Until recently, Jane would have described her family as normal, law-abiding citizens. But that changed last summer, when the full-time mum started illegally buying cannabis oil online for her daughter, Annie.
The 10-year-old has a severe, rare type of epilepsy, resistant to conventional treatments.
At her worst, Annie was admitted to hospital 22 times in 22 months. Doctors warned Jane there was a very real prospect of her daughter dying from a seizure.
Jane says she doesn’t want to break the law – but the severity of Annie’s condition is such that she doesn’t care. We have changed their names to protect their identities.
“[Annie] deserves to be happy. She deserves to have this quality of life,” Jane explains. “And if I’m breaking the law by giving her this quality of life, am I wrong or is the law wrong?”
The family cannot afford a private prescription, which costs approximately £2,000 each month from one of the many clinics that have been established since the legalisation of so-called full-spectrum medical cannabis – which includes the psychoactive ingredient THC.
File on 4 Investigates has spoken to several parents, including Jane, who are going to extreme lengths to obtain these medicinal cannabis oils to treat their severely epileptic children.
As well as sourcing the drugs illegally online, some are regularly smuggling it into the UK from the Netherlands. It can be bought there legally, but it is illegal to bring it back into the UK without a licence.
Medicinal cannabis was legalised in the UK in November 2018 following a high-profile campaign – but full-spectrum medicines, which the parents we spoke to are sourcing, have not been officially licensed.
Both the NHS and private clinics can prescribe medicine that hasn’t been licensed – but in the NHS’s case, it is rare. In the past six years, fewer than five patients have been prescribed full-spectrum cannabis oil on the NHS.
One cannabis-based oil has been licensed for NHS treatment for epilepsy, but this is based on just the plant’s CBD compound – often found in products sold in health food shops. Many families say this drug does not contain all the compounds they believe play a crucial role in preventing seizures – including the psychoactive ingredient THC.
Jane spent two years fighting for an NHS prescription for the unlicensed full-spectrum medicine. Eventually a review body turned her daughter down.
Unable to get it on the NHS, she now gives Annie 0.4 milligrams of illicit full-spectrum cannabis oil twice a day.
It costs her £55 a bottle and is posted by an online supplier – significantly cheaper than a private legal prescription. Both Jane and the supplier are breaking the law.
Since taking the oil, Jane says Annie’s seizures have “dramatically reduced”. “They are a lot less severe and they don’t last as long.”
But this approach is not without risks. “Sarah” from Dorset, who bought cannabis oil for her severely epileptic four-year-old daughter, says parents are “potentially playing with fire”.
After deciding to try it on herself first, Sarah says it made her feel really unwell. “I thought I was going to pass out.”
Sarah has since raised enough money to pay for a legal private prescription for full-spectrum unlicensed cannabis medicine and says she has seen a big improvement in her daughter’s epileptic seizures.
Parent support charity MedCan, which campaigns for wider access to medical cannabis, has attempted to quantify how many UK parents are accessing the medicines illegally online.
After conducting a review of three online forums and interviewing parents, it has counted 382 families involved – which campaigners suggest is the tip of the iceberg.
Elaine Gennard, from Hertfordshire, flew to Amsterdam six times last year to buy full-spectrum cannabis oil for her daughter Fallon. She has a legal prescription with a doctor in the Netherlands, but bringing it back to the UK without a licence is illegal.
Elaine says it is worth the risk as, even after her travel expenses, the cost of the oil is half the price she would pay in the UK.
She says the medication has saved the life of Fallon, 30, who is also living with treatment-resistant epilepsy, reducing her seizures from 200 per month to about eight.
“Anyone who has a child like my daughter – that could potentially die from these seizures – as a mother you go to any length for her,” says Elaine.
Smuggling the medicines into the UK amounts to international drug trafficking, says solicitor Robert Jappie, one of the country’s leading legal experts in the medical cannabis sector. Importation of a Class B drug has “fairly hefty” prison sentences, he says.
“In practice, it seems very, very, unlikely anyone would be prosecuted – but it’s not a risk that these families should be taking,” he adds. “They should be able to access this medication safely here in the UK.”
The is not aware of any families who have been prosecuted.
People like Jane are turning to unlicensed cannabis dealers because they can be much cheaper than going to private UK clinics.
One dealer, who we are calling Steve, told us he replicates pharmaceutically-manufactured drugs and gives the oils to parents for free or a donation – in what he calls a compassion programme.
When we challenged him on the potential dangers of supplying these illegal oils as medicines, Steve told us each one was tested in his laboratory.
”We have the ability to know what every single molecule, every single compound in every single bottle is in there,” he said. “We’re not reckless in what we’re doing.”
He didn’t appear concerned about the prospect of being prosecuted.
“If you want to send me to prison for stopping children having seizures, go ahead, good luck with that.”
‘Lack of government action’
In 2019, a year after medicinal cannabis was legalised, the government’s Health and Social Care select committee investigated the issue of access to the drugs. Its report said: “We are deeply sympathetic towards the struggle of patients and their families who see others being treated with cannabis-based products for medicinal use, whilst not being able to obtain it themselves.”
The responsibility for the current situation lies firmly with the lack of government action, believes Liberal Democrat MP Layla Moran, now chair of the committee.
“We predicted that unless the government put money into research, actively tried to push on this, it probably wouldn’t happen. And that’s exactly where we found ourselves.”
Licensing of new medicines requires lengthy clinical trials that usually focus on one or two compounds. Researchers at Great Ormond Street Hospital and University College London are planning trials that will examine the cannabis compounds CBD and THC. This is expected to start in 18 months.
The Department of Health and Social Care told the licensed cannabis-based medicines were routinely funded by the NHS where there was clear evidence of their quality, safety, and effectiveness.
“The NHS is taking an evidence-based approach to unlicensed cannabis-based treatments to ensure they are proved safe and effective before they can be considered for roll-out more widely,” it said in a statement.
A spokesperson for NHS England said licensed treatment had been approved by the regulator and recommended by NICE – the body that advises the NHS on best treatments – as being cost-effective.
“Many doctors and professional bodies rightly remain concerned about unlicensed products as there is more limited evidence available on their safety and efficacy,” they added.
“Manufacturers are encouraged to engage with the UK medicines regulatory process in order to seek a licence and provide doctors with the confidence to use their products.”
