Daily Mirror (Northern Ireland)
BILLY MAKES HISTORY
Ulster teen first to receive NHS cannabis prescription
A NORTHERN Ireland teenager has made UK history after receiving the first Nhs-funded prescription for medicinal cannabis.
Billy Caldwell, 15, who suffered up to 100 seizures a day, prompted a change in the law in 2018 after a life-threatening crisis.
His mum Charlotte said: “After years of trying to get Billy help, the war is won. The relief is indescribable.”
A COURIER arrived at a house in Co Tyrone yesterday and made UK history with the delivery of a small, carefully wrapped package.
He was greeted at the gate of a country cottage by a teenage boy and his mother.
And while he may not have realised it, he had helped save a life, delivering the first NHSfunded medical cannabis under the 2018 law to anyone in the British Isles.
It was a moment Charlotte Caldwell feared might never happen, a moment that took four years in the planning and the last torturous two years to get across the line.
But yesterday her son Billy, 15, was able to take the first dose of that medication paid for by public taxes via the NHS, and she hopes he won’t be the last.
Charlotte said: “The final battle is over and the war is won. Billy now has the first Nhs-funded pre scription f or medicinal cannabis in the UK and a care package in place.
“Sunday, November 1, marks the second anniversary of the change in the law which was prompted by Billy’s near death experience when the British Government confiscated his medication at Heathrow Airport in 2018.
“It has been an exhausting journey with many false dawns, hopes dashed and a lot of tears and frustrations.
“There were times I feared we’d just keel over and die from upset and worry.
“But we took one day at a time, and Dr John Burton, who never left our side i n the l ast 14 years, often reminded me that once I got past midnight I could do another day and keep going.
“I had a lot of help along the way including support from every political party in Northern Ireland.
“Sadly though I had a lot of people, faceless people, who made this such a struggle including trolls who made my life hell.
“From inside the government I’ve been reported to Social Services, threatened with legal action, warned
I ’d never win this battle, pushed to my wits’ end, frustrated, undermined, gossiped about and misled by a number of people, some of them charged with great responsibilities in this country.
“I lived with the fear that they’d try to take Billy from me, and I knew if they did he’d either die from lack of medicinal cannabis or die from a broken heart.
The situation got so bad for Charlotte as she was repeatedly reported to Social Services over the care of her
son, that she decamped their home.
Even as she attended the last meeting in September about her treatment of Billy, she was so fearful a social worker would be present and try to remove him, that she had packed her car with all they needed in case she needed to escape across the border into the Republic.
She said: “I was terrified. I knew I’d done nothing wrong but I was being challenged and I was afraid.“
On June 11, 2018, Billy and his mum travelled back from Canada with privately prescribed medicinal cannabis to treat his 100 seizures a day, but border officials seized the oil at Heathrow Airport and it was locked in a safe in the Home Office and within five days Billy was hit by potentially deadly back-to-back seizures.
Charlotte said: “There’ve been many times that I’ve feared for Billy’s life and this was the worst.
“I sent a message to Nick Hurd, the then Home Office minister who had the oil taken from us and told him he’d likely signed my son’s death warrant. Then just after midnight on June 16, the Government used an exceptional power to urgently issue the licence to allow him to be treated with medicinal cannabis oil.
“And that’s all we ever wanted. On November 1, 2018, the law changed to al low for medical cannabi s prescriptions but it was written in
such a way doctors feared putting their name to them.”
The Co Tyrone mum explained that it took another two years with a team of supporters led by Steve Moore, the director of The Centre of Medical Cannabis UK, to find a way to get Billy’s prescription and NHS funding.
She said: “Today Billy is very well, growing, maturing, playing and happy and there’s no way he’d be any of these things if he didn’t have this medication.
“So Northern Ireland can proudly say we’ve the first Nhs-funded medical cannabis prescription written under the new law and yet there was no celebration, no Government pat on the back, no announcement from the Department of Health or the Belfast Trust. It is a mammoth move given the law change, something we should be very proud of and yet we have silence.
“There’s a lot said in that silence and while I hope for other patients, I feel in my heart they’ll struggle as I did to get anywhere for their child.
“I’m also thinking of the large groups of patients I support, patients with MS, chronic pain, epilepsy, PTSD, fibromyalgia, and the thousands of other patients across the UK and Ireland who are still being denied access to medicinal cannabis to see if it could work for them.
“I’m committed to doing all I can to progress access and clinical research to enable more people to benefit from the medication that has saved Billy’s life.”
After four years of emotional torture and stress, Billy and his mum are back in their little Castlederg cottage enjoying the calm that medical cannabis brings to their family life.
Charlotte said: “I have so many people to thank and they know who they are but my final thanks goes to Health Minister Robin Swann.
“Despite all the noise around medicinal cannabis and despite the horrendous pressure he’s been under during coronavirus, our Health Minister found the facts that he needed and used his will to do the right thing.
“He saved a life. He saved my son.”