Bryony Thomas, who is from Stroud in Gloucestershire, needs creon after being diagnosed with pancreatic cancer. Her cancer is now in remission, but she is still reliant on the drug for her digestive system to work correctly. She says there was no availability to get the medication within her county, and she had to get her mother-in-law to make a two-hour journey to a pharmacy in Crewe.
At one stage, she says she obtained the drug from another patient, who had a surplus, against regulations via Instagram. She describes her situation as "constantly stressful".
Leading pancreatic clinicians and charities including Pancreatic Cancer UK have written to the prime minister saying the absence of Pert can have a "devastating impact on people's lives", with doctors and pharmacists "inundated with requests for help from desparate patients".
The letter says that without the drug, people experience "horrendous bowel symptoms, poor diabetes control, malnutrition, and reduced absorption of other medications, all of which can have a massive impact on their health and quality of life".
There are other forms of Pert, but the charities and medical experts say while other countries have many brands available, in the UK creon "holds a very high market share". They say that with creon running short, switching by patients has depleted stocks of the alternatives. They are calling for a national process for importing Pert.