Pharmacies have warned of patients skipping meals, rationing doses and travelling distances of over 30 miles to get hold of supply due to ongoing shortages of the medication Creon®.
A sample survey by the National Pharmacy Association of 300 pharmacies found that 96 per cent of pharmacies reported challenges supplying Creon®, with 89 per cent also reporting difficulties in supplying PERT alternatives.
Pharmacies have reported to the NPA that some patients were tightly rationing their medication. Examples included patients who were only eating one meal a day to ration their Creon, patients going without medication or travelling long distances and contacting numerous pharmacies to attempt to find medication in stock.
Creon® is a pancreatic enzyme replacement therapy (PERT), which helps people living with conditions such as cystic fibrosis, pancreatitis, and pancreatic cancer to digest food.
The findings come as the government last week extended the current Serious Shortage Protocols (SSP) in place for Creon® until the 21st November 2025.
Two SSPs for Creon® 10,000 and 25,000 capsules have already been in place since May 2024.
These SSPs allow pharmacies to supply a reduced quantity of Creon capsules that might be in stock, without having to send a patient back to their GP to get a new prescription.
These are only issued when there are very severe shortages of a medication or a particular formulation of it.
The survey also found that 81 per cent of pharmacies felt the current arrangements for managing shortages of Creon® are inadequate.
Pharmacists are still having to refer patients back to their prescriber to obtain a new prescription for an alternative PERT product, stock permitting, or an unlicensed Creon product .
One pharmacist described the issue as the ‘worst stock shortage’ they have ever had to deal with. Pharmacy teams reported to the NPA that the shortages were particularly distressing due to its impact on patients and a number had spent hours hunting stock.
The NPA and Pancreatic Cancer UK have urged the government to bring together the supply chain and introduce a national action plan to address the shortages and support patients with alternative care.
Creon® is one of a number of medicines pharmacies are finding in short supply.
A recent NPA survey found that 96 per cent of pharmacies were unable to dispense a prescription at least once a day despite having a clinically appropriate alternative formulation in stock. This is due to current legislation preventing pharmacists from making substitutions or even a change in strength if a medicine is not available, unless they are supplying in accordance with an SSP.
The NPA have urged the government to change the law to make it easier for pharmacists to make substitutions to prescriptions where it is safe to do so, warning the current situation poses a risk to patient safety.
Olivier Picard, Chair of the National Pharmacy Association, said:
“Pharmacies are at the sharp end of medicine shortages, spending hours hunting stock and supporting frustrated and concerned patients.
“As this distressing survey shows ongoing supply problems with Creon® has had a profound effect on the patients who depend on it to survive and lead a normal life.
“It simply cannot be right that in the 21st century patients are skipping meals in order to ration their medication.
"Medicine shortages not only cause huge inconvenience but can risk serious patient safety issues, particular in the cases of PERTs including Creon®.
“Although we recognise this situation is complex and not the fault of the government, it’s important they convene a taskforce and a national action plan to tackle this particular shortage given its impact on patients.
"Medicine shortages are all too common so highly trained pharmacists should also be permitted to use their professional judgment to supply alternative medicines – where it is safe and appropriate - in the event of the prescribed version being unavailable.”
Alfie Bailey-Bearfield, Head of Influencing & Health Improvement at Pancreatic Cancer UK, said:
"These deeply worrying findings echo the distress and frustration we are hearing from patients and their loved ones across the UK.
"Thousands of people affected by pancreatic cancer rely on taking PERT tablets every time they eat simply to digest their food and absorb nutrients – something most of us take for granted. It's totally unacceptable that they are still taking desperate measures which puts their health, wellbeing and their eligibility for treatment at risk.
"For over a year, we have been raising concerns with Department of Health and Social Care officials and PERT suppliers, urging them to prioritise solutions that reduce the impact on patients. But despite these conversations, progress has been far too slow and patients continue to pay the price.
"Resolving the shortages demands strong, national leadership from the UK Government. It is critical that they take immediate, decisive action and explore every available option to increase supply, including directly purchasing this vital medication from countries with a surplus.
"This crisis continues to put people's health on the line, and they cannot afford to wait any longer. The situation is unacceptable and it demands immediate action."
