EXCLUSIVE
“MEDICINAL cannabis gave me back my right, as a mother, to hope. But most importantly, it gave my son back his right to life.”
That is how Charlotte Caldwell describes the impact of medical cannabis on her son Billy, who has a rare and severe form of epilepsy and once experienced hundreds of seizures every day.
Now completely seizure-free, Billy’s mother says he lives a “very full and active life” and enjoys swimming and horse riding.
His case led the governemnt to change a decades-old UK law in 2018, when cannabis-based products for medicinal use were reclassified to allow specialist doctors to prescribe them without needing approval from the Home Office.
Seven years on, Ms Caldwell is calling on Jersey to lead the next phase of reform and argues that the Island has a “unique opportunity” to build what she calls an “ethical medical cannabis system” – one that prioritises patients with genuine medical needs.
Speaking to the JEP following a recent visit to Jersey, where she met with ministers and participated in a cannabis focus group, the campaginger warned that the Island risks following many of the mistakes seen elsewhere if it fails to put in place safeguards to stop recreational users getting hold of high-grade medicine – which, she argued, could lead to a worse offering for seriously ill patients like her son.
“Right now, it’s the wild west,” she said. “There’s prescribing going on with very little clinical oversight.”
Billy’s story
Billy Caldwell was once having up to 700 seizures a day and taking 21 different medications. None worked.
In 2016, his mother flew him to California to consult a paediatric neurologist. There, she learned about medical cannabis.
After joining a clinical trial in Canada, Billy’s seizures decreased significantly. Within 12 weeks, he was nearly seizure-free.
Once a small amount of THC – the main psychoactive chemical in cannabis – was added to his treatment, his seizures stopped altogether.
And in April 2017, Billy became the first person in the UK to receive a medical cannabis prescription through the NHS – and his mother said he was “thriving”.
A year later, in May 2018, his GP was told by authorities to stop prescribing it, so she returned to Canada with her son to obtain more of the medicine.
But when they arrived back at Heathrow in June 2018, the 12-year-old’s medicine was confiscated. Within days, Billy was in intensive care.
“They confiscated the medicine, which was heartbreaking, because I knew the consequences for Billy would be his seizures would return, and ultimately death.” Ms Caldwell said.
Billy suffered a serious seizure soon after the confiscation, which his mother described as “relentless and continuous”, and he was admitted to Chelsea and Westminster Hospital.
His medicine, she said, was locked “two miles down the road in the vaults of the Home Office.”
“My worst nightmare was happening right in front of me. I was losing my little boy.”
An NHS doctor negotiated with the Home Office and retrieved the medicine the following morning.
Billy’s seizures stopped that same evening.
“He was discharged and ran out through the hospital doors to meet the world’s press, demonstrating very clearly that this was his life-saving medicine,” she said.
Within days, the then-Home Secretary granted Billy a special licence that allowed him to use medical cannabis.
By November 2018, cannabis-based medicinal products were moved from Schedule 1 to Schedule 2 under the Misuse of Drugs Regulations.
This legal reclassification acknowledged cannabis’s therapeutic value and allowed specialist doctors to prescribe it for conditions with an unmet clinical need.
“My brave little boy took on the British government and changed the law,” Ms Caldwell said. “He made history and showed the world what the courage of a child can truly do.”
What is the issue today?
Seven years on, Ms Caldwell says progress across the UK has since stalled. She believes Jersey has a “unique opportunity” to “lead” the next phase of reform by becoming “the epicentre of an ethical medical cannabis system.”
She argued the Island can reach this by addressing what she sees as a reactional use of cannabis within the medical market, which she says is causing problems.
She argued that patients who genuinely need it are being priced out because people without serious conditions can get hold of high volumes of cannabis – which, she says, risks turning the system into one driven by recreational demand rather than medical need.
Ms Caldwell also said such practices may result in a system where vulnerable people pay too much for products of a lower quality, and also face an inconsistent supply of products being dispensed
“This is happening not just in Jersey. Throughout the UK, there’s prescribing going on with very little clinical oversight,” she said, later adding: “It’s recreational prescribing under the guise of medical.”
