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, as outlined in the 2019 IBD Standards. Visit the IBD UK website for information about the IBD Standards and what good IBD care should look like.
- 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.
In preparation for Brexit, and in the case of a possible ‘no deal’ the Government has outlined a number of plans to mitigate against disruptions to the supply of medicines and medical products.
What is happening?
The UK Government is in the process of negotiating an exit from the European Union (EU) (commonly known as Brexit).
You may have heard lots of discussion in the media about Brexit’s potential impact on the NHS and access to medicines, as well as a number of different deadlines and advice on how to prepare.
To help make things clearer, we’ve pulled together the most recent advice from the Government and NHS, and an update on our response to Brexit.
What is the Government doing?
The Government has issued guidance to providers and suppliers to increase their medicines stocks by at least 6 weeks on top of their usual buffer stocks and has stated that the stock of medical devices will be increased on a national level.
They have also announced their plans to create an ‘express freight service’, which will transport medicines into the UK within 24 hours if the UK leaves the EU without a deal.
Alongside this, the Government has plans to create something called a freight capacity framework agreement. The Government says that this would mean departments will be able to organise the transportation of medicines and medical products in a critical situation as and when required.
What this means for you
You should continue to order and collect your prescription in a timely manner and take the correct dose of your medicine.
The Department of Health’s advice to patients is to keep ordering repeat prescriptions and taking medicines as normal. They advise against ordering extra medications or stockpiling medications.
If you are worried about a particular medicine, please speak to your doctor or pharmacist. They will be able to advise as best they can and offer information on substitution if appropriate to your needs.
What we are doing
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.
Concerns around the supply of medications, staffing levels and future of research and regulation have been raised.
Through our membership of National Voices, Health and Social Care Alliance Scotland and the Association of Medical Research Charities (AMRC), the sector is 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.
We have been in contact with pharmaceutical companies to understand their preparations in the event of both a deal and no-deal Brexit. Please find what we know so far and we will keep you updated with further information.
If you have any concerns
If you are worried about the supply of your medicines, please speak to your doctor for more information. You can also raise your concerns with your local MP.
Updates on the government Brexit negotiations can be read here.