People with Crohn’s and Colitis wait too long for a diagnosis – new research shows

24 July 2020

As part of work funded by Crohn’s & Colitis UK, researchers have found that 1 in 10 people with Crohn’s and Colitis, collectively known as Inflammatory Bowel Disease (IBD), have to wait up to 5 years for a diagnosis after first speaking to a doctor about symptoms.

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This work, carried out at University of London & St George's University Hospitals NHS Foundation Trust, looked at the diagnoses of more than 97,000 people with Crohn’s and Colitis in a national database, making it the largest study of its kind in the UK.

Although there are some promising signs, the results of this work show that there is still a long way to go to make sure people with Crohn’s and Colitis are getting diagnosed quickly and correctly. For example, less than half of people diagnosed with Crohn’s or Colitis were seen by a specialist within 18 months of experiencing ongoing gastrointestinal symptoms.

The team, led by Dr Richard Pollok and Dr Jonathan Blackwell, also looked at the reasons why people with Crohn’s or Colitis might experience a delay in diagnosis. They found that people who had a diagnosis of depression or Irritable Bowel Syndrome (IBS) had to wait longer to be directed to a specialist, such as a gastroenterologist in an hospital IBD team.

It is essential that people with Crohn’s or Colitis are diagnosed quickly so they can start treatment sooner, to help them manage their condition and reduce the risk of emergency surgery. The confusion between IBS and IBD, and that these conditions can overlap, is a well-known problem for people with Crohn’s and Colitis.

This study shows that people are still waiting too long for a diagnosis of Crohn’s or Colitis. The IBD Standards state that patients referred with suspected symptoms should be seen within 4 weeks. Delays in diagnosis mean that people are living with painful and difficult symptoms which can significantly affect their quality of life as well as increase their risk of serious complications. These results highlight the importance of research to inform healthcare services for people with IBD and the need for services to look at ways they can improve diagnosis.

Ruth Wakeman
Director of Information & Support Services, Crohn’s & Colitis UK

The Royal College of General Practitioners and Crohn’s & Colitis UK have collaborated on the IBD Spotlight Project to improve the detection and diagnosis of Crohn’s and Colitis, with an IBD toolkit available for GPs online. More work is needed to better understand the link with depression and make sure that all the needs – physical and mental - of people living with Crohn’s or Colitis are met.

In this study, only 5.6% of people with Crohn’s or Colitis were found to have met their hospital IBD team within 4 weeks of experiencing ongoing gastrointestinal symptoms, such as abdominal pain, diarrhoea, and blood in their poo.  Encouragingly this percentage rose to 15.2% in the later years that were looked at (2014-2016). The researchers say this could be due to improvements in the tests available and pathways that GPs can follow, which help ensure that people who need to get seen sooner by a specialist and diagnosed appropriately.

The IBD Standards and NICE Quality Standard for IBD state that people with Crohn’s or Colitis should be seen by a specialist within 4 weeks of referral from a GP.  You can visit the IBD UK website to see if your hospital is meeting this target. We will soon have a picture of this across the UK too, so you will be able to see if your hospital is meeting the national average.

 

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