Billy Caldwell’s case helped persuade the home secretary to change the law on the drug last year – but he now has just nine days’ supply left.
The cannabis oil dramatically reduces Billy’s seizures and gives him a much better quality of life, says his mother.
Charlotte Caldwell told Sky News that a world-renowned Great Ormond Street specialist has advised Billy’s doctor to prescribe the medicine, but she has so far heard nothing back.
She says it is “unfair and cruel” and claims the same doctor is giving it to another child in Northern Ireland, and that another is getting it on the NHS in England.
Ms Caldwell, from County Tyrone, has paid for the drug privately before – but at more than £6,000 for three months’ supply she simply can’t afford it anymore.
“I’m a single mum with a special needs child and I don’t have the money, I just can’t do it,” says Ms Caldwell.
“I’m frightened and extremely worried for Billy because it’s almost like history repeating itself.”
She told Sky News: “Billy is running out of time. We’re heading to a crisis situation.
“I’ve tried to be dignified and work with doctors and give the doctor in Belfast all the evidence… I don’t know what else I can do. We’re on the countdown again.”
Ms Caldwell is urging Health Secretary Matt Hancock and health bosses in Northern Ireland to meet her as the clock ticks on her son’s supply.
The Department of Health has said it does not intervene in doctors’ decisions and will consider the Great Ormond Street opinion when it gets a formal report.
Billy, 13, was getting cannabis oil through the public health system for over a year until May 2018, when his GP was ordered to stop.
The family went to Canada to get a supply but it was confiscated when they flew into Heathrow Airport.
After four days without the drug, Billy was rushed to hospital when his seizures “returned with a vengeance” and Ms Caldwell says she thought he might die.
The home secretary’s intervention meant Billy and other children eventually got permission for the medication.
It also helped change the law, and in November 2018 specialist doctors were given the power to prescribe cannabis-based medicines.
However, patients say the NHS is reluctant to sign off on them, and some have been forced to go private or illegally grow their own supply.
Billy and his mother returned to see Canadian experts last winter after his “seizures started to break through” as he entered puberty.
He was put on a new cannabis medicine, but Ms Caldwell says they ended up “exiled” there after being warned she could be arrested.
“I got a call in Canada from a director of the Belfast trust telling me that Billy’s doctor would not be supporting his new prescription, so it would be illegal for me to return to the UK with the prescription,” says Ms Caldwell.
After months in the freezing Canadian winter, they were finally able to return in February after a doctor agreed to a private prescription.
Now, with the money for private treatment gone, Ms Caldwell says the family’s specialist paediatric doctor is refusing to give them a fresh supply because of new guidelines and a lack of clinical data.
She says a referral to Professor Helen Cross at London’s Great Ormond Street children’s hospital three weeks ago was “amazing” and gave the family hope.
The expert recommended that Billy be given the medicine and Ms Caldwell is now desperately waiting to hear if her local specialist will take it on board.
“How come that other child is getting their medicine under the new guidelines and with no clinical trial data in Northern Ireland, by the same doctor?” says Ms Caldwell.
“I’m not attacking those families,” she adds.
“I’m delighted they got their medicine after Billy got his, but how come we have a GP in England writing a prescription for medicinal cannabis for another child on the NHS.”
“This is the little boy who changed the law… I am angry, I’m frustrated, I’m sad, I’m frightened, I’m worried. I’m totally at a loss.”
Northern Ireland’s Department of Health did not comment on Ms Caldwell’s claims that another child was getting the medicine.
However, it said it had approved the medicine last year but that Billy’s mother had “sought an alternative unlicensed cannabis-based product on a private basis”.
“Any changes to clinical care are a matter first and foremost between the patient and the patient’s clinician,” said a spokesperson.
They said the department was aware of the second opinion from Great Ormond Street and that a formal report was “expected shortly” and would be “considered when received”.