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VoiceAbility works with inflammatory bowel disease patients to develop empowering toolkit

30 June 2023

A toolkit to support people living with inflammatory bowel disease (IBD) to communicate confidently with healthcare professionals has been launched in Sheffield.

People living with conditions such as Crohn’s disease and ulcerative colitis have worked with the IBD team at Sheffield Teaching Hospitals NHS Foundation Trust on the content of the toolkit, which has been created in partnership with voice and rights charity VoiceAbility.

The toolkit guides patients through appointments and self-advocacy, describes symptoms, has pain and fatigue scales, and also has a link to Crohn’s & Colitis UK’s appointment journal where patients can write down questions they may want to ask in appointments

Sam’s experience

Sam McCormick, who was diagnosed with Crohn’s disease in 2002 at the age of 15, is among those to have shaped the toolkit – which has been released in time for National Co-production Week which starts on Monday (3 July).

Sam, who lives in Sheffield where she’s a patient at the Royal Hallamshire Hospital, said: I believe the toolkit will be beneficial for patients as it empowers them to take ownership of their health. 

I’d have loved a toolkit like this when I was diagnosed, it would have made appointments simple and relieved many worries. It can be difficult and sometimes embarrassing to describe symptoms, particularly when first diagnosed, so having symptom descriptions and a pain scale will benefit both patients and clinicians. 

The toolkit is fabulous and I’m excited to see it empower patients to have a say in their healthcare.

The AWARE-IBD project

Sam is also a patient coach for the wider AWARE-IBD project in Sheffield, which aims to redesign inflammatory bowel disease services by working with people who have IBD.

The three-year project is being led by Crohn’s & Colitis UK in partnership with Sheffield Teaching Hospitals NHS Foundation Trust and the University of Sheffield, and is part of the Health Foundation’s Common Ambition programme. 

The Health Foundation is an independent charity committed to bringing about better health and health care for people in the UK, and selected Sheffield as one of four UK projects from more than 350 applications. 

Nick Yates, who was diagnosed with Crohn’s disease in 2016, is a member of AWARE-IBD’s Patient Oversight Committee which has also been involved in the toolkit’s creation and is there to represent the views of patients across the UK.

He said: The toolkit helps you think about how you feel and how to express that effectively to your healthcare team. It also has pointers and signposts to sources of help and information, giving you the knowledge to work with your IBD team. 

Oh, how I wish I’d known where the answers were to the questions I had and the many more questions I didn’t know I had!

So please – anyone with an IBD condition – do access the toolkit and let it help you to help yourself and more effectively access the healthcare services you need, want and deserve.

Professor Alan Lobo, consultant gastroenterologist at Sheffield Teaching Hospitals NHS Foundation Trust and chief investigator of the AWARE-IBD project, added: AWARE-IBD is a major research study, led by patients living with inflammatory bowel disease.

This new toolkit is an invaluable resource that will help patients who often feel anxious and embarrassed about symptoms better manage their interactions with their healthcare teams so that they can communicate what matters to them.

The AWARE-IBD project also has Sheffield Microsystem Coaching Academy and epiGenesys among its partners. You can find out more information about the toolkit, the project and VoiceAbility via the links below.

Download a PDF of the Aware-IBD toolkit