As a young epilepsy sufferer’s supplies of the drug – which his mother claims stops him having 100 seizures a day – is confiscated at Heathrow, we ask three patients with devastating conditions if the controversial medication should be available on the NHS.
IT IS described by those who depend upon it as a “miracle” drug, alleviating both physical pain and mental illness.
But the British Government nevertheless refuses to acknowledge the benefits of medicinal cannabis oil – or allow those whose lives have been transformed by it to receive their medication in a safe, legal, regulated manner.
“There is clinical evidence from countries including America, Canada, Australia, Israel and the Netherlands that cannabis oil has provable benefits for those suffering from some very debilitating conditions,” says Peter Reynolds, president of Clear, who are campaigning for a reform of the law.
“Why would those places allow its use if there wasn’t a legitimate reason for it?”
This week Charlotte Caldwell, whose 12-year-old son Billy has a severe form of epilepsy that can give him up to 100 seizures a day, was stopped by officials at Heathrow after trying to “openly smuggle” illegal cannabis oil into the country from Canada.
Billy’s medicine was confiscated under orders from Home Office minister Nick Hurd.
Last year Billy, from Castlederg, Northern Ireland, became the first child to be prescribed cannabis oil on the NHS – and his condition improved immediately, reportedly going 250 days without a seizure.
However the Home Office overturned the ruling and his GP was ordered not to renew the prescription.
In desperation Charlotte travelled to Canada for what she described as “a small bottle of oil that’s keeping my son alive” and yesterday vowed to return to Canada to “get more and bring it back again”.
She also said that she feared that without the cannabis oil the seizures would “eventually kill” her son.
“It’s Billy’s anti-epileptic medication that Nick Hurd has taken away,” she said. “It’s not some sort of joint full of recreational cannabis.
We are not going to stop, we are not going to give up. We have love, hope and faith for our kids and we are going to continue.” Billy’s case is mirrored by that of Alfie Dingley.
The six-year-old also has epilepsy but after being treated with cannabis oil in the Netherlands his rate of seizures fell from 30 a day to just one a month.
His parents Drew and Hannah are campaigning for their son to be allowed to take the drug legally and recently delivered a 370,000-strong petition to the Home Office.
“It’s a big decision and if they say no they’re condemning our son to death,” said mum Hannah, who lives in Kenilworth, Warwickshire.
Indeed for thousands of British people cannabis oil is a lifeline.
The drug comes in two forms, oil that contains THC, which is the psychoactive constituent of cannabis that induces the “high” feeling you might get from smoking a joint and cannabidoil or CBD, a chemical produced by the plant that is entirely non-psychoactive.
While CBD is legal in this country it is not available on the NHS and the lack of clinical trials means it has to be classified as a “food supplement” rather than a medicine.
Should anyone suffering wish to use THC oil they would need to obtain it through non-legal means – with the attendant risk of criminality and the uncertainty over exactly what they might be getting.
As the law stands the maximum penalty for possession is five years in prison and an unlimited fine.
Billy and Alfie’s medicine was what is called “full spectrum” cannabis oil, meaning it contains both CBD and THC and is therefore technically illegal.
THE crazy thing is that the amount of THC present in both those boys’ medicine was minuscule,” says Peter Reynolds.
“It’s an awful situation. The documented effects on its use for relieving pain is remarkable.
“We’re among the most backward countries in the Western world when it comes to accepting cannabis use. It’s shameful.”
Marie Emma Smith, 36, from Abingdon in Oxfordshire, uses legal CBD oil that she buys from the internet to treat her tubular sclerosis, a rare genetic condition that causes tumours to develop on her kidneys, liver and pancreas.
The oil not only helps relieve the pain but she believes it has also prevented the tumours becoming cancerous.
But for Marie, who lives with partner Ross and children Heston, seven, and Jessica, two, the real benefit of cannabis oil has been on her mental health.
“Before I discovered cannabis oil I was on epilepsy medication,” she says. “I ended up on three drugs including anti-psychotic medication and I was a mess.
“I could barely get out of bed. I was horrible and they were making me violent.
“Eventually I found some Facebook discussion groups and through that found a website for cannabis oil and it has immediately made everything so much calmer.
“The fits stopped the same day I started taking it and I’ve not had a grand mal seizure since. Everything’s so much clearer, I can think for myself again.
“It has revolutionised my life. It has made me more ‘me’ again. For the first time since before I started on the epilepsy medication I feel good in myself and unlike the other medicines there are no side effects whatsoever.”
For Steve Cope, 29, from Hereford, CBD oil has been a “miracle” in helping with the symptoms of his multiple sclerosis.
The former plumber has been unable to work for 18 months after the disease left him so weak he couldn’t even lift his toolbox but since using cannabis oil he has felt a marked improvement.
“It loosens my joints,” he says. “My leg muscles used to keep me awake all night and be agony in the morning – now I can actually sleep.
Until you’re ill with MS you can’t imagine the pain but the CBD is brilliant . It has really improved the quality of my life.”
He also believes that the idea of it being a non-medically proven drug is nonsense and that it should be available on the NHS.
“It’s a natural plant used for thousands of years to relieve pain,” he says. “The doctors were prescribing me opioids, which are made in a lab and have all kinds of side effects. I hated taking them and they didn’t work as well either.”
Campaigners not only want cannabidoil to be available on prescription but for THC oil, such as that used by Alfie and Billy, to be legalised.
And it is a movement that is gaining traction. Oxford University have recently announced a £10million programme to test all of the compounds in cannabis for medical benefits and next week Dr Frank D’Ambrosio, one of America’s leading medical cannabis practitioners, will make a presentation to Parliament at the launch of his new book Cannabis Is Medicine: The A-Z Of Medical Marijuana.
“There is no doubt in my mind that if the UK Government followed the lead of many of the states in America and other countries in legalising medical cannabis, patients would benefit enormously and a great deal of needless suffering would be ended,” he says.
“The UK’s NHS would also save huge amounts of money that it would normally spend on pharmaceuticals.”
For Londoner Robert Cohen, 46, who suffers from fibromyalgia, a condition that causes pain all over his body, high THC cannabis oil was a “lifesaver” – after travelling to the Netherlands to receive it from a doctor, he cut down his prescribed medication from “15 different drugs a day to just five or six”.
He also describes how “the pain not only lessened but my head cleared, my mood improved, I wasn’t so depressed. It helped in every way.”
HOWEVER in 2015 when returning from Amsterdam with a further supply, Robert was stopped at customs and his entire stock of cannabis oil was confiscated.
He says that after producing paperwork from Dutch doctors proving that the oil was for medical use border officials were sympathetic but the Home Office remained unyielding.
He has now been warned that if he attempts to return to Amsterdam for more of the drug he will be prosecuted. “I’m trapped,” he says. “I just have to make do with what I can get over here.
I said to my doctor, ‘What can I do?’ And he said, ‘We just have to keep going’ but it’s not looking good.
“This magical oil helped me in all areas of my life mentally as well as physically and now I’m being denied it and I don’t understand why. Cannabis has been used for thousands of years to help with pain. Why can’t it help with my pain?”
It’s a question the parents of little Alfie Dingley and of Billy Caldwell are asking too.