This means people being supported to look after their emotional wellbeing as well as managing their symptoms.
The Policy, Public Affairs and Research team are embarking on a project on self-management for IBD, informed by patients, clinicians, existing research and other organisations working in this area. As part of this, we are aiming to develop a position statement on self management. We want to find out what the term 'self-management' means to people with IBD and what kind of support people need and want in order to self-manage their condition.
We want to start by understanding what good self-management looks like for people living with IBD around the UK. To help provide some baseline information we have created a short survey aimed at people with a diagnosis of IBD. The survey is anonymous and takes no more than 5 minutes. It closes at the end of September.
This survey is an opportunity for people to tell us about their experiences;
What does self-management mean in your life?
What support have you received from health professionals and services?
What changes would you make to the support available?
We are asking people to think holistically about what helps them to cope and enjoy life, not just the medical treatment they receive. Even if you have never heard of the term ‘self-management’ or you are not sure what it means in practice, we would urge you to share your views. This information will be vital to help Crohn’s and Colitis UK to understand what it takes to manage IBD.
Nancy Greig,
Health Policy and Public Affairs Officer, Crohn's & Colitis UK
This is a UK–wide project, but if you live in Scotland and would be interested in taking part in a focus group in September or October in Glasgow to support some work being taken forward by Scottish Government to improve self management support for people living with IBD, there is the option to leave your details at the end of the survey.
For people in other areas, there will be a number of other opportunities to contribute to this project as it progresses and we will keep people updated via social media and the Crohn’s & Colitis UK website.
