Health

IBD UK’s report ‘Crohn’s and Colitis Care: The hidden cost and a Vision for Change’ that describes the state of Crohn’s and Colitis care across England found: 

• Adults and children are waiting too long for a diagnosis of Crohn’s or Colitis 
• The wider symptoms of Crohn’s and Colitis, such as pain, fatigue, and emotional wellbeing are often not addressed 
• People are not getting specialist advice and treatment quickly enough 
• There are not enough specialists, including IBD nurse specialists, dietitians and psychologists and care is often not joined up 

We have been working with NHS England to address these findings.  

Getting It Right First Time (GIRFT).

Getting It Right First Time (GIRFT) is a national programme designed to improve the treatment and care of patients through in-depth review of services, benchmarking, and presenting a data-driven evidence base to support change. Its national report on gastroenterology called for more proactive management of Crohn’s and Colitis to enable earlier diagnosis and better management of flare-ups, as well as reducing emergency admissions and the need for surgery. The report argues for the prioritisation of suspected IBD referrals, better access to IBD specialist nurse helplines and flare clinics, which can help patients to deal with flare-ups at home or with GP support. 

To write the report Dr Oates and her team visited all 129 NHS trusts in England providing gastroenterology services, examined hospital data, and surveyed IBD teams. Crohn’s & Colitis UK shared the findings of the IBD UK Report ‘and examples of best practice with the GIRFT team to add the perspective of people with Crohn’s and Colitis. We will be working with GIRFT to support the implementation of their recommendations. 

NHS Rightcare 

We’ve joined forces with NHS England to produce a toolkit that will help local health groups improve services for people with Crohn’s and Colitis, including rolling out early testing for IBD, more personalised care and more flexible appointments for those who want them. The guidance in the toolkit aims to help Clinical Commissioning Groups (CCGs) and newly formed Integrated Care Systems (ICSs) deliver faster diagnosis and treatment, more joined up care between the different health professionals and organisations supporting each individual, and improve access to dietic, pain management and mental health care. The toolkit was developed in partnership with patients, NHS Experts and healthcare professionals.  

NCEPOD enquiry

We are contributing to the National Confidential Enquiry on Patient Outcomes and Death in Crohn’s disease surgery. The study will explore the experiences and outcomes of people with Crohn’s disease who underwent a surgical procedure between 2019-2021. NCEPOD aim to publish their findings and recommendations in 2023. For more information visit.