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 a meeting between Deacon and the minister for public health, Jo Churchill, was set up after publicity surrounding her case in the Guardian and the BBC.
She had been given just two weeks’ notice by the Department of Health and Social Care (DHSC) that due to the end of the transition period, “prescriptions issued in the UK can no longer be lawfully dispensed in an EU member state”, leaving her desperately frightened about her son’s future.
“I spoke to this minister about three times … I do feel she is empathic and I do think she understands and I am grateful, but the fight is not over,” she said, as the Dutch decision only gives her a six-month lifeline.
There are 41 other families in the UK with children in similar conditions treated by the same medicine, and only one other has been able to get a prescription on the NHS, which costs £2,000 a month.
“There is still huge problems so this is a small victory and my son is safe and that’s what matters to me, but at the same point I’m very acutely aware that there’s many other people still suffering,” she said.
“Giving these families an NHS prescription would save the NHS millions of pounds if you think about how much intensive care treatment costs.
“Some of them have children on palliative care before they started Bedrolite and now they are not, but these families should have the right to just enjoy their children, rather than having to worry every month where the money’s coming from,” said Deacon.
She said she was determined to keep the pressure up on Churchill to find a permanent solution for everyone affected.
A Department of Health spokesperson confirmed an agreement had been struck with the Dutch government “on the supply of Bedrocan oil to UK patients, which will bring relief to the families who depend on these medicines.
“We are grateful to the Dutch government for working with us closely and quickly on this solution, which will last until 1 July. We are exploring more permanent solutions to ensure people who need these treatments can continue to access them.”