Share your experiences with accessing Creon
We’ve been monitoring issues with Creon and other types of PERT supplies across the UK since late 2023, which have caused significant worry and stress for those affected. We continue to speak regularly to manufacturers, distributors and the Government to ensure that all parties are treating this as a priority, and that everything is being done to manage availability and support our community.
Today, the Trust has opened a new survey to capture the views and the reality of the current situation for our community. By taking part and sharing your or your family’s personal experiences, you’ll be helping us to provide evidence to the Department of Health about what it’s been like to access your much-needed Creon during the shortages.
The survey will be open until Friday 4 October to ensure we’re capturing the real-time experiences and impact of Creon/PERT supply issues are having on people with CF.
What else can I do to help?
It's important to ensure that politicians are aware of the interruptions to supply in medicines and how these have impacted you/your family. The more they are aware of the challenges their constituents face, the more they will raise awareness of this in Parliament.
We've put together a template letter you can use to get started with writing to your MP. Your MP will be more likely to respond to a personal letter, so make sure to include some information about why you need to take enzymes, and how the Creon shortages have impacted your life.
Find out who your local MP is and contact them
Make sure you copy us in using [email protected].
Share your story with us
If you would like to share your or your family's story with us for our website, media and campaigning work get in touch on [email protected]. By sharing your experiences with us you’ll be helping us to illustrate the daily impact the current shortages are having on people with CF.
If you need more information or support regarding the current issue with PERTs, or any aspect of cystic fibrosis, please contact our Helpline. Lines are open Monday–Friday, 10am–4pm.
Here to help
Our Helpline is available to anyone looking for information or support with any aspect of cystic fibrosis, a listening ear, or just to talk things through.