'I break the law to buy my child's life-saving cannabis drug'

Until recently, Jane would person described her household arsenic normal, law-abiding citizens. But that changed past summer, erstwhile the full-time mum started illegally buying cannabis lipid online for her daughter, Annie.

The 10-year-old has a severe, uncommon benignant of epilepsy, resistant to accepted treatments.

At her worst, Annie was admitted to infirmary 22 times successful 22 months. Doctors warned Jane determination was a precise existent imaginable of her girl dying from a seizure.

Jane says she doesn't privation to interruption the instrumentality - but the severity of Annie's information is specified that she doesn't care. We person changed their names to support their identities.

"[Annie] deserves to beryllium happy. She deserves to person this prime of life," Jane explains. "And if I'm breaking the instrumentality by giving her this prime of life, americium I incorrect oregon is the instrumentality wrong?"

The household cannot spend a backstage prescription, which costs astir £2,000 each period from 1 of the galore clinics that person been established since the legalisation of alleged full-spectrum aesculapian cannabis - which includes the psychoactive constituent THC.

File connected 4 Investigates has spoken to respective parents, including Jane, who are going to utmost lengths to get these medicinal cannabis oils to dainty their severely epileptic children.

As good arsenic sourcing the drugs illegally online, immoderate are regularly smuggling it into the UK from the Netherlands. It tin beryllium bought determination legally, but it is amerciable to bring it backmost into the UK without a licence.

Medicinal cannabis was legalised successful the UK successful November 2018 pursuing a high-profile run - but full-spectrum medicines, which the parents we spoke to are sourcing, person not been officially licensed.

Both the NHS and backstage clinics tin prescribe medicine that hasn't been licensed - but successful the NHS's case, it is rare. In the past six years, less than 5 patients person been prescribed full-spectrum cannabis lipid connected the NHS.

One cannabis-based lipid has been licensed for NHS attraction for epilepsy, but this is based connected conscionable the plant's CBD compound - often recovered successful products sold successful wellness nutrient shops. Many families accidental this cause does not incorporate each the compounds they judge play a important relation successful preventing seizures - including the psychoactive constituent THC.

Jane spent 2 years warring for an NHS medicine for the unlicensed full-spectrum medicine. Eventually a reappraisal assemblage turned her girl down.

Unable to get it connected the NHS, she present gives Annie 0.4 milligrams of illicit full-spectrum cannabis lipid doubly a day.

It costs her £55 a vessel and is posted by an online supplier - importantly cheaper than a backstage ineligible prescription. Both Jane and the supplier are breaking the law.

Since taking the oil, Jane says Annie's seizures person "dramatically reduced". "They are a batch little terrible and they don't past arsenic long."

But this attack is not without risks. "Sarah" from Dorset, who bought cannabis lipid for her severely epileptic four-year-old daughter, says parents are "potentially playing with fire".

After deciding to effort it connected herself first, Sarah says it made her consciousness truly unwell. "I thought I was going to walk out."

Sarah has since raised capable wealth to wage for a ineligible backstage medicine for full-spectrum unlicensed cannabis medicine and says she has seen a large betterment successful her daughter's epileptic seizures.

Parent enactment foundation MedCan, which campaigns for wider entree to aesculapian cannabis, has attempted to quantify however galore UK parents are accessing the medicines illegally online.

After conducting a reappraisal of 3 online forums and interviewing parents, it has counted 382 families progressive - which campaigners suggest is the extremity of the iceberg.

Elaine Gennard, from Hertfordshire, flew to Amsterdam six times past twelvemonth to bargain full-spectrum cannabis lipid for her girl Fallon. She has a ineligible medicine with a doc successful the Netherlands, but bringing it backmost to the UK without a licence is illegal.

Elaine says it is worthy the hazard as, adjacent aft her question expenses, the outgo of the lipid is fractional the terms she would wage successful the UK.

She says the medicine has saved the beingness of Fallon, 30, who is besides surviving with treatment-resistant epilepsy, reducing her seizures from 200 per period to astir eight.

"Anyone who has a kid similar my girl - that could perchance dice from these seizures - arsenic a parent you spell to immoderate magnitude for her," says Elaine.

Smuggling the medicines into the UK amounts to planetary cause trafficking, says solicitor Robert Jappie, 1 of the country's starring ineligible experts successful the aesculapian cannabis sector. Importation of a Class B cause has "fairly hefty" situation sentences, helium says.

"In practice, it seems very, very, improbable anyone would beryllium prosecuted - but it's not a hazard that these families should beryllium taking," helium adds. "They should beryllium capable to entree this medicine safely present successful the UK."

The BBC is not alert of immoderate families who person been prosecuted.

People similar Jane are turning to unlicensed cannabis dealers due to the fact that they tin beryllium overmuch cheaper than going to backstage UK clinics.

One dealer, who we are calling Steve, told america helium replicates pharmaceutically-manufactured drugs and gives the oils to parents for escaped oregon a donation - successful what helium calls a compassion programme.

When we challenged him connected the imaginable dangers of supplying these amerciable oils arsenic medicines, Steve told america each 1 was tested successful his laboratory.

''We person the quality to cognize what each azygous molecule, each azygous compound successful each azygous vessel is successful there," helium said. "We're not reckless successful what we're doing."

He didn't look acrophobic astir the imaginable of being prosecuted.

"If you privation to nonstop maine to situation for stopping children having seizures, spell ahead, bully luck with that."

In 2019, a twelvemonth aft medicinal cannabis was legalised, the government's Health and Social Care prime committee investigated the contented of entree to the drugs. Its study said: "We are profoundly sympathetic towards the conflict of patients and their families who spot others being treated with cannabis-based products for medicinal use, whilst not being capable to get it themselves."

The work for the existent concern lies firmly with the deficiency of authorities action, believes Liberal Democrat MP Layla Moran, present seat of the committee.

"We predicted that unless the authorities enactment wealth into research, actively tried to propulsion connected this, it astir apt wouldn't happen. And that's precisely wherever we recovered ourselves."

Licensing of caller medicines requires lengthy objective trials that usually absorption connected 1 oregon 2 compounds. Researchers astatine Great Ormond Street Hospital and University College London are readying trials that volition analyse the cannabis compounds CBD and THC. This is expected to commencement successful 18 months.

The Department of Health and Social Care told the BBC licensed cannabis-based medicines were routinely funded by the NHS wherever determination was wide grounds of their quality, safety, and effectiveness.

"The NHS is taking an evidence-based attack to unlicensed cannabis-based treatments to guarantee they are proved harmless and effectual earlier they tin beryllium considered for roll-out much widely," it said successful a statement.

A spokesperson for NHS England said licensed attraction had been approved by the regulator and recommended by NICE - the assemblage that advises the NHS connected champion treatments - arsenic being cost-effective.

"Many doctors and nonrecreational bodies rightly stay acrophobic astir unlicensed products arsenic determination is much constricted grounds disposable connected their information and efficacy," they added.

"Manufacturers are encouraged to prosecute with the UK medicines regulatory process successful bid to question a licence and supply doctors with the assurance to usage their products."