The older brother of young epileptic boy, Murray Gray, made headlines last month after writing a letter to Scotland’s First Minister pleading for help to improve patient access to medical cannabis. Thirteen-year old Dean Gray has now received a disappointing response from Nicola Sturgeon on the issue.
Dean’s eight-year-old brother, Murray, lives with a rare form of epilepsy called Doose Syndrome, which used to cause hundreds of seizures every day. In addition, Murray’s mother has said that his anti-epilepsy medication prescribed through the NHS had caused serious side effects. However, since beginning to use medical cannabis, bought through a private prescription from the Netherlands, he hasn’t had a seizure in two years, with no side effects.
The medicine, called Bedrolite, currently comes with significant costs, with the Gray family reportedly paying £1,300 per month for the private prescription.
According to the BBC, Murray and Dean’s mother, Karen Gray, has been left devastated at the response from the First Minister which states that the medication has to be proven be safe before it can be made available on the NHS.
Ms Gray told BBC News: “We are delighted and grateful that the first minister took the time to write to us – it did seem like a very personal letter.
“But it’s infuriating because she is saying about safety and the NHS won’t prescribe the medicine, but the NHS is prescribing the very same cannabis oil to two other children in the UK.”
She continued: “Murray was basically dying in front of us in hospital and the NHS couldn’t do anything.
“The only way to take the cannabis oil legally was to get a private neurologist. She writes the prescription because she knows it’s safe for Murray. He hasn’t had a seizure in two years and no side-effects.”
Since the legalisation of medical cannabis in November 2018, only three cannabis-based products have been licensed by the UK Medicines and Healthcare products Regulatory Agency (MHRA). Epidyolex, a CBD-based medication which has been found to be useful in some forms of epilepsy, is the only medical cannabis that can currently be prescribed through the NHS in Scotland.
While Ms Gray says that Epidyolex was initially effective at reducing Murray’s seizures, it eventually stopped working. This is likely because the product does not contain THC, the most common cannabinoid produced by the cannabis plant.
Despite hopes that Ms Sturgeon would help the family, and others like them, to access the medicine more easily, they were left disappointed with the contents of Ms Sturgeon’s response.
In her letter, Ms Sturgeon wrote:
“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 (which means they will be dispensed for free), we need stronger evidence on their safety and use than we currently have.
“Just now, specialist doctors in the NHS who treat children with epilepsy and similar medical conditions aren’t confident about prescribing cannabis oils, including Bedrolite, until there is better evidence available following a clinical trial.”