Making patients’ voices heard

Work has started on AWARE-IBD, an exciting new collaborative project that aims to put people with Crohn’s and Colitis in charge of their care. 

Over a period of three years, we are working with Sheffield Teaching Hospital and the University of Sheffield to improve Inflammatory Bowel Disease (IBD) services for people living with the conditions. Importantly, this is being led by people with Crohn’s and Colitis who use those services.  

While the project is being delivered in Sheffield by Professor Alan Lobo, the learnings from it will lead to better outcomes for people who live with Crohn’s and Colitis across the UK. The project will run until February 2024.  

Crohn’s & Colitis UK Health Services Manager Rachel Ainley says: “Everyone with Crohn’s and Colitis who receives their care at Sheffield Teaching Hospital will be invited to be part of the project in a way that is accessible to them. 

“To help improve the IBD service, we’ll be using questionnaires to make visible what is important to people living with Crohn’s and Colitis. We’ll use this information to track how changes to the service are being experienced by those using it.” 

The charity VoiceAbility will ensure that the voices of a diverse range of people are heard across the project, and that changes to the service are inclusive. 

Krupa Gupta, one of the Patient Oversight Committee members, adds: "I was diagnosed with Crohn’s in 2013. Over the last eight years, I have had two surgeries, been on six different types of medication and had an untold number of tests. It was only five years post-diagnosis that I got a handle on how to work with the IBD services within my hospital to manage my Crohn’s. This is why the AWARE-IBD project is so important – it could save years of optimised support that patients may be missing out on." 

The project is funded by The Health Foundation, an independent charity focused on improving health and healthcare in the UK. It is one of four projects nationwide that bring together third sector organisations and the NHS under a new programme called Common Ambition.  

Crohn’s & Colitis UK CEO Sarah Sleet says: “This project has the potential to teach us lessons we can use across the UK and is a unique opportunity for thousands of people with Crohn’s and Colitis to get involved and lead to real changes. 

“We’re grateful to The Health Foundation for selecting us to take forward this incredibly important work.”