The mother of a nine-year-old boy with a severe and rare form of epilepsy who was told Brexit would end the supply of a life-changing cannabis medicine that saved her son’s life has been given a six-month reprieve.
Hannah Deacon said she was hugely grateful after being given the lifeline by the Dutch government, which has sanctioned continued supply of the medicines despite a Brexit ban on fulfilling prescriptions from the UK.
She received a letter on Thursday from the Department of Health to inform her that the government in the Netherlands, where the medicine was created, had “confirmed that they will allow continued supply of Bedrocan oil against UK prescriptions for existing patients until 1 July 2021”.
“I cried when I read it. I sat and cried. I was told online and I was quite surprised to be honest. I’ve spent the last two weeks terrified that Alfie’s seizures will recur because of the fact that we could not get any more Bedrolite [Bedrocan]. I didn’t feel that the Department of Health took it seriously enough to keep that medicine supply line safe so I was very angry about that, and very upset,” she said.
Her campaign to save her son Alfie Dingley’s life in 2017 led to a change in the law enabling the medicine, which has helped him become seizure-free after years of 150 seizures a week, to be prescribed in the UK.
The life-saving breakthrough came after…
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The mother of a nine-year-old boy with a severe and rare form of epilepsy who was told Brexit would end the supply of a life-changing cannabis medicine that saved her son’s life has been given a six-month reprieve.
Hannah Deacon said she was hugely grateful after being given the lifeline by the Dutch government, which has sanctioned continued supply of the medicines despite a Brexit ban on fulfilling prescriptions from the UK.
She received a letter on Thursday from the Department of Health to inform her that the government in the Netherlands, where the medicine was created, had “confirmed that they will allow continued supply of Bedrocan oil against UK prescriptions for existing patients until 1 July 2021”.
“I cried when I read it. I sat and cried. I was told online and I was quite surprised to be honest. I’ve spent the last two weeks terrified that Alfie’s seizures will recur because of the fact that we could not get any more Bedrolite [Bedrocan]. I didn’t feel that the Department of Health took it seriously enough to keep that medicine supply line safe so I was very angry about that, and very upset,” she said.
Her campaign to save her son Alfie Dingley’s life in 2017 led to a change in the law enabling the medicine, which has helped him become seizure-free after years of 150 seizures a week, to be prescribed in the UK.
The life-saving breakthrough came after…
