The mum of a six-year-old Edinburgh boy believed to be the first child in Scotland prescribed cannabidiol for his epilepsy is now calling for her son to be given a stronger version of the drug.
Karen Gray, from East Craigs, wants the Scottish Government to allow Murray access to oil from the whole cannabis plant which contains the active ingredient tetrahydrocannabinol (THC) – the principal psychoactive part of the drug.
Karen was part of a campaign group which successfully petitioned Downing Street after gathering over 230,000 signatures.
The move triggered a parliamentary debate that led Home Secretary Sajid David to perform a dramatic change to UK law which allowed cannabis-based products made available for medicinal use only in Scotland, England and Wales.
It followed other high-profile cases like Murray’s including that of young epilepsy sufferers Alfie Dingley and Billy Caldwell, whose conditions appeared to be helped by cannabis oil.
Karen says the Epidiolex, a form of cannabidiol (CBD), has helped reduce the length of Murray’s myoclonic astatic epilepsy but is not strong enough to prevent his seizures.
She believes the amount of THC in the whole plant, which would be administered as oral drops, would not leave her son feeling high but this goes against The British Paediatric Neurology Association guidelines that say the chemical is damaging to the developing brain.
Karen said Murray, a P2 pupil at Clermiston Primary School, suffered a bout of tonsillitis on a visit to Center Parcs last week that brought back his seizures and landed him in the children’s ward of Carlisle Hospital.
She said: “Basically, all they can offer me is epidiolex because it’s a pharmaceutical grade product. They [NHS Scotland] won’t offer me whole plant cannabis oil even though it is pharmaceutically made in other countries because they say THC is damaging to the developing brain.
“I want Murray to receive whole plant oil but I want the neurologist to be on board with it.”
She added: “The epidiolex is not strong enough but without doubt it’s helped reduce the length of Murray’s seizures. They’ve gone from five minutes to around one minute.”
Christine Jardine Lib Dems MP for Edinburgh West said: “The whole point of the changes brought forward by the government last year was to help patients like Murray to access to medicinal cannabis.
“Overly rigid guidelines have since meant that doctors have been reluctant to write prescriptions, and this is something that governments both north and south of the border need to address quickly.
“Of course the only sensible way around this impasse and to ensure that patients can easily get hold of the treatment they need would be to make the grown-up decision to totally decriminalise and regulate the cannabis market altogether.”