Self-management: Position statement

Self-management can enable people with Crohn’s or Colitis to live fuller, freer lives by empowering them to take more control of their condition.

What we believe

For people with Crohn’s or Colitis self-management means being treating as a whole person. It means thinking about a person`s emotional and psychological wellbeing as well as the management of their symptoms and treatments, but conflicting and confusing information often prevents Health Care Professionals and people with IBD from fully understanding what is meant by the term`self-management’.

We want to change that.  

We believe that the vital components of self-management for Crohn’s and Colitis are:

  • A responsive Inflammatory Bowel Disease (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 Crohn's and Colitis 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

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.

What we did: scoping and methodology

Focus groups and responses to surveys highlighted that misconceptions, terminology, and definitions of self-management vary widely among people living with Crohn’s or Colitis, Health Care Professionals and the general public. We found that some people believed it meant alternative therapies, some felt it was a vague concept and others confused it with terms like self-care or patient empowerment. 

I have never heard of the term self-management. To me that would mean managing things in your life yourself without the help of a carer or anyone else. Just doing it all by yourself.

We discovered barriers to Health Care Professionals engaging with self-management that included lack of skills and knowledge, workforce and organisational cultures. What is more we found a relative lack of evidence around self-management and IBD - despite a lot of evidence around self-management generally. 

We found that people living with Crohn’s or Colitis want to be able to self-manage and take more control of their condition but need better support to do so as there is often no existing culture of supporting self- management within IBD services. 

In reality I'm making up ‘self- management’ as I go along and just feeling my way through what seems right.

Why is this an issue?

What matters to people living with Crohn’s or Colitis  

By looking at what matters most to people living with Crohn’s or Colitis, we were able to see how good self-management would make a real difference to their lives.  

People told us they wanted: 

  •  A two-way, trusting relationship with their Health Care Professionals, with shared decision-making and more consistent relationships over time 

I wish doctors would be more understanding of my situation. It often seems like I'm just my disease and not an actual person to them. I would like them to focus more on how my IBD is affecting my mental health, relationships and daily life.

  • Responsive IBD services they can easily access when needed

When I flare I have no one to call easily. My Gastro Consultant always says call my secretary, but that doesn't normally help as I rarely get hold of her, although they would try and arrange an appointment for me. There are no IBD nurses.

  • A person-centred approach focused on managing medication and ostomies alongside side effects and other conditions. 

  • Good quality information that gives advice on emotional and psychological support, as well as treatments, diet and managing symptoms. 

(I would like) more nutritional support, no one has helped me analyse my food triggers/problems despite me bringing it up regularly. Emotional support. No matter how upset or low I am the IBD service has never mentioned any emotional support for that side of the condition.

  • Help to develop personal strategies to manage symptoms and live well. 

What matters to Health Care Professionals 

By looking at what matters most to Health Care Professionals, we were able to see how embracing self-management for Crohn’s and Colitis would impact on how they treat and support their patients.  

[Self-management] empowers my patient group which in turn reduces the pressure on my limited nursing resource.

Health Care Professionals told us they wanted: 

  • Better understanding of the concept of self-management. Some IBD Health Care Professionals described not knowing enough about self-management and feeling that they were unable to recommend it to patients

[Self-management] empowers my patient group which in turn reduces the pressure on my limited nursing resource.

  • More time and resources like administrative support, planning time, flexibility to test new approaches and make service improvements

I’m very new in post, 5 weeks...we have an IBD helpline which rings constantly for all queries. 

I’m interested in ways to support self-management, as I don’t feel we have anything in place.

  • Better use of e-health and technology like the IBD Registry, online portals, patient-held records and virtual clinics

  • Tools, resources and plans to support people to manage medications and prevent or rapidly treat flare-ups 

  • The ability to support and empower their patients through high quality information and education

[Self-management means] giving patients the tools and information they need at the level they would like it in order to manage their disease and help prevent flares.

What we will do

We want to see self-management fully embedded within IBD services. To achieve this, we will develop tools and resources to support Health Care Professionals and people living with Crohn’s or Colitis. We will continue to work towards a shared understanding of the key components of self-management for IBD. 

{Self-management means} making informed choices regarding treatments, liaising with Health Professionals and being listened to, and keeping as fit and healthy as possible as far as symptoms allow.

What's the evidence?

To identify the vital components of effective self-management for people with Crohn’s and Colitis, we collated IBD-specific evidence from a number of relevant projects and sources.

This helped us give a coherent, consistent definition of self-management that could lead to better understanding among Health Care Professionals and people with IBD: 

  1. Self-management in Inflammatory Bowel Disease (IBD): a rapid summary of published secondary evidence, produced by Anna Milsom at the Scottish Government’s Modern Outpatient programme, October 2017 -  Copies available on request 
  2. Self-management in Inflammatory Bowel Disease (IBD): a rapid summary of published qualitative evidence, produced by Anna Milsom at the Scottish Government’s Modern Outpatient programme, October 2017 - Copies available on request 
  3. Implementing a self-management strategy in Inflammatory Bowel Disease (IBD): patient perceptions, clinical outcomes and the impact on service, Squires SI, Boal AJ, Lamont S, et al published in Frontline Gastroenterology, 29 March 2017 
  4. Reports from our surveys and focus groups - Copies available on request 
  5. NACC Review of self-management, produced by Professor Stanton Newman, Debbie Cooke, Kathleen Mulligan, Cate Barlow, Health Psychology Unit, Centre for Behavioural and Social Sciences in Medicine, University College London - Copies available on request 
  6. Self-management in Ulcerative Colitis: a report of a randomised controlled trial with economic evaluation and qualitative assessment, McColl, Lecouturier, Corbett, Speed, Vanoli, Welfare, Barton , James, Weinel, Devine, Steen, Centre for Health Services Research, School of Population and Health Sciences, University of Newcastle upon Tyne - Copies available on request 
  7. A Powerful Case for Specialist Nurses, by Claire Read, published in Health Services Journal Article 15 February 2017 
  8. Living well with Inflammatory Bowel Disease (IBD): optimising management of symptoms of fatigue, abdominal pain, and faecal urgency/ incontinence via tailored online self management: the IBD BOOST programme, Professor Christine Norton, Professor of Nursing, Faculty of Nursing & Midwifery, King’s College London 
  9. Report from Scottish IBD Nurse Network Reflective practice session, Marianne Brennan, Health and Social Care Alliance Scotland (the ALLIANCE) - Copies available on request 
  10. Crohn’s and Colitis Voices: Why Self-Management is a Balancing Act, by Crohn’s & Colitis UK volunteer Kate Gray  

Further reading on general self-management

Gaun Yersel! The Self Management Strategy for Scotland, published in 2008 in partnership between the Scottish Government and the Health and Social Care Alliance Scotland (the ALLIANCE)

Self Management Fund for Scotland Reports

Nesta: Realising the value: ‘Supporting self-management; A guide to enabling behaviour change for health and wellbeing using person- and community-centred approaches’

The Kings Fund: ‘Supporting people to manage their health: An introduction to patient activation’

The Health Foundation: ‘How engaged are people in their health care? (Findings of a national telephone survey)’

‘Why Health and Social Care Support for People with Long-Term Conditions Should be Oriented Towards Enabling Them to Live Well’, Entwistle, Cribb, Owen

Health and Social Care Alliance Scotland (the ALLIANCE) ‘The Future of Self Management: A Four Nations Summit’ learning report

To comment or respond to our position statement please contact: 

For information and support - 0300 222 5700. 

Published:       June 2018 

Review Date:   June 2019