Medicines are a vital part of managing and treating the symptoms of Crohn’s and Colitis, as well associated symptoms outside the gut and complications. Being able to access the widest and most innovative range of evidenced-based drug treatments and new technologies is therefore fundamental. 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 patients accessing medicines and technologies. We also actively engage with regulatory bodies as they make decisions about what treatments/technologies should be prescribed on the NHS.
Our work, which is detailed below, draws on the following principles:
- People living with Crohn’s and Colitis, and their carers, have a voice and actively participate in decisions about future drug treatments and technologies.
- NHS services are designed in a way that enables clinicians to give timely access to medications and technologies.
- Information about how drugs are prescribed and their effect is routinely collected by the NHS, through 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 patients.
- 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.
- 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.
Our research shows that prescription charges are a barrier to people with Crohn’s and Colitis collecting and taking the medicines they need to keep well. This can lead to worsening health and affect ability to work. As a member of the Prescription Charges Coalition and in collaboration with other charities, we campaign for everyone with Crohn's or Colitis and other long-term conditions to be exempt (or continue to be exempt) from prescription charges wherever they live in the UK.
For more information please visit the Prescription Charges Coalition.
Funding research into future treatments and technologies
Crohn’s & Colitis UK funds vital research into new drug treatments, diagnostics and technologies. For more information please visit our research pages.
Crohn’s & Colitis UK is a politically neutral organisation, and we do not take a position on whether the UK should remain or leave our current EU arrangements.
Through our membership of National Voices and the Association of Medical Research Charities (AMRC) we are working to ensure that research, access to medicines and the treatment of patients are given the prominence and attention they deserve in Brexit discussions. We believe that this collaborative approach is currently the most effective and impactful way of raising shared concerns.
Updates on the government Brexit negotiations can be read here.