A family’s hopes of an end to crippling medical bills have been dashed by First Minister Nicola Sturgeon, who said there is not enough evidence that their little boy’s treatment is safe.
Last month the Daily Record told how Murray Gray’s teenage brother Dean, 14, had written to Sturgeon begging her to help him.
Dean watched in horror as Murray had multiple seizures before ending up in a vegetative state.
Murray, eight, had been diagnosed with Doose syndrome, a severe form of epilepsy, in December 2017 and could suffer hundreds of seizures a day.
But after his condition worsened, mum Karen went to the Netherlands to get him cannabis-based drugs with the previously banned tetrahydrocannabinol (THC).
Within weeks of starting on the medical cannabis, his seizures lessened dramatically – and he’s not had one for two years. The drugs, now legally imported, cost £1300 a month, which puts a huge strain on the Edinburgh family.
Dean, accompanied by Lib Dem health spokesman Alex Cole-Hamilton, handed his letter into Bute House for Sturgeon. In it he wrote: “I am writing to you about my little brother Murray.
“He is eight years old. He used to have really bad seizures. He has not had a seizure now in two years because my mum got him cannabis oils.”
But he added his parents have to pay for his medicine. He stated: “I don’t think it’s fair that my mum and dad have to pay this. Please can you do something to help us.”
But yesterday the family received the crushing news from Sturgeon.
In her letter to Dean, she praised his “very thoughtful letter”.
However, she continued: “For doctors to make decisions about which medicines to prescribe for their patients, they need to know that the medicines they are prescribing are safe to use.
“In order to prescribe medicines like those Murray currently takes on the NHS in Scotland we need stronger evidence on their safety and use than we currently have.”
Last night, Karen said: “It did read as if the First Minister had a personal hand in drafting the reply but I am devastated that she appears to have either not understood the letter from Dean or has understood the issues but decided not to act.
“She raises the issue of safety but three children in the UK already have an NHS prescription so if the prescription is safe in those circumstances surely it would be safe for Murray.”
Cole-Hamilton called the letter “deeply frustrating” and said the family were on the “verge of destitution”. He added: “If Murray stopped taking Bedrolite it could very easily be a death sentence.”