Access to medical cannabis for U.K. patients under threat due to Brexit

“I am facing the fact that my son might go into refractory epileptic seizures again, which can kill people,” Deacon said. “That’s how dangerous this is. So to say, ‘Oh, you can swap it for another product, sorry we can’t help,’ it is grossly unacceptable. It’s very very dangerous and I’m really frightened about what is going to happen.”

Deacon said she received a letter on Dec. 17, 2020 outlining the changes and while the family was fortunate to secure a few months of medicine, it remains fearful for what happens when that supply runs out.

“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 said.

Deacon said she wrote a letter to Prime Minister Boris Johnson, asking for him to intervene, and received an automated reply. “I just got an automatic response to say that he doesn’t reply to people that aren’t his constituents, which I find shocking because he is the prime minister,” she said.

By the time Alfie was five-years-old, he was having up to 150 cluster seizures a week, leading to weekly stays in intensive care. By travelling to the Netherlands and treating her son with Bedrolite, a CBD oil, he made a remarkable recovery, going weeks and even months without a seizure.

“He has been seizure-free for eight months,” Deacon told The Guardian this week, adding that before a change to his daily medical regiment, he went 11 months without a seizure.

Neurologist Dr. Mike Barnes, who helped secure Dingley’s prescription to Bedrolite, told The Guardian that the Department of Health and Social Care (DHSC) has “an astonishing level of ignorance” to believe that every cannabis product is the same and produce the same therapeutic effects. “Each variety of cannabis is subtly different and you can’t just swap a child from one product to another,” Dr. Barnes said.

Joanne Griffiths, whose 11-year-old son, Ben, also relies on medical cannabis, told Health Europa that her and other families are urging the U.K. government “to not only fund this medication, but to work with the Dutch government to find an urgent solution.”

Griffiths said her son experienced up to 300 seizures a day before taking medical cannabis. “We can’t go back to that nightmare. Other parents are also fearful of the danger this move will cause to their child,” she said.

Netherlands pharmacist Arwin Ramcharan told The Guardian that the situation is “really sad.”

“We are not allowed to send this medicines whatsoever to the U.K. after Brexit. It is now a battle between the U.K. government and the Dutch government,” Ramcharan said.

Deacon and other families with medical cannabis prescriptions fought for years to access the medicine legally. To see the rules changed with just a few weeks of notice is a “kick in the teeth,” Deacon said. “For the prime minister to ignore me, and all the other families, is an utter disgrace,” she said.

In response, the DHSC is recommending that patients switch to “a range of alternative cannabis-based medicines available to U.K. patients,” and discuss alternatives with their doctors.

The campaign, End our Pain and Epilepsy Action, is calling for increased access to medical cannabis products within the U.K., including getting Bedrolite covered under the National Health Service.

Lucy Richardson’s family is part of the campaign. Her seven-year-old daughter Sienna made a “miracle” recovery after treating her rare form of epilepsy — Landau Kleffner syndrome — with cannabis oil.

According to Richardson’s mother, Sienna’s condition began to improve within two weeks of taking the oil. “Since taking it, she is able to understand and speak normally,” Richardson said.

“She is living a normal life, she is still in mainstream school, playing with friends, she is doing really, really well. When we saw her getting better and better, it was amazing,” she added.