Mother’s AGONY as epileptic boy Billy Caldwell faces ANOTHER medical cannabis setback
BILLY CALDWELL, a severely epileptic child whose story helped legalise medical cannabis last year, is facing yet another heartbreaking setback.
Billy, 13, suffers from a severe, life-threatening form of epilepsy for which cannabis oil is the most effective treatment. After having his medicine confiscated at Heathrow Airport in June last year, he was granted an emergency exemption licence by Home Secretary Sajid Javid, and from July was provided this medicine by the NHS. Mr Javid then ordered a review into the law, which resulted in medical cannabis becoming legal in the UK in November.
However, seven months later only a very small number of patients have access on the NHS due to strict guidelines from the British Paediatric Neurology Association (BPNA), forcing those who are able to turn to costly private clinics.
Even Billy, the boy whose story changed the law, is again struggling to access the right medicine.
Billy’s mother Charlotte said: “My real fear is my little boy will end up in a life-threatening situation if his supply runs out. This is torture.
“I am absolutely crippled with dread, frightened and terrified for Billy.
“Once again our lives are in turmoil, my heart has broken into a million pieces.”
In October last year, despite being treated with a medical cannabis product, Billy’s seizures started breaking through.
Charlotte decided to take Billy back to Canada to be reassessed by medical cannabis experts.
The experts in Canada told Charlotte that because Billy was entering puberty, his body was evolving, so the condition was also evolving and his medicine needed to be adapted.
Billy was transitioned onto a new medication and all the information sent back to Belfast.
However, the new product Charlotte was requesting for her son is unlicensed in the UK and so the Belfast Health and Social Care Trust were unable to provide it.
A spokesman for the Belfast Trust told Express.co.uk: “As previously stated by the Department of Health, medicinal cannabis was approved in Billy’s case last year and provided to him by the health service, however, an alternative unlicensed cannabis-based product was sourced on a private basis by Ms Caldwell.
“The Trust remains committed to ensuring the appropriate care for Billy. Discussions remain ongoing.”
He added that the NHS will continue to provide Billy with the medical cannabis product previously prescribed.
However, Charlotte argued that the old medication is no longer controlling Billy’s seizures and that once they start breaking through his seizures rapidly escalate.
She said she had “no choice” but to seek alternative medication.
Charlotte told Express.co.uk: “I lost count of how many NHS paediatric neurologists and private paediatric neurologists I emailed to get them to support Billy’s new prescription, so we could go home.
Only one private doctor came forward.”
The pair returned to the UK in February and Billy has been receiving his medicine on a private prescription from a doctor in England.
This means the family have had to pay for his medicine, private consultation fees as well as return flights from Northern Ireland to England every five weeks.
Then, two weeks ago, Billy and Charlotte were thrown a lifeline when medical cannabis manufacturer Aurora offered to gift Billy his private prescription at a medical cannabis conference in London entitled ‘Women, CBD and Medical Cannabis Conference’.
However, the company has since said they are “not in a position” to provide the prescription free of charge, due to the high numbers of families and patients now requesting the same.
They will provide the prescription up to June 4, but after this time the family will have to pay the extortionate price themselves.
Charlotte is demanding that the NHS support Billy’s new medication.
She said: “It’s just a real injustice. The question we have to ask is: is this just a shambles or is it orchestrated cruelty against my little boy?”