My Diagnosis survey

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.