REDESIGNING THE CARE JOURNEY:
irritable bowel syndrome (IBS)
OVERVIEW
This page provides an overview of the project process and findings focusing on redesigning the care journey specifically for people living with Irritable Bowel Syndrome (IBS).
People living with IBS experience abdominal pain and disordered bowel habits, which can impact on their quality of life. Diagnosis is based on the symptoms the person reports to their doctor after other causes have been ruled out.
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 IBS, 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 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 IBS 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 IBS.
The workshop was organised with a wide range of health and care professionals across NHS Grampian who deliver care for people living with IBS to consider new care pathways based on the experiences of those living with IBS. Participants included a Gastroenterologist, Psychiatrist, Service Manager, Community Dietitian and Psychologists. In the workshop, participants reflected on the challenges they face with current ways of delivering care for people living with IBS 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 IBS.
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 IBS, using the visual summaries. Lived experience maps capturing detailed insights from each of the interviews are also available for download.
LUAP’S EXPERIENCE
Luap lives in a village near Aberdeen with his wife. He has three grown children, and grandchildren who visit often. He has been living with IBS for 40-50 years, and he has accepted and is resigned to living with it. He liked travelling, walking and climbing but is unable to do these anymore. He feels that by nature he is well. There are often specific things that cause him to be unwell, and finding the cause and removing it is his way of dealing with IBS.
A visual summary of key insights related to Luap’s current experience and opportunities for change is provided below. For further information on Luap’s experience, please download and view Luap’s Experience Map.
Figure 1: Luap’s Experience Map.
“...for a long time, well perhaps I was more aggressive, demanded they solve it, but now I recognise that until I get my faecal transplant, they won’t solve it.”
TESS’ EXPERIENCE
Tess is a former teacher who took voluntary redundancy and moved from England to Aberdeenshire 6 years ago. She currently lives on a farm with her partner and a wee dog. She loves the quiet life, and keeps herself busy with gardening, walking and taking care of the farm. She has been recently diagnosed with IBS although she has had symptoms from early childhood, and she has been living with FND for 15 years.
A visual summary of key insights related to Tess’s current experience and opportunities for change is provided below. For further information on Tess’s experience, please download and view Tess’s Experience Map.
Figure 2: Tess’ Experience Map.
“I don’t know, I’ve just had it... I just dealt with it. I haven’t specifically asked for help until the pain... do you know what I mean... and realising then, ‘Oh gosh, it’s all linked!’”
CAT LADY’S EXPERIENCE
Cat Lady is in her early forties and lives with her 10 year old child and two cats in Aberdeen. She has learned to manage her multiple conditions, including IBS, for over twenty years. Key people in her life who support her are her father and her downstairs neighbour, and she also has a friend who is living with IBS who she discusses her symptoms and concerns with. She is currently working part-time as a hotel receptionist.
A visual summary of key insights related to Cat Lady’s current experience and opportunities for change is provided below. For further information on Cat Lady’s experience, please download and view Cat Lady’s Experience Map.
Figure 3: Cat Lady’s Experience Map.
“I knew there was something wrong with me and the doctor was like, ‘No, it’s this, try this’, and then I was like, ‘No, it’s not that, it’s something else’, and then they give you tablets, tell you to go away and you’d be back a month later with the same problem.”
UNDERSTANDING CURRENT WAYS OF WORKING
At the beginning of the workshop, health professionals presented key challenges they face when delivering care for people living with IBS from their individual perspectives, and as a group critically reflected on the current ways of working in Grampian. They then split into three groups, each focusing on a different person’s experience map. They reflected on the challenges experienced throughout the person’s healthcare journey and their aspirations for care in the future. Four key themes emerged from this discussion:
Significant barriers to self management were identified due to the often complex and prolonged nature of health and care journeys for people living with IBS and the impact this has on their confidence and ability to cope. The high prevalence of multimorbidity in people living with IBS means they may interact with many different health professionals and struggle to understand how to manage symptoms and identify to which of their conditions they relate. Past experiences of trauma and chaotic lives may impact on relationships with health professionals and ability to engage in self management. Researching symptoms on the Internet can lead to increased anxiety, unnecessarily restricted diets and use of non-evidence-based or harmful treatments. For some, the restrictive impact of IBS on their ability to live their lives and embarrassment in coping with bowel problems can affect their mental health. Feelings of hopelessness and shame can set in due to a perceived inability to take control of their condition(s).
Professionals described essential conditions for high-quality conversations between health professionals and people living with IBS that are particularly important in building trusting relationships and a language for dialogue early on in the person’s journey. This theme builds on the first, as the highlighted complexity can make it hard for the clinician to see the big picture of what is happening across all the person’s health interactions. The importance of taking time to listen to the person’s story and work with them to identify patterns was stressed, resulting in a need to invest time in a longer first appointment. The diagnosis should be made positively, and reinforced in secondary care to support the person to accept and learn about their condition. Expectations need to be managed in these early conversations due to the complex pathology of IBS, and the need for trial and error to find the correct treatment for the person to ensure they do not disengage when earlier treatments are not successful. For some, there could be embarrassment and shame in talking about bowel problems, meaning professionals need to carefully support these conversations with empathy and lack of judgment and give them the space and language to describe their experiences.
