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UK: Boy, 9, writes plea to PM for epileptic brother's cannabis treatment
BBC Thursday 17 Jun 2021 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. 'Desperate parents' 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. Hannah Deacon, whose son Alfie Dingley was the first UK patient given a long-term licence for medicinal cannabis on the NHS in June 2018, has also raised concerns in a letter to the prime minister. She said unless the situation changed "we will remain forever stuck with access blocked for very poorly children who are either left suffering unnecessarily, forced to pay thousands of pounds privately or even more worrying drawn to the black market". Ms Deacon, of Kenilworth, Warwickshire, said "desperate parents" were being forced to purchase "dangerous products" and were treating their children with substandard, illegal products. She said it was estimated more than 1,000 UK families were accessing black market products, but the number may be much higher. Ms Deacon, said nine-year-old Alfie's life had been transformed by taking medical cannabis. Alfie, who has a severe, rare form of epilepsy, previously had "absolutely no quality of life", suffering up to 150 seizures a month and she said caring for him was "harrowing". Alfie, who was prescribed Bedrolite oil, has been seizure-free for over a year, she said. Peter Carroll, from campaign group End Our Pain, said the situation was "bizarre and cruel" as the government "legalised a medicine, but hardly anyone can get it". A spokeswoman for the Department of Health and Social Care said licensed cannabis-based medicines were "funded by the NHS where there is clear evidence of their safety and clinical effectiveness". She said specialist doctors could now prescribe "unlicensed cannabis-based products for medicinal use where it is clinically appropriate and in the best interests of patients". https://www.bbc.co.uk/news/uk-england-merseyside-57494694
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