A life-saving drug, a wee boy and a scandalous Catch-22 – Alex Cole-Hamilton

There’s a little boy in West Edinburgh who might be dead right now if it wasn’t for cannabis. Murray Gray is seven years old. He has a rare and terrible form of epilepsy that can only be controlled by an oil extracted from the cannabis plant.

While medical cannabis is now legal in this country, his specialists won’t write Murray an NHS prescription for it because NHS guidelines tell them to wait for UK trials. So his mum has had to source and import the oil privately and that is costing her a fortune.

Between January and March 2019, Murray was in a constant state of seizure to the point where he had no communication, motor function or awareness of his surroundings. His epilepsy was like a constant, rolling thunderstorm doing untold damage to his brain and body – beyond the reach of any standard therapy.

He was in hospital all of the time and his mother Karen had real cause to believe that he would die. Indeed, there is every suggestion that this would have happened had she not taken matters into her own hands.

A year previously, Murray had responded to the cannabis derivative Epidiolex (cannabis oil, but with the psychoactive substance THC removed) – however the preparation had proved too weak to have a lasting impact.

Miraculous

Armed with extensive research and the knowledge that a whole cannabis plant oil (including THC) was working for similar patients on the Continent, Karen was forced to travel to the Netherlands and bring back the pharmaceutical-grade oil to his hospital bedside. There she secretly started to administer the oil to Murray, closely following the Dutch medical guidance for its use.

The affect was nearly instantaneous and it was miraculous. Murray stopped seizing, he regained motor control and started speaking again. He was even able to go back to school. He has to take the oil every day but since that awful period at the start of last year, he hasn’t had a single seizure. Happy ending, right? Wrong. Murray’s family now have an importer, a private prescription and private consultant supervision for the administration of the cannabis oil, but because it’s not through the NHS they have to pay for every single bottle. All told that costs her family more than £1000 a month.

Murray’s recovery can only be attributed to the oil, that much is true. So persuaded was Murray’s local GP by this that he was willing to write Murray an NHS prescription for it. In addition, acting on her behalf, I obtained a letter of comfort from the Health Secretary confirming to Karen that the Scottish Government would pay for every drop of oil if it came through that NHS prescription. Karen made it as far as the chemist before her hopes were dashed.

Clinical trial

There she learned from the pharmacist that only consultant neurologists registered on a controlled list could write such a script. Therein lies the problem. No NHS neurologist is willing to write a prescription for this kind of oil, because NHS guidelines do not support its use before clinical data is obtained from UK trials.

So we’re stuck in an awful Catch-22. We have an NHS clinician (Murray’s GP) who is willing to prescribe the oil but is not permitted to do so because he isn’t on a specialist register. Then we have Murray’s neurologists adhering to NHS guidelines which say they have to wait for data (from trials that are yet to begin) before prescribing. We are looking at both a shared care arrangement for Murray or even enrolling him in a UK clinical trial for the oil but so far a solution still hasn’t emerged.

Murray is alive and he’s being kept alive by a medicine that UK ­politicians have legalised but UK clinicians haven’t verified. While we wait for something to break that logjam, the months tick by and Karen’s money drains away.

Alex Cole-Hamilton is the Lib Dem MSP for Edinburgh Western.