New standards raise the bar for IBD care

Aug 8, 2019

  • Crohn’s & Colitis UK and IBD UK campaign to promote better care for everyone with Inflammatory Bowel Disease (IBD)
  • The charity wants to see more IBD Nurse Specialists, greater access to psychological and dietetic support and more timely diagnosis

IBD UK, a partnership of 17 professional and patient organisations chaired by Crohn’s & Colitis UK, believe that people with IBD should receive safe, consistent, high-quality and personalised care, wherever they live and whatever their age, from diagnosis to treatment and ongoing monitoring, but unfortunately this is not currently the case.

Standards launching today aim to drastically improve how we care for people with IBD across the UK. Announced today at the British Society of Gastroenterology annual conference, these 59 statements set out what good care and treatment looks like for patients with the conditions, with the aim that every IBD service in the UK will work to meet these.

This work builds on previous IBD Standards, created in 2009, and updated in 2013, which underpin the 2015 NICE quality standard on IBD and were an integral component of the IBD Quality Improvement Programme in the UK supported by the Royal College of Physicians until 2015. Whilst significant improvements have been made, there is still much to be done to reduce variation.

Few services are able to offer their patients psychological support, there are a lack of IBD Nurse Specialists and half of patients wait over a year for their diagnosis.[1] Not only this, the way we care for people with IBD has changed in the intervening years, with new therapy options, and a shift to self-management and personalised care and support.

The 2019 IBD Standards have been supported by active involvement from healthcare professionals representing organisations including the British Society of Gastroenterology, the Royal College of Nursing and the Royal College of General Practitioners,[2] alongside input from another 150 through an online survey. As well as this, almost 700 patients were surveyed through Crohn’s & Colitis UK, CICRA and IA,[3] about what is important to them regarding the care they receive.

In addition to the launch of the new IBD Standards, this year for the first time, IBD services will be benchmarked, measuring how their services meets the set of statements. From today IBD Services can register for the IBD Benchmarking Tool, and from 1st October they will be able to complete the self-assessment, involving gathering evidence and answering questions as a multidisciplinary team and with patients. Reports released in Q1 of 2020 will showcase these results, providing an opportunity to push through real change, support with business cases and shine a light on what services are doing well and areas they could improve.

Alongside the IBD Benchmarking Tool, IBD UK, supported by Crohn’s & Colitis UK, will be launching the first UK-wide IBD Patient Survey on 8th July to allow people with Crohn’s and Colitis to feedback anonymously on their service and care. The IBD Standards provide an opportunity to lead to real changes in the way care in the NHS is delivered to patients with Crohn’s and Colitis, creating a significant impact and influencing decision making.

Rukshana Kapasi, Chair of IBD UK says, “This is an exciting and groundbreaking opportunity for services and patients to work collaboratively leading to the shared priority of improving the lives of people with Crohn’s and Colitis. This version of the IBD Standards gives us the tools to drive up the quality of IBD Services and with that, the care for people with IBD. These comprehensive guidelines have included patient involvement throughout and have been endorsed by key professional organisations.”



[1] Crohn’s & Colitis UK survey, 2018

[2] Crohn’s & Colitis UK hosted online survey of 151 healthcare professionals, 2018

[3] Crohn’s & Colitis UK hosted online survey of 689 patients, 2018