Graphic reading "1 in 123 people have Crohn's or Colitis. These are painful, debilitating conditions. And there is no known cure.

New research shows over 1 in 123 people in UK living with Crohn’s or Colitis

Published 25 March 2022

New results from a study commissioned by Crohn’s & Colitis UK have shown that the number of people living with Crohn’s Disease or Ulcerative Colitis (as well as Unclassified IBD) in the UK has been vastly underestimated.  

The research, which was carried out by scientists at the University of Nottingham and funded by Crohn’s & Colitis UK and Coeliac UK shows that the prevalence of Crohn’s and Colitis in the UK population is far higher than previously thought.  

The study shows there are over half a million people (1 in every 123) in the country living with the conditions, nearly double that of the 300,000 previously estimated, raising concerns about the capacity of the health service to provide the required care for thousands of people.

The research is the largest of its kind worldwide and measured the incidence (the diagnosis of new cases) and prevalence (the number of cases in the population in 2020) of Crohn’s and Colitis over the last 20 years. It gives the best picture so far of the scale of the problem across the country.

The study involved researchers analysing the health care records of 38.3 million people registered with GPs as part of a UK-wide study. It found that 0.81% of the population or one in every 123 people are living with Crohn’s or Colitis, increasing to 1 in every 67 for people aged over 70. Globally, this research puts the UK as second only to the US in terms of percentage of the population living with the condition and the problem is set to grow.

People receiving IBD treatment need specialist care and support from clinicians including doctors, gastroenterologists, nurse specialists, dietitians and psychologists to help them manage the impact of their condition. Currently, and in part due to the underestimated prevalence, the health service is not equipped to manage this care adequately in any of the four nations.

This study shows that there are nearly twice as many people living with Crohn's Disease and Ulcerative Colitis in the UK than previously thought, yet outdated figures mean the scale of the issue has been overlooked for too long. Lifetime costs for the NHS for treating these conditions are comparable to heart disease and cancer. They can have a profound impact on a person's life and patients need expert care from doctors, specialist nurses, dietitians, pharmacists and psychologists.

It's crucial that the NHS recognises the scale of the growing numbers with Crohn’s and Colitis and does more to prevent lives being blighted for decades by these debilitating illnesses.

Sarah Sleet
CEO of Crohn's & Colitis UK

The research found that the prevalence of Crohn's and Colitis was lower in London compared to the rest of the UK and highest in Scotland. This could be due to a younger, urban population in London. The prevalence was also lower in more socioeconomically deprived areas and higher in people who declared their ethnicity as white compared with all other ethnicity groups. Researchers say this may have been due to lifestyle factors, although barriers to diagnosis likely account for most differences between groups, such as differences in awareness of the condition. This suggests more work needs to be done to increase public awareness of the conditions and understand why some people face barriers to diagnosis.

IBD is unlikely to have reached its peak in the UK. This research estimates that the number of people living with the condition has grown to approximately half a million. It’s a lifelong condition so it’s highly likely that the prevalence will continue to increase as the population ages. The associated complications, burden on individuals, capabilities of the healthcare system and other societal impacts of this all require serious consideration. We need continued research to understand why we’re seeing inequalities in diagnosis.

Dr Laila Tata
Associate Professor of Epidemiology at the University of Nottingham and lead researcher

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We believe that the voice of people with Crohn’s and Colitis should be at the centre of all research into Crohn’s and Colitis. Find out more about our research partnerships.

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