Families forced to smuggle in life-saving cannabis oil for children with epilepsy amid shortages of medical wonderdrug in the UK

Desperate families are turning to drug smuggling to keep their severely epileptic children alive amid shortages of medicinal cannabis in the UK.

Parents whose children are ‘one seizure away from death’ have repeatedly struggled to get hold of cannabis oil, legalised in 2018, and are now taking matters into their own hands.

The Mail has spoken to two families left with no choice but to travel to Holland and smuggle the oils back after a pharmacy in the UK which delivers their private prescriptions did not have enough to go around.

Graham Levy, 64, said he had ‘no fear of being arrested’ as he will do ‘anything’ to keep his daughter Fallon, 29, alive. ‘The Government has forced me to become an international drug smuggler,’ said the property sales consultant.

Pictured, Joanne Griffiths, a mother who had to travel to Holland this week to get hold of medicinal cannabis for her severely epileptic son, Ben, due to supply issues in the UK

Joanne Griffiths (left) and Graham and Elaine Levy, pictured in Amsterdam, where they have bought vital medicinal cannabis oils

The issue threatens to reignite the row over the accessibility of medicinal cannabis after ministers legalised it following the high-profile cases of Billy Caldwell, then 12, and Alfie Dingley, then six.

Their families accessed medicinal cannabis oil from abroad and it significantly cut their seizures.

Sajid Javid, home secretary at the time, said he ‘took swift action’ to allow specialist doctors to prescribe medicinal cannabis ‘where there is a real need’.

But five years on, other families feel forgotten as the medicine is still not widely available on the NHS, leaving desperate parents paying around £2,000 a month for private prescriptions.

Not only are they financially crippled but recent shortages have left them panicking that they will run out of the crucial drug.

Target Pharmacy has the sole Home Office licence to make and distribute the oils from Dutch company Bedrocan.

While there is no suggestion the pharmacy has done anything wrong, this summer several parents struggled to receive their orders of Bedrolite and Bedica, two of Bedrocan’s oils. They contain varying amounts of THC, the main psychoactive constituent of the cannabis plant.

In emails seen by the Mail, the families were told the items were not in stock and there was no date for the arrival of the next batch.

Pictured, a close-up of the medical cannabis oil that is in short supply across UK pharmacies

Graham and Elaine Levy, pictured with their daughter Fallon (29), who has Lennox-Gastaut syndrome (a severe form of epilepsy)

‘It’s so hit and miss,’ said Mr Levy, whose daughter lives with Lennox-Gastaut syndrome, a severe form of epilepsy. She takes Bedrolite and Bedica every day and has gone from having 300 seizures a month to around ten.

‘A few months ago we just couldn’t get it so I rang my contact in Holland,’ added Mr Levy.

‘I’ve got no fear of being arrested because we are on the right side of the argument. We will do anything for Fallon.’ Medicinal cannabis is tightly regulated and importing it into the UK without a licence or telling the Home Office is illegal.

But Mr Levy and his ex-wife Elaine Gennard are desperate. Speaking to the Mail in Amsterdam after collecting the medication, they said they ‘can’t risk running out – it’s a life saver’.

Mr Levy added: ‘We are angry that for the past 25 years our lives have been ripped apart and what we are having to do now to get the medicine that keeps her alive is buy a plane ticket, come along and pay thousands of pounds before bringing it back.’ Ms Gennard said: ‘We want our lives back. We want to stop doing this.’

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 a little over £2,000 a month and all of it goes on his daughter’s medicine. The family even sold their home a few years ago to fund the medication.

Joanne Griffiths, whose son Ben, 14, has cerebral palsy and epilepsy, made the trip to the Netherlands from Liverpool after prescription problems left her son in hospital.

‘We are being forced to criminalise ourselves to keep our children alive,’ said the business owner, 48.

The cause of the delays remains unclear but experts say making medicinal cannabis available to all severely epileptic children on the NHS is long overdue.

Hannah Deacon’s son Alfie, who helped change the law, is one of only three children getting medicinal cannabis paid for by the NHS and it is never delayed.

Now 12, he has gone from 150 chronic seizures a week to being episode-free for three years.

Professor Mike Barnes, a consultant neurologist and medical cannabis expert, estimates there are up to 10,000 epileptic children in the UK who could benefit from medicinal cannabis.

A government spokesman said anyone struggling to get a prescription should contact their prescriber. Target Pharmacy did not reply to requests for comment.