Medicinal Cannabis: Kenilworth mum hands in letter, calling for PM action on access
Hannah Deacon was at Downing Street this morning.
The mum of Kenilworth boy Alfie Dingley has joined a family in delivering a letter to Downing Street, calling for the Prime Minister to step in, so more children with severe epilepsy can been treated with medicinal cannabis.
It's nearly three years since Alfie Dingley got a license to be treated with the drug.
Since then though, only a handful of prescriptions have been issued - despite a change in the law.
Hannah Deacon, came to Downing Street to support the family of Eddie Braun from Cheshire.
Hannah said:
'Alfie got his NHS prescription on the 19th of June 2018 and it's been like night and day.
'His life has gone from being very severely affected by seizures to having a year seizure-free in May, and his quality of life and our family has improved because of this medicine.'
In 2018, medical cannabis under prescription was legalised after lobbying campaigns by the families of the then six-year-old Alfie Dingley and 13-year-old Billy Caldwell.
But since the law change only three children with severe epilepsy have been granted medical cannabis on the NHS.
Hannah was joined by the Braun family at Downing Street today.
They can spend up to #780 per month on Eddie's medication, but for families with older children it can cost up to #2,000 a month.
Thomas Braun, who's Eddie's brother, explained in his letter to Boris Johnson how his brother needs a lot of additional care and that his parents should not 'have the added worry of having to find lots of money to pay for his medicine'.
Ilmarie Braun, Thomas and Eddie's mother, said:
'Being a parent is wonderful and it can also be challenging. Then being a parent to a child who has complex needs is in its whole own world of difficult because you have to fight for access to everything.
'A school place, adaptations at home to make it accessible, the right wheelchair, to then try to manage Eddie's medication needs, that's just beyond what's reasonable.
'We want Boris Johnson to act now. He can unlock emergency funding to cover this whilst all of the necessary steps are taken to commission the trials, all of these things that they've been talking about for three years that need to happen.'
A Department of Health and Social Care spokesperson said:
'We recognise the huge 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.'