“I broke the law and bought a drug that saved my child's life.”

Until recently, Jane would have described her family as ordinary, law-abiding citizens. But things changed last summer when the full-time mother started illegally purchasing cannabis oil online for her daughter Annie.

This 10-year-old boy has a severe and rare form of epilepsy that does not respond to conventional treatments.

At its 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 she doesn't care because Annie's condition is serious. To protect their identities, we have changed their names.

”[Annie] You deserve to be happy. “She has a right to this quality of life. And if I'm breaking the law by giving her this quality of life, am I wrong? Or is the law wrong?'' Jane explains.

Families cannot afford private prescriptions, which cost around £2,000 a month, from one of the many dispensaries that have been set up since the legalization of so-called full-spectrum medical cannabis, which contains the psychoactive ingredient THC.

File on 4 Investigates spoke with several parents, including Jane, who are going to great lengths to obtain these medicinal cannabis oils to treat their children with severe epilepsy.

As well as illegally sourcing the drug online, some regularly smuggle it into the UK from the Netherlands. Although it is legal to buy in the UK, it is illegal to bring it back to the UK without permission.

Medical cannabis was legalized in the UK in November 2018 after a high-profile campaign, but the full-spectrum medicines that the parents we spoke to source are not officially approved.

Both the NHS and private clinics can prescribe unlicensed medicines, but this is rare in the NHS. In the past six years, fewer than five patients on the NHS have been prescribed full-spectrum cannabis oil.

A cannabis-based oil is approved for the NHS treatment of epilepsy, but it is based solely on the plant's CBD compound and is often found in products sold in health food stores. Many families say the drug does not contain all the compounds they believe play a key role in preventing seizures, including the psychoactive ingredient THC.

For two years, Jane fought for a prescription for an unlicensed full-spectrum drug from the NHS. In the end, the examining body rejected her daughter.

Unavailable on the NHS, she is currently giving Annie 0.4 milligrams of illegal full-spectrum cannabis oil twice a day.

She costs £55 per jar and is available from online suppliers. This is significantly cheaper than private legal prescriptions. Both Jane and the supplier are breaking the law.

Jane said Annie's seizures have “dramatically reduced” since taking the oil. “Symptoms are not very severe and do not last very long.”

However, this approach is not without risks. Sarah, from Dorset, who bought cannabis oil for her four-year-old daughter who has severe epilepsy, said her parents “could be playing with fire”.

After first deciding to try it for herself, Sarah said she felt very sick. “I thought I was going to pass out.”

Sarah has since raised enough money to pay for a legal personal prescription for a full range of unlicensed cannabis drugs, and says her daughter's epileptic seizures have significantly improved.

MedCan, a parent charity campaigning for greater access to medicinal cannabis, has set out to quantify how many parents in the UK are illegally accessing the drug online.

An investigation into three online forums and interviews with parents put the number of families involved at 382, ​​but activists suggest this is just 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. Although she has a legal prescription from a Dutch doctor, it is illegal to bring it back to the UK without permission.

Elaine says even after travel costs the oil costs half the price she would pay in the UK, so it's worth the risk.

She said the drug had saved the life of Fallon, 30, who also has treatment-resistant epilepsy, reducing his seizures from 200 to about eight a month.

“People who have children like my daughter can die from seizures, and as a mother, I would do anything for her,” says Elaine.

Smuggling medicines into the UK amounts to international drug trafficking, says lawyer Robert Jappee, one of the country's leading legal experts in the field of medical cannabis. Importing Class B drugs carries a “substantial” prison sentence.

“The reality is that it seems very, very, very unlikely that anyone will be prosecuted. But that's not a risk that these families should be taking,” he added. “They should be able to access this drug safely here in the UK.”

The BBC is not aware of any family members who have been charged.

People like Jane are turning to unlicensed cannabis retailers because they can be much cheaper than going to private clinics in the UK.

One dealer (we'll call him Steve) said that in what he calls a charity program, he duplicates pharmaceutically produced drugs and gives the oil to parents for free or as a donation. .

When we challenged him about the potential dangers of supplying these illegal oils as medicines, Steve told us that each oil had been tested in his lab. .

“We have the ability to know every molecule, every compound in every bottle, what's in there. We're not reckless in what we do,” he said. said.

He did not appear concerned about the possibility of prosecution.

“If you want to send me to jail for stopping kids from having seizures, go ahead and try.”

In 2019, a year after medical cannabis was legalized, the government's Health and Social Care Select Committee investigated the issue of access to drugs. The report said it “deeply sympathizes with the struggles of patients and their families who witness others being treated with medical cannabis-based products despite not being able to obtain cannabis themselves.” states.

Lib Dem MP Leila Moran, who currently chairs the committee, believes the government's inaction is to blame for the current situation.

“We predicted that unless governments were willing to put money into research and actively promote this, it probably wasn't going to happen. And that's exactly where we found ourselves.”

Approval of a new drug requires lengthy clinical trials, usually focusing on one or two compounds. Researchers at Great Ormond Street Hospital and University College London are planning trials to test the cannabis compounds CBD and THC. This is expected to start within 18 months.

The Department of Health and Social Care told the BBC that licensed cannabis-based medicines are regularly funded by the NHS and there is clear evidence of their quality, safety and effectiveness.

“The NHS takes an evidence-based approach to unlicensed cannabis-based treatments to ensure their safety and effectiveness are proven before wider rollout is considered.” said in a statement.

An NHS England spokesperson said the approved treatments were those approved by regulators and recommended as cost-effective by NICE, the body that advises the NHS on best treatments.

“It is understandable that many physicians and professional organizations remain concerned about unlicensed products, as the evidence available about their safety and effectiveness is even more limited,” they added.

“Manufacturers are encouraged to participate in the UK medicines regulatory process to obtain a license and enable doctors to use their products with confidence.”