She also raised the alarm about cases where some patients who have a more recreational interest in the drugs will change their prescriptions regularly in order to try out different types of medicinal cannabis.
Ms Caldwell compared it to buying alcohol: “You might say to your husband, ‘I fancy a glass of wine tonight’, and then the following week, ‘You know what? I just fancy a gin or a vodka’… That’s not how medicine works.”
She said the prescribing of cannabis should follow the same standards as other medicines, so doctors can prescribe medical cannabis with confidence.
“If it’s medical cannabis we’re talking about, we’ve got to focus on medical and we’ve got to look at the prescribing processes that already exist within our health system, and we’ve got to mimic those to get doctors to become more comfortable in prescribing this medicine,” Ms Caldwell said.
Separate routes for medical and recreational use
To address what she described as a “wild west” model, she called on Jersey to create a clear divide between medical and recreational use of cannabis.
While she does not support full decriminalisation of cannabis in the Island at this stage – a move due to be debated by Jersey politicians this autumn – she instead called for a “heavily controlled” programme for those who use it recreationally as an alternative to the black market.
“I don’t think that Jersey or the UK is ready for full-blown recreational use,” she said.
“But need to take the recreational prescribing out of the medical market.”
“If we are to do that, and we take the recreational out, we must provide another route for those recreational patients, because all that’s going to happen is, they’re going to go back to the black market.”
She encouraged the Jersey government to roll out what she described as a Responsible Access Pilot Programme.
She said this would provide a legal alternative for recreational users – to disrupt the illicit market and reduce harm – while also maintaining a separate, clinically focused system for patients who are reliant on cannabis for medicinal reasons.
Growing solo
Ms Caldwell believes Jersey could fix many of its issues by using cannabis grown on-Island instead of importing it from other countries.
With producers like Northern Leaf exporting the bulk of its products to Europe, she said Jersey is well placed to reduce its reliance on imported products.
“Jersey is in a prime position, because you’ve got a number of cultivators there who have already grown cannabis. You’ve got Green Island growers, Northern Leaf… that would mean Jersey would have a domestic supply of its own products.”
She credited Northern Leaf founder Gerald Snyman for helping to launch the industry in Jersey in 2019.
“We owe him a tremendous gratitude for having pioneered the cannabis industry in Jersey”
Ms Caldwell went on to argue that a local supply chain would reduce costs and improve quality for patients who can consume cannabis grown elsewhere.
She said: “Domestic supply would reduce the unnecessary layers in the supply chain, while raising the standards of the medicine because that product’s not travelling… ensuring affordability and a safe and consistent supply of high-quality medicine.”
“With local production, Jersey can ensure a safe, affordable, and consistent supply,” she said. “You eliminate unnecessary layers in the supply chain that inflate prices and compromise quality.”
She also warned about issues with imported products, pointing to investigations into safety and quality practices in Portugal and North Macedonia.
She continued: “Macedonia and Portugal are under investigation at the moment regarding their GMP [Good Manufacturing Practice] certifications.”
In May, Portuguese police seized two tonnes of cannabis from a licensed firm suspected of diverting it to illegal markets. In North Macedonia, authorities are reviewing all cannabis licences after cannabis intended for illicit trade was discovered.
The risks of getting it wrong
Her comments come after health minister Tom Binet and mental health director Andy Weir both raised concerns about the way cannabis is currently being prescribed in Jersey.
Mr Weir told a panel of politicians in May that there had been “quite a lot” of prescribed cannabis being sold in the Island according to service users, and a “notable increase” in mental health admissions among those prescribed large quantities.
The mental health director also warned that people with serious mental illness were becoming unwell more quickly when using cannabis instead of their regular medication.
Deputy Binet added that he had “some concerns about the extent of cannabis consumption on the Island” and suggested Jersey was “swift to legalise medical cannabis without making sure that we’ve done all the homework to regulate it properly”.
Ms Caldwell said she “fully supports” their comments and wants to help “get this right” and said she would continue working with ministers, officials and health professionals in Jersey.
She said: “We must ensure that Jersey’s approach to cannabis is rooted in clinical integrity, patient safety and long-term sustainability.”
