Desperate families are turning to drug dealing to keep their severely epileptic children alive amid a shortage of medical cannabis in the UK.
Parents whose children are “one stop away from death” have repeatedly struggled to obtain marijuana oil, which was legalized in 2018, and are now taking matters into their own hands.
The Mail spoke to two families who had no choice but to travel to the Netherlands and smuggle the oils back after a UK pharmacy dispensing their private prescriptions didn’t have enough to make ends meet.
Graham Levy, 64, said he was “not afraid of being arrested” because he would do “anything” to keep his daughter Fallon, 29, alive. “The government forced me to become an international drug smuggler,” said the real estate sales consultant.
Pictured is Joanne Griffiths, a mother who had to travel to the Netherlands this week to obtain medical marijuana for her severely epileptic son Ben due to supply problems in the UK.
Joanne Griffiths (left) and Graham and Elaine Levy pictured in Amsterdam where they bought essential oils for medical cannabis
The case threatens to reignite the row over the accessibility of medical cannabis after ministers legalized it following the high-profile cases of then 12-year-old Billy Caldwell and then six-year-old Alfie Dingley.
Their families had access to medical cannabis oil from abroad, which greatly reduced the number of attacks.
Sajid Javid, the home secretary at the time, said he was taking “swift action” to allow specialist doctors to prescribe medical cannabis “where there is a real need”.
But five years on, other families feel left out with the drug not yet widely available on the NHS and desperate parents paying around £2,000 a month for private prescriptions.
Not only are they financially strapped, but recent shortages have left them panicking that they will run out of vital medicines.
Target Pharmacy has the sole home office license to manufacture and distribute the oils of the Dutch company Bedrocan.
Although there is no indication that the pharmacy did anything wrong, this summer several parents struggled to receive their orders of Bedrolite and Bedica, two oils from Bedrocan. They contain varying amounts of THC, the main psychoactive component of the cannabis plant.
In emails obtained by the Postal Service, families were told the items were out of stock and there was no date for the next shipment to arrive.
The photo shows a close-up of medical cannabis oil, which is in short supply in UK pharmacies
Graham and Elaine Levy with their daughter Fallon (29), who suffers from Lennox-Gastaut syndrome (a severe form of epilepsy).
“It’s so different,” said Mr Levy, whose daughter lives with Lennox-Gastaut syndrome, a severe form of epilepsy. She takes Bedrolite and Bedica every day and has now had about ten attacks, up from 300 a month.
“A few months ago we just couldn’t find it, so I called my contact in the Netherlands,” Mr Levy added.
“I’m not afraid of being arrested because we’re on the right side of the argument. “We’ll do anything for Fallon.” Medical marijuana is heavily regulated and importing it into the UK without a license or reporting it to the Home Office is illegal.
But Mr Levy and his ex-wife Elaine Gennard are desperate. Speaking to the Post in Amsterdam after picking up the medication, they said they “can’t risk running out of medication – it’s a lifesaver.”
Mr Levy added: “We are angry that our lives have been ripped apart for the last 25 years and what we have to do now to get the medicine that will keep them alive is buy a plane ticket, come over and paying thousands of pounds in advance to bring it back.” Ms Gennard said: ‘We want our lives back.’ We want to stop it.’
They made the 400 mile round trip from Bedfordshire and paid £1,400 for a private prescription from a Dutch GP.
Mr Levy’s salary is just over £2,000 a month and the entire amount goes towards his daughter’s medication. To finance the medication, the family even sold their house a few years ago.
Joanne Griffiths, whose son Ben (14) has cerebral palsy and epilepsy, traveled from Liverpool to the Netherlands after her son was taken to hospital with prescription problems.
“We are forced to criminalize ourselves to secure the lives of our children,” says the 48-year-old entrepreneur.
The reason for the delays remains unclear, but experts say it is already far too late to make medical marijuana available to all severely epileptic children on the NHS.
Hannah Deacon’s son Alfie, who helped change the law, is one of only three children to receive medical cannabis paid for by the NHS, and without delay.
He is now 12 years old and has had no episodes of 150 chronic seizures per week for three years.
Professor Mike Barnes, a neurologist and medical cannabis expert, estimates there are up to 10,000 children with epilepsy in the UK who could benefit from medical cannabis.
A government spokesman said anyone struggling to obtain a prescription should contact their prescriber. Target Pharmacy did not respond to requests for comment.
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Crystal Leahy is an author and health journalist who writes for The Fashion Vibes. With a background in health and wellness, Crystal has a passion for helping people live their best lives through healthy habits and lifestyles.
