Patient Engagement Toolkit

We’re working to help everyone affected by Crohn’s and Colitis.

We want people living with Crohn’s or Colitis, their family, carers and healthcare professionals - to shape health services, together. We understand that improving health services requires everyone’s voice to be heard.

That is why we’ve designed this patient engagement toolkit, to make it easy to get involved and importantly, to work together.

We are striving to make sure that everyone living with Crohn’s and Colitis receives the best possible care and treatment at each point of their patient journey from their first GP appointment to self-managing their condition after treatment or surgery.

Rukshana Kapasi, Director of Health Service Development,
Crohn's & Colitis UK

Who is this toolkit for?

Part one of the toolkit is for people living with Crohn’s or Colitis and anyone affected by the conditions, such as their family and carers. It tells you how you can get involved with improving, designing and developing good IBD health services. And how you can get involved with Crohn’s & Colitis UK.

Part two is for healthcare professionals working in IBD services or Primary Care. It tells you how to better engage, educate and inform people using your service. The toolkit guides you through a range of methods for working with people and is full of practical resources to support you.

What is Patient Engagement?

There are many different ways of involving patients in designing health services. The diagram below highlights some of them. At one end of the ladder the patient is given information and services that they have little or no control over. At the other end of the ladder patients work together with healthcare professionals, managers and commissioners to ‘co-design’ and ‘co-produce’ health services. The ladder can help you work out where you are and where you want you to be with different activities.

Click here to view the ladder diagram as a larger PDF

Your voice is important

Our position statement on involving people with Crohn’s and Colitis in Improving Health Services explains that patient engagement is at the heart of designing, developing and monitoring good services for people with Crohn’s or Colitis. We want to see the same high-quality care and support for everyone with Crohn’s or Colitis.


Find out more about co-production – where patients and healthcare professionals work together to design services:

Scottish Co-Production Network 

'Co-production by Spice' YouTube video 

'An introduction to co-production' by Changing our Lives