The mother of an eight-year-old boy who is now seizure free after 18 months of medical cannabis has pleaded with the Government to help fund his prescription.
Karen Gray, from Edinburgh, is currently struggling to fund her son’s £1,400 a month medical cannabis prescription.
Last week she joined other parents across the country in the End Our Pain campaign, calling on the UK health authorities to step in and fund the medicine until it is available on the NHS.
Karen’s son Murray, now eight, began having seizures at the age of two and was diagnosed with a rare form of epilepsy known as Doose Syndrome in 2017.
Doctors tried several anti-epileptic drugs, ketamine and heavy duty steroids – all of which failed to manage his symptoms – before prescribing epidiolex in August 2018.
The drug worked initially, but a few months later Murray’s condition had begun to deteriorate again and he went back into epileptic status.
After failing to obtain a prescription for full-extract cannabis from Murray’s doctors, in March 2019, Karen travelled to Holland to find a doctor who would prescribe it and brought it back to the UK illegally.
“They couldn’t do anything for him, it was horrific,” said Karen (pictured above outside the Scottish Parliament with MSP Alex Cole-Hamilton).
“I begged them to get Bedrolite but they said they couldn’t.”
For three months Karen criminalised herself, travelling to Holland to bring back Bedrolite and the higher strain of THC, Bedrocan.
Eventually she found a private neurologist in London who would write Murray a prescription and after a BBC documentary brought media attention to her battle, the importer came forward to help.
“Murray has now been on it for 18 months and he is thriving, we think the THC is actually repairing him,” said Karen.
“The last seizure he had was in June 2019, he has been seizure free ever since.”
She continued: “It’s like he has got an invisible illness now. He doesn’t use a wheelchair, he is at school full time and he’s actually speaking, it’s just amazing.
“You wouldn’t think that he even had epilepsy and the only difference is the cannabis oil, so we know that it works.”
But Karen is terrified about what will happen when she can no longer afford to pay for Murray’s medicine.
“This is just a short-term solution, we can’t afford to fund it for the foreseeable future, but we can’t take him off it because he’ll go back into status and start having seizures again,” she said.
“It is terrifying and I feel angry that people are sitting back and letting us struggle.”
Following the news earlier this month that the NHS in Northern Ireland has agreed to fund a medical cannabis prescription, Karen has called on Scottish Health Secretary Jeane Murray to follow suit.
“Now that another devolved nation has done it, surely our Health Secretary can step up,” said Karen.
“We feel incredibly let down. I could cope with it if it was me, but this is my child.”
According to the Scottish Government, while the Health Secretary sympathises with the family’s situation, it has no powers to alter the scheduling of cannabis-based medicines.
A Scottish Government spokesperson said: “The Health Secretary completely sympathises with Ms Gray and continues to express her understanding of the very difficult situation all parents face in such circumstances.
“Scottish Ministers do not make or influence prescribing decisions. The decision on whether to prescribe any medicine for a patient, and which medicine to prescribe, is entirely one for clinicians on the specialist register to make.
“If a clinician were to prescribe an approved product using an NHS prescription, it would be dispensed free of charge in Scotland.”
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