An Ipswich mum has said that she "cannot believe" that she cannot source essential cystic fibrosis medication for her 11-year-old son, due to a Europe-wide shortage of the drug.

Vicky Golding, of Ipswich, has expressed concern that Creon, a pancreatic enzyme replacement therapy medication, is out of stock in most pharmacies and the hospital, and ongoing problems are expected until 2026.

Ms Golding's son Max has cystic fibrosis as well as epilepsy, managed by many different medications including Kaftrio.

He is pancreatic insufficient, and Creon is needed to help his body absorb vital fats, oils, and critical medication.

While the family were able to find last month's prescription, they expect to run out of Creon in the next month and are worried as no service seems to have it in stock.

It is not the only medication that has faced shortages with those requiring medicine for diabetes and ADHD raising concerns in recent months. 

Ms Golding said: "Every month now it's just potluck whether you can get any and what strength it is. 

"I've heard people are being told to ration what they are eating now, as the less fat their diet contains, the less enzymes they must take.

"Some people are having to travel miles just to to get one pot of 100 tablets. My son takes around 30 to 40 Creon tablets a day so one pot lasts around three days.

"We were always advised in the past that people with cystic fibrosis need more calories. It's worrying."

The Ipswich mum added that Max was born with meconium ileus, a bowel obstruction, spending the first three months of his life in hospital undertaking life-saving surgery during which part of his bowel was removed.

She said: "We worry that without Creon, he could suffer with malnutrition or blockages. I just can’t believe in this day and age and in this country that it has got to this point."

According to information from the Cystic Fibrosis Trust charity, Creon will be in limited supply until 2026, which also affects people with pancreatic cancer and other pancreatic conditions.

Read more: Ipswich mum's plea for 'life saving' cystic fibrosis drug which may not get funding

David Ramsden, chief executive of the charity, said: “Many people affected by cystic fibrosis are incredibly concerned about the supply interruptions to pancreatic enzyme replacement therapies (PERTs). 

"These medicines are essential to maintain their health as they help the body absorb vital fats, oils, and critical medications and to control painful and unpleasant gut symptoms.

“We know some people are spending hours calling or travelling to multiple pharmacies or reducing their food intake and we need better communication and long-term solutions from all major stakeholders.

"Anyone having difficulties sourcing medicines should contact their CF team and our helpline can also offer support.

"Visit our website to find out how you can raise this issue with your local parliamentary candidates and have your voice heard.”

The Department of Health and Social Care added it was aware of "ongoing intermittent supply issues" with pancreatic enzyme replacement therapy, including Creon, affecting countries across Europe.

According to the government, supply issues are due to availability of the active pharmaceutical ingredients and manufacturing constraints to meet demand.

The supplier has confirmed that stock is constrained but regular quantities will be made available each month.

A serious shortage protocol has also been issued for Creon 10,000 and 25,000 capsules to allow pharmacists to limit supply to one month at a time.

The department has issued advice to healthcare professionals, and is exploring management options to mitigate risks to patients.