Caring for people with Inflammatory Bowel Disease: learning from best practice

It’s estimated that there are over half a million people living with Inflammatory Bowel Disease in the UK¹. IBD is mainly used to describe ulcerative colitis and Crohn’s disease, two long-term conditions characterised by inflammation of the gut².

Currently, there is unwarranted variation in the quality of IBD care across the UK, with waiting times for new patient appointments at gastroenterology clinics varying between one and 27 weeks³. A recent survey of 10,000 people living with IBD found that 26 per cent waited over a year for a diagnosis, and 41 per cent had visited accident and emergency at least once before being diagnosed⁴, which can prove costly for the NHS. At an estimated £900m annually⁵, lifetime medical costs associated with IBD care are comparable to diabetes and cancer care⁵.

Clearly, there’s a need for change on a national scale. The IBD community – including the IBD UK collaboration led by Crohn’s & Colitis UK – continues to achieve significant progress for people living with IBD, but tackling unwarranted variation requires further collaborative, national effort, with the support of government and NHS leaders.

As pandemic and economic pressures compound longstanding challenges to the NHS, addressing unwarranted variation in IBD care can feel daunting. But there are examples of best practice that demonstrate how even small changes can make a big difference to those living with IBD and the teams and services supporting them. “Levelling up care for people living with Inflammatory Bowel Disease (IBD)” a report initiated and funded by healthcare company Takeda UK, spotlights seven NHS best practice case studies across different parts of our IBD care pathway which other centres can learn from.

This includes the “AWARE-IBD” project from the IBD Centre at Sheffield Teaching Hospitals Foundation Trust, in partnership with Crohn’s & Colitis UK. Funded by The Health Foundation as part of the “Common Ambition” programme, the project aims to improve service experience by making explicit the question “What matters to you?” – empowering those with IBD and enabling them to feel in control of their care. It aims to establish a process within the trust whereby change is driven through collaboration with people with IBD, and using systematic, embedded data collection. This has led to engagement with “less heard voices”, the development of personalised care plans and a toolkit to help people express what is important for them to their clinical team.

This is one example of good practice – but between trusts, the requirements of services may vary. Services can work with patients to further understand what “good care” means for them, embedding their voice into service development.

As we look for solutions to improve outcomes and experiences for people living with IBD, tackling unwarranted variation is key. While each trust has a role to play, we can’t tackle it alone. There’s a clear need for a national IBD strategy, drawing on the expertise of both patients and healthcare professionals, with NHS and government backing, to ensure everyone living with IBD can receive quality care.

References:

¹Crohn’s & Colitis UK. New research shows over 1 in 123 people in UK living with Crohn’s or Colitis. March 2022. Available at: https://crohnsandcolitis.org.uk/news-stories/news-items/new-research-shows-over-1-in-123-people-in-uk-living-with-crohn-s-or-colitis Last accessed January 2023.

²NHS England. Inflammatory bowel disease. Available at: https://www.nhs.uk/conditions/inflammatory-bowel-disease/ Last accessed: January 2023.

³Oates B., Gastroenterology, Getting It Right First Time (GIRFT) Programme National Speciality Report. March 2021. Available at: https://gettingitrightfirsttime.co.uk/wp-content/uploads/2021/10/Gastroenterology-Oct21v.pdf Last accessed January 2023.

⁴IBD UK, “Crohn’s and Colitis Care in the UK: The Hidden Cost and a Vision for Change” April 2021. Last accessed January 2023. Available at: https://ibduk.org/reports/crohns-and-colitis-care-in-the-uk-the-hidden-cost-and-a-vision-for-change

⁵Crohn’s & Colitis UK, “New resources for Nurse and Healthcare Professionals”. February 2018. Available at: https://www.crohnsandcolitis.org.uk/news/new-resource-for-ibd-nurse-specialists Last accessed January 2023.