Karen Gray with her son Murray
There are topics I choose that I think this will be the last time I have to write about it. – just to keep writing about 500 words on the same topic over and over again. I can feel that this week. Three years ago I wrote an article celebrating the fact that the Home Office issued the first long-term license for personal use of medical cannabis. And yet, 36 months later, and the vast majority of patients who could benefit from cannabis therapies simply do not have access to them through the NHS.
It means a mother in my constituency would have to privately fund medical cannabis to the point of poverty just to keep her little boy alive.
I have known Murray Gray and his family for 4 years. Murray is eight years old and has a profound and complex form of epilepsy that cannot be addressed with normal medication. He had literally hundreds of life-threatening seizures every day and his mother Karen wouldn’t just sit back and watch her son die. She conducted extensive research and found that there was abundant clinical evidence internationally that the use of cannabis-derived therapies could significantly improve her son’s condition.
In early 2019, Murray’s epilepsy took a dramatic turn. He went into ‘status’, a state where the seizures just wouldn’t end and he wouldn’t come around. It is very likely that Murray would have died had Karen not moved heaven and earth to get a private prescription for Bedrolite, a cannabis oil she sources from the Netherlands. She administered it to Murray herself and in a short time Murray was resuscitated from status and his seizures completely disappeared. He hasn’t had one for almost 2 years.
Karen knows that if Murray stopped giving him his daily dose of cannabis oils, Murray would return to a state of almost constant seizures. So she scrapes up £ 1,3000 every month for the cost of the recipe and it ruins her. The problem is that while Murray’s GP is ready to prescribe the oils, he is not on the list of licensed doctors who can, and none of those who are into it will. It’s not because they think it’s bad for him, they just aren’t sure the drug is without UK study data and with a residual fear of cannabis therapies and drug abuse law. It’s not just Murray who is struggling to get the help he needs. Only three NHS prescriptions have been issued for these therapies across the UK.
On Wednesday, Murray’s older brother Dean will deliver a letter to Bute House, the official residence of the First Minister, asking Nicola Sturgeon to break the impasse. His words are convincing.
He doesn’t think it’s fair that his mother has to spend everything the family has on drugs that the government has agreed to be safe and legal in the UK, and neither is I.
The Scottish government cannot force clinicians to script scripts, but it can and should give Karen financial support until clinical trials are conducted to give clinicians the confidence they need.