A TEENAGE schoolboy will today make a personal plea directly to Nicola Sturgeon, asking her for support in obtaining an NHS prescription for medical cannabis to help his younger brother, who suffers from severe and complex epilepsy.
Dean Gray, 13, will stand outside Bute House in Edinburgh at 11am with a copy of the letter he has written and delivered to the First Minister.
His brother Murray, eight, used to have hundreds of seizures a day – but he has not had a single one for more than two years since starting medical cannabis.
A campaign by the family of Alfie Dingley, six,who has severe epilepsy, in 2018 helped to secure access to medical cannabis under prescription in November of that year.
READ MORE: Hundreds seek help from Stirling medical cannabis clinic in first week
However, despite the legal change, there has been only three NHS prescriptions for medical cannabis issued across the UK. Other families with similarly affected children have had to pay privately for the medicine at a cost of up to £2000 a month.
In his letter to the First Minister, Dean, from Edinburgh, explains the difficulties of the situation his family is facing, and he argues that they shouldn’t have the added worry of finding extra money each month – some £1300 – to meet the private medical cannabis bill.
He hopes that his letter will encourage the First Minister into action and help the other affected families in Scotland, many of whom campaign under the End Our Pain banner.
“I am writing to you about my little brother Murray. He is eight years old. He used to have really bad seizures. I hardly spent any time with my mum two years ago as she was always in hospital with my little brother,” Dean told the First Minister in his letter.
“This took a toll on me personally as I didn’t fully understand what was going on and felt anxious for my brother.
“He has not had a seizure now in two years because my mum got him cannabis oils.
“This means I get to spend more time with my mum and my brother, which I love to do.
“She is having to pay £1300 every month for this medicine. I don’t think its fair that my mum and dad have to pay this. Please can you do something to help us.”
READ MORE: Cannabis could be a lucrative, sustainable crop for Scotland’s farmers
The plea by Dean – whose grandparents Irene Gray and Rod McNeill from Bo’ness are regular readers of The National – coincides with the three-year anniversary of the landmark decision in June 2018 when then home secretary Sajid Javid granted Alfie the first individual long-term licence to use medical cannabis in the UK.
To mark the occasion, Alfie’s mother Hannah has also written to the Prime Minister urging him to intervene. Alfie is one of the three NHS prescriptions.
In her letter, she outlines the transformational effect that having an NHS prescription has had on her son, and condemns the persistent failings of the governments and NHS structures of the devolved nations that see nearly every other affected family having to raise thousands of pounds a month.
In her letter she writes: “It soon became clear that the legal change was, however well intentioned, a complete failure, with families still denied access to an NHS prescription at every turn”.
Why are you making commenting on The National only available to subscribers?
We know there are thousands of National readers who want to debate, argue and go back and forth in the comments section of our stories. We’ve got the most informed readers in Scotland, asking each other the big questions about the future of our country.
Unfortunately, though, these important debates are being spoiled by a vocal minority of trolls who aren’t really interested in the issues, try to derail the conversations, register under fake names, and post vile abuse.
So that’s why we’ve decided to make the ability to comment only available to our paying subscribers. That way, all the trolls who post abuse on our website will have to pay if they want to join the debate – and risk a permanent ban from the account that they subscribe with.
The conversation will go back to what it should be about – people who care passionately about the issues, but disagree constructively on what we should do about them. Let’s get that debate started!
Callum Baird, Editor of The National
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here