New toolkit launched to help patients with inflammatory bowel disease

The toolkit, which was created by voice and rights charity VoiceAbility in partnership with the inflammatory bowel disease team at Sheffield Teaching Hospitals NHS Foundation Trust on content, 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 McCormick, who was diagnosed with Crohn’s disease in 2002 at the age of 15, is among those to have shaped the toolkit.

Sam, who lives in Sheffield where she’s a patient at the Royal Hallamshire Hospital, said: “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.”

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.

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.”

Nick Yates, who was diagnosed with Crohn’s disease in 2016 and has also been involved in the toolkit’s creation 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. 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 inflamatory bowel condition – do access the toolkit and let it help you to help yourself.”

To access the toolkit click here. To request a paper copy email [email protected].

For more information about the AWARE-IBD project – which also has Sheffield Microsystem Coaching Academy and epiGenesys among its partners – visit sheffield.ac.uk/scharr/research/centres/ctru/aware-ibdsheffield.ac.uk/scharr/research/centres/ctru/aware-ibd.