Neuroendocrine Cancer UK PERT Survey 2024


Thank you for taking the time to consider completing our Pancreatic Enzyme Replacement Therapy (PERT) survey

The aim of this survey is to help us better understand the real-world impact recent shortages in PERT supply has had on our community. 

Although we are working with fellow charities, the Medicines Management Team and the Department of Health on this issue - we are keen to capture the real effect this is having on people's everyday lives. 
The anonymised information we may collect through this survey is so important . . .it can help in influencing policy and decision-making- as we have seen in other areas e.g. NICE approvals - and can help ensure solutions are appropriately proactive and patient-focused.

Your answers are anonymised - please feel free to be honest and frank in your replies - constructive criticism and suggestions for potential workable solutions -  is welcomed.

We truly appreciate your time and participation in completing this survey

Pancreatic Enzyme Replacement Therapy is an essential treatment for Pancreatic Enzyme Insufficiency

1. What type of primary neuroendocrine cancer do you have? (Tick one answer only) *


2. In which nation or region of the UK do you live ? *


3. Which - if any - of the following treatments have you had - or are you receiving for your neuroendocrine cancer? (Tick all that apply whether past or current) *


4. Which of the following PERT preparations do you USUALLY take ? (Tick one answer) *


5. Who USUALLY prescribes your PERT capsules? *


6. Where do you USUALLY get your PERT from ? *


7. How much PERT are you USUALLY prescribed? *


8. How much stock of PERT do you USUALLY keep at home - before re-filling prescription? *


9. How many PERT capsules do you USUALLY need to take every day of your USUAL dose (on average if the number varies by day)? *


10. Thinking of the last 3-6 months- have you experienced any difficulty in getting your USUAL PERT capsules (brand and dose)? *


11. IF you have experienced difficulties in getting your USUAL PERT supply - why was this? (Tick all that appply) *


12. If you have had difficulty in getting your USUAL supply - have you ever run out? *


13. If you have had difficulty in getting your USUAL supply or run out of your USUAL PERT - were you offered an alternative product? (Tick all that apply) *


14. Over the past 3-6 months, if you were offered an alternative to your USUAL PERT, have you experienced any difficulties in getting the alternative supplied? *


15. When you have experienced a difficulty in getting PERT - have you ever reduced your USUAL dosage to avoid running out? *


16. When you have experienced a difficulty in getting PERT - have you ever gone without eating or reduced your food intake because of a short supply of PERT? *


17. If you have had difficulty in getting your USUAL or an alternative supply of PERT - has this affected your well-being in any way? *



We would like to thank you for taking the time and consideration to share your experience of PERT 

We will continue to work hard - and collaboratively to reach an effective and expedient solution to the supply issues.

If you are experiencing any difficulties - as a result of PERT shortage - please let your specialist team and dietitian (if available) know . . .and we are here to help in whatever way we can.

Our Helpline is open Tuesdays - Thursdays : 10am - 4pm (if you get the ansafone leave your name and number for a callback - we only have 1 line!)
Contact us - using the NCUK contact form - available here