On the evening of Friday 15th June, Billy Caldwell was rushed to hospital in an ambulance after suffering two severe seizures. The epileptic 12-year-old had been using medical cannabis to alleviate the symptoms of his epilepsy, but this medicine had been confiscated from him by customs officials in Heathrow airport exactly one week prior.
Billy was treated at Westminster and Chelsea Hospital, where his mother Charlotte Caldwell gave a press conference on the boy’s deteriorating condition. His seizures had been increasing in severity and frequency ever since his medical cannabis prescription had run out.
At 2am that night the Home Secretary Sajid Javid told his mother that Billy would get the medical cannabis he required. On Tuesday 19th June he announced a review into the re-scheduling of cannabis with a view to making medical cannabis accessible to people like Billy.
Medical cannabis is legal in Ireland, Australia, Canada to name just a few countries, but in the UK Billy’s mother is not the only parent who has been desperately trying to access this potentially life saving medication. The question is not a new one, so what was it about Billy’s case that saw the law effectively overturned by a small group of campaigners over less than 10 days?
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12-year-old Billy Caldwell from Castlederg, Northern Ireland, has autism and intractable epilepsy. He became the first patient in Britain to be prescribed cannabis-based medication on the NHS after suffering up to 100 seizures a day. His treatment originally came from the US, where medical cannabis is legal in the majority of the states.
Billy’s mother Charlotte Caldwell, who also runs the campaign Families 4 Access, said the prescription of medical cannabis almost immediately stopped Billy’s seizures and improved his quality of life. However, last month the Home Office told Billy’s doctor to stop prescribing the drug. Only one month later, Sajid Javid has called for a review into the rescheduling of medical cannabis. What changed was that an extraordinary campaign caught a government preoccupied with its own troubles unaware.
This is the first attempted draft of how a remarkable case unfolded; introducing the personalities and the driving forces behind the change, the government’s interactions with the families, and examining what the implications might be.
The announcement of the medical cannabis review will change the landscape of UK drug policy irreversibly. Here’s where we were before.
Under UK law, cannabis is currently categorised as a schedule 1 drug. That means it’s defined as having no medicinal value, so it can’t be prescribed by doctors.
The medicinal benefits of cannabis are attributed to two components: THC, the psychoactive component and CBD, the non-psychoactive component. The latter is linked to easing epileptic seizures, which Billy suffers from, and could be life-saving for someone with such a condition.
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There have been medical cannabis programmes in Canada and some US states for about a decade. Ireland, perhaps most similar to the UK case, operates under an exemption system, which allows for individual cases of necessity to be signed of by the Health Minister.
The review, announced by the Home Secretary, could potentially see cannabis’ schedule change. That would mean it could be prescribed for medical purposes, such as treating the epilepsy Billy suffers from.
Britain is catching up in a changing world. In a historic vote on Wednesday, Canada became the second country in the world to implement full legalisation and allow for a nationwide cannabis market. They legalised medical cannabis in 2001, and since the industry evolved sedately, engendering a more sympathetic attitude to the drug, and ultimately culminating in Trudeau’s pledge for full legalisation.
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Steve Moore, the director of drug think-tank Volte Face that provided logistical support to Charlotte Caldwell’s campaign for Billy, said the government’s general position on medical cannabis up until now can be decribed as: “Just not to do anything.”
Billy’s case and the media row led directly to the change in government policy on medical cannabis, but there other cases that should have made ministers realise earlier that they faced a problem.
Consider the case of six-year-old Alfie Dingley from Warwickshire. Alfie too suffers from epilepsy, sometimes experiencing up to 30 seizures a day.
In September 2017 he visited the Netherlands with his family where he was given access to medical cannabis. His situation drastically improved, said his mother Hannah Deacon.
While in the UK Alfie had 3,000 seizures and 48 hospital visits in a year, while abroad and using medical cannabis he went 24 days without a single attack. With the cannabis medication from the Netherlands, the doctors estimated that he would have about 20 seizures a year.
Ms Deacon wanted to continue treating Alfie with medical cannabis oil, a schedule 1 drug, in the UK. In February this year The Home Office responded to the request saying the drug “cannot be practically prescribed, administered or supplied to the public.”
