How desperate Britons are having to beg friends living abroad to send them essential drugs because of NHS shortages - and what YOU can do about it
A nationwide shortage of key pharmaceutical drugs is forcingNHSpatients to import them via friends living abroad, The Mail on Sunday can reveal.
Some are looking as far asIndiato access drugs – from sources which may not be safe – according to campaigners who argue this dangerous situation is a result of the Government’s failure to tackle the ongoing crisis.
The warning follows the launch of a Mail on Sunday drive to ease the shortages for some of the most vital drugs in the country, after new data revealed that, over the past two years, half of patients have struggled to get essential medication they have been prescribed.
Research suggests that some of those in shortest supply include commonly used antibiotics, hormone replacement therapies (HRT) and drugs to treat chronic conditions such as asthma,diabetes,cancer,epilepsy, cystic fibrosis and Parkinson’s.
Chelsea Oram, 19, from Shaftesbury in Dorset, told The Mail on Sunday her epileptic seizures increased when stocks of her usual drug started to dry up
Our End The Drug Shortage Nightmare campaign began last month, after we revealed the shocking story of Gaynor Edwards, a 53-year-old Parkinson’s patient who believes her debilitating condition has got worse due to a shortage of crucial medicines.
We also told the tale of seven-year-old Sophie Prest and her brother Harvey, six, both with epilepsy, who have experienced a significant rise in seizures since they were forced to switch medicines. Sophie went from having three to four seizures in the past eight months to 20 a day.
Since then we have heard from scores of desperate readers unable to access vital drugs.
Some have simply gone without until new supplies come in, or been swapped to similar drugs in the hope that they’ll work just as well and tide them over during the shortage.
But as a result, in many cases patients have fallen severely unwell, with many more left anxious about where they will get their crucial, often life-saving drugs. Others say they have lost a dangerous amount of weight or suffered debilitating side-effects by switching medicines.
But with no end in sight to the squeeze, pressure is mounting for the new Labour Government to take urgent steps to restore healthy medicine supplies.
One mother, Hannah Begbie, from London, has struggled for months to get a cystic fibrosis drug for her ten-year-old son Griffin that is vital to keep him healthy and functioning normally.
Companies are supposed to give six months’ notice if they expect supply problems. If they fail to do so, the Government can ask for more information about the delay
The drug, Creon, helps him absorb fats and oils from his diet. This normally happens with enzymes released by the pancreas, but in cystic fibrosis patients the enzymes are largely absent.
But after trying 27 pharmacies in her area without luck, Hannah resorted to extreme measures – she ordered it directly from Germany, where supplies of the drug are plentiful.
‘It is so frustrating we had to go to such lengths to get this drug,’ says Hannah.
‘There doesn’t seem to be a shortage problem in Europe, so why is there one here?’
Another cystic fibrosis patient, Lois Ffrench, 23, from Bristol, was forced to ship her Creon prescription from a family friend in India. In April, when her prescription ran out – she has to take the drug with every meal – Lois called every pharmacy in her area but was unable to find it anywhere. She was eventually able to access the drug in the UK, but says the disruption meant she lost a lot of weight while waiting.
Experts say this is a trend being seen across the country.
‘I know that patients are trying to get prescriptions fulfilled abroad,’ says Manchester-based pharmacist Thorrun Govind. ‘This is a direct result of shortages.’
The Independent Pharmacies Association – which has officially backed The Mail on Sunday’s campaign – said it was aware of patients attempting to obtain medicines from countries ‘that are not guaranteed to be safe’.
Much of the ongoing disruption has been put down to international factors, including problems with production in Asia, factory closures during the pandemic, inflation and disruption caused by the war in Ukraine.
However, experts say there are simple steps the new Government can take to mitigate the shortages quickly and ensure that patients who need medicines can get them. It was for this reason we launched our four-point plan (see panel on right) to tackle the crisis.
