Sheffield Teaching Hospitals NHS Foundation Trust has launched a toolkit that guides patients with inflammatory bowel disease (IBD) through things such as seeking treatment and describing symptoms.
The Trust worked with a group of people with IBD to create the guidelines as part of a wider program led by Crohn’s and Colitis UK called AWARE-IBD. This scheme aims to improve IBD care across Sheffield and later the rest of the UK.
It was launched on 3 July in conjunction with National Co-production Week; a period that is dedicated to promoting self-advocacy among healthcare patients.
What is IBD?
IBD refers to disorders such as ulcerative colitis and Crohn’s disease that result in chronic inflammation of the intestineswhich can lead to severe stomach aches and diarrhoea.
Professor Alan Lobo, consultant gastroenterologist at Sheffield Teaching Hospitals NHS Foundation Trust and chief investigator of the AWARE-IBD project, said: “The toolkit 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.”
Empowering patients
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. One patient who helped shape the toolkit is Sam McCormick who was 15 when she was diagnosed with Crohn’s disease in 2002.
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.”
‘Healthcare services you need, want and deserve’
Nick Yates was diagnosed with Crohn’s disease in 2016 and has also been involved in creating the toolkit. He said: /“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.”
Others involved in creating the toolkit are voice and rights charity VoiceAbility, independent charity The Health Foundation and the University of Sheffield.
The toolkit can be accessed online at voiceability.org/aware-ibd.
Article based on an original press release