The all-party parliamentary group on drug policy reform have been assisting with Alfie’s plight. Co-chair, Conservative MP Crispin Blunt said at the time: ”It would be heartless and cruel not to allow Alfie to access the medication. Parliament really must look at reforming our laws to allow access to cannabis for medical purposes, which has huge public support.”
The Home Office again re-emphasised its position: “Cannabis is listed as a Schedule 1 drug, as in its raw form it is not recognised in the UK as having any medicinal benefit and is therefore subject to strict control restrictions.”
The Home Office would not issue a licence to enable the personal consumption of a Schedule 1 drug.
In April 2018 the family had a private meeting with Theresa May seeking a prescription for Alfie’s much needed medication. May told the House of Common’s that she wanted the Home Office to look at the application quickly.
Ms Deacon said: “It’s a big decision and if they say no they’re condemning our son to death.”
At the time, Theresa May added that she had met Alfie and his family and that “we want to ensure that people get the treatment that they need” but “it’s important that medicines are tested properly.”
After all that, Alfie’s application was still being processed last week, and the boy has been left without this medicine for months. It wasn’t until the arrival of the Billy Caldwell case onto the scene that this looked set to change.
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When I met Charlotte Caldwell in the St Ermin Hotel in Westminster where her supporters had set up camp I was struck by two things: her no-nonsense approach to the government’s prevarication on the issue, and her resolute attitude in obtaining the medication that Billy so desperately required.
This throws into sharp relief the nature of activism in an age of cynicism. People matter and ideas matter. Without Charlotte Caldwell, none of this would have happened. Her distinctive drive, dedication and eloquence forced this change. What drives historic change in policy is not the equivocation of politicians in parliament, or half-hearted ‘we’re-only-talking-about-this
The human story also matters – that a young boy was very sick, and needed this medicine, became the stuff of cabinet wrangling is genuinely remarkable.
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Billy had been using medical cannabis for around 15 months when his doctor received an email from the Home Office calling on him to stop prescribing the medication. The medical cannabis had stopped Billy’s seizures over this period, but he only had about 20 days left of his current prescription. Ms Caldwell, a single mother, feared the return of the aggressive seizures that had plagued Billy’s life until discovering the alternative treatment.
Andrew Gilligan brought this story to the fore in the Sunday Times on 20th May with the headline ‘Cannabis ban is death sentence for my epileptic son.’ The Alfie Dingley case had surfaced the debate on medical cannabis, but Billy’s situation would raise it to the government in ways they could no longer ignore.
Just days before Billy’s prescription was set to run out Charlotte Caldwell made a bold move. She travelled with the 12-year-old to Canada to obtain a new prescription, documented by Ian Birrell for The Mail. She visited the ‘Sick Kids’ hospital in Canada where Billy prescribed a six-month supply of a cannabis oil. She planned to openly carry the medicine through Heathrow airport.
“I will ask them if they will let me keep this safe, regulated medicine that has kept my little boy alive – or are they going to take it off me, condemning my son to possible death,” said Ms Caldwell.
“If they confiscate Billy’s medicine and arrest me, they are signing his death warrant. Of course I worry about breaking the law – but I want my son illegally alive rather than legally dead.”
This was three months after Theresa May met the parents of Alfie Dingley and promised speedy action.
On Friday 8 June Charlotte and Billy landed at Heathrow airport at 10.30am, and by 11.30am the medication was confiscated by customs. By 12.30pm Charlotte was giving a press conference at Heathrow airport, and at 12.35pm Charlotte received a call from the Home Office asking for a meeting.
Ms Caldwell, from Castlederg in Co Tyrone, told the waiting press in a powerful address that should have woken the government up: “It’s Billy’s anti-epileptic medication … it’s not some sort of joint full of recreational cannabis, it is his anti-epileptic medication that he has taken off me at the airport today. I will just go back to Canada and get more and I will bring it back again because my son has a right to have his anti-epileptic medication in his country, in his own home. Let me tell you something now: we will not stop, we are not going to stop, we are not going to give up, we have love, hope, faith for our kids and we are going to continue.”