“...the dialogue can be a little bit impoverished to start with... to talk about their journey and their experiences through their medical investigations and all that very medical and technical language... [you] try and enrich that discussion with the patient where you start to think about the consequences for them, who they are as a person, what kind of things have happened to them in their life that may play into their experience of illness, their interaction of power structures, their illness and how all that kind of works.”
Participants highlighted the importance of multidisciplinary collaboration in caring for people living with IBS and providing support for both physical and mental health in treating IBS. Psychology support did not feature in the three care experience maps; based on the challenges described, the health professionals felt all three people would benefit from this input. Opportunities to collaborate and address patient challenges in a holistic way were identified as lacking in secondary care. We heard from clinicians overcoming this through time-consuming workarounds such as joining another clinician’s clinic appointment or admitting patients to hospital for complex cases. The essential role of dietetics in supporting evidence-based treatments such as Low FODMAP was stressed, and the disconnect between gastroenterology, dietetics, and psychology due to the need for GPs to make referrals (rather than e.g. the gastroenterologist referring directly), although again, we heard of workarounds to overcome this. This theme also included challenges in linkages between primary and secondary care and the need to support GPs to know what resources are available and to consider early support for mental health when treating people living with IBS. The need for pharmacist input was also identified due to the prevalence of multimorbidity in people living with IBS and the adverse impact that medications prescribed for other conditions (e.g. chronic pain or mental health) can have on the bowel.
Disparity in people’s care experiences was highlighted, with access to professionals, treatments, and resources highly dependent on which health professional the person sees. Alongside this, professionals discussed the need to tailor pathways to the person and appropriately use limited resources by screening (using evidence-based tools) and triaging based on the burden of disease (low/medium/high). We heard about attempts to tackle long waiting times for appointments through asynchronous appointments, and online and printed resources that support people living with IBS (and other conditions) to access help before their appointment.
Figure 4: Challenges of providing care for people living with IBS 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 IBS, workshop participants reflected on current and future ways of working and developed ideas for improving care for people living with IBS. Key focus areas and ideas that emerged include:
Increasing access to mental health support, supported by:
A prompt for the gastroenterologist to refer to psychology at the six-month review appointment.
Introducing psychological self-care advice early on in the pathway. This would give education about identifying triggers, techniques for soothing and calming themselves and other guidance to help them problem solve in the future. This could potentially be delivered in groups.
Online resources for self management and treatment verified by an official source (i.e. NHS Grampian, NHS Inform) to reduce the need for people to use Google to search for information. This would include video content, potentially created by local clinicians. Existing resources such as online CBT and self management advice could also be offered for people while they are on the waiting list.
Training for future health professionals should build the skills to communicate in empathic, non-judgmental and non-stigmatising ways.
Tailoring the pathway to the person living with IBS, with ideas including:
Patient-initiated pathways and patient-triggered return to ensure support is available when needed. This would enable care to be predominantly community based, with patient-led referral into secondary care.
The use of recognised screening tools early in the pathway to determine the most appropriate level of intervention to tailor the pathway to the person, and to identify people who would benefit from a referral to psychology. This also includes the use of screening to identify potential undiagnosed comorbidities given this is a feature of IBS.
A pathway that includes a range of options which could be tailored in collaboration with the person to generate a supported self management plan and follow up.
Support holistic conversations and better integrated care, with ideas including:
Specialist IBS multidisciplinary clinics for complex cases to provide a 'one-stop' clinic with patients seeing the gastroenterologist, dietitian and psychologist, with access to a pharmacist for medication review.
The groups discussed who was best to see the big picture of the person's health, coordinate care and signpost to resources. While for some this might be the GP, it was identified that a new specialist nurse/nurse practitioner for functional disorders would enable much needed person-centred and holistic conversations that integrate all aspects of their health. Each nurse could specialise in two or three functional conditions.
The role of the third sector in holding these holistic conversations was also raised, however it was felt that clinical knowledge was needed, particularly in the early stages, to look for red flags and ensure the person had received all the necessary tests and a positive diagnosis. However, third sector involvement was felt to have particular strength in providing a space for longer conversations that normalise language around embarrassing symptoms and reduce stigma.
More multidisciplinary collaboration, supported by:
The opportunity to use MS Teams for more multidisciplinary conversations between professionals. This included a regular monthly meeting for GPs and gastroenterologists to discuss challenging cases, similar to a model currently employed for diabetes.
Enabling secondary care professionals to make referrals (e.g. gastroenterologist referring a patient to psychology) to avoid the GP needing to complete all these tasks.
Figure 5: 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 6: Emerging ideas for future care pathway for IBS. 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 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.
