NHS patients are being forced to import medicines through friends living abroad due to a nationwide shortage of key drugs, the Mail on Sunday can reveal.
Activists say the dangerous situation is the result of the government’s failure to address the ongoing crisis, with some people even seeking as far as India to get the medicine from potentially unsafe sources.
The warning comes as The Mail on Sunday launched a campaign to help ease shortages of some of the country’s most vital medicines after new data revealed half of patients have struggled to access essential medicines prescribed in the past two years.
The study found that some of the medicines most in short supply include commonly used antibiotics, hormone replacement therapy (HRT) and medications for chronic conditions such as asthma, diabetes, cancer, epilepsy, cystic fibrosis and Parkinson’s disease.
Chelsea Oram, 19, from Shaftesbury, Dorset, told the Mail on Sunday that she had been suffering from an increase in epilepsy seizures after she began running out of her usual medication.
Our ‘End the Drug Shortage Nightmare’ campaign was launched last month after we revealed the shocking story of Gaynor Edwards, a 53-year-old Parkinson’s disease patient who believes her debilitating condition has been made worse by a shortage of vital medicines.
They also told the story of Sophie Presto, a seven-year-old with epilepsy, and her six-year-old brother Harvey, who have experienced a significant increase in seizures since being forced to change their medication – Sophie’s seizures have gone from three to four a day to as many as 20 over the past eight months.
Since then, we have been contacted by numerous readers who are desperate to access vital medicines.
Some have gone without their medications until new supplies arrive, or switched to similar drugs that they hope will work just as well and help them get through the shortage.
But the result is often a serious deterioration in patients’ health, with many more left unsure about where they can get critical, potentially life-saving medicines. Some say the changes to their medications have led to dangerous weight loss and debilitating side effects.
But there is no end to the plight in sight, and pressure is growing on the new Labour government to take urgent steps to restore healthy medicines supplies.
London mother Hannah Begbie has struggled for months to obtain vital cystic fibrosis medication to keep her 10-year-old son, Griffin, healthy and functioning properly.
Companies are required to give six months’ notice if they anticipate supply problems; if they don’t, the government can ask for more information about the delays.
The drug, Creon, helps the body absorb fats and oils from food, something that is normally done by enzymes released by the pancreas, which are largely absent in people with cystic fibrosis.
But after trying 27 local pharmacies with no success, Hannah resorted to extreme measures: ordering it direct from Germany, where supplies of the drug are plentiful.
“It’s really frustrating that we had to go through so much trouble to get this medicine,” Hannah said.
“There doesn’t seem to be a shortage problem in Europe, so why is there a shortage problem here?”
Another cystic fibrosis sufferer, Lois French, 23, from Bristol, was forced to have her prescription for Cleon sent to India by a family friend. When her prescription ran out in April (she has to take the drug with every meal), Lois called all the local pharmacies but couldn’t find it anywhere. She was eventually able to get the drug in the UK, but says the confusion caused her to lose a lot of weight while she waited.
Experts say this is a trend seen across the country.
“We know that patients are trying to get their prescriptions filled overseas,” said Soran Govind, a pharmacist in Manchester, “and this is a direct result of the shortage.”
The Independent Pharmacy Association, which officially supports the Mail on Sunday campaign, said it was aware patients were trying to obtain medicines from countries where “safety cannot be guaranteed”.
Much of the ongoing turmoil has been blamed on international factors, including production problems in Asia, factory closures during the pandemic, inflation and disruption from the war in Ukraine.
But experts say the new government needs to take simple steps to quickly alleviate shortages and ensure that patients who need medicines can get them.That’s why we’ve launched a four-point plan (see right panel) to address the crisis.
At the time, Dr Dan Poulter, the former Conservative health secretary who moved to Labour earlier this year, said our demands had “clear benefits for patients whilst also potentially saving the NHS millions of pounds”.
Experts say one of the most important things the government can do is to ensure that pharmaceutical companies give adequate notice of shortages and impose fines if they don’t comply.
Companies are supposed to give six months’ notice if they expect supply problems, and if they don’t, the government can ask for more information about the delays and investigate whether they could have been foreseen sooner.
Among the medicines most in short supply, the study found, are antibiotics, hormone replacement therapy and medications for chronic diseases such as asthma, diabetes and cancer.
If companies don’t comply, there are laws in place that allow for one-time fines or daily penalties until they provide the information.
But the Nuffield Trust, one of the UK’s leading health think tanks, says that while some businesses are providing early warning of shortages, there is a worrying number who are not.
Yet the government has never fined a pharmaceutical company for failing to warn of drug shortages, according to data released to The Post under the Freedom of Information Act.
Experts say the new Labour government should take firm action against companies that don’t comply.
“Fine lines need to be fit for purpose – there’s no point in having them if they are never used,” said James Davies, director of the Royal Pharmaceutical Society.
“Companies that consistently flout the rules and ignore notice periods should be punished.”
Mark Dayan, director of communications at the Nuffield Trust, agreed: “We think this [companies providing adequate warning] “That’s not necessarily the case,” he said. “We need to improve it so that there are penalties for not giving sufficient notice.”
A long-time epilepsy sufferer told the Mail on Sunday that he had experienced an increase in seizures after he began running out of his usual medication.
Chelsea Oram, 19, from Shaftesbury, Dorset, was diagnosed with the condition at the age of 12 after her mother found her collapsed on the sofa after having her first seizure.
Her condition stabilized with medication and she eventually went a year seizure-free, but her attacks returned six months ago after pharmacies began stocking up on her regular medication, lamotrigine.
While taking lamotrigine, Chelsea was seizure-free for a year, but her seizures returned after pharmacies began running out of the medication.
“I live in a small rural town with only a few pharmacies,” Chelsea said, “and nine times out of 10, they’re not there these days. As a result, I’ve had more attacks.”
One reader told us that shortages forced them to switch to a new blood pressure medication, which made them feel extremely ill.
Violet Jones, 60, from Northern Ireland, says the new pill also gives her severe heartburn and prevents her from sleeping.
“I had to retire early, which meant I no longer had the time to socialize, plan vacations or have meals with my husband,” Violet says.
I was also contacted by a nurse working with patients with severe lung diseases and epilepsy in a major NHS hospital who told me that a quarter of the calls her team receives are from patients who cannot access the medicines they need.
“We and our patients receive little to no notice about drug shortages.”
“Usually the first time a patient finds out is when the pharmacy tells them they can’t fill their prescription,” said the nurse, who asked not to be named. “We have to tell the patient to call a pharmacy in the county, for example, to get the medicine they need.”
“This is a shocking situation. The Mail on Sunday’s four-point plan is to be welcomed.”
Another person badly affected is 57-year-old cancer patient David Richardson, who is losing weight as he is unable to digest food due to a lack of medication.
The police investigator, from Leicester, had part of his pancreas removed in February and relies on a treatment called Nutrigym 22 to help break down food.
However, because it was difficult to obtain, they had to switch to a different medication, but that too was in short supply and, even when they could get it, it was not very effective.
“David has lost four stone and is still losing weight,” says his wife Karen, 59, a former primary school teacher.
“Living with cancer is bad enough, but this situation can be avoided.”
Throughout the election campaign, the Mail on Sunday offered Labour multiple opportunities to promise to tackle the medicines shortage crisis.
On Friday, we asked them again whether they would take action. Each time, our questions were met with silence.
The Department of Health and Human Services also declined to comment.
