An Edinburgh mum is part of a team that has launched a new charity, Intractable, that will help families and their children meet the costs of private medicinal cannabis costs.
Karen Gray, 47, from East Craigs, has fought her son Murray, 9, to have his medicinal cannabis prescription paid for by the NHS for a number of years. As a result, her family has had to stump up over £14,000 a year in order to meet the cost of his life saving medication.
Murray, who suffers from a rare epileptic condition called ‘Doose syndrome’ that he was diagnosed with in 2017, was suffering from up to 100 seizures a day and was even confined to hospital for the best part of a year when his seizures meant that he was in a constant state of status.
READ MORE: Edinburgh mum's joy after three-year campaign for cannabis for son brings 'great news'
To help her son, Karen smuggled Bedica and Bedrolite oils from the Netherlands which worked brilliantly at allowing Murray to lead as normal a life as possible. Although the family were eventually able to have the medicines prescribed in the UK, they could only access this at a cost of around £1,400 - crippling the family financially.
And without this medicine Murray’s life would be placed at risk. She says that the new charity, “Intractable”, will be the first of its kind and will be stepping up where the UK government has failed.
Karen, Joanne Griffiths, Graham Levy and Emily Carkeet, are behind the formation of Intractable and have worked tirelessly in the past alongside other families to secure two UK government backed clinical cannabis medicine trials.
On Intractable’s mission statement, Karen said: “Intractable is such an important charity, the first of its kind in the U.K. We are doing what the governments should be doing, giving children their lives back, by funding this life saving medication.
“It gives us great relief to know that, as a registered charity, we can help families in the same situation as ourselves. We now need to focus on raising a lot of money to make this a reality.”
The hope is that this landmark development will be able to help tackle the crisis surrounding access to medical cannabis for children and young adults with intractable epilepsy. Those behind the formation of the charity are affected parents who have themselves had to pay vast amounts for private prescriptions.
Intractable will be the first of its kind and will be a charity that will look to support qualifying families with the costs of medical cannabis prescribed by a GMC specialist.
Joanne Griffiths, the vice-chair said: “It has taken over a year of hard work to reach this point. 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. We are delighted that the Charity Commission has registered ‘Intractable’ and thank them for their support with the technicalities of this ground-breaking registration.
Graham Levy, Intractable chair added: “As long as the patient has a prescription written in accordance with the law and the relevant NICE and GMC guidance we will be able to help them, subject to having charity funds. As a recognised charity, donors, sponsors and funders can have confidence in our charitable aims.
“We hope that this will be a springboard for our fundraising activities so that we can help as many children as possible.”
Since the law was changed in 2018 to allow medical cannabis to be prescribed (privately), hundreds of people now have a better quality of life due to cannabis based medicines, that have saved lives.
The charity says that 180,000 people in the UK suffer from Intractable Epilepsy and that 1,000 people a year in the UK die from the condition. They add that reducing the number of seizures can be life saving and that a recent study showed that medicinal cannabis can reduce seizures by over 80 per cent when used to treat intractable epilepsy.
Chair Levy adds: “Intractable would like to thank Michele Price, Gunnercooke LLP, specialist Charity & Philanthropy solicitor and Honorary General Counsel to Intractable charity, for her continued advice and support throughout the process, along with Trustee Ronnie Cowan MP and Advocates Professor David Nutt and Dr Anne Katrin Schlag.”
You can find out more about Intractable by visiting their website here.
You can also support their fundraising efforts via Paypal by clicking here.
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