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IBD UK and the IBD Standards

IBD Standards

We are pleased to share the launch of the updated 2026 IBD Standards.

They’re designed to ensure that people with IBD receive safe, consistent, high-quality, personalised care, whatever their age and wherever they live in the UK. We want to encourage healthcare services to recognise what they are doing well and identify where they need to improve.

We know that living with Crohn's or Colitis can feel overwhelming and your symptoms may be unpredictable. But we also know that the right care can make all the difference.

The Standards are based on the experiences of 26,000 patients and have been developed by the IBD UK Alliance - a partnership of 16 professional bodies, royal colleges and patient organisations, working together to improve care and treatment for everyone affected by Inflammatory Bowel Disease. As with the 2019 Standards, they provide a framework for what high-quality IBD care should look like in the UK.

Take a look at a brief overview of the 7 sections of the IBD Standards below, or download the full document here.

2026 IBD Standards (PDF)
2026 IBD Standards (PDF)
  • Section 1: Your IBD Service

    Your IBD team should be made up of different healthcare professionals. This is known as a multidisciplinary team (MDT). They can support you with every aspect of your IBD care, including:

    • Diagnosis
    • Treatment
    • Care during flare-ups
    • Support with diet and nutrition
    • Surgery, if needed
  • Section 3: Newly diagnosed

    Everyone who is newly diagnosed should see a specialist IBD healthcare professional. 

    Your IBD team should support you to make informed choices about your treatment and care. They should consider what matters most to you when making your treatment plan.

    Relevant links:

  • Section 4: Managing a flare-up

    You, your GP and your IBD team should have a clear plan of what to do if you have a flare-up. If you are having a flare-up, you should be able to contact your IBD team. This could be by phone or email. Your IBD team should get back to you by the end of the next working day.

    Relevant links:

  • Section 5: Having surgery

    If you are thinking about having surgery, your IBD team should:

    • Give you information about having surgery. This should be in a format and language you can understand.
    • Support you to make an informed choice about having surgery. This includes giving your consent to have surgery.
    • Arrange an appointment with a stoma nurse, if you will be getting a stoma.
    • Help you to get psychological or mental wellbeing support.

    Relevant links:

    Having surgery can feel like a big step. Our information on surgery can help you understand your options and make an informed choice about your care. 

  • Section 6: Care in hospital

    If you are admitted to stay in hospital, you should:

    • See a consultant gastroenterologist or colorectal surgeon within 24 hours
    • Be moved to a specialist ward area within 2 days

    You should have an ensuite room, if available. If not, your ward should have at least one easy-to-access toilet for every three beds.

    Your hospital should have an agreed plan:

    • For your care and treatment if you are admitted to hospital with a flare-up
    • On how to refer you to get other specialist care, if needed
  • Section 7: Ongoing care and monitoring

    You should have your own personalised IBD care plan. This is a plan of your care, tests, treatments and monitoring. You and your IBD team should discuss and agree on it together. Your IBD team should make your personalised care plan available to everyone in your IBD team, including your GP.

    Your IBD care plan is developed over time and should change with your needs. It should include:

    • Your health and wellbeing needs
    • Shared decisions about your treatment and tests
    • Goal-setting or next steps
    • Contact details for an IBD nurse specialist and telephone or email advice line
    • What matters to you

    Relevant links:

    Our appointment guide can help you focus on what matters to you, so you can make the most out of your appointments.

    Use our Medicine Tool to help you understand more about potential treatment options that suit your needs.

IBD UK Benchmarking

The IBD UK Benchmarking was developed to encourage IBD services to recognise what they are doing well and identify where they need to improve, based on the IBD Standards 2019.

It includes the Service Survey, completed by individual IBD services, and the IBD Patient Survey, completed by people with IBD using each service.

The latest round of IBD UK Benchmarking took place in 2023, with 64% of all IBD services taking part across the UK, and 17,654 people completing the Patient Survey. Local Service Reports have now been produced, along with a national 2024 IBD UK Report looking at the overall state of IBD care in the UK.

IBD UK REPORTS

We are very happy to announce the official release of the 2024 IBD UK Report. Based on data from the 2023 IBD UK Benchmarking surveys, the IBD UK Report provides an outlook on the state of IBD care across the UK.

You can read the report in full by following this link: 2024 IBD UK Report: The State of IBD Care in the UK (PDF)

The report looks at key findings from the Benchmarking surveys on a national level, as well as providing a number of recommendations to help ensure standards [MB4.1] of IBD care improve. These recommendations, and the full report, will be shared with key decision and policy makers in healthcare across the UK. This includes hospital CEOs and MPs.

We have also produced individual reports for each of the devolved UK nations, looking at IBD care in Scotland, Wales, and Northern Ireland respectively.

You can access the 2024 Devolved Nation Reports here: 2024 Devolved Nation Reports

Finally, if you wish to look at the Benchmarking data for a specific IBD service, you can use our Local Service Reports Map here: Local Service Reports Map

Click here to find all IBD UK reports

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Helpline Service

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 help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Providing details of other specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 10am to 3pm, 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.

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