Toolkit for people with Crohn’s or Colitis

 

We believe Crohn’s and Colitis care can only improve when people with the conditions are listened to and involved.

 

Here we’ll explain the ways you can influence and get involved in improving health services. We’ll also give you some practical tools and resources to support you, and explain other ways you can get involved with Crohn’s & Colitis UK.

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 health services, click here to find out more.


A patient panel is a group of people with Crohn’s or Colitis who use the same hospital 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.

Rebecca
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.

Other ways to get involved with your hospital:

  • Collaborate with a healthcare professional around your own care, such as through shared decision making, or personalised care [Link to IBD UK website].
  • speak to your IBD team about IBD Patient Panels or other opportunities for you to get involved.
  • Provide feedback or complaints in person, via a questionnaire, an online feedback site like Care Opinion.

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.


There are a few other ways you could get involved and influence health services:

  • Go digital, tell your personal story as a media volunteer or by creating a blog or vlog.
  • 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.

See below for some tools and resources to support you to get involved in improving health services and to share your experiences:

  • You can find out our definition of patient engagement and look at our useful tool to categorise the types of patient engagement here.
  • The European Patient Ambassador Programme is an online programme that aims to introduce skills and knowledge that will support you to represent your experiences successfully.
  • Take a look at our Accessibility and Inclusivity Guide, it can be useful to be aware of these issues. By understanding barriers to access, you can challenge organisers and service providers to address these areas if required.

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

If you area Healthcare Professional looking to involve people with Crohn’s and Colitis, please take a look at our Patient Engagement Toolkit for Healthcare Professionals.