An Edinburgh mum, who has campaigned for years for cannabis oils to be prescribed by the NHS, has met politicians in London to raise money for families paying for expensive ‘life-changing’ drugs for treat epilepsy.
Karen Gray, whose 10-year-old son Murray suffers from a rare form of epilepsy, has paid nearly £60,000 over the past three-and-a-half years for privately purchased medicinal cannabis oils after seeing the positive transformative effects it had on her son. condition.
Karen, from East Craigs, joined parents whose children also suffer from rare epileptic conditions, for a meeting at Portcullis House in Westminster last week, to speak with MPs and voice the concerns shared by more than 100 families in the Kingdom UK who are forced to pay thousands of pounds on a monthly basis to treat their children’s epilepsy.
The 47-year-old explained: “For years families have felt they have to fundraise in their own way to pay for these very high costs.” The mother-of-three, who has been buying cannabis oils since March 2019, compared the astronomical monthly payments to having “another mortgage”.
This week letters containing the signatures of 16 MPs who believe government intervention is needed to help affected families were sent to the Prime Minister and the Chancellor of the Exchequer asking for financial support.
The decision to seek government help comes after Karen and three other families launched a new charity, Intractable, four months ago – the UK’s first charity helping families with sky-high medical bills to treat epilepsy.
The November 1 meeting took place exactly four years after the UK government made it legal for the NHS to prescribe THC-containing cannabis oils. But, despite the 2018 law change, only three known patients have been prescribed the drug, and only one patient has been prescribed cannabis oils since the law changed.
Around 30-40% of people with epilepsy in the UK do not respond to traditional NHS prescribed medicines, but doctors remain reluctant to prescribe THC oils, citing high costs and a lack of research and trials in the UK to make an informed decision – forcing families to buy cannabis oils from private clinics.
“It changed your life”
Karen, who is co-founder and secretary of Intractable, said: “The fact that we felt we had no choice but to go the private route is a damning accusation of the system. How can it be fair that the law in this area has been changed by campaigns from families with children with severe epilepsy, but almost all families in a similar situation are denied an NHS prescription? »
Karen’s son Murray, who has Doose Syndrome, had breathing problems and up to 100 seizures a day, but since taking specialist medication he now has a more active life, goes to school full time and has been seizure free for over two years.
She said, “It’s the THC that helps these kids. We no longer have the stress of watching Murray 24/7 because he has constant tantrums. It was life changing. Murray and other children have had no side effects since starting cannabis oil and they have been taking the drug for longer than an NHS trial would last.
She added: “It’s just up to the government to do something about it. If it was their child and they were in our situation, what would they do? »
Writing to the Prime Minister asking for financial help, Jo Griffiths, co-founder and vice-chairman of Intractable, said worried families “can no longer afford to pay privately” and that “children’s lives are now put to danger”.
Ronnie Cowan, SNP MP for Inverclyde and trustee of Intractable, remarked that the government lacked ‘compassion’ and said: ‘A promise was made and broken. The UK Government must engage with parents and seek to provide a solution now. Four years of waiting is four years too long.”