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Medicines are a vital part of managing and treating the symptoms of Crohn’s and Colitis. Find out how we are working to ensure people with Crohn’s or Colitis can access the most effective medicines and treatments so that they stay well.
I felt the patient voice was being heard. There was a lot to go through on the day – presentations about statistics and finance – but we were encouraged to talk. Ultimately, if people don’t speak out then the patient voice doesn’t get heard.
Claire
Living with Crohn’s disease and talking about her experience of giving evidence to NICE as part of their appraisal of Ustekinumab
Working with you, we remove barriers that prevent people with Crohn’s or Colitis from accessing the most effective treatments needed to keep well with Crohn’s or Colitis.
Medicines are a vital part of managing and treating the symptoms of Crohn’s and Colitis, as well associated symptoms outside the gut, medicine side effects and complications. Being able to access the widest and most advanced range of evidence-based medicines and treatments is critical to treating and managing the conditions. However, based on the experiences you share with us, we understand this is not always possible.
Crohn’s & Colitis UK works in several areas to break down barriers that prevent people with Crohn’s or Colitis from accessing medicines and treatments. We also actively engage with regulatory bodies across the UK who make decisions about what treatments/technologies should be prescribed on the NHS.
Before a medicine or technology (e.g. diagnostic test) can be recommended for routine use by the NHS, it is assessed for its clinical and cost effectiveness. The UK bodies tasked with this job include the National Institute of Health and Care Excellence (NICE), Scottish Medicines Consortium (SMC) and All Wales Medicine Strategy Group (AWMSG).
Crohn’s & Colitis UK engages with these organisations to ensure that decision makers fully consider the difference potential treatments and technologies may make to the lives of people with Crohn’s and Colitis and their carers. We regularly respond to consultations, publicise opportunities to get involved and support people to give evidence to appraisal committees.
I was delighted! The relief I felt was coupled with a sense of having contributed to something that other people might benefit from.
Living with IBD
We have been delighted to see recent decisions, by NICE and the SMC, ensure that a wider range of treatment options are available to people with Crohn’s and Colitis. Our most recent submissions and responses can be read here. If you would like to get involved in our consultation work, please monitor our social media channels for the most recent opportunities.
We often collaborate with and receive funding from corporate partners to achieve our work. However, any policy position we take is informed by evidence and insight and will be independent from any financial or collaborative arrangements we have with external organisations. We will also make it very clear in our work where we have received funding for a specific project from an external organisation. Our fundraising policies are available to view on request.
None of our award-winning campaigns would be possible without our amazing community of dedicated campaigners. Your powerful voice really does matter.
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.
Providing details of other 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).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.
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