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There is an irony here, in that the UK is the world’s largest producer of legal cannabis. When Charlotte went to the Home Office, she should have been meeting Victoria Atkins, the drugs minister. However, Ms Atkins, a former criminal drugs prosecutor, voluntarily recused herself from ‘policy or decisions relating to cannabis’ after she revealed her husband Paul Kenward is the managing director of British Sugar, who own a legal cannabis farm in Norfolk which exports to America.
So, later that Friday Charlotte met with Nick Hurd, the policing minister. The atmosphere in the Home Office could only be described as “panicked”, says Steve Moore, director of Volte Face. They began to scramble together lawyers and Nick Hurd encouraged the Caldwell’s return to Northern Ireland, suggesting they seek an alternative treatment or submit an application similar to Alfie Dingley’s, sources have said.
However, without his medication Billy’s seizures returned on Tuesday night. The Home Office would still not return the confiscated medical cannabis he required.
By last Friday night Billy’s seizures were so severe he was rushed to Chelsea and Westminster Hospital in an ambulance. At 2am, Sajid Javid put special measures in place to find a clinician to prescribe him the medical cannabis. Billy was soon released from hospital and his condition rapidly improved.
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The government was thrown into disarray. Nick Hurd announced a special panel to review the status of medical cannabis in parliament on Monday, with Jeremy Hunt, Health Minister, also saying on the Today Programme: “I don’t think anyone can say that we are getting the law right on this.”
After a row between Sajid Javid and Theresa May in cabinet on Tuesday morning (where Ms May fought against the topic of medical cannabis even being on the agenda) Javid told the House of Commons that it was time to review the scheduling of cannabis for medical use.
“It has become clear to me since becoming Home Secretary that the position we find ourselves in is not satisfactory,” he said. “It is not satisfactory for the parents, it is not satisfactory for the doctors and it is not satisfactory for me.”
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The landmark announcement might have far reaching implications. With Theresa May’s position already weak, her perceived reticence to engage with Billy’s case looks to be a sign of her inflexibility. Sajid Javid on the other hand has come out as a quick thinking and fast reacting force.
Watching the campaign unfold and seeing Ms May’s response highlighted her inadequacies. She argued on Tuesday with Sajid Javid that medical cannabis was not even on the government’s agenda. What kind of Prime Minister can see the pages of the Sunday papers plastered with images of a very ill child desperately in need of a medication, and not even consider it to be part of her agenda?
The Alfie Dingley case has been in the government’s peripheral vision since at least the beginning of 2018, but Ms Caldwell’s refusal to capitulate to government demands that she returns to Northern Ireland, and that she submits an application for the medication, made the pressing issue no longer avoidable.
“They’re classic hacks,” a source close to the campaign said about the government’s cannabis policy. “They’ve waffled for years. They haven’t done anything.”
Steve Moore of Volte Face has said this case proves that the government isn’t “moribund”, despite Brexit taking up space in most of the government’s mind. “On Friday 15th May at 4pm the Home Office were saying they couldn’t do anything, by Tuesday they’re changing the laws of the land.”
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But the question is what further implications this will have for the rest of the UK’s drug policy.
Javid said cannabis’s scheduling will be reconsidered under a two-part review. The first part of that review, led by Professor Sally Davies, the government’s chief medical officer, will address the evidence available for the medicinal benefits of cannabis-based medicines. The review will decide which forms of cannabis-based medicines should be considered in the second part of the review, to be led by the Advisory Council on the Misuse of Drugs. Javid says this will assess the rescheduling “based on the balance of harms and public health needs.”
However, Javid has emphatically claimed that this review on medical cannabis will not extend to recreational cannabis. With Canada legalising the recreational use of weed this week and certain states in America legalising the recreational use of weed over the past few years the public sentiment could be changing.
The growing tolerance of weed, possibly emboldened by the announcement of the review for medical cannabis, looks likely to boost the campaigners who are calling for full legalisation.
We’ll see. On medical cannabis it is already an extraordinary tale of the individual against the state. A single mother from Northern Ireland took on the British government. And she won.