Edinburgh mum urges UK government to help fund expensive medicinal cannabis costs for children with epilepsy

Edinburgh mum takes her fight to Parliament

An Edinburgh mum, who has campaigned for years to have cannabis oils prescribed by the NHS, has met with politicians in London to raise funds for families who pay for expensive “life changing” medicine to treat epilepsy.

Karen Gray, whose 10-year-old son Murray has a rare form of epilepsy, has paid nearly £60,000 in the last three and a half years on privately bought medicinal cannabis oils after she saw the positive transformative effects it has had on her son’s condition.

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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 express concerns shared by over 100 families in the UK who are forced to pay thousands of pounds on a monthly basis to treat their children’s epilepsy.

The picture on the left shows Murray in 2019 before he had access to cannabis oils. Murray's mum, Karen said the transformation has been 'incredible' and he has now been seizure for more than two years.

The 47-year-old explained: “For years now, families have felt they have had to fundraise in their own way to pay these very high costs.” The mother of three, who has been purchasing 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 that government intervention is required to help affected families, were sent to the Prime Minister and the Chancellor of the Exchequer to ask for financial support.

The move to seek government help comes after Karen and three other families launched a new charity, Intractable, four months ago - the UK’s first charity that helps families pay extortionate medical costs to treat epilepsy.

The November 1 meeting came exactly four years after the UK government made it legal for cannabis oils containing THC to be legally prescribed by the NHS. But, despite the 2018 law change, only three known patients have been prescribed the medicine, with only one patient being prescribed cannabis oils since the law changed.

Karen Gray joined campaigners last week, asking the UK government to help families across the country pay their monthly medical bills. The Edinburgh mum said: "If you cannot afford this medicine your child is going to have loads of seizures and they're going to be back in hospital. It’s actually terrifying.”

Roughly 30-40 per cent of people with epilepsy in the UK do not respond to traditional medicines prescribed NHS medicines, but doctors remain reluctant to prescribe THC-based oils citing expensive costs and a lack of research and UK trials to make an informed decision - forcing families to buy the cannabis oils from private clinics.

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‘It has been lifechanging’

Karen, who is co-founder and secretary of Intractable said: “The fact that we have felt we have had no other choice than to go the private route is a damning indictment of the system. How can it be right that the law in this area was changed by the campaigns of families with children affected by severe epilepsy, but that nearly every family in a similar position is denied an NHS prescription?”

Karen’s son Murray, who has Doose Syndrome, used to experience respiratory problems and up to 100 seizures a day, but since taking specialist medication he now a more active life, attends school full time, and has been seizure free for over two years.

Karen joined other campaigners last week in London to speak with MPs about the financial pressure families are under to pay for expensive cannabis oils.
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She said: “It’s the THC that is helping these children. We haven’t got that stress anymore of watching Murray 24/7 because he’s having constant seizures. It has been life changing. Murray and other children haven’t suffered any side effects since beginning the cannabis oil and they have been taking this medication for longer than a NHS trial would last.”

She added: “It just comes down to the government actually doing something about it. If it was their child and they were in our situation – what would they do?”

Writing to the Prime Minister for financial help, Jo Griffiths, co-founder and vice chair of Intractable, said worried families “can no longer afford to pay privately” and “children’s lives are now being put at risk.”

Ronnie Cowan, Inverclyde SNP MP and Intractable trustee remarked that the government lacked “compassion” and said: “A promise was made and has been broken. The UK government has to engage with the parents and look to provide a solution now. Four years waiting is four years too long."

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Ronnie Cowan, SNP MP and Intractable trustee, joined families at Westminster last week to support their cause.

For more information and to support families across the UK, visit the Intractable website at www.intractable.org.uk. The charity’s quarterly lottery closes on December 23. Entering the draw costs £5 with the winner collecting £1,000.