The teenage brother of a child suffering from severe epilepsy has written a desperate plea to the First Minister begging her for an NHS prescription of cannabis.
On Wednesday, June 16 at 11.00 am, Dean Gray will stand outside the First Minister's Edinburgh residence with a copy of the letter in the hopes of ‘keeping his brother Murray safe.’
Little Murray, 8, used to suffer hundreds of fits every day leaving him in a 'vegetative state', but two years since starting medical cannabis and he is seizure-free.
But the type of medical cannabis Murray uses, Bedrolite and Bedica, is not available on the NHS and costs a pricey £1,300 every month to fund.
In his letter to the First Minister, 13-year-old Dean explains the difficulties his family faces trying to find extra money each month to meet the private medical cannabis bill.
Dean hopes that his letter inspires the First Minister and helps the other affected families in Scotland, many of whom campaign under the End Our Pain banner.
Murray and Dean's mum Karen Gray told Edinburgh Live: “I felt quite emotional when I read Dean’s letter.
“He’s a very clever lad and understands a lot more than I thought.
“I am so proud of him for trying to help us.”
Dean’s letter coincides with the 3-year anniversary of the then Home Secretary Sajid Javid’s decision in June 2018 to grant epileptic child Alfie Dingley the first individual long-term licence to use medical cannabis in the UK.
Medical cannabis was also legalised in the UK in 2018, with expert doctors given the option to legally issue prescriptions for cannabis-based medicines when they agree that their patients could benefit from this treatment.
But parents argue that the law change doesn’t go far enough as they still ‘battle’ to have medical cannabis prescribed by the NHS
To mark the occasion, Alfie’s mother Hannah has also written to UK Prime Minister urging him to intervene.
In her letter, she outlines the transformational effect that having an NHS prescription has had on her son but condemned the cost imposed on families left to foot the bill for treatment.
She wrote: "It soon became clear that the legal change was, however well-intentioned, a complete failure, with families still denied access to an NHS prescription at every turn.
"I implore you to listen, not just as our Prime Minister but as a fellow parent. You and you alone have the power to make this right."
Parent Joanne Griffiths, whose son Ben has severe epilepsy can't get a medical prescription of cannabis though the NHS commented: “Parliament obviously wanted patients such as our children severely affected by epilepsy to have access to medical cannabis.
“Why else would they have changed the law? But we are now in a situation in which the law has been changed, but we can’t access it on the NHS. This is despite the NHS carrying out its own detailed review into the blockages in August 2019.
“We have marched, petitioned, lobbied Parliament, and met Ministers on a number of occasions.
“But all we get is warm words and hand wringing but no actual progress. Every part of the system blames every other part and we get passed from pillar to post.’
Peter Carroll, Director of End Our Pain, said, “This situation is bizarre and cruel. The UK Government legalised a medicine, but hardly anyone can use it.
“Surely it can’t be beyond the wit and capability of one of the largest health services in the world to sort this out.
“The families denied NHS prescriptions are being forced to fundraise to be able to pay privately.
"This added worry and pressure has pushed these families to breaking point emotionally and financially.
"We fully support Dean’s direct appeal to the First Minister. We urge her to intervene.
"And we support the family of Eddie Braun, whose brother Thomas is handing in a similar letter to the Prime Minister in Downing Street.
"Over 100 Parliamentarians wrote to him asking him to do so some weeks ago and a number of high-profile MPs have asked him to do so at PMQs including Sir Mike Penning MP and Ronnie Cowan MP.
"Currently, the letter is unanswered, and the PM has not personally engaged.
"We know that both the First Minister and the Prime Minister have a lot on their plate. However, there are lives on the line here and we urge them to intervene in their respective jurisdictions."
