Billy Caldwell the boy who prompted the legalisation of medicinal cannabis in the UK, can now receive his first bottle of cannabis oil under the first NHS care plan of its kind.
Almost two years after medical cannabis was legalised, his mum Charlotte revealed the funding is in place and she has the care plan in her hand
Charlotte from Castlederg, Co Tyrone, said: “At the center of all of this is Billy, he’s the reason for all of this and he’s the reason I kept fighting for the miracle of medicinal cannabis.
“I have now received the news I have been waiting for for the past two years.
(Image: Charlotte Caldwell)
“Billy’s GP called to inform me that a shared care plan has been drawn up and I attended surgery to sign to it.
“This care plan is one that will allow him to receive his prescribed cannabis based medicine on the NHS.
“You can’t imagine how relieved I am to have received this confirmation after all these years of campaigning.
“I am incredibly grateful to the health authorities in Northern Ireland who have worked with Billy’s treating clinician and prescriber, his GP and the paediatric neurology team at Great Ormond Street Hospital to develop and approve this plan.”
Charlotte also thanked Matt Hancock, the UK Health Secretary, for approving a new centralised system for recommending cannabis products for children with intractable epilepsy.
He set up RESCAS, the Refractory Epilepsy Specialist Clinical Advisory Service which allowed Billy to be assessed by experts in the area. They confirmed the teenager should not have the medicinal cannabis stopped.
Billy, now 15, was just 13 when his failing condition triggered a global focus on his plight when the UK government confiscated his medicinal cannabis at Heathrow Airport in 2018.
An image of him deep in a seizure on an ambulance trolley being transported into a London hospital was published as his mother begged for the return of the oil outlawed in the UK.
His mum’s campaign to have the oil handed back to her led to cannabis-derived medicine being legalised across the UK and made available for prescription.
But it was another two years before she could secure the medication funded by the NHS and as part of an NHA care plan.
Now Billy has secured a clinical care pathway overseen by a number of doctors including Professor Helen Cross at Great Ormond Street Hospital.
And the cannabis oil which helps keep his seizures at bay, can now be bought from a Canadian firm privately in a funding deal paid for by the NHS.
Billy’s prescription is understood to be the first of its kind that contains the active ingredient THC unlike other cannabis oil that contains only CBD.
It remains unclear if the move by the Belfast Trust will set a workable precedent to secure NHS funding for other children whose THC medication remains on private prescriptions.
Charlotte said: “Today I am also thinking of all the people in the UK and Ireland who are still be denied access to medicinal cannabis and will commit myself to do all I can to promote access and more clinical research to enable more to benefit from the medicine that has saved Billy’s life”.