Get involved in improving Crohn’s and Colitis care

This page explains the ways you can influence and get involved in improving healthcare, and gives some practical tools and resources to support you. These are: 

• Patient Panels
• Service open days
• Campaigning
• Influencing health services
• Tools and resources 
• Getting involved at Crohn's & Colitis UK

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.

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.
• Provide feedback or complaints directly, through PALS or, via 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. Ask your IBD team if they are holding any service open days soon.

Campaigning

We’re campaigning across the UK to increase awareness and understanding of Crohn’s and Colitis. Too many people do not have access to high-quality care, services, and support – from diagnosis and flares to employment and benefits. We won’t stop campaigning until this changes and, with your help, change can happen sooner. Please join our campaigners’ network today and be the first to know about new campaigns, petitions, and consultations and how your voice is making a difference.

Below are some of the ways you could influence health services:

• Go digital, tell your personal story 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, The Alliance, 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.

There’s so many other simple and rewarding ways to get involved with our work:​

• 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. 
• 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.