Alfie and Hannah (photo credit: Claire Carroll)
Hannah Deacon, mother of nine-year-old Alfie Dingley who has a rare genetic type of epilepsy, has accused the British Government of failing to take action to ensure her son and 41 other children continue receiving their cannabis medicine from Holland after the UK officially left the European Union on the 31st December 2020.
Just two weeks before the UK was due to leave the EU, the UK Department of Health and Social Care sent letters to pharmacies, medical cannabis clinics and campaign groups indicating that UK prescriptions would no longer be recognised by EU pharmacies and that other alternatives to finished cannabis oil products from the Netherlands should be sourced. Rather perplexingly, this news was not directly communicated to the parents of the children affected by the change.
In what Deacon describes as a “complete lack of understanding of medical cannabis” by UK Department of Health officials, the Government’s last-minute missive also shows how little comprehension they have of the precarious nature of seizure control in children with refractory epilepsy.
Before Alfie began taking medical cannabis, doctors struggled to control his seizures which saw him regularly hospitalized. Prescribing steroids seemed to help, but doctors warned their long term use could eventually kill him.
Like many parents, Hannah’s desperate search for an alternative approach to manage Alfie’s epilepsy led her to cannabis. At the time, medical cannabis wasn’t legal in the UK, so the family turned their attention to the Netherlands. After a few months of crowdfunding, they’d raised enough to move to the Hague where Alfie began his treatment under the care of a pediatric neurologist.
Alfie was prescribed Bedrolite, a whole plant CBD product developed by the Dutch company Bedrocan for epilepsy. It was a gradual process, but after a few months Alfie’s seizures were finally under control.
However, when the family’s finances ran out, they were forced to return to the UK where Alfie could no longer legally access his life-saving cannabis medicine.
Nothing moves mountains (or changes legislation) like a mother’s love, and the final legalization of medical cannabis in November 2018 was much due to Deacon’s impassioned campaigning on her return to the UK. Indeed, Alfie became the first patient to get a prescription for medical cannabis through the National Health Service (NHS).
UK Prescriptions Not Recognized
Alfie’s high profile successful seizure control using Bedrolite is probably the reason why forty other children from the UK with refractory epilepsy are also currently prescribed Bedrolite.
In the Netherlands, non-approved medicines like Bedrolite requiring a prescription must be dispensed to overseas patients directly from the pharmacies in Holland where they were formulated – and this requirement has brought about unforeseen problems in a post-Brexit era where UK prescriptions are no longer recognized in Europe.
In a statement to The Guardian newspaper, Department of Health officials said they “sympathize with patients dealing with challenging conditions” but insisted that “a range of alternative cannabis-based medicines are available to UK patients.”
Deacon believes this advice to simply ‘swap’ Bedrolite for an “alternative” product could have dangerous consequences for Alfie’s seizure control, which can be disrupted with the smallest change in medication – an opinion shared by everyone involved in Alfie’s clinical care.
“It’s not like we’re saying well, that generic paracetamol is not available,” she explains, “so you can take another generic paracetamol. It’s nonsense. That’s not the way you use medical cannabis.”
Life and Death
“This is about life and death. This is about me having to take my child into hospital at two o’clock in the morning, hold him down until someone can get a line into him until they can get steroids into him. That is unacceptable…. Why should my son face that when he’s found a medicine that works for him?”
“I don’t want to face a life without my child,” insists Deacon, “especially because of the ineptitude of a government. That’s not going to happen… We understand that epilepsy ebbs and flows, and sometimes it gets better and sometimes it gets worse. And if Alfie becomes unwell again, which he will probably because he has seizures, I want that to be because of epilepsy. I don’t want that to be because a government can’t be bothered to reach out and try and work out a way in which we can get his product into the country after the Brexit deal.”
Despite the apparent intransigence from both UK and Dutch officials, Deacon is convinced that with enough political will, this Brexit afterthought can be resolved.
“I know that this can be done.” she says. “This is not too hard. This is about the Dutch being flexible with their legislation and the UK being receptive to a plan to work this out… So, I’m calling on the Department of Health to do the right thing to work with their counterparts in the Dutch authorities to find a way.”
At the time of writing, it appears the UK Government may be heeding to pressure from medical cannabis activists. Secretary of State of Health Matt Hancock is making noises about working with Dutch authorities to find a ‘legal fix’ to the situation, although this hasn’t been directly communicated to Deacon or the other parents.
Mary Biles, a Project CBD contributing writer, is a journalist, blogger and educator with a background in holistic health. Based between the UK and Spain, she is committed to accurately reporting advances in medical cannabis research.
Copyright, Project CBD. May not be reprinted without permission.