How we put people with Crohn's and Colitis care at the heart of their care in Sheffield

Sharing knowledge, skills, and experience

Krupa: I was involved with putting together the logic model - in short, this is the model that sets out what we are trying to achieve and how. It was a really important piece of work as often it is easy to get caught up in the small details and this gave us the opportunity to remind ourselves of the “bigger picture” and what we are looking to achieve with AWARE-IBD.

All the committee members have our own experiences to draw upon and, together, I feel that we cover a wide range of bases. As a group, we make sure that the project stays focussed on the patients even when it makes things a little more difficult or challenging. 

Paul: As an ally, I am determined to do everything I can to ensure that LGBTQ+ voices are heard in the AWARE-IBD project.  I found previous research funded by Crohn’s & Colitis UK which identified additional needs for LGBTQ+ patients.  I am holding the project team accountable (in the nicest and most constructive way, obviously) for ensuring that LGBTQ+ people participate in this project.

Vicky: I have recently had an interview to discuss my involvement with the POC.  How we interact? What I’ve been doing, what is going well and what could have been done better? I am also excited to be getting involved in chairing sessions in the community to co-produce a toolkit to upskill people with Crohn’s and Colitis to share what matters to them during medical appointments.

Making an impact

Krupa: The POC have helped in making sure the patients are kept at the forefront - whether it is thinking about how to recruit patients to the study or the best forms of communication when dealing with IBD patients.  This has been key in the early stages when we have been considering logistics and how best to set up the project.  This is the first project I have worked on with patient involvement and it has been really encouraging to see how open the project leadership group have been to our suggestions.  

Paul: By providing feedback on specific issues when requested and overseeing project documents routinely, the POC has ensured that the voice of the patient is heard loud and clear by the project team at every stage. We bring our lived experience to bear on the project and hold the team to account.

Vicky: I'm proud to be a part of this project and enabling patients to say what matters to them and communicate the type of care that they want to receive.

Why get involved in research?

Paul: This sounds really obvious, but doctors, nurses and scientists can't fix some problems unless patients speak up and say what they are.

Krupa: One of the things that hit me hardest when I was diagnosed with Crohn’s is that it is a lifelong disease, with no cure. This makes research into Crohn's and Colitis even more important as any advances could have big impacts on our quality of life. It is important for us to get involved as we are able to provide a unique viewpoint and focus research on what is most important to those that it seeks to help. My hope is that research will be increasingly patient centred and, ultimately, produce results that we can all benefit from much more.

Vicky: By getting involved with research, this is a chance to make a difference for those with IBD, improve care, medication, treatment, diet and so much more. By working on the AWARE-IBD project, it has given me the opportunity to hear other points of views, ideas, and opinions.  I have learnt how to improve my skills on working as part of a team.