It was meant to be the watershed moment that changed Fallon Levy’s life.
In October 2018, in one of the most significant developments in modern UK law, medical cannabis was legalised.
Until then, possession of the narcotic could lead to up to five years in prison. But once the law was passed, anyone with a prescription for it was safe from prosecution.
For the then 24-year-old with Lennox Gastaut syndrome – a rare form of epilepsy that affects fewer than 5,000 people in the UK – it offered her and her family hope in the form of a specialist cannabis-based epilepsy drug, called Bedrolite, which, in theory, would slash the number of seizures Fallon suffered from 200 a month to fewer than ten.
It was thanks to media coverage of the plight of children with epilepsy, such as Fallon, that medical cannabis was legalised for ‘exceptional circumstances’. Her family believed that, after MPs backed the change in the law, she would be able to access Bedrolite on the NHS. However, seven years on, this is far from the reality of what has happened.
The change in the law has allowed dozens of newly created, Government-approved private cannabis clinics to begin handing out tens of thousands of prescriptions every year for issues which are, according to experts ‘minor’, such as ADHD, insomnia and anxiety.
Many of these firms – which charge between £100 and £200 for an appointment – stress how ‘easy’ it is to get a prescription. Some claim that patients with mental health conditions such as depression can access the drug ‘within 72 hours’.
Some experts have even claimed that the widespread rollout of medical cannabis could, in a situation mirroring the US (see panel on right), eventually lead to the legalisation of recreational use in the UK.
Elaine with her daughter Fallon levy who has Lennox Gastaut syndrome – a rare form of epilepsy that affects fewer than 5,000 people in the UK
However, despite all this, today, Fallon Levy, now 30, still cannot access Bedrolite on the NHS.
In 2023, the family were told for the second time by the Health Service that it would not offer her the £1,000-a-month drug because other epilepsy treatments are available. The family reject this claim, arguing that there are no other drugs which are effective for Fallon.
Instead, her mother Elaine Gennard, 61, admits that every month she travels to the Netherlands to buy Bedrolite and bring it back to their home in Hertfordshire. And every time she does it, due to the fact Fallon does not have a UK prescription, she is at-risk of arrest. She says she has also been forced to sell her house, and racked up more than £100,000 of credit card debt to pay for the drug.
Now Elaine has chosen to speak out against the cannabis firms that are profiting off the law change that was meant to help save her daughter from suffering.
She believes that pro-drug campaigners used the plight of families like hers to open the door to the legalisation of medical cannabis – and possibly even recreational use – in the UK.
‘There were people heavily involved in the campaign who went on to set up private cannabis clinics,’ says Elaine. ‘We were incredibly hopeful that, when the law changed, Fallon would be able to get this drug on the NHS. But, within six months of the new legislation, it became clear that the NHS wasn’t going to fund it.
‘It was around then that those same people from the campaign got back in touch and offered to sell us cannabis to help with Fallon’s condition. They said it would likely take years for Bedrolite to become available in the UK, so our best bet was to buy other cannabis products off them.
‘It’s absolutely abhorrent that these companies are now making money off the back of a law that was meant to help sick children. And the fact that people can get cannabis for much less serious issues, while Fallon cannot, shows that the law has been made a mockery of.’
Research has found that, for some people, cannabis has medical benefits.
One of the key components in it is the pyschoactive ingredient tetrahydrocannabinol, or THC. When it enters the body, it attaches to and stimulates a part of the brain called cannabinoid receptors, which are responsible for brain function and emotional responses. It is this effect which meant any products containing THC were illegal until 2018.
Cannabis for medicinal use is being legally grown in large factories in the UK
But over the past 20 years, growing research has suggested that THC can help people in severe pain.
For this reason, one commonly proposed use of medical cannabis is relieving cancer patients of pain.
In the past they would usually be offered opioids – strong painkillers. But growing concerns over their addictive properties has led researchers to look for alternatives. This has included cannabis, which contains an ingredient called cannabidiol, or CBD.
CBD oil is available over-the-counter in the UK, yet many experts believe its health benefits are limited. However research suggests that when CBD is reformulated in a laboratory, used in high doses and combined with small amounts of THC, it can block the production of molecules in the brain which cause seizures.
