As some of you may be aware, we are working with fellow charities and patient organisations to ‘lobby’ and work with the government and other stakeholders to better address PERT shortages.
Our working group of charities and patient organisations meets monthly, and updates will be posted here following each meeting, if there is any change in the situation.
Please find below the contact details to locate your nearest stock of PERT, should you continue to experience shortages. It may help reduce the need to visit or drive around numerous pharmacies trying to find stock:
- For CREON: Call 0800 808 6410, open Mon-Fri 9am – 5pm (your local pharmacist can also use this number).
- For NUTRIZYM: Call 08000 902408 or email ukcustomerservices@zentiva.com. (There is a different number for your local pharmacist to use: 0844 879 3188).
Ongoing Collaborative Campaign Work to Improve the Situation:
We co-produced two online webinars for prescribers and healthcare professionals in September, which had over 450 attendees:
These webinars are hosted on the Pancreatic Cancer UK website.
We would like to sincerely thank the members of our community who shared their experiences in this initiative.
A summary document, to be used to brief MPs, is being submitted with evidence from all working group members: Neuroendocrine Cancer UK, Pancreatic Cancer UK, Pancreatic Cancer Action, GUTS UK, and Cystic Fibrosis Trust.
A further thank you goes to the 148 community members who completed our PERT survey.
A summary of the results is available here.
What Are We Doing?
There is ongoing work with the Pancreatic Society of Great Britain & Ireland, which produced the Position Statement for clinicians and patients in June 2024. PERT shortages are a key topic at this year’s annual scientific congress.
Earlier this year, the Royal Pharmaceutical Society launched an investigation into Medicines Shortages, “bringing together experts from primary and secondary care, patients, the pharmaceutical industry, suppliers, regulators, government, and the NHS.” They are gathering evidence to help address the causes of medicine shortages and identify potential steps to reduce the impact on patient care.
Our working group will be submitting a briefing on PERT shortages to this investigation. The RPS final report and recommendations are expected to be published at the end of 2024.
Members of the working group have also attended recent political party conferences, including fringe events discussing medicine shortages. The consensus is that there needs to be a National Action Plan for Medicine Shortages.
There was also a call to action for MPs to represent constituents’ concerns on this matter and maintain its high priority status.
Most Importantly – Take Care of Yourselves:
Talk to your teams—your specialist nurses, dietitians, GPs, and pharmacists. Let them know of any issues and work with them to keep yourselves well. Share information and experiences.
Talk to us—let us know about any issues and/or solutions you may have encountered.
Contact us HERE
Help us gather information by sharing your experiences, whether through individual stories or by taking part in our surveys. You can share your story here.
We will be undertaking a further PERT survey in the coming months. The launch date will be confirmed next month.
What Can You Do?
Write to your MP: It’s important to ensure they are aware of any medicines shortages affecting their constituents and how these have impacted you and your family. Providing this information enables MPs to raise your voice and experiences in Parliament, helping keep this issue at the forefront and potentially influencing policy for real change.
We have drafted a template letter that you can personalise to reflect your own experiences. Your MP may be more likely to respond to this if you include some information about why you need enzymes and how the shortages have affected your life.
If you are unsure who your local MP is, you can use the link provided HERE to find out who the MP for your area is.
Select here to find out who your MP is.
Resources:
- Specialist Dietitian Yasmin Chotai de Lima’s presentation on diet and nutrition for those living with neuroendocrine cancer is available here.
- MENETS on Nutrition and Neuroendocrine Cancer guide is available here.