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Our early diagnosis programme

Published 02 November 2022

Early diagnosis for people with Crohn’s and Colitis is crucial. Delays to diagnosis limit the treatment options for patients and make hospital admissions or surgery more likely. Without treatment, people’s lives are interrupted. Each day of delays limits their ability to work or participate in education and maintain relationships due to the debilitating and worsening symptoms.

More than a quarter of people wait more than a year for a diagnosis of Crohn’s or Colitis. During this time, debilitating symptoms like severe stomach pain and diarrhoea mean nearly half end up in A&E at least once while waiting for a diagnosis.

Because of the stigma and misunderstanding surrounding these conditions, thousands suffer in silence, unaware that their symptoms could be Crohn’s or Colitis. 

Our programme is fighting to change this. 

Below, Rachel Ainley our Head of Research and Evidence, shares more about our early diagnosis programme and how you can get involved.

Through our Early Diagnosis programme which launches today, we want to ensure that people get their diagnosis and treatment as soon as possible, when it can do the most good. We will work with healthcare professionals and professional bodies, raise awareness of Crohn’s and Colitis symptoms among the general public and work with national and local policymakers to ensure that early diagnosis of Crohn’s and Colitis is high on the agenda.

Raising awareness in the general public

Our research shows there are multiple barriers for people to delay seeking help from a healthcare professional. 

People are assuming that symptoms such as abdominal pain, diarrhoea and unintended weight loss are not serious enough; as well as feeling embarrassed, scared, or not finding the right words to describe the symptoms. Many people are also worried about availability of appointments and would delay seeking help because they do not wish to put extra strain on the NHS.

Rachel Ainley, Head of Research and Evidence

These issues are particularly amplified among young adults aged 18-35. 1 in 6 would delay because they are too embarrassed to talk about their symptoms and 1 in 5 say they lack confidence to describe their symptoms.

As part of our public health campaign, we will be raising awareness of Crohn’s and Colitis, particularly targeting young adults (18-35) and encouraging them to contact their GP if they are experiencing abdominal pain, diarrhoea, or blood in stools, even if the symptoms come and go every few weeks.

At the same time, we will be launching a symptom checker, developed in partnership with GPs and clinicians. The symptom checker is an online tool which only takes 30 seconds to complete. It helps people decide whether they should speak to their GP and supports them in starting the conversation with a list of their symptoms and can send them a letter to take to their GP.

Influencing policymakers

Throughout next year we will be sharing research on the impact of delays to diagnosis to inform policymaking.

We will be campaigning to gain support for our public health campaign to raise awareness of Crohn’s and Colitis so that people can take control of their health. We will also be working with patient charities, clinicians and policymakers to develop a patient-led national diagnostic pathway for people presenting with lower GI symptoms. We will be pushing for the prioritisation of endoscopies by patient need.

A key to the success of this programme will be to bring patient and clinician voice. And we need your help and support to achieve this change.

Rachel Ainley, Head of Research and Evidence

We are starting our programme of policy work through parliamentary receptions this year. We will be in Westminster on 2 November, Cardiff on 9 November, Belfast on 1 December and Edinburgh on 14 December.

Working with healthcare professionals

We want to support community healthcare professionals to spot the signs of Crohn’s and Colitis. We have collated and will continue to build a range of resources, including toolkits, podcasts, webinars, and CPD modules. You can find them here. We will continue working with a range of partners to deliver these, including RCGP and NB Medical.

As part of the campaign launch, we have sent out a leaflet and letter to senior partners in GP surgeries across the UK to raise awareness of Crohn’s and Colitis, the extent and impact of delayed diagnosis, the importance of faecal calprotectin tests and to share our resources.

Next year we are planning to develop a new patient-led diagnostic pathway for those presenting with lower GI symptoms, working with patients, other charities, and clinicians.

From today, you will see lots of new content on our website and social media channels, and we would love our healthcare professional community to join us. Below are 3 ways you can get involved:

  1. Follow us on social media, share our public awareness campaign, and let people know this matters to you. 
  2. Help us to reach out to all healthcare professionals by sharing this blog or our resources page with your networks.
  3. Back our call for early diagnosis. Help us to influence change in health policy, by pledging your support, or working with us. Please get in touch if you would like to add your voice to our campaign.


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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.

  • Signposting you to 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 - 9am to 5pm, Monday to Friday (except English bank holidays).

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If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

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