Our recent advocacy on Creon shortages

In January, the All-Party Parliamentary Group (APPG) for Pharmacy launched an inquiry into medicines shortages. This group is made up of MPs and members of the House of Lords from all political parties, and the inquiry comes in response to growing scrutiny on the impact of medicines shortages like Creon on patient care in the UK. Using the first-hand experiences you’ve shared with us, we gave strong evidence to the Group to help shape its recommendations to health ministers. 

We also attended an evidence session in Parliament where APPG members questioned medicines manufacturers, medicines distributors, patient organisations and the Department of Health about what’s causing the shortages and how these can be overcome. We look forward to seeing and sharing the Group’s report and hope that it will lead to bold solutions.  

Over the last few months, we have been speaking with Members of Parliament, Members of the Scottish Parliament, Members of the Welsh Senedd and Members of the Legislative Assembly in Northern Ireland, giving them information to raise the issue in parliamentary debates and submit questions to health ministers - helping to keep it high up on the Government’s priority list. We also regularly meet with the Department of Health Medicines Supply Team. We are pleased that the Government is now undertaking a ‘resilience review’ of the UK’s ability to anticipate and respond to medicines supply issues. 

As part of this review, the Department is looking at how to improve information to patients about the medicines supply issues. We have emphasised the need for information to be targeted towards healthcare professionals working directly with people with CF, so they feel equipped to best support their patients. We are also pushing for clearer information for those impacted by shortages, about the nature and cause of the issue, as well as what is being done to solve it. 

In April, we’ll be teaming up again with other patient organisations impacted by PERT shortages to support the delivery of a webinar for GPs and Pharmacists. We’ll use this opportunity to highlight the changes in clinical guidance since September in managing the shortages, and give them the opportunity to ask questions to experts and those working in CF.    

Thank you to all of you who wrote to your MP and shared your personal experiences of Creon shortages. If you haven’t yet contacted your parliamentary representative, we would encourage you to do so and to copy us using [email protected]. 

Our updated template letter is here to help you get started

If you have already contacted your MP and have received a response, please forward this onto us on [email protected] as it helps us to better target our future advocacy. 

Find out who your local MP is

We've put together some FAQs to provide the latest information about Creon availability, and what to do if you are experiencing difficulties in accessing Creon. 

Find out more