Studies show Lennox Gastaut syndrome patients taking Bedrolite saw their symptoms slashed by as much as 86 per cent.
These astonishing improvements contributed to the change in the law.
In June 2018, the mother of a 12-year-old boy who was severely unwell with epilepsy was threatened with arrest at Heathrow Airport for attempting to bring a cannabis-based drug into the country.
The medicine that Charlotte Caldwell was carrying was confiscated by the Border Force in front of her son Billy, as well as journalists and photographers.
The shocking scenes, which appeared in newspapers, including The Mail on Sunday, forced the hands of politicians into taking action (see panel on left).
Two days after Ms Caldwell’s arrest, the then Home Secretary Sajid Javid granted a ‘special licence’ for the drug, meaning it was returned to the family and no charges were pressed.
Mr Javid also announced his intention to change the law on medical cannabis, telling the House of Commons: ‘I will do everything in my power to make sure that these children and these parents get access to the best medical treatment.’
The move also got the backing of the then Chief Medical Officer, Professor Dame Sally Davies, who said that cannabis should be offered ‘in exceptional circumstances’.
However, experts say there was a crucial error in the legislation – the Bill made no distinction on the type of cannabis product which could be used. Instead, it only stated that the cannabis must be produced for ‘medical purposes’.
Experts say this has provided a loophole for private clinics to sell cannabis, often in the form that is illegally sold on the street as a recreational drug.
Last year, private cannabis prescriptions doubled – reaching nearly 180,000 – according to the Care Quality Commission (CQC).
Elaine Gennard took her campaign to get the law changed on medical cannabis all the way to No10
Such is the demand that companies have even set up cannabis factories in the UK, each capable of growing millions of pounds worth of the plant every year. Estimates suggest the medical cannabis industry in the UK is now worth about £400 million.
Last month, a Mail on Sunday investigation revealed that other firms are claiming cannabis can treat a range of serious conditions, including attention deficit hyperactivity disorder (ADHD), post-traumatic stress disorder, depression, anxiety and insomnia. Some advertise that ‘you don’t need a serious medical condition to be prescribed cannabis’.
Professor Trevor Jones, from King’s College London, who is also chief scientific officer at the Cannabinoid Research and Development Group, says: ‘For the most part these clinics are just providing whole leaf, like you would get illegally, which is not like pharmaceutical formulations that we have seen benefits from.
‘The intention of this change in the law wasn’t to let people go to a doctor and straight away turn to using pot, but that is what is now happening.
‘At these clinics there are different strains with varying strengths, but none of them have been clinically tested. I have worked all my life to develop good quality, scientifically tested medicines, and you just think, what on earth is going on here?’
Worst of all, experts say, the legalisation of medical cannabis has failed to benefit the majority of children it was intended to help.
As a rule, the NHS will pay for a medicine only if it is considered the best option for the patient, or when all other treatments have failed. Since 2018, its spending regulator, the National Institute for Health and Care Excellence (NICE), has approved just two cannabis products for use.
These are Epidyolex, for children with two types of severe epilepsy and people with multiple sclerosis, as well as the THC mouth-spray Sativex, also used for epilepsy. As a result, prescriptions for medical cannabis have been limited – there were only 110 cannabis-based prescriptions on the NHS in 2020.
In cases where these drugs don’t work, patients can apply to get an ‘off-label’ prescription. This is where the NHS will grant access to a drug not yet approved by NICE for a certain purpose, due to a clear unmet need. There has been only five off-label cannabis prescriptions since 2018.
But despite repeated requests, the NHS has denied Fallon Levy’s request for Bedrolite.
The family found out about the drug through others who said their epileptic children had seen massive improvements after drinking the oil every day. They said its effect has been ‘remarkable’.
Prior to that, Fallon had tried ‘every anti-epileptic drug on the NHS’ as well as getting an implant in her neck that was supposed to stop seizures. But nothing worked. Her condition meant it was hard for her to talk, chew food or even sit in a chair.
Her mum, Elaine, says that within just two weeks of starting the drug in 2018 her seizures ‘reduced dramatically’.
While on the drug, Fallon is able to live semi-independently and is able to enjoy simple pleasures such as drawing at home, going to dance classes and restaurants with her family – all things that, beforehand, were impossible.
