Crohn’s and Colitis Voices: feeling in control of the unpredictable

To mark Self Management Week, Nancy explains why defining the term for people living with Crohn's and Colitis has been a challenge.

As Self Management Week is upon us, it seems an opportune time to reflect on some of the work I have been leading on with the Health Service Development Team at Crohn’s and Colitis UK (this link will take you away from our website) around the question; what does self management mean for people living with Crohn’s and Colitis, otherwise known as Inflammatory Bowel Disease (IBD)?

This has long been a tricky question for the organisation. Crohn’s and Colitis UK represent over 300,000 people in the UK living with a lifelong condition that many have never heard of. Because of the stigma and misunderstanding surrounding IBD, thousands of people are suffering in silence.

Unpredictable and invisible

Crohn’s Disease and ulcerative colitis (this link will take you away from our website) are invisible conditions causing inflammation and ulceration of the bowel with symptoms including pain, bleeding, and diarrhoea and often accompanied by fatigue, joint and skin problems, anxiety and depression. They are lifelong and incurable conditions affecting all age groups, but often emerging in the teens and twenties. People experience unpredictable flare-ups and periods of remission and the conditions can have a devastating effect on people’s quality of life, their work, education, family and social life.

To make things more difficult, the concept of self management in relation to these,  relapsing and remitting conditions was unclear. There were differences of opinion, even within the organisation and among health care professionals.

Self management is key

As well as working to improve services and raising awareness, Crohn’s and Colitis UK gives people hope, comfort and confidence to live freer, fuller lives and we recognise self management is key to this process.

Over the past year we have collaborated with people living with Crohn’s and Colitis and health care professionals to examine and define what self management means, and how it can be better achieved.

Differing perceptions

Through our scoping work we found that perceptions of the term often differ. Some clinicians see self management of IBD in narrow terms – people managing their own medication within certain parameters. Clearly, that is part of the process, but self management is also about people keeping well as far as they possibly can, feeling in control of their condition and being an equal partner in managing it together with health services.

It’s also about people self managing their physical and mental wellbeing and whole lifestyle, fitting their condition around their work and family. This can mean stress reduction, and strategies people use to cope with their condition every day, such as mapping where the toilets are when they go out.

“For me, self management means that I am able to live my life as normal, or almost as normal, despite my disease. It means that my options and opportunities are not limited because of my disease.”
Respondent to survey on self management (2017)

Component parts

Following on from our scoping exercise we produced a position statement which sets out what we see as the key ‘component parts’ of the IBD self management jigsaw, i.e.

• A responsive IBD service that is easy to access when needed
• IBD services with resources to support self management
• IBD Health Care Professionals who are confident and knowledgeable about self management
• Good relationships between people with IBD and Health Care Professionals
• Good quality information and support for people with IBD to feel empowered and in control
• Access to tools, plans and support to manage treatments, symptoms, and flare-ups
• Access to emotional and psychological support
• Access to e-health and technology resources.

Listening to what matters

Subsequently, and as part of the Scottish Government’s Modern Outpatient Programme (this link will take you away from our website), people living with Crohn’s and Colitis, nurses, consultants, dietitians, GPs and staff from Crohn’s and Colitis UK met at a workshop in Perth to co-design and develop two new tools:

• A new, wallet-sized ‘flare card’. The idea was based on a similar card created and evaluated in NHS Greater Glasgow and Clyde   (this link will take you away from our website) . It includes details of key symptoms during a ‘flare-up’, what to do next and where to get help quickly. It lists drug side effects to watch out for and supports the interface with Primary Care, signposting people to tests that can help them to ‘get on top of’ a flare-up before it gets out of control. It also features advice on safe medication tweaks for people on certain types of medication.
• An Individualised Care Plan designed to support person centred conversations and a more holistic approach during consultations. Based on principles of Care and Support Planning, this tool was developed by listening to what mattered to people in their interactions with their consultant or IBD nurse. It prompts individuals and healthcare professionals to focus more on mental wellbeing and activities of daily living rather than the number of bowel movements and treatments.

“A fundamentally different approach”

Prototype versions of both tools will be tested and refined in at least two or three sites before being rolled out across Scotland in 2019. One gastroenterologist who took part in this process reflected:

“A recent workshop to design self management tools for NHS Scotland was the first time I have been involved in a piece of work that is truly co-produced between patients and healthcare professionals right from the start. It has been a fantastic experience. This was a fundamentally different approach for me which has made it easier to understand and consider the patient’s perspective; while a bio-medical model of self management needs to play a small part in supporting patients I now understand that what patients need and want is much broader. I see no reason for all healthcare professionals not to take this approach.”

At Crohn’s and Colitis UK, we believe that self management can enable people living with the conditions to live fuller, freer lives by empowering them to take control of their condition and that by developing these tools, IBD services in Scotland can lead the way for the rest of the UK.

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