IBD UK and the IBD Standards

IBD Standards Website on Computer

People with Crohn’s and Colitis should receive safe, consistent, high-quality, personalised care whatever their age and wherever they live in the UK. 

There are currently large differences in standards of care across the UK and because of this, IBD UK, a partnership of 17 patient and professional organisations, led by Crohn’s & Colitis UK, have come together with people living with Crohn’s and Colitis to develop the IBD Standards. 

IBD Standards Website on Computer
Last reviewed March 2022

IBD Standards

The IBD Standards, published in 2019, set out what high-quality care looks like at every point of the patient journey, from pre-diagnosis, to surgery and ongoing care, as well as how  IBD services should be organised to deliver this. 

IBD Benchmarking Tool

The IBD Benchmarking Tool was designed to assess how well services are performing against the IBD Standards, highlighting excellent care and helping services to plan improvements. 

It includes a Service Self-Assessment, completed by individual IBD teams, and the IBD Patient Survey, completed by people with Crohn’s and Colitis using each service.  

The next round of IBD UK benchmarking is planned for spring 2023.  

IBD UK Reports

The IBD UK report Crohn’s and Colitis Care in the UK: the hidden cost and a vision for change used data from the benchmarking tool to identify four main areas for focus: 

  • 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 discussed 
  • 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 
Find out how we are working to make the IBD Standards a reality

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Helpline service

Helpline
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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can provide information on a range of subjects including:

  • Managing Symptoms
  • Disability benefits
  • Medication
  • Diet
  • Test and diagnosis
  • Wellbeing
  • Employment
  • Help to find support from others living with the condition

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.