Billy’s battle is won but tomorrow it starts again to help every other child
HIS MUM CHARLOTTE CALDWELL YESTERDAY
BILLY Caldwell’s mum blasted the Uk government last night for putting him through “six days of torture” after it handed back cannabis oil seized by customs officials.
Charlotte Caldwell, 50, said she had “achieved the impossible” after Home Secretary Sajid Javid announced he would grant a licence for 12-year-old Billy to get the “life saving” treatment.
Officials worked overnight to draft emergency legislation so Co Tyrone’s Billy – who has severe epilepsy – can be treated with the drops after he suffered “back to back” seizures on Friday.
Billy will now have access to four months’ worth of the medicine, although for now it will have to be administered by a hospital specialist.
Charlotte called the move a “wake-up call” for the government, which she hopes will act to ensure no other family experiences a similar “horrendous” ordeal.
Speaking at London’s Chelsea and Westminster Hospital, where Billy is being treated, she told the Irish Sunday Mirror: “While I am relieved the right thing is finally being done for Billy today, I’m devastated my son has had to nearly die to get drops of a natural medication returned to him. Putting him through six days of torture has been cruel to the extreme.”
The cannabis oil, which contains a substance called THC, is illegal in the UK but available elsewhere.
Charlotte, from Castlederg, vowed to continue fighting for medicinal cannabis to be prescribed to children in the UK.
Talking moments after the medication was returned, she said: “History has been made today. One little boy has achieved the impossible. Billy’s medication has been released by the Home Office and is on its way.
“Today was about Billy. But from tomorrow it’s about thousands of other children.
“My experience throughout this leaves me in no doubt the Home Office can no longer play a role, in fact play any role, in the administration of medication for sick children.”
Billy started cannabis oil treatment in the US in 2016. Charlotte credited the drops – brand name Tilray – with keeping him seizure-free for 300 days. Last year, he became the first UK patient to get an NHS prescription for the medication. But in May Charlotte was told he could no longer have it. Charlotte resorted to collecting the prescription from Canada, where it is legal. But Home Office minister Nick Hurd ordered a six-month supply to be confiscated from her on Monday as she and Billy arrived at Heathrow. The decision caused a public outcry as Billy was taken to hospital hours after the meds were seized and has since been gripped with “lifethreatening” seizures. He has now been allowed a prescription of six 20ml
bottles – about four months’ worth. For now Charlotte is unable to treat her son by law so it has fallen to a consultant in the hospital to treat Billy.
Charlotte, pictured with her son and the drops last night, said: “At this stage I do not care who gives Billy the drops as long as he gets them. He had his first dose at 2.30pm with this very syringe and the dose quickly he began to settle and I feel that will continue.”
She said she hoped his condition would improve further today.
Mr Javid said he has used “an exceptional power” to “urgently issue” a licence to treat Billy.
He added: “My decision is based on the advice of senior clinicians who have made clear this is a medical emergency.”
Last night the UK government came under growing pressure from politicians and health experts to rethink the law. Ex-government drugs advisor Professor David Nutt suggested control of drugs should be moved from the Home Office to the Department of Health, which “at least has the competence to evaluate medical claims”.
He added: “There will be many other people in the UK with severe epilepsy who are likely to benefit from medical cannabis and provision must be made to stop them suffering brain damage and death from cannabis-treatable seizures.”
Labour’s Shadow Home Secretary Diane Abbott said: “The overriding priority of any government should be preserving the life and well-being of our citizens.
“This is all that Billy Caldwell’s mum wants for her son.
“The Government’s current approach to medical drugs is not doing that”