An ongoing shortage of pancreatic enzyme replacement therapy (PERT) medication, Creon, has been described as the ‘worst stock shortage’ pharmacists have ever had to deal with.

A survey of 300 pharmacies by the National Pharmacies Association (NPA) 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.

The survey found that 96% of pharmacies reported challenges supplying Creon, with 89% also reporting difficulties in supplying PERT alternatives.

PERT provides the enzymes needed to digest food and absorb nutrients by people affected by with conditions affecting pancreatic function, such as pancreatic cancer, chronic pancreatitis, cystic fibrosis and pancreatic surgery patients.

According to the NPA, pharmacies have reported 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 and contacting numerous pharmacies to attempt to find medication in stock.

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The issue has been caused by a lack of the raw ingredients and manufacturing problems, with pharmacy teams reporting that the shortages were particularly distressing due to its impact on patients.

A number of pharmacy teams have ‘spent hours hunting stock’, the NPA said, with one pharmacist describing the issue as the ‘worst stock shortage’ they have ever had to deal with.

Olivier Picard, chair of the NPA, said it was important the government convene a taskforce and a national action plan to tackle the shortage, given its impact on patients.

‘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.’

He added that with medicine shortages being all too common, 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.

The findings come as the government extended the current Serious Shortage Protocols (SSP) in place for Creon until the 21 November 2025.

Two SSPs for Creon 10,000 and 25,000 capsules have already been in place since May last year.

SSPs are only issued when there are very severe shortages of a medication or a particular formulation of it. They 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.

The NPA survey also found that 81% of pharmacies felt the current arrangements for managing shortages of Creon were inadequate with pharmacists 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.

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Alfie Bailey-Bearfield, head of influencing and health improvement at Pancreatic Cancer UK, said the findings were ‘deeply worrying’ and ‘echo the distress and frustration we are hearing from patients and their loved ones across the UK’.

He added that despite raising concerns with Department of Health and Social Care and suppliers urging them to prioritise solutions that reduce the impact on patients, progress had been ‘far too slow’ and ‘patients continue to pay the price’.

‘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,’ he said.

‘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.’

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.

A recent NPA survey found that 96% 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 has 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.

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Mike Dent, director of Pharmacy Funding at Community Pharmacy England, said: 'It is shocking, but sadly not surprising, to hear of the devasting impact medicine supply issues are having on some patients. We also know the intense strain that managing such issues puts on pharmacy teams and businesses day in and day out.

'Despite the activation of Serious Shortage Protocols for some medicines, these alone are not enough to improve supply resilience. The government must give pharmacists more flexibility to supply other available alternatives in order to better support patients, pharmacies and the wider NHS.'

A Department of Health and Social Care spokesperson said: 'We know how frustrating and distressing medicine supply issues can be for patients and the clinicians caring for them. The European-wide supply issues with Creon are caused by a limited availability of raw ingredients and manufacturing capacity constraints. We are working closely with industry and the NHS to mitigate the impact on patients and resolve the issues as quickly as possible.'