Alfie and Hannah (photo credit: Claire Carroll)
Hannah Deacon, mother of nine-year-old Alfie Dingley, who has a rare type of genetic epilepsy, has accused the British government of failing to take steps to ensure her son and 41 other children continue to receive their anti-epileptic medication. cannabis from Holland after the UK officially left the European Union on 31 December 2020.
Just two weeks before the UK had to leave the Jo, el UK The Department of Health and Social Care sent letters to pharmacies, medical cannabis clinics and campaign groups indicating UK recipes would no longer be recognized by Jo pharmacies and that other alternatives to finished cannabis oil products in the Netherlands should be obtained. Rather perplexed, this news was not communicated directly to the parents of the children affected by the change.
In what Deacon describes as a “complete misunderstanding of medicinal cannabis” by UK Department of Health officials, the government’s last-minute letter, also shows their little understanding of the precariousness of seizure control in children with refractory epilepsy.
Before Alfie began taking medical cannabis, doctors struggled to control his seizures, which saw him admitted regularly. The prescription for steroids seemed to help, but doctors warned that its long-term use could end up killing it.
Like many parents, Hannah’s desperate search for an alternative approach to managing Alfie’s epilepsy led her to cannabis. At the time, medicinal cannabis was not legal in the country UK, so the family turned their attention to the Netherlands. After a few months of crowdfunding, they had 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 confiscations were finally brought 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 anti-cannabis drug.
Nothing moves the mountains (nor does it change the legislation) like mother’s love, and the final legalization of medicinal cannabis in November 2018 was due to Deacon’s passionate campaign on his return to UK. In fact, Alfie became the first patient to receive a prescription for medical cannabis through the National Health Service (NHS).
UK Unrecognized prescriptions
Successful control of Alfie’s high-profile seizures using Bedrolite is probably the reason why forty other children in the UK bedrolites with refractory epilepsy are also currently prescribed.
In the Netherlands, unauthorized medicines such as bedrolite that require a prescription must be dispensed to overseas patients directly from the Dutch pharmacies where they were formulated – and this requirement has caused unforeseen problems in a post-Brexit era where UK recipes are no longer recognized in Europe.
In a statement to The Guardian newspaper, Department of Health officials said they “sympathize with patients suffering from difficult problems,” but insisted that a range of cannabis-based alternative drugs are available for UK patients “.
Deacon believes that this advice to simply “change” Bedrolite for an “alternative” product could have dangerous consequences for controlling Alfie’s seizures, which can be disrupted with the slightest change in medication, an opinion shared by all involved in Alfie’s clinical care.
“It’s not that we’re saying right, that generic paracetamol isn’t available,” he explains, “so you can take another generic paracetamol. It’s nonsense. That’s not the way to use medicinal cannabis.”
Life and death
“It’s about life and death. It’s about having to take my son to the hospital at two in the morning, keeping him pressed until someone can put a line on him until he can get steroids. This is unacceptable…. Why should my child face it when he finds a medicine that works for him? “
“I don’t want to face a life without my son,” Deacon insists, “especially because of the ineptitude of a government. This will not happen … We understand that epilepsy flows up and down, and sometimes it gets better and sometimes it gets worse. And if Alfie finds himself wrong again, which he will probably do because he has seizures, I want it to be because of epilepsy.I don’t want this to be because a government can’t bother to come and try to find a way to get his product in the country after the Brexit agreement “.
Despite the apparent intransigence of both UK and Dutch officials, Deacon is convinced that with enough political will this subsequent Brexit thinking can be resolved.
“I know this can be done.” she says. “It simply came to our notice then. It is about the Dutch being flexible with their legislation and legislation UK be receptive to a plan to fix it … So I ask the Department of Health to do the right thing to work with their counterparts from the Dutch authorities to find a way. “
At the time of writing, the file appears UK The government may be responding to pressure from medical cannabis activists. Secretary of State for Health Matt Hancock makes noises about collaborating with Dutch authorities to find a “legal correction‘to the situation, although this has not been communicated directly to Deacon or the other parents.
UPDATE: On January 21, 2021, the Dutch government announced that until July 1, the UK prescriptions issued for Bedrolite cannabis oil will be recognized at the Transvaal pharmacy where they are produced. Another long-term solution is likely to lead to one UK licensed producer who produces a cannabis oil similar to the use of imported bedrolite flowers under the direction of Transvaal.
Mary Biles, a project CBD collaborating writer, is a journalist, blogger and educator with experience in holistic health. Based in UK, is committed to accurately reporting on advances in medical cannabis research.
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