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Brothers’ heartbreaking letters to leaders call for medical cannabis on NHS

Two schoolboys have made personal pleas to the UK Government to help their brothers’ access medical cannabis.

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Thomas Braun (right) and his brother Eddie who has West syndrome

Two schoolboys have made personal pleas to the UK Government to help their brothers’ access life-saving medical cannabis treatment. 

Nine-year-old Thomas Braun has handed a handwritten letter to the Prime Minister urging him to help get an NHS prescription for the medical cannabis that helps keep his brother safe.

Eddie Braun, six, has a severe form of complex epilepsy known as West syndrome and can suffer up to 100 different seizures a day. 

His symptoms have improved on a private prescription of medical cannabis, but his parents rely on donations from friends and family to fund the monthly sum. 

In his letter to Mr Johnson, Thomas explains that caring for a disabled or medically complex child can be hard enough for his mum and dad, without having the added worry and stress of making sure that there’s enough fundraising to meet the private medical cannabis bill every month. 

Thomas and Ilmarie at Downing Street with Hannah Deacon (right)

Thomas’s letter coincides with the three-year anniversary of the landmark decision in June 2018 when the then Home Secretary Sajid Javid granted Alfie Dingley the first individual permanent licence to use medical cannabis in the UK.

Despite the legalisation of medical cannabis a few months later in November 2018, only three NHS prescriptions are believed to have been issued.  

“Our hope is that the Prime Minister will choose to listen to a child who lives with the complexities of his brother’s situation daily,” Thomas and Eddie’s mum Ilmarie Braun told Cannabis Health 

“A child who shouldn’t worry about the things that he does worry about. A child whose life he could help change, along with his brother’s life and so many other children whose lives are so improved by their medical cannabis prescriptions.” 

She adds: “We’ve campaigned for so long, it’s actually both heartbreaking and incredibly special for us as his parents that Thomas felt it was his turn to try to do something to help us, Eddie, and all the other families.”

Thomas was outside Number 10 Downing Street on Wednesday 16 June at 11am with a copy of the letter for the Prime Minister.

Thomas and Ilmarie outside Number 10

Elsewhere in Edinburgh, 13-year-old Dean Gray was outside Bute House in with his own letter for Scottish First Minister Nicole Sturgeon. 

His brother Murray has now been seizure-free for two years on medical cannabis treatment, which can cost up to £2,000 a month. 

Recently more than 100 Parliamentarians wrote to Mr Johnson asking him to intervene to help families fund these prescriptions  – and a number of high-profile MPs, including Sir Mike Penning MP and Ronnie Cowan MP – have raised the issue at Prime Minister’s Questions, but the letter remains unanswered.

Peter Carroll, director of lobby group End Our Pain, described the current situation as “bizarre and cruel”.

“We know that he’s under pressure, but there are lives on the line here and we urge him to intervene.

“The Government legalised this medicine, but hardly anyone can get access to it.”

Dean Gray and mum Karen, outside Bute House, Edinburgh

A Department of Health and Social Care spokesperson said: “We recognise the huge challenges faced by children living with rare and hard to treat conditions.

“The government changed the law to allow specialist doctors to prescribe unlicensed cannabis-based products for medicinal use where it is clinically appropriate and in the best interests of patients.

“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their safety and clinical effectiveness.”

 

Read Thomas’ and Dean’s letters in full here:

Dear Prime Minister,

My name is Thomas, and my younger brother Eddie has really bad epilepsy. My Mum and Dad love us both, and they have to help Eddie a lot and sometimes I have to help too. They have the added worry of having to find lots of money to pay for his medicine.  Lots of our friends help.  But getting the medicine from the Government without having to do lots of things to find the money would help them a lot. Please help them and the other Mums and Dads. 

Dean Gray with his letter to Nicola Sturgeon

Dear First Minister,

My name is Dean Gray. I am 13 years old and I live in Edinburgh. I am writing to you about my little brother Murray. He is 8 years old. He used to have really bad seizures. I hardly spent any time with my mum 2 years ago as she was always in hospital with my little brother. 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 2 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 £1,300 every month for this medicine. I dont think its fair that my mum and dad have to pay this. Please can you do something to help us.

Thank you,

Dean Gray

 

Sarah Sinclair is an award-winning freelance journalist covering health, drug policy and social affairs. She is one of the few UK reporters specialising in medical cannabis policy and as the former editor of Cannabis Health has covered developments in the European cannabis sector extensively, with a focus on patients and consumers. She continues to report on cannabis-related health and policy for Forbes, Cannabis Health and Business of Cannabis and has written for The i Paper, Byline Times, The Lead, Positive News, Leafie & others. Sarah has an NCTJ accreditation and an MA in Journalism from the University of Sunderland and has completed additional specialist training through the Medical Cannabis Clinicians Society in the UK. She has spoken at leading industry events such as Cannabis Europa.

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