- Christopher Smith, Editor-in-Chief
Scottish Mom Fights NHS for Lifesaving Cannabis Medicine
Another story about a brave Mom fighting for her child has found me, this one from a writer named Nicola Findlay for the UK Daily Record: East Kilbride Mums Marks Three Years of Battling to Secure Lifesaving Cannabis Oil on NHS
The Scoop
East Kilbride is a suburb of Glasgow in Scotland. There’s a 9-year-old boy there named Cole who was diagnosed with drug-resistant epilepsy when he was 3 months old "which saw him unable to walk, talk and ultimately admitted to hospital in an unresponsive state." In his young life he’s has brain surgery and been on more than 20 different medications.
The only thing that works is a whole-plant cannabis extract called Bedrolite, which is a 9% CBD/1% THC made in the Netherlands. In taking Bedrolite, little Cole has been seizure-free for 18 months.
Problem is, Bedrolite costs about 1,200 pounds a month, which equates to about $1,640 per month or about $20,000 per year.
His mother Lisa Quarrell, a former police officer, will do anything for her boy, of course, including smuggling Bedrolite – which she has done - and now, taking on the government.
She said in a recent interview, “Three years I have been campaigning to access medicinal cannabis through the NHS, yet three years on I am still having to pay privately," Lisa told Lanarkshire Live. “I have had no support from the Scottish Government or the NHS.”
The government is currently paying for a pharma drug for the boy, but his mom says his body is rejecting it.
The Scottish Government seems not to care. Ms. Quarrell says, ""Five years ago we were told there would be clinical trials and tests into cannabis-based medicines, as far as I am aware there has been nothing. Why should my son be forgotten about because they can't be bothered doing the trials? ... Ten weeks ago I had a video call with health secretary Houmza Yousaf, following knockback after knockback from his predecessor. Still I have heard nothing... and more recently, "I have the private consultant for Cole's Bedrolite in London and I have his NHS team – they don't speak. The NHS won't work together with the private consultant and I am caught in the middle trying to work out what's best for Cole."
THE DEEP DIVE
This article pulled my heartstrings because these Momma Bear stories always do. But for the first time I felt like I could do a little something about it. Not much, but a little.
Back in June I got to interview an Irish woman named Charlotte Caldwell, whom I’d been following on Facebook for many years. Her son Billy is also epileptic, has been on death’s door literally dozens of times since he was a baby, and she’d had to leave the country three times for months or years at a time, to save his life with cannabis medicine.
“During her battle against the UK government, Charlotte received messages from countless parents who also needed help. So last month, Charlotte launched a non-profit called the I Am Billy Foundation to give other vulnerable and seriously ill UK patients access to cannabis medicines through
publicly funded prescriptions
a non-profit cannabis clinic, and
clinical trials of patients who are already taking cannabis medicine.”
THE LOOP BACK
So I wrote to the article’s author last night, Nicola Findlay. I explained who I was and how I knew about all this stuff, with links to articles about Charlotte and Billy, another Irish mum called Vera Twomey who fought the NIH for 7 years on behalf of her daughter Ava.
I shared the information about the I Am Billy Foundation, and asked her to pass it along to Cole’s mom, Lisa. It wasn’t much, but it felt like the very least I could do!
And just one last note: when a Government tells a Mom their hands are tied because cannabis is illegal... lots of things are illegal… until they're not.
Governments must recognize that for some patients, cannabis medicine is the only thing keeping them alive. They must find the humanity to realize they can’t change these children, they must change the laws.