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.

How are we working to increase access to medicines and treatments?

• Making sure that people living with Crohn’s and Colitis, and their carers, have a strong voice and actively participate in decisions about future drug treatments and technologies, as outlined in the 2019 IBD Standards. We regularly submit evidence to inform the decisions about what drugs should be recommended on the NHS and support people with Crohn’s and Colitis to give evidence as part of this appraisal process.
• ​NHS services are designed in a way that enables clinicians to give timely access to medications and treatments. Visit the IBD UK website for information about the IBD Standards and what good IBD care should look like.
• Information about how drugs are prescribed, and their effect is routinely collected by the NHS, and by the IBD Registry. It is vital that everyone understands the impact of individual treatments and use learning from the Registry to improve the way services are designed around the needs of people with Crohn’s or Colitis.
• Given the crucial role that IBD nurse specialists play in the administration and monitoring of complex and expensive drug treatments such as biologics, that IBD services meet recommended staffing and qualification levels.
• People with Crohn’s and Colitis should not be charged for medicines and treatments that keep them well. Based on independent economic analysis, charging (e.g. prescription charges) reduces access and adherence to medications used in the management of long term, chronic conditions, such as Crohn’s and Colitis.

Drug and technology appraisals

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 patient experts to give evidence to appraisal committees. 

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.

Our guidelines for working with pharmaceutical companies can be read here. 

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