Until recently, Jane described her family as normal, law-abiding citizens. But that changed last summer, when the full-time mom started illegally purchasing cannabis oil online for her daughter, Annie.

A 10-year-old boy has a severe, rare form of epilepsy that is resistant to conventional treatments.

At her worst, Annie was hospitalized 22 times in 22 months. Doctors warned Jane that there was a very real possibility that her daughter would die from a seizure.

Jane says she doesn’t want to break the law – but the seriousness 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 this quality of life,” Jane explains. “And if I’m breaking the law by giving him this quality life, am I wrong or is the law wrong?”

The family cannot afford a private prescription, which costs around £2,000 a month, from one of the many clinics set up following the legalization of so-called full-spectrum medical cannabis – which contains the psychoactive ingredient THC.

On File 4 Investigates has spoken to several parents, including Jane, who are making desperate attempts to obtain these medicinal cannabis oils to treat their severely epileptic children.

As well as sourcing drugs illegally online, some people are regularly smuggling it into the UK from the Netherlands. It can be purchased legally there, but it is illegal to bring it back into the UK without a licence.

Medicinal cannabis was legalized in the UK in November 2018 after a high-profile campaign – but full-spectrum medicines, which the parents we spoke to said, are not officially licensed.

Both the NHS and private clinics may prescribe a medicine that is not licensed – but in the case of the NHS, this is rare. Over the past six years, less than one in five patients on the NHS have been prescribed full-spectrum cannabis oil.

A cannabis-based oil has been licensed for NHS treatment to treat epilepsy, but it is based on just the plant’s CBD compound – which is often found in products sold in health food stores. Many families say the drug does not contain all of the compounds they believe play a key role in preventing seizures – including the psychoactive ingredient THC.

Jane spent two years fighting for an NHS prescription for an unlicensed full-spectrum medicine. Ultimately a review organization rejected his daughter.

Unable to get it on the NHS, she now gives Annie 0.4 mg of illegal full-spectrum cannabis oil twice a day.

It costs £55 per bottle and is posted by an online supplier – much cheaper than a private legal prescription. Both Jane and the supplier are breaking the law.

Jane says that Annie’s seizures have “reduced significantly” since taking the oil. “They’re much 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 first deciding to try it on herself, Sarah says it made her feel really sick. “I thought I was going to faint.”

Sarah has since raised enough money to pay for a legal private prescription for a full-spectrum unlicensed cannabis medicine and says she has seen a big improvement in her daughter’s seizures.

Parent support charity MedCann, which campaigns for wider access to medical cannabis, has attempted to determine how many UK parents are accessing medicines illegally online.

After reviewing three online forums and interviewing parents, it counted 382 families involved – which campaigners suggest is the tip of the iceberg.

Ellen Gennard, from Hertfordshire, flew to Amsterdam six times last year to buy full-spectrum cannabis oil for her daughter Fallon. He has a legal prescription from a doctor in the Netherlands, but it is illegal to bring it back into the UK without a licence.

Elaine says it is worth the risk because, even after their travel expenses, the price of oil is half what they pay in Britain.

She says the drug has saved the life of Fallon, 30, who also suffers from treatment-resistant epilepsy, by reducing her seizures from 200 per month to about eight.

“For someone who has a child like my daughter – who could potentially die from these seizures – as a mother you would go to great lengths for her,” says Elaine.

Solicitor Robert Jappie, one of the country’s leading legal experts in the medical cannabis sector, says drug smuggling into the UK is on par with international drug trafficking. He says importing Class B drugs carries “pretty hefty” prison sentences.

He adds, “In practice, it seems very, very unlikely that anyone will be prosecuted – but that’s not a risk these families should take.” “They should be able to safely access this medicine in the UK.”

The BBC is not aware of any families who have been prosecuted.

In 2019, a year after medicinal cannabis was legalised, the government’s Health and Social Care Select Committee examined the issue of access to medicines. Its report said: “We deeply sympathize with the struggle of patients and their families who see others being treated with cannabis-based products for medicinal use, while not being able to obtain it themselves “

Liberal Democrat MP Layla Moran, who now chairs the committee, believes responsibility for the current situation lies with a lack of government action.

“We predicted that unless the government put money into research, actively tried to push for it, it probably wouldn’t happen. And that’s exactly where we found ourselves.”

Licensing new drugs 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. It is expected to start in 18 months.

The Department of Health and Social Care told the BBC that licensed cannabis-based 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-based treatments to ensure they are proven safe and effective before considering implementing them more widely,” it said in a statement. “

A spokesperson for NHS England said the licensed treatment had been approved by the regulator and recommended by NICE – the body which advises the NHS on the best treatments – as being cost-effective.

“Many doctors and professional bodies remain concerned about unlicensed products because there is more limited evidence available on their safety and efficacy,” he said.

“Manufacturers are encouraged to become involved in the UK medicines regulatory process to seek licensing and provide doctors with the confidence to use their products.”