Edinburgh mother helps launch UK’s first charity to help children and young people suffering from rare forms of epilepsy

An Edinburgh mother, whose son suffers from a rare form of epilepsy, has joined forces with a group of parents to establish, Intractable, the UK’s first epilepsy charity to help affected families pay for expensive medical bills.

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Karen Gray, 47, from East Craigs, currently pays £1300 a month for cannabis-based medications, Bedrolite and Bedica, to treat her son’s rare condition ‘Doose Syndrome’.

Despite a change in legislation in November 2018 under former Health Secretary, Sajid Javid, that allows the use of medical cannabis, only three people in the UK have been prescribed the expensive oils under the NHS, forcing hundreds of families to buy it privately.

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.

Although research indicates that cannabis oils can reduce and eliminate deadly epileptic seizures, no trials in the UK have taken place, meaning prescriptions containing THC cannot be issued by the NHS unless they are agreed by a GMC doctor – something that many are reluctant to sign off on without a former medical trial.

Karen said that the new charity will be a lifeline for many families across the UK who are forced to worry about financial costs of cannabis oils.

She said: “I’ve been wanting to do this for years, ever since I knew that we weren’t going to get anywhere with the government or the NHS, I thought this is the next obvious way to get funding for all these families like ourselves.

“It’s ridiculous that we as parents have had to start a charity to pay for this medicine. It’s actually quite embarrassing really isn’t it? We’ve had to do something that they should have done.”

Karen said the new charity will "give parents hope" and help alleviate financial stress.

Karen added: “The government did change the law and they’ve repeatedly said ‘we’ve done our job’. But they’ve not because they haven’t done trials in this country and they won’t look at trials that have been done in other countries.”

Murray, who will be 10 in August, used to experience up to a hundred seizures a day, but since taking specialist medication in March 2019 has been seizure free.

Karen said: “We’ve just watched Murray improve right before our eyes. It’s really incredible.”

But Karen said that the financial cost for the treatment can be crippling for many families.

She said: “I’m constantly thinking ‘have I got enough money this month? It’s horrible.

“I know parents that are fundraising and it’s shocking because when you’ve got a child that’s having seizures and on top of that you’ve got to worry about having enough money to pay for the oil that keeps your child out of hospital – it’s an unexplainable amount of stress."

Speaking about the charity, she said: “It gives parents some kind of hope, that they can relax, live their lives and enjoy their kids without the constant daily worry of where they’re going to get the money from.”

Intractable Vice-Chair, Joanne Griffiths said: “Families like ours are struggling to pay up to £2,000 a month to access this medicine. Now, at last, we will be able to raise funds to help with those costs.”

Graham Levy, chair of the charity, added: “We hope that this will be a springboard for our fundraising activities so that we can help as many children as possible.”

You can donate to the charity via PayPal or find out more on the website, www.intractable.org.uk