Mum set to go on hunger strike for cannabis treatment

Published: December 03 2019
Last updated: September 29 2022

The mum of a boy with severe epilepsy is set to go on hunger strike until the government funds cannabis treatment.

Karen Gray, from Edinburgh, is joining at least 17 other mums in the hunger strike outside Downing Street. They are working with a group called End our Pain, in order to put pressure on Boris Johnson to fund the drug on the NHS.

Karen’s seven-year-old son Murray has a rare form of drug resistant epilepsy known as Doose syndrome. Murray’s seizures started when he was two years old. He was diagnosed with the condition in 2017 when he was having up to 12 seizures daily.

He has already tried several epilepsy drugs including sodium valproate, zonisamide and clobazam, but with no effect. Murray was then prescribed CBD drug Epidyolex and had some success. But three months later, the seizures returned.

Karen realised that Murray needed the CBD to contain the previously banned tetrahydrocannabinol (THC) ingredient for it to be effective for her son. Tetrahydrocannabinol is a cannabinoid known to be a psychoactive compound, the part of the plant that causes the ‘high’.

At the moment he takes a mixture of Bedica which is 14% THC and 1% CBD and Bedrolite which is 9% CBD and 1% THC.

Karen at first had to transport the drugs herself from Holland, but now they come from an importer who brings them to Scotland. The drugs cost up to £1,500 a month, and the family relies on funding from friends and strangers to help supply the drugs.

In September families wrote to Prime Minister Boris Johnson to persuade him to approve the drug on the NHS, but have not received a reply. That same month the medical agency NICE said they could not make a recommendation, saying there was a lack of evidence in clinical trials.