromyalgia.
The workshop was organised with a wide range of health and care professionals across NHS Grampian who deliver care for people living with fibromyalgia to consider new care pathways based on the experiences of those living with fibromyalgia. Participants included rheumatologists, clinical psychologists, a consultant psychiatrist, occupational therapists, a physiotherapist and GPs. In the workshop, participants reflected on the challenges they face with current ways of delivering care for people living with fibromyalgia and discussed areas for improvement, collaboratively reviewed the experience maps generated from the interviews (which were provided in advance of the workshop), and developed ideas for the future pathway by responding to what matters to people with lived experience of fibromyalgia.
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 fibromyalgia, using the visual summaries. Lived experience maps capturing detailed insights from each of the interviews are also available for download.
LILY’S EXPERIENCE
Lily lives on her own, but has a close circle of family and friends who she stays in regular contact with. Her condition, however, has had a big impact on her social life. She believes her condition is a result of her past trauma.
A visual summary of key insights related to Lily’s current experience and opportunities for change is provided below. For further information on Lily’s experience, please download and view Lily’s experience map.
Figure 1: Lily’s experience map.
“... they didn’t look at what my trauma had been in my life, they didn’t look at what I was going through; all they looked at was that I was overweight and I smoked.”
ANNIE’S EXPERIENCE
Annie is a young woman living on her own in a little flat nearby the harbour. She used to be very sociable - working with the public and having different hobbies - but has a quiet life now because of her condition.
A visual summary of key insights related to Annie’s current experience and opportunities for change is provided below. For further information on Annie’s experience, please download and view Annie’s experience map.
Figure 2: Annie’s experience map.
“[When diagnosed] It felt like a bit of a relief because I’m not imagining it, the doctors have given it a label [...] just having a label and not imagining this isn’t all in my head, when people ask me what’s wrong, I can say I have this and they don’t just think ‘oh she’s just having a moan’.”
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 fibromyalgia from their individual perspectives, and as a group critically reflected on the current ways of working in Grampian. Four key themes emerged from this discussion.
Many of the identified challenges are related to diagnosis. The importance of building trust, managing expectations, and giving the correct explanation were discussed by participants. The need to validate people’s experiences was stressed but approaches to diagnosis and care that explicitly do this were seen to be lacking. Participants questioned the administrative need for diagnosis before making referrals to support people with their symptoms, given how long this may delay care. However, participants perceived that many patients also need a clear diagnosis to move forward. Participants suggested that in many cases, the GP can recognise and make a diagnosis just by listening to the patient, avoiding referral to secondary care and unnecessary investigations. However, some health professionals still lack awareness of fibromyalgia as a diagnosable condition, particularly in primary care.
Integration and coordination of care included challenges relating to seeing the whole person and tailoring care to meet their needs, and the need for wider involvement from a range of different health professionals and third sector organisations. Holistic conversations were seen to be challenging in the time available to the GP. Patients often present at crisis points in their journey, making it necessary to address their immediate concerns rather than focus on the big picture. While participants generally saw the ideal approach as managing patients in primary care with referral to secondary care for complex cases, they identified a need to involve AHPs, link workers, and third sector organisations to strengthen community-based support.
The importance of validating and understanding the emotional experience of people living with fibromyalgia was seen to be vital in supporting them. This was challenging due to the lack of psychological input in the early stages to understand the person’s sense of loss, worries, anxiety or difficulty in adjusting. Identifying history of trauma and emotional or social triggers was seen to be challenging but essential, due to the impact on diagnosis and care. Participants highlighted the need to support health professionals in dealing with people’s health anxieties, particularly when there is uncertainty about how best to support them. Support was also needed for family members and friends to understand the experience and impact of the condition on the person and how best to support them.
The final theme related to challenges caused by the separation of physical and mental health into two distinct pathways. This was seen to be a barrier to integrated care, leading to increased use of resources and an over-reliance on medication. Participants highlighted the need to build confidence in GPs to establish a twin-track approach to mental and physical health, particularly when patients tend to push for physical symptoms to be dealt with and may be hesitant to explore alternative routes such as referrals to psychology. Capacity challenges in adult mental health services were highlighted as a critical barrier to integrating psychological support in the care pathway.
Figure 3: Challenges of providing care for people living with fibromyalgia from the perspective of health professionals.
OPPORTUNITIES AND IDEAS
Working in three groups to review each of the lived experience maps alongside the scoping review insights on care pathways for fibromyalgia, workshop participants reflected on current and future ways of working and developed ideas for improving care for people living with fibromyalgia. Key focus areas that emerged include:
Improvement to the pre-diagnosis experience by enabling early support to be accessed based on symptoms.
New tools for diagnosis: Developing triage and screening tools to support diagnosis, and build confidence in GPs to make a diagnosis. Resources such as leaflets to support diagnosis and onward referral, in particular leaflets to explain the referral process.
Integrated care managed in primary care by increasing GP confidence to diagnose, providing specialist input and services in community setting, involving AHPs and OTs, and linking up with third sector.
Developing a new role for a fibromyalgia specialist (or Functional Disorders specialist) based in the community to coordinate care and ensure equity of access.
Integrating physical and mental health through a ‘twin-track’ approach.
Implementing psychoeducation and psychological treatment in the early stages, with the option to self-refer to regular psychoeducation sessions and online CBT courses.
Supporting people to feel less isolated and be with others who understand their emotional experience, through community-based peer support groups and group appointments.
Figure 4: Opportunities and ideas for improving care from the perspective of health professionals
FUTURE EXPERIENCE OF CARE
A synthesised map of the future experience pre-, during and post diagnosis is provided below. A number of ‘how might we…’ questions have been posed along the bottom of the map. These represent ambitions for care that emerged which require further exploration during the final workshop with health professionals.
Figure 5: Emerging ideas for future care pathway for fibromyalgia. 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, Silvia Cantalupi and Gemma Teal, July 2022.
