A year after Billy Caldwell’s GP was barred from prescribing him medicinal cannabis, the youngster is facing another crisis.
The 13-year-old, whose case helped persuade the Home Secretary to change the law on the drug last year, has just nine days’ supply of meds left.
And despite world-renowned Great Ormond Street specialist Professor Helen Cross advising that Billy should be prescribed the medicine, she has had no response from the Trust.
His mum Charlotte Caldwell said the lack of action as Billy’s prescriptions starts to run out, is “cruel and unfair”.
She understands another child in Northern Ireland has the prescription and a second is getting the plant-based medicine on the NHS in England.
Charlotte, from Castlederg, Co Tyrone, said: “Billy is running out of time and we’re heading to a crisis.
“I’ve tried to be dignified and work with doctors and give doctors all the evidence as it has been explained to me medicinal cannabis works for Bill. I don’t know what else I can do. We’re on the countdown again.”
Now Charlotte is urging Health Secretary Matt Hancock and civil
servants here to meet her.
The Department of Health has said it does not intervene in doctors’ decisions and will consider the Great Ormond Street opinion once they have a formal report.
Charlotte paid for the medication Billy is coming to an end of, privately but at around £6,000 for three months’ supply, she has run out of money and options.
She said: “I’m a single mum with a special needs child and I don’t have that money.”
The medicinal cannabis oil dramatically reduces Billy’s life-threatening seizures and allows him a good quality of life.
Charlotte said: “After our battle last year I never thought Billy would be back here again.
“He has been receiving his medicinal cannabis through a private prescription which has helped him keep alive and well.
“Professor Helen Cross advised the Belfast Trust to write Billy’s NHS prescription so he could continue his treatment.
“But to date Belfast has not taken her advice and I just do not have the money to fund the next supply.
“And without his medicine Billy’s life-threatening seizures will return.
“Somewhere within the Department of Health NI, the Belfast Trust my little boy’s NHS prescription has hit a blockage and I want to know why and what is being done to help us.
“Billy’s paediatric neurologist justified his clinical need last summer but now Billy is stuck without his prescription.
“And another family in England continues to receive NHS prescription for MCP via a GP.
“I am of course delighted that both those children are receiving NHS prescribed medicinal cannabis.”
Billy was getting cannabis oil from the NHS for more than a year until May last year, when his GP was ordered to stop.
Charlotte took Billy to Canada to get a supply but it was confiscated when they arrived at Heathrow Airport. After just four days without the drug.
Billy’s seizures returned and he needed emergency care in hospital until the Government moved on the meds. Billy returned to the care of Canadian experts last year after his seizures started to break through as he entered puberty.
He was placed on a different cannabis medicine, but Charlotte said they were “exiled” there after being warned she could be arrested on her return to the UK. She explained: “I got a call in Canada from a director of the Belfast Trust telling me it would be illegal for me to return to the UK with the prescription.
“We were finally able to return in February after another doctor agreed to write a private prescription for Billy.
“How can another child be given access to their medicine under the new guidelines and with no clinical trial data in Northern Ireland but Billy appears to be being left out in the cold?
“I’m not attacking those families – I just want the same for my son. But Billy is back to square one. He has nine days of medicine left and I feel broken.
“Billy changed an unjust, outdated 50-year-old law. I have fought for 13 years to help my boy live.
“I’m angry, frustrated and heartbroken that the Belfast Trust continues to act in this way. Billy’s life is once again at risk.”
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