Parents to launch Intractable Epilepsy charity in parliament

Parents are travelling to Westminster today to launch the UK’s first charity dedicated to funding private prescriptions for medical cannabis.

The parents behind the UK’s first and only charity dedicated to raising funds to help pay for medical cannabis for their children, will hold a launch event in parliament on Tuesday 1 November. 

The date marks exactly four years since medical cannabis was legalised in the UK on 1 November 2018, following the high-profile campaigns of families with children affected by severe epilepsy.

Despite the law change, only three children are thought to have NHS prescriptions for whole-plant cannabis, leaving other families paying up to £2,000 a month to secure the medicine privately. 

Many of the parents involved report that cannabis has had a hugely positive impact on the quality of life of their children, some of whom were having up to 200 seizures a day with all other pharmaceutical and medical interventions having failed. 

Thanks to medical cannabis many of these children are now either seizure free or benefiting from far fewer and less intense seizures.

A number of parents who have campaigned for wider NHS access over the last four years recently set up the charity, Intractable Epilepsy, which aims to raise funds to help families pay for private prescriptions. 

Ben Griffiths (left) and Murray Gray recently completed a fundraising walk for Intractable

The parliamentary launch is expected to be attended by a number of cross-party MPs and members of the House of Lords. 

Inverclyde SNP MP Ronnie Cowan, is a trustee for the charity and has been a prominent advocate for medical cannabis access.

He called on the government to engage with parents and provide an urgent solution. 

“A promise was made and has been broken. Day in, day out these young children that could benefit from medical cannabis are being denied access by a government lacking the compassion to understand that they have the power to improve these young lives and those of their parents and guardians. That’s what governing is about,” Mr Cowan commented.

“To further compound matters, recent reports that cannabis could be moved to Class A will only increase the difficulties that are being encountered. The UK government has to engage with the parents and look to provide a solution now. Four years waiting is four years too long.”

Jo Griffiths, vice chair and co-founder of Intractable, said: “The law change of 2018 should have enabled more parents to access this medicine on the NHS. Sadly, and frustratingly, that has not proved to be the case. Instead, as well as having to care for desperately ill children, we are having to fund raise to pay for the medicine privately. 

“By forming the charity we can work better together and get the benefit of some of the fundraising and taxation benefits that brings. We hope that lots of MPs and Peers will join us at the event to hear more of our aims as well as learn more about the situation around medical cannabis and the fact that access is still shockingly limited.”

Jo’s son Ben Griffiths who has cerebral palsy, and Murray Gray, who has a rare from of epilepsy known as Doose syndrome, recently raised over £1,700 after walking the distance of Morecambe Bay, in Lancashire.

Neither would have been able to do so were it not for their medical cannabis prescriptions.

“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,” said Murray’s mum Karen Gray, secretary and co-founder of Intractable.

“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? For years now, families have felt that they have had to fund raises in their own way to pay these very high costs. Now with the charity, we can at least all try and work together.”

Graham Levy, chair and co-founder, added: “We’ll be appealing to MPs and Peers to both support us directly and to spread word of our work. We have been touched by what members of our families and members of the public are doing to help us raise funds

You can donate to Intractable Epilepsy here 

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