The mother whose campaign on behalf of her epileptic son helped drive the legalisation of medicinal cannabis in the UK in 2018 has said he might die after the Government announced his supply of Bedrolite oil from the Netherlands would stop because of Brexit.
Hannah Deacon, whose nine-year-old son Alfie Dingley suffers from a rare and severe form of epilepsy, said she was given just two weeks notice by the Department of Health and Social Care (DHSC) that “prescriptions issued in the UK can no longer be lawfully dispensed in an EU member state” due to the end of the Brexit transition period on December 31, 2020.
Deacon told the Guardian: “They [the DHSC] said they understand our concern, but they can’t do anything. Well let me tell them, it is not concerning, it is terrifying.”
She said the DHSC did not tell her directly that she would no longer get the drug. Instead, the letter went to pharmacy suppliers around the country who were told to advise on “alternative” prescriptions which would be “clinically appropriate to switch patients on to”.
“I am facing the fact that my son might go into refractory epileptic seizures again which can kill people,” said Deacon.
“That’s how dangerous this is. So to say ‘oh you can swap it for another product, sorry we can’t help’ is grossly unacceptable. It’s very very dangerous and I’m really frightened about what is going to happen.”
“The letter was sent on December 17, so we had no time. We’re very lucky that we were able to secure a couple of months’ worth of medicine. But that is not long. What makes me really angry is the lack of time we have, the lack of empathy, of care. My son is on a medicine that works for him, why would they take that away?” she added.
When Alfie was diagnosed with a rare form of epilepsy, Deacon researched the condition herself, eventually leading her to the Netherlands where she moved with her son in September 2017 so he could begin pioneering cannabis treatment which saw his seizures stop.
They were forced to return to the UK in early 2018 when funds ran out, which prompted her campaign for legalisation.
She said Alfie has been seizure free for eight months, but that life is still tough: “We don’t have a perfect life… he has a very difficult genetic epilepsy which causes behaviour problems; he has autism. Life is definitely not rosy, but his quality of life is amazing, he hasn’t been near a hospital for two years.”
Deacon wrote to UK Prime Minister Boris Johnson on December 29 asking him to intervene to help Alfie, but received an automatic response saying he didn’t reply to people who weren’t his constituents.
In a statement, the DHSC said: “We sympathise with patients dealing with challenging conditions. There is a range of alternative cannabis-based medicines available to UK patients.
“The decision on what treatments to prescribe for patients is rightly one for clinicians to make, on a case-by-case basis and dependent on the specific needs of the individual. If patients have any concerns, they should discuss them with their doctor.”
UPDATE: UK Health Secretary Matt Hancock has said the Government is looking for an “urgent legal fix” to resume the importation of medicinal cannabis from the Netherlands post-Brexit.
Hancock said the Dutch Government was behind the decision to halt the supply of Bedrolite oil to the UK after Britain left the EU single market and customs union.
On Thursday, he told the Commons Health and Social Care Committee of MPs: “This is actually a decision by the Dutch Government. And therefore, we’re obviously working very closely with them to try to change the position.
“It isn’t a decision that we can unilaterally change from the UK. And so we’re looking in the short term at an urgent legal fix and in the medium term, working with the Home Office and, of course, the Dutch Government to try to find a way through.”