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The neurologist Dr. Mike Barnes, who helped secure Dingley’s recipe for Bedrolite, told The Guardian that the Department of Health and Social Welfare (DHSC) has “an amazing level of ignorance” to believe that every cannabis product is the same and the same therapeutic produces effects. “Each strain of cannabis is subtly different and you can’t just swap a child from one product to another,” said Dr. Barnes.
Joanne Griffiths, whose 11-year-old son Ben is also dependent on medical cannabis, told Health Europa that she and other families are calling on the UK government to “not only fund this drug but to work with the Dutch government to provide a drug find urgent solution. “
Griffiths said her son had up to 300 seizures a day before using medical cannabis. “We cannot go back to this nightmare. Other parents are also afraid of the danger this step will pose for their child, ”she said.
Dutch pharmacist Arwin Ramcharan told The Guardian that the situation was “really sad”.
“We are not allowed to send these drugs to the UK at all after Brexit. It is now a battle between the UK government and the Dutch government, ”Ramcharan said.
Deacon and other families with medicinal cannabis prescriptions struggled for years to get legal access to the drug. Seeing the rules change in a matter of weeks is a “kick in the teeth,” said Deacon. “The prime minister’s ignoring me and all other families is an utter shame,” she said.
In response, the DHSC is recommending that patients switch to “a range of alternative cannabis-based medicines available to UK patients” and discuss alternatives with their doctors.
The End our Pain and Epilepsy Action campaign calls for improved access to medical cannabis products in the UK, including Bedrolite coverage from the National Health Service.
Lucy Richardson’s family is part of the campaign. Her seven-year-old daughter Sienna recovered “wonderfully” 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. “She has been able to understand and speak normally since she took it,” said Richardson.
“She lives a normal life, she is still in regular school, plays with friends, she is really, very well. When we saw her getting better and better, it was amazing, ”she added.