The mother of a child whose epilepsy can be eased by medical cannabis has called it “unconscionably cruel,” if the Home Office fails to grant more licenses that will allow medical teams to administer it to her son.
Hannah Deacon, whose 6-year-old son Alfie Dingley has epilepsy, was told by the Home Office in March “not to seek publicity” for her license application, after she was given assurances by the Prime Minister of a “speedy decision” which could allow her son access to medical cannabis on compassionate grounds.
However, since those assurances were given almost three months ago, no movement has been made on granting the license to Alfie.
The renewed call for action comes after the Home Office at the weekend granted access to the medical cannabis product Tilray, to 12-year old Billy Caldwell. Earlier last week, Billy’s mother Charlotte had supplies of Tilray obtained in Canada confiscated from her by airport officials at Heathrow, after the Home Office earlier prevented Billy’s doctor from prescribing it to him.
While on Tilray, Billy went over 250 days without a seizure, however within hours of being given his last dose on Tuesday, Billy’s condition worsened and he was hospitalized. His medicine, which prevented such seizures, sat in the Home Office building just a few miles away.
A national outcry and charges of hypocrisy leveled at Tory MPs, who have profited from the current regime, resulted in an embarrassed Home Office granting Billy a temporary license, albeit only for 20 days access to Tilray. The substance is banned in the UK because it contains tetrahydrocannabinol (THC), the primary psychoactive constituent of cannabis.
Congratulating the granting of the temporary license to the Caldwells, Deacon has now demanded action on her own son’s application, after adhering to the earlier request to stay silent. “The time for process and bureaucracy has passed,” she said in a statement posted to Facebook. “We demand action.”
Since the Home Office climb-down, Prime Minister May said Monday that the government needs to look at cases involving medical cannabis and review how they handle them, however, she distanced herself from any immediate reform to the current laws.
“Do we need to look at these cases and consider what we’ve got in place? Yes,” she said following a speech on NHS funding in London.
“But what needs to drive us in all these cases has to be what clinicians are saying about these issues.
“There’s a very good reason why we’ve got a set of rules around cannabis and other drugs, because of the impact that they have on people’s lives, and we must never forget that,” she added.
Earlier, Health Secretary Jeremy Hunt called for a swift review of the medicinal use of cannabis, as pressure mounts for the UK’s laws to keep pace with other developed nations.
Billy and Charlotte walking out to the media this morning. Billy rocking an amazing “Epileptic Warrior” t-shirt 👍 pic.twitter.com/w6h9zFUcJD
— Families4access (@families4access) June 18, 2018
Hunt told BBC Radio 4’s Today program: “I don’t think anyone who followed [the story of Caldwell] could sensibly say that we are getting the law on this kind of thing right. I think everyone feels for [Charlotte Caldwell, Billy’s mother], and of course there are many, many other people in that situation.”
Despite waiting almost a whole week to grant Billy access to the confiscated cannabis oil, Hunt praised Home Secretary Sajid Javid for acting “extremely decisively,” saying that a review on the policy will be completed by Javid “as quickly as he can”.
While Hunt suggested that the review could be completed within months, nothing has been suggested by the Home Office as to what will happen to patients like Billie Caldwell, or applicants like Alfie Dingley in the meantime.
Think your friends would be interested? Share this story!