The mother of a severely epileptic boy who relies on medicinal cannabis says “the war has ended” after Home Secretary Sajid Javid announced a review into laws around the drug.
Charlotte Caldwell, whose son Billy made headlines when his supply of medical cannabis was confiscated at Heathrow Airport, told talkRADIO the current legislation is “outdated”.
“It’s a lifeline for hundreds of thousands of children with epilepsy, who need a specific medication, THC,” she told Eamonn Holmes.
THC is tetrahydrocannabinol, the main psychoactive element of cannabis, and is a banned substance.
Charlotte and Billy Caldwell
For this reason, the cannabis derivative CBD oil, which can be bought legally in the UK, does not help Billy, 12, as it contains different chemicals.
“It’s Billy’s anti-epileptic medication,” she explained.
“I would never declare that Billy is cured of that medicinal cannabis can cure epilepsy because that is a dangerous thing to do.
“Billy is on the higher spectrum of autism and in the 19 months he’s been using cannabis, I can see an improvement in his autistic symptoms too. But again, I’d never say it’s a cure.”
Ms Caldwell added “it wouldn’t be an issue” in the US, where medical use of cannabis is legal in 29 states. Canada has recently legalised it completely.
Billy was rushed to hospital on June 15 after having his cannabis oil taken away the day before. Ms Caldwell explained the chain of events.
“This week was a perfect example of what happens, when his medication was confiscated,” she said.
“I declared it [at customs]. I realise and understand that in medicinal cannabis, a certain percentage of THC is illegal. I wanted to be honest and transparent. I genuinely believed customs would let me go through because I had Billy’s care plan in my hand.
“They took the medicine, and handed me a letter from Nick Hurd. It was immediately confiscated.”
Charlotte giving Billy his cannabis oil, which she administers with a syringe. Image: Charlotte Caldwell/Keep Billy Alive/Facebook
Ms Caldwell says the customs official appeared upset during their conversation.
“I opened the file and started to go through the consultation I had with the doctor in Canada. I also had the data from clinical trials of medicinal cannabis in Canada.
“I was talking to them for 45 minutes, but they were really nice, the customs guy was actually crying. He said, ‘I’m a father myself, I don’t want to do this’.”
It didn’t take long for Billy to start having severe seizures.
“Monday night, Tuesday morning, he had a seizure. It was the first one he’d had for a few months. Then on Tuesday he had two more until he was having them back to back.
“I want to thank the NHS staff at the Chelsea and Westminster hospital, they were truly amazing people.
“They got him stabilised, but the doctors were appalled, the nurses were appalled. They couldn’t believe his anti-epileptic medication was abruptly stopped. The normal medical protocol is that it’s weaned down slowly. In this particular case we have a minister of the crown that just stopped it.”
The doctors contacted the Home Office themselves, Ms Caldwell says, and insisted the cannabis oil must be returned as Billy was a “medical emergency”.
Javid then granted her a 20-day license to use the medication, and has since announced the review.
Billy Caldwell. Image: Charlotte Caldwell/Keep Billy Alive/Facebook
An expert panel of clinicians will also be assembled to advise the government on medical cannabis use.
Billy was discharged just two days after his cannabis oil being re-administered.
“When Billy’s medication was removed I knew the consequences. I was shocked at how quickly the seizures started,” said Ms Caldwell.
“I’ve lost count of the amount of seizures Billy has endured in his short life, the amount of times I’ve stood over him and prayed when he’s close to death.
“We don’t know [his life expectancy]. One seizure could kill him. We don’t know when that’s going to strike.”
She said that if she were granted the meeting she wants with Javid, she’d tell him that legalising medicinal cannabis for children with epilepsy would “save hundreds of lives”.
Watch the full interview with Charlotte Caldwell above.