BBCUntil recently, Jane would have described her family as normal, law-abiding citizens. But that changed last summer, when the full-time mom began illegally purchasing cannabis oil online for her daughter Annie.
The 10-year-old suffers from a serious and rare form of epilepsy, resistant to conventional treatments.
At her worst, Annie was admitted to hospital 22 times in 22 months. Doctors warned Jane that there was a very real risk that her daughter would die 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 that quality of life,” Jane says. “And if I break the law by giving him this quality of life, am I wrong or is the law bad?”
The family cannot afford a private prescription, which costs around £2,000 a month, at one of the many clinics set up since the legalization of so-called full-spectrum medical cannabis, which includes the psychoactive ingredient THC .
File on 4 Investigates spoke 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 their supplies illegally online, some regularly smuggle them into the UK from the Netherlands. It can be bought legally there, but it is illegal to bring it into the UK without a permit.
Medicinal cannabis was legalized in the UK in November 2018 following a high-profile campaign – but full-spectrum medicines, which the parents we spoke to are getting, have not been officially permitted.
The NHS and private clinics can prescribe medicines which have not been approved – but in the case of the NHS this is rare. In the last six years, fewer than five patients have been prescribed full-spectrum cannabis oil on the NHS.
A cannabis-based oil has been approved for the treatment of epilepsy by the NHS, but it is based solely on the plant’s CBD compound, which is often found in products sold in health food stores . Many families claim that this medication does not contain all of the compounds they believe play a crucial role in preventing seizures, including the psychoactive ingredient THC.
Jane spent two years fighting to get an NHS prescription for the unlicensed full-spectrum drug. Ultimately, a review body denied her daughter’s request.
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 him £55 a bottle and is issued by an online supplier – significantly cheaper than a private legal prescription. Jane and the supplier are breaking the law.
Since taking the oil, Jane says Annie’s seizures have “reduced significantly.” “They are much less severe and 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 said it really hurt. “I thought I was going to pass out.”
Sarah has since raised enough money to pay for a legal private prescription of an unlicensed, full-spectrum cannabis medicine and says she has seen a big improvement in her daughter’s seizures.
Parent support charity MedCan, which campaigns for wider access to medical cannabis, has attempted to quantify how many UK parents are accessing the medicine illegally online.
After reviewing three online forums and interviewing parents, the study counted 382 families involved – which campaigners say is just the tip of the iceberg.
Elaine Gennard, from Hertfordshire, traveled to Amsterdam six times last year to buy full-spectrum cannabis oil for her daughter Fallon. She has a legal prescription from a doctor in the Netherlands, but bringing it into the UK without a license is illegal.
Elaine says the risk is worth it because, even after her travel costs, the cost of oil is half the price she would pay in the UK.
She claims the drug saved the life of Fallon, 30, who also suffers from treatment-resistant epilepsy, reducing his seizures from 200 a month to about eight.
“Anyone who has a child like my daughter – who could potentially die from these seizures – as a mother you do everything in your power for her,” says Elaine.
Smuggling medicines into the UK amounts to international drug trafficking, says lawyer Robert Jappie, one of the country’s leading legal experts in the medical cannabis sector. Importing a class B drug carries “quite heavy” prison sentences, he says.
“In practice, it seems very, very unlikely that anyone will be prosecuted – but it’s not a risk these families should take,” he adds. “They should be able to access this medicine safely here in the UK.”
The BBC is not aware of any families having been prosecuted.
People like Jane are turning to unlicensed cannabis dealers because it can be much cheaper than going to private UK clinics.
One dealer, who we call Steve, told us he duplicates pharmaceutically manufactured medications and gives the oils to parents for free or as a donation – as part of what he calls a compassionate program .
When we asked him about the potential dangers of supplying these illegal oils as medicines, Steve told us that each one had been tested in his laboratory.
“We have the ability to know what’s in every molecule, every compound in every bottle,” he said. “We are not reckless in what we do.”
He didn’t seem worried about being chased.
“If you want to send me to prison for stopping kids from having seizures, go ahead, good luck.”
“Lack of government action”
In 2019, a year after the legalization of medical cannabis, the government’s health and social care select committee investigated the issue of access to medicines. Its report says: “We are deeply sympathetic to the struggle of patients and their families who see others being treated with medical cannabis products, but unable to obtain them themselves.”
The responsibility for the current situation firmly lies with the government’s lack of action, believes Liberal Democrat MP Layla Moran, now chair of the committee.
“We predicted that if the government didn’t invest money in research and actively try to promote this project, it probably wouldn’t happen. And that’s exactly where we found ourselves.”
Approval of new drugs requires lengthy clinical trials that typically focus on one or two compounds. Researchers from Great Ormond Street Hospital and University College London are planning trials that will examine the cannabis compounds CBD and THC. This should start in 18 months.
The Department of Health and Social Care told the BBC that licensed cannabis medicines were regularly 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 treatments to ensure they are proven safe and effective before wider roll-out can be considered,” he said in a statement. press release.
An NHS England spokesperson said the authorized treatment had been approved by the regulator and recommended by NICE – the body which advises the NHS on the best treatments – as cost-effective.
“Many doctors and professional bodies rightly remain concerned about unlicensed products because the available evidence on their safety and effectiveness is more limited,” they added.
“Manufacturers are encouraged to engage with the UK medicines regulatory process to apply for a license and give doctors the confidence to use their products.”
