The nine-year-old brother of a severely epileptic child has hand-delivered a letter to Downing Street urging the Prime Minister to help his sibling get an NHS medical cannabis prescription.
Thomas Braun explained in the 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”.
Thomas’s brother Eddie, who means “everything” to him, has severe, complex epilepsy and can suffer up to 100 seizures a day.
When describing the day Thomas said: “I felt nervous, it was intimidating. But it was also very exciting, because this is my chance to actually help change my brother’s life and family’s life.
“If the Government would pay for it, we wouldn’t have to worry about fundraisers and things, and that will give us more family time.”
Eddie’s family, who live in Farndon, near Crewe, can spend up to £780 per month on his life-transforming medical cannabis medication, but for families with older children it can cost up to £2,000 a month.
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.”
Ms Braun said her family has been fortunate to have the support of family and friends who hold fundraisers, but other families have had to sell their homes or stop the medication entirely.
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.
The mother of Alfie Dingley, Hannah Deacon, also wrote a letter to the Prime Minister last week about the transformative effect of the medication on her son.
Ms Deacon, from Warwickshire, who came to Downing Street to support Eddie’s family, 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.”
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The Braun family and Ms Deacon are calling for the Government to intervene and speak with them about the problems of access to medicinal cannabis on the NHS.
Ms Braun said: “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.”
On Monday, medical cannabis campaigners Billy and Charlotte Caldwell delivered a letter to Matt Hancock and the Department of Health and Social Care urging them to support the first NHS medical cannabis clinical study, and for the National Institute for Health Research to fund it.