A 12-year-old boy who uses a cannabis-based medication to control his severe epilepsy suffered his first seizures in months last night, hours after his prescription was confiscated by customs officials.
Billy Caldwell’s mother, Charlotte, yesterday accused the government of “signing Billy’s death warrant” after returning from Canada with a six-month supply of the medicine only to have it confiscated on arrival.
She twice met policing minister Nick Hurd MP and had previously told a press conference she hoped the minister would return his medicine as any seizure could be life-threatening.
Sharing a video of Billy’s seizure at 1am this morning, Ms Caldwell urged her followers on the Keep Billy Alive Facebook group to email Mr Hurd and plead for him to relent.
“The last time he had a seizure was several months ago, and even then it was because he wasn’t well anyway and had a bug at the time,” a spokesperson for the family told The Independent.
But so far the Home Office has refused to budge. A spokesperson said it is “sympathetic to the rare situation Billy and his family face” but it is unlawful to bring the controlled substance into the country.
The medication is administered three times a day, and prior to Billy starting this treatment he could have as many as 100 seizures in 24 hours.
Since he was first prescribed the cannabis oil medication, Tilray, while in America in 2016, he has gone the best part of a year with no seizures.
Last year Billy became the first person in the UK to receive an NHS prescription for medical cannabis, with the support of his GP. But last month the Home Office intervened to order his doctor to halt the prescription or risk losing his licence.
The cannabis oil’s main component is the substance cannabidiol (CBD), which can be licensed as a medicine in the UK. But it also contains small amounts of THC, the psychoactive component responsible for causing the high in recreational forms of the drug, which is enough to have it classed as a Schedule 1 controlled substance in the UK seen as having no medical value.
It can be prescribed in Canada, which also recently legalised recreational cannabis use, for the treatment of epilepsy and Ms Caldwell has also said it has helped with Billy’s autism.
The family are campaigning for reform of the laws around medical marijuana use to help Billy and many other children and families who have intractable epilepsy and other conditions that could benefit.
A Home Office spokesperson said: “The Home Office is sympathetic to the rare situation that Billy and his family are faced with.
“The policing minister met Ms Caldwell and advised her that despite these extremely difficult circumstances, it is unlawful to possess Schedule 1 drugs such as those seized at the border [yesterday] morning without a licence.
“The minister urged the family to explore licensing options with the Department of Health Northern Ireland.”