A 13-year-old boy has written a letter to the first minister pleading for help to fund a type of medical cannabis that has eased his brother’s epilepsy.
Dean Gray’s brother Murray had hundreds of seizures a day before taking the drug Bedrolite from the Netherlands.
His family hope the drug will be made available on the NHS as it costs them £1,300 per month to privately import.
Clinicians are reluctant to prescribe it because it has not been approved by the UK medicines regulator.
The letter, which the family from Edinburgh hope to deliver personally to Nicola Sturgeon, reads: “I hardly spent any time with my mum two 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.”
Dean goes on to say he now spends more time with his family thanks to the treatment, adding: “I don’t think it’s fair that my mum and dad have to pay this. Please can you do something to help us?”
Eight-year-old Murray suffers from a severe, complex epilepsy called Doose Syndrome.
His mother Karen said the condition meant he was frequently in hospital, had to wear a protective helmet and was unable to attend school full time.
“It was horrific,” she told BBC Radio Scotland’s Kaye Adams programme. “[Bedrolite] has been absolutely life changing for Murray.
“He’s not had a seizure in two years, he doesn’t need a wheelchair, he’s at school full time, he’s basically living a normal life – it’s like he’s got a hidden disability now.”
‘Lives at stake’
Since legalisation in 2018, only three medical cannabis products have been licensed by the UK-wide Medicines and Healthcare products Regulatory Agency (MHRA).
These are Sativex, which is used to treat severe spasticity in MS patients, Nabilone for chemotherapy-induced nausea and Epidyolex for rare forms of childhood epilepsy. Only the latter can be prescribed by the NHS in Scotland.
Karen said Murray initially responded to Epidyolex but it stopped working. She believes this is because it did not contain THC, the main psychoactive ingredient in cannabis.
Campaigners say only three people in the UK have been given NHS prescriptions to the type of drug Murray takes.
Other families with children in a similar condition to Murray also pay privately for other medicine at a cost of up to £2,000 a month.
It is estimated between 1-2% of children with epilepsy have the same condition as Murray – and around 60,000 children and young people are affected by epilepsy in the UK.
Karen said: “They consistently say that it’s a clinician’s decision to prescribe but unfortunately none of the clinicians will prescribe this medicine because there have been no trials done in the UK.
“We’ve not got the luxury of time for these trials to be done. We’ve already shown – and there are other children as well have shown – that these oils are actually working. Our children’s lives are at stake.”
Scotland’s first medical cannabis clinic – the Sapphire Medical Clinic in Stirling – began prescribing to patients suffering from chronic pain conditions last week.
The clinic’s Dr Mikael Sodergren said that published literature related to a cases in Canada showed that small doses of THC were “well tolerated” with “very limited side effects” – but larger trials were needed in order to prescribe it on the NHS.
He added that it would be “unethical” to put a child like Murray into a clinical trial as he would have to come off a medicine that is known to work and would stand a 50% chance of getting a placebo.
Meanwhile Karen said her family has been pushed “from pillar to post” by the Scottish and UK governments, neither of which she said would “take ownership” of Murray’s case.
She added that in order to pay for Bedrolite, she has had to rely on friends and family.
The Scottish government said it had “enormous sympathy” for Murray and his family and would respond to the letter privately.They said: “However, the decision on whether to prescribe any medicine for a patient, and which medicine to prescribe, is entirely one for clinicians to make – it would be inappropriate for Scottish ministers to make or influence prescribing decisions.
“Any NHS prescription that is made in line with the regulations on the use of medicinal cannabis prescribing, as set by the UK Government, will be fulfilled by the NHS.”