A WREXHAM patient with Crohn’s disease has been speaking about a new tool kit to support people living with inflammatory bowel disease.

Nick Yates – a patient at Wrexham Maelor Hospital – was diagnosed in 2016 with Crohn’s disease, a lifelong condition where parts of the digestive system become inflamed.

The retired marketing consultant has to take daily pills and inject himself every eight weeks to manage his Crohn’s which, along with others such as ulcerative colitis, is a type of a condition called inflammatory bowel disease (IBD).

Nick jumped at the chance to be involved with the creation of a toolkit – which helps people with IBD communicate confidently with healthcare professionals – as part of his role as a member of the AWARE-IBD Patient Oversight Committee.

AWARE-IBD is a project led by the charity Crohn’s & Colitis UK, with the aim to redesign IBD services – shaped by those who use them.

As well as Nick’s involvement, the AWARE-IBD toolkit has also had input from IBD patients at an NHS hospital in Sheffield – and 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.

The toolkit can be viewed online via voiceability.org/aware-ibd.

Nick, whose role on the AWARE-IBD Patient Oversight Committee is to represent the views of patients across the UK, said: “The AWARE-IBD toolkit is very exciting and I only wish that it had been available when I was diagnosed.

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“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.”

On the three-year AWARE-IBD project itself, part of the Health Foundation’s Common Ambition funded programme, Nick added: “The project’s aim of redesigning IBD services, shaped by the patients who use them, is what everyone who suffers with IBD dreams of.”