‘Nothing was able to control her symptoms. Life for her was terrible, but now she only has around ten seizures a month – the results have been remarkable,’ says Elaine. ‘It is not just the number of seizures that has been reduced but they are also nowhere near as severe as they were before.’
However, even the intervention of former Health Secretary Matt Hancock, who in 2019 met Elaine at No 10 Downing Street and promised to get Fallon on to Bendrolite ‘within months’, was not enough to sway NHS spending chiefs.
Last week, former Deputy Prime Minister Oliver Dowden wrote a damning letter to the Health Secretary urging him to take action and ensure that Fallon gets the drug that she needs.
‘For parents, like Miss Gennard… whose child is suffering and in pain, the difficulty accessing medical cannabis is deeply frustrating,’ says Mr Dowden, who is MP for Fallon’s constituency, Hertsmere. In the letter to Wes Streeting, seen by The Mail
on Sunday, he also warned that the change in the law has ‘not translated into significant clinical use’.
Elaine says: ‘While everyone is able to get happy and high from these private clinics, Fallon still can’t get the drug she needs via the NHS. This is not what the law was for.’
Last night, Marika Graham-Woods, executive director of the Cannabis Trades Association, said: ‘The reality is that thousands of individuals rely on these treatments to manage chronic and debilitating conditions.
‘Rather than attacking private clinics, efforts should be made to address NHS prescribing barriers, improve data collection and ensure that no patient is left without the care they need.
‘The clinics fulfil the requirement for patients to access safe, reliable, medicinal cannabis, from otherwise dangerous, unregulated and illegal street dealers.’
A Government spokesman said last night: ‘Licensed cannabis-based medicines are routinely funded by the NHS where there is clear evidence of their quality, safety, and effectiveness.’
Medicinal cannabis keeps my son alive
Billy Caldwell became the first person to be prescribed cannabis-based medication on the NHS.
The then 12-year-old from County Tyrone had severe epilepsy, suffering up to 100 seizures a day, and regularly ended up in hospital before he was given specialist cannabis drugs.
Following successful treatment in the US, his local GP helped the family get the medicine in 2017, in a move that defied the law at the time.
Charlotte Caldwell with her son Billy who became the first person to be prescribed cannabis-based medication on the NHS
The Home Office threatened the doctor with being struck off for illegally giving Billy cannabis, and so he stopped prescribing it. As Billy’s supply dwindled, his mother Charlotte Caldwell took matters into her own hands, bringing back a five-month supply from Canada.
Ms Caldwell, pictured right with Billy aged 16, tipped off the media about what she had done – in an effort to gain publicity for Billy’s plight – and, when she arrived
at Heathrow in October 2018, photographers caught the moment police confiscated the medicine. The subsequent coverage piled intense pressure on the then Home Secretary, Sajid Javid, to change the law.
However Billy, now 18, can no longer access the drug through the NHS as it won’t cover the cost, so the family now get it from a private clinic. Ms Caldwell says that, without the treatment, Billy would not be alive today.
Experts: Our ‘Trojan Horse’ warnings are being ignored
Experts have raised concerns the rollout of medical cannabis could be a ‘Trojan horse’ that leads legalisation of the drug’s for recreational use.
In the US, medical cannabis was first legalised in 1996 in California, and recreational use has since become permissable in 24 states. Experts say that increasingly easy access to the drug has led to a rise in serious mental health problems.
According to research by Columbia University, people are 40 per cent more likely to be addicted to cannabis in states where it is legal.
A recent study from Canada, where cannabis was legalised in 2018, found that cases of schizophrenia have tripled since the law was changed.
Doctors are not just concerned about the mental health impact of cannabis use.
In 2022, The Mail on Sunday was first to report that hospitals in California had begun to see cases of a new condition dubbed ‘scromiting’. Triggered by the effects of high-strength cannabis, it causes patients to violently scream and vomit at the same time.
Experts have since warned that this is where the UK could be heading without tighter regulation.
In a letter, seen by The Mail on Sunday, Professor Trevor Jones, a former Government adviser, last year warned officials at the Department of Health and Social Care and the Home Office that the UK private market ‘increasingly appears to be a pseudo-recreational’ one.
He added: ‘The UK public has shown no broad demand, nor has Parliament expressed support, for legalising cannabis for recreational use.’