At the time, a former Tory Health Minister, Dr Dan Poulter, who earlier this year defected to Labour, said that our demandshave ‘clear benefits for patients,while at the same time also having the potential to save the NHS millions of pounds’.
Experts say one of the most crucial things the Government can do is to ensure that pharmaceutical companies provide adequate notice of shortages – and issue fines if they fail to comply.
Companies are supposed to give six months’ notice if they expect supply problems. If they fail to do so, the Government can ask for more information about the delay to find out whether it could have been foreseen earlier.
Research suggests some of the drugs in shortest supply are antibiotics, hormone replacement therapies and drugs to treat chronic conditions such as asthma, diabetes and cancer
If the company does not comply, there is legislation in place which means they can be issued with a one-off fine or daily fines until they provide the information.
However, while some companies are providing early warnings about shortages, according to the Nuffield Trust, one of the UK’s leading health think-tanks, a worrying number do not.
Despite this, according to data released to this newspaper under the Freedom of Information Act, the Government has never fined a drug company for not warning of medicine shortages.
Experts say the new Labour Government should take firm action against firms which do not comply.
‘The system of fines should be fit for purpose – there’s no point in having it in place if they are never used,’ says James Davies, the Royal Pharmaceutical Society director for England.
‘Those companies which consistently flout the rules and disregard the notice period should be sanctioned.’
Mark Dayan, head of public affairs at the Nuffield Trust, agrees. ‘We have heard troubling reports that this [companies providing adequate warning] doesn’t always happen,’ he says. ‘Improvements are needed to make sure there are consequences for not giving enough notice.’
One long-suffering epilepsy patient told The Mail on Sunday how her seizures increased when stocks of her usual drug started to dry up.
Chelsea Oram, 19, from Shaftesbury in Dorset, was diagnosed with the condition at the age of 12 after her mother found her on the sofa in the grip of her first seizure.
Her condition was stabilised with medication – she eventually went a year without an attack – but the seizures have returned since pharmacies started to run out of her normal drug – lamotrigine – six months ago.
While on lamotrigine, Chelsea went a year without having an attack, but her seizures have returned since pharmacies started to run out of the medication
‘I live in a small rural town and there are only a couple of pharmacies,’ says Chelsea. ‘Nine times out of ten these days they don’t have it. As a result, I’ve suffered more seizures.’
One reader said that the shortages meant she was forced to switch to a new blood pressure medication which left her violently sick.
Violet Jones, 60, from Northern Ireland, says the new tablet also triggers debilitating heartburn and stops her from sleeping.
‘I had to take early retirement, and it limits my ability to socialise, plan holidays or eat a meal with my husband,’ says Violet.
We were also contacted by a nurse who works with patients with severe lung disease and epilepsy at a leading NHS hospital, who said that a quarter of phone calls her team receive are from patients who cannot source the drugs they need.
‘We, and patients, get little or no notice of drug shortages.
‘Usually the first time the patient knows is when their pharmacy tells them they can’t fulfil the prescription,’ said the nurse, who asked to remain anonymous. ‘We have to tell patients to ring around pharmacies, for instance, throughout the county, to get the drugs they need.
‘It’s a shocking state of affairs. The Mail on Sunday’s four-point plan is to be welcomed.’
Another person severely affected is cancer patient David Richardson, 57, who due to a lack of medicine has been losing weight as he cannot digest food.
The police investigator from Leicester had a section of his pancreas removed in February, and relies on a treatment called Nutrizym 22 to help break down food.
But difficulty getting hold of it means he has been moved on to another medicine, yet that is also in short supply and, when he can get it, doesn’t work as well.
‘David has lost four stone and is still losing weight,’ his wife Karen, a retired primary school teacher, 59, says.
‘Living with cancer is bad enough but this situation should be avoidable.’
The Mail on Sunday has offered the Labour Party multiple opportunities throughout the election to commit to tackling the drug shortage crisis.
On Friday, we asked them once again whether they would take action. Each time, our questions were met with silence.
The Department of Health and Social Care has also declined to comment.
