Toolkit for people with Crohn’s or Colitis

We believe Crohn’s and Colitis care only improves when we listen to the people who experience these conditions, people like you.

Here we’ll explain the ways you can influence and get involved in improving health services. We’ll also give you some practical examples of how to get involved with local services and Crohn’s & Colitis UK.

How you can influence health services

  • Provide feedback or complaints in person, via a questionnaire, an online feedback site like Care Opinion. 
  • Collaborate with a healthcare professional around your own care, such as through shared decision making.
  • ​Go digital, tell your personal story as a media volunteer or by creating a blog or vlog.
  • Get involved nationally. You could join strategic groups or committees such as the IBD Standards Steering Group or the Cross-Party group on IBD in Scotland. These groups help make decisions that influence changes to Crohn's and Colitis care across the UK. You could also join general health organisations to help put the Crohn’s and Colitis community on their agenda, such as Healthwatch or Our Voice.
  • Get involved locally. You can get involved with service improvement work with your local hospital by joining a Patient Panel or a Community Health Council.

How you can get involved in improving health services 

Join our Patient Voices Network and become part of a virtual group of people that are vital in shaping the way services are delivered. 

The Patient Voices Network keeps you up to date with opportunities to work with IBD health services and make sure the voice of the Crohn’s and Colitis community is high on the policy agenda.

A patient panel is a group of people with Crohn’s or Colitis who all use the same hospital services and work with their healthcare professionals to help improve the service.

Getting involved with a Patient Panel is enjoyable and rewarding, as well a great learning experience for both patients and professionals.

Being an active participant in my local IBD patient panel enables me to influence the improvement of IBD services in Wales. Sharing my personal experiences to support others helps me to think positively about my condition.

Patient panel member

Patient Panels can:

  • Give the IBD team feedback on services and offer them the chance to make real and significant improvements.
  • Go directly to commissioners or managers to ask for resources, like a new nurse. Input from patients can really strengthen the case for ‘need’.
  • Act as a sounding board for proposals for service redesign, development and research.
  • Pro-actively suggest developments and service improvements.
  • Inform and empower other patients, parents, carers and young people.
  • Help raise awareness of Crohn’s and Colitis at a Trust or Board level.

► See our Top Tips for running an IBD Patient Panel.

For more information on patient panels, please read our information leaflet or contact our Patient Engagement Team.

An open day is a free event that gives people using a service, including parents, carers and newly diagnosed patients, the chance to meet their healthcare team.  You can also meet other people with Crohn’s or Colitis, talk to staff about your experience and suggest ways the service could be better.

► See our Top Tips for holding a Crohn’s and Colitis Service Open Day.

It’s simple and rewarding to get involved:​

  • The Readers Panel. You don’t need any special knowledge or training to join our Readers Panel – you just need to be living with Crohn’s or Colitis or be a parent of someone with the condition. We’d love your help to make sure our information and publications are clear, relevant and helpful for people just like you.

If someone with Crohn's or Colitis benefits from reading an information leaflet that I have helped to develop then that makes it all worthwhile.

Readers Panel Volunteer
  • Volunteering. Our amazing volunteers make so much of our work possible. There are many ways to get involved depending on your interests, how well you are and how much time you have to give. Find out more & get involved today.

I was diagnosed 37 years ago and remember the lack of support then. Now we see young people coming into our groups. What drives me is reaching out to someone, particularly when they are diagnosed, because it’s a very lonely place.

Stephen, Volunteer
Thurrock & Basildon Support Group
  • Campaigning. Together, we can make our voice heard - we’ve already changed policy locally and nationally. Our campaigns are installing accessible toilet signs across the UK, helping secure more IBD nurses and breaking the silence about these conditions. Add your voice to our campaigns today.
  • Raise awareness. Your voice is important. We’re always looking for people to help raise awareness of Crohn's and Colitis. This could be by talking to a journalist, giving a quote for our publications or sharing your story in our members magazine, Connect. You can tell us about your experience here. 

  • Support and be supported. There’s a huge online community of people with Crohn’s and Colitis, where you can find support and share your personal experiences. Here are some great places to start.

  • Take part in research. We’re driving world-class research - funding talented scientists to improve treatments and ultimately find a cure. Whether you’re a scientist, someone living with Crohn’s or Colitis or a family member or friend without the condition – you can help.

Read the toolkit for Healthcare Professionals

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