Alfie and Hannah (picture credit score: Claire Carroll)

Hannah Deacon, mom of nine-year-old Alfie Dingley who has a uncommon genetic sort of epilepsy, has accused the British Authorities of failing to take motion to make sure her son and 41 different kids proceed receiving their hashish medication from Holland after the UK formally left the European Union on the thirty first December 2020.

Simply two weeks earlier than the UK was as a result of depart the EU, the UK Division of Well being and Social Care despatched letters to pharmacies, medical hashish clinics and marketing campaign teams indicating that UK prescriptions would now not be recognised by EU pharmacies and that different options to completed hashish oil merchandise from the Netherlands needs to be sourced. Slightly perplexingly, this information was indirectly communicated to the mother and father of the kids affected by the change.

In what Deacon describes as a “full lack of awareness of medical hashish” by UK Division of Well being officers, the Authorities’s last-minute missive additionally exhibits how little comprehension they’ve of the precarious nature of seizure management in kids with refractory epilepsy.

Repeatedly Hospitalized

Earlier than Alfie started taking medical hashish, docs struggled to manage his seizures which noticed him commonly hospitalized. Prescribing steroids appeared to assist, however docs warned their long run use might finally kill him.

Like many mother and father, Hannah’s determined seek for an alternate method to handle Alfie’s epilepsy led her to hashish. On the time, medical hashish wasn’t authorized within the UK, so the household turned their consideration to the Netherlands. After a couple of months of crowdfunding, they’d raised sufficient to maneuver to the Hague the place Alfie started his remedy below the care of a pediatric neurologist.

Alfie was prescribed Bedrolite, an entire plant CBD product developed by the Dutch firm Bedrocan for epilepsy. It was a gradual course of, however after a couple of months Alfie’s seizures had been lastly below management.

Nonetheless, when the household’s funds ran out, they had been compelled to return to the UK the place Alfie might now not legally entry his life-saving hashish medication.

Nothing strikes mountains (or adjustments laws) like a mom’s love, and the ultimate legalization of medical hashish in November 2018 was a lot as a result of Deacon’s impassioned campaigning on her return to the UK. Certainly, Alfie turned the primary affected person to get a prescription for medical hashish via the Nationwide Well being Service (NHS).

UK Prescriptions Not Acknowledged

Alfie’s excessive profile profitable seizure management utilizing Bedrolite might be the rationale why forty different kids from the UK with refractory epilepsy are additionally at present prescribed Bedrolite.

Within the Netherlands, non-approved medicines like Bedrolite requiring a prescription should be distributed to abroad sufferers instantly from the pharmacies in Holland the place they had been formulated – and this requirement has led to unexpected issues in a post-Brexit period the place UK prescriptions are now not acknowledged in Europe.

In an announcement to The Guardian newspaper, Division of Well being officers mentioned they “sympathize with sufferers coping with difficult circumstances” however insisted that “a variety of different cannabis-based medicines can be found to UK sufferers.”

Deacon believes this recommendation to easily ‘swap’ Bedrolite for an “different” product might have harmful penalties for Alfie’s seizure management, which may be disrupted with the smallest change in remedy – an opinion shared by everybody concerned in Alfie’s scientific care.

“It’s not like we’re saying effectively, that generic paracetamol will not be out there,” she explains, “so you possibly can take one other generic paracetamol. It’s nonsense. That’s not the best way you employ medical hashish.”

Life and Dying

“That is about life and loss of life. That is about me having to take my baby into hospital at two o’clock within the morning, maintain him down till somebody can get a line into him till they will get steroids into him. That’s unacceptable…. Why ought to my son face that when he’s discovered a medication that works for him?”

“I don’t wish to face a life with out my baby,” insists Deacon, “particularly due to the ineptitude of a authorities. That’s not going to occur… We perceive that epilepsy ebbs and flows, and typically it will get higher and typically it will get worse. And if Alfie turns into unwell once more, which he’ll in all probability as a result of he has seizures, I would like that to be due to epilepsy. I don’t need that to be as a result of a authorities can’t be bothered to succeed in out and try to work out a manner during which we are able to get his product into the nation after the Brexit deal.”

Regardless of the obvious intransigence from each UK and Dutch officers, Deacon is satisfied that with sufficient political will, this Brexit afterthought may be resolved.

“I do know that this may be executed.” she says. “This isn’t too exhausting. That is concerning the Dutch being versatile with their laws and the UK being receptive to a plan to work this out… So, I’m calling on the Division of Well being to do the suitable factor to work with their counterparts within the Dutch authorities to discover a manner.”

On the time of writing, it seems the UK Authorities could also be heeding to strain from medical hashish activists. Secretary of State of Well being Matt Hancock is making noises about working with Dutch authorities to discover a ‘legal fix’ to the scenario, though this hasn’t been instantly communicated to Deacon or the opposite mother and father.

Mary Biles, a Venture CBD contributing author, is a journalist, blogger and educator with a background in holistic well being. Based mostly between the UK and Spain, she is dedicated to precisely reporting advances in medical hashish analysis.

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