Young Woman In Hospital Bed

Launch of our My Diagnosis survey

Published 13 June 2022

We would like to invite people who have been diagnosed within the last three years to take part in a short online survey, which aims to understand factors that can help or hinder from getting a diagnosis in a timely manner.

It is taking too long for people with Inflammatory Bowel Disease (IBD) to be diagnosed and they are not receiving the information and support they need to cope with adjusting to their condition. Delays to diagnosis can impact on the individual’s physical and mental health, education, and career, and carry a significant cost for the NHS.

The most recent IBD UK report, based on patients' feedback, highlighted that: 

  • 1 in 4 of people who responded to the survey waited more than a year for a diagnosis.
  • 2 in 5 had visited Accident and Emergency (A&E) at least once before being diagnosed, with 1 in 8 visiting three or more times.
  • 1 in 3 said they were not offered any information about their condition when diagnosed.
  • Only a quarter of services had referral pathways in place and reported being able to see over 90% of patients with suspected IBD within four weeks of referral.

Crohn’s & Colitis UK is planning to launch a public campaign to raise awareness of the symptoms of Crohn’s and Colitis, and work with others to upskill community healthcare professionals in recognising potential IBD.

We are inviting people who have been diagnosed with Crohn’s Disease, Ulcerative Colitis, Microscopic Colitis, or Indeterminate Colitis within the last three years to take part in a short online survey. The survey takes approximately 6 minutes to complete.

This will help us understand what people living with symptoms of Inflammatory Bowel Disease helps or hinders them from getting a diagnosis.

This Participant Information Sheet is designed to answer some questions you may have about the study.

Complete the survey today


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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 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.