9-year-old pleas to government for NHS Funding of his brother's medical cannabis
A 9-year-old boy has written a personal plea to the Prime Minister to ask for NHS funding for medicinal cannabis to help treat his brother who has epilepsy.
It comes after a family from Kenilworth says they've benefited hugely from receiving cannabis medication on the NHS.
Alfie Dingley was granted an NHS prescription of medicinal cannabis to treat his epilepsy three years ago.
From experiencing 150 seizures a week, he has now managed to go an entire year without having a seizure.
Despite a ruling in 2018 which should allow all children with a similar condition access to the medication, only three children have prescriptions.
Alfie's mother, Hannah Deacon, is now supporting other families who haven't been able to access the treatment on the NHS.
She's joined a family from Chester, by writing to the Prime Minister and asking why the promise of giving CBD to other people through the NHS has not been fulfilled.
She handed in a letter at Number 10 on June 16 at the same time as 9-year-old Thomas Braun.
Thomas has written to the Prime Minister to ask for his brother Eddie to receive similar treatment as Alfie.
His brother Eddie has severe, complex epilepsy and can suffer up to 100 different seizures a day.
His family has been buying medicinal cannabis privately over the last year despite the law change three years ago.
In his letter to the Prime Minister, Thomas explains that caring for a disabled or medically complex child can be hard enough for his mum and dad and they shouldn't have the added pressure of making sure there's enough funds to pay for private treatment every month.
In a statement a Department of Health and Social care spokesperson said:
“We recognise the challenges faced by children living with rare and hard to treat conditions."
“The government changed the law to allow specialist doctors to prescribe unlicensed cannabis-based products for medicinal use where it is clinically appropriate and in the best interests of patients."
“Licensed cannabis-based medicines are funded by the NHS where there is clear evidence of their safety and clinical effectiveness.”
Thomas hopes that his letter will spur the Government into action and help the other affected families too, many of whom campaign under the End Our Pain banner.