Our strategy

We hear from thousands of people every day so we know we can tell powerful stories about your lives and what needs to change, backed by facts and statistics. But we also know that we are not reaching every part of our community and so cannot reflect the full range of experiences.

We are making it our mission to fully understand your experience so we can fight for everyone affected by Crohn's and Colitis.

Because whoever you are, a diagnosis of Crohn’s or Colitis can be life changing.

Our strategy

We hear from thousands of people every day so we know we can tell powerful stories about your lives and what needs to change, backed by facts and statistics. But we also know that we are not reaching every part of our community and so cannot reflect the full range of experiences.

We are making it our mission to fully understand your experience so we can fight for everyone affected by Crohn's and Colitis.

Because whoever you are, a diagnosis of Crohn’s or Colitis can be life changing.

In the last five years there have been improvements.

  • Access to a specialist team including an IBD nurse specialist is more likely.
  • Biological drugs provide more chances to keep the conditions under control.
  • New drug formulations make treatment more flexible, such as allowing home-administration.

Some things, however, never seem to change.

  • Your journey to diagnosis may not be quick. For 1 in 4 of you it will take over a year and for nearly 1 in 2 of you, it will involve at least one A&E visit.
  • Once diagnosed, care may not be personalised and specific to what matters to you.
  • You may feel misunderstood, like the only things people see are your gut symptoms and medications.
  • Education and career ambitions are frequently disrupted, and the conditions could affect your social life and intimate relationships.

That's why we're here

Our strategy positions us as experts in the field to we can stand up for your needs, whoever you are, and make real, lasting change.

See below for the key differences we’ll make over the next three years or read our strategy in full.

1 in 123 people in the UK live with Crohn's or Colitis

Experts in your experience

Our ambition for people affected by Crohn’s or Colitis

Understanding the diversity of the Crohn's and Colitis experience will help us identify and address gaps in knowledge.

Our aim for three years’ time

We'll have brought together everything we know about people affected by Crohn’s and Colitis and be commissioning research to fill the gaps.

Our action in 2022

We’re identifying gaps in available evidence and reviewing our approach to make evidence gathering as effective as possible.


32% of people with Crohn's and Colitis did not get information about their condition when diagnosed

A treasure trove of information and support

Our ambition for people affected by Crohn's or Colitis

Over the years we have built up a wealth of trusted information and valued support which is trusted and valued. Everyone should benefit from this and be able to find the right support at the right time.

Our aim for three years' time

Information and support tailored to your needs at any given stage of living with the conditions, including a way to speak to others affected by the conditions regardless of where you live.

Our action in 2022

We're providing more translations of our information and developing an online tool to help people make decisions about their needs.

We're developing resources to make events easier to organise and deliver locally.


4.5 million is being spent on pain research and we've put crohn's and Colitis on the agenda

Driving long-term solutions for long-term relief

Our ambition for people affected by Crohn's or Colitis

Expensive medical and clinical research is increasingly undertaken by fewer teams, attracting multi-million-pound funding. We can identify important concerns not being addressed in research and use our influence make sure they’re investigated.

Our aim for three years' time

Our influence will see increased funding against the research priorities identified by people with Crohn’s and Colitis, who will influence and be involved in research that affects them.

Our action in 2022

We’re identifying the top priorities for research in IBD, engaging researchers in new ways, and defining an approach that will push these priorities to the forefront.


32% more IBD nurse specialists are in post, thanks in part to our more IBD nurses = better care campaign

Standing alongside you in demanding better

Our ambition for people affected by Crohn’s or Colitis

Our unique work with leading health organisations lays the groundwork for systemic change in IBD services. Now, you need practical changes in public spaces, educational institutions, and the workplace.

Our aim for three years’ time

We’ll be campaigning for better symptom recognition and faster diagnosis, driving the use of the IBD Standards, and supporting the invaluable work of IBD nurse specialists. People with invisible conditions will be supported and understood by employers and educators.

Our action in 2022

We’re identifying where better symptom recognition is most needed so our campaign will have the greatest impact.

We’re developing tools to help people advocate for themselves and exploring ways we can make the most out of our political and corporate contacts.


Our strategy guides who we are, what we do, and how we do it.

Find out more in the video below.


Where you come in

Our supporters are the bedrock of the charity, whether you are a fundraiser, cheerleader, or volunteer, and without you we would not be able to do the work we do. We know that we cannot take your support for granted and we will work to ensure that the way we serve you is positive and professional. We will continue to involve you in the development of programs of our work and products.



Helpline service

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).

Live chat

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

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