The brother of a severely epileptic boy has hand-delivered a letter to Downing Street urging the prime minister to help get a medical cannabis prescription for his sibling.
Thomas Braun, nine, told Boris Johnson his parents should not have the “added worry of having to find lots of money to pay for his medicine”.
His younger brother Eddie can suffer up to 100 seizures a day.
Medicinal cannabis can be prescribed on the NHS in “exceptional” cases.
The treatment was made legal with a prescription in 2018 for those with an “exceptional clinical need”.
But since then only three NHS prescriptions have been issued, forcing families to spend thousands on private treatments.
Eddie’s family from Farndon, Cheshire, spend almost £800 ($990) a month on his medical cannabis medication which they say is “life-transforming”.
Thomas, who said his brother means “everything” to him, asked the prime minister to help his parents “and the other mums and dads” who have to fundraise each month to meet the medical bills.
He wrote: “My mum and dad love us both, and they have to help Eddie a lot and sometimes I have to help too.
“They have the added worry of having to find lots of money to pay for his medicine.
“Lots of our friends help. But getting the medicine from the government without having to do lots of things to find the money would help them a lot.”
Thomas said he “felt nervous” delivering the letter to Downing Street but he said “it was also very exciting, because this is my chance to actually help change my brother’s life and my family’s life”.
His mother Ilmarie Braun said “you have to fight for access to everything” for children who have complex needs.
“A school place, adaptations at home, the right wheelchair, to then try to manage Eddie’s medication needs, that’s just beyond what’s reasonable,” she said.