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Billy Caldwell forced to fly to Canada AGAIN as UK authorities miss vital licence deadline

His health crisis triggered creation of government expert panel on licences but Castlederg boy's health now at risk due to delay.

Billy Caldwell must return to Canada to access life saving medical cannabis after the authorities missed a vital deadline in his licence application.

The Co Tyrone youngster’s health crisis last month triggered the creation of a new government panel to examine applications for the plant therapy in the UK.

Without the oil Billy suffered up to 100 epileptic seizures a day, each one potentially deadly

Twelve-year-old Billy is once more out of time and must now travel the 3,000 miles from his home in Castlederg to Toronto to access the medication so his dosing will suffer as little disruption as possible.

His mother Charlotte said: “I’m at a loss as to how and why this can happen, especially considering other licences have been issued within the UK which is fantastic news for those families.

“Yet the little boy whose health crisis forced the government into sharp focus on medicinal cannabis, who made the law-makers sit up and decide on change for good, this little boy, my son, Billy Caldwell is sitting with his life under threat again.”

It takes 32 days to get Billy’s Tilray manufactured medication from Health Canada; 30 days for the Canadians to push through the legal process and two days in transit to the UK.


Billy's oil

It takes up to two weeks for an import licence to be organised to allow his anti-epilepsy drugs into Northern Ireland.

And both processes can only start the moment a licence is issued - and that has still not happened.

Tonight Billy’s mum Charlotte received an email to say the Department of Health has received notification of a “preliminary determination” regarding cannabis medicine for Billy.

Supporters of Billy Caldwell at a rally at Belfast City Hall (Image: Photopress Belfast)

Martin Dillon, Chief Executive, said: “We can proceed immediately with the procurement of the medicinal cannabis products to ensure that a continued supply of Billy’s oil is available.”

Mr Dillon told Charlotte to expect contact from the clinical team from the Belfast Trust in “a day or two” to “make arrangements for Billy’s ongoing care”.

But the timing leaves Billy short of his life saving oil for around four days and possibly more.

When the oil was confiscated from his mum at Heathrow airport in June, the youngster started suffering seizures after just 12 hours without medication and had to be given emergency treatment.

Charlotte with Billy (Image: Charlotte Caldwell)

His reaction to the sudden removal of the anti-epilepsy medication prompted Home Secretary Sajid Javid to permit the oil returned for Billy’s care.

And a series of devastating back-to-back seizures were brought under control when the first drops were administered.

Now though, the youngster is facing the same plight.

Despite the Home Office, the Department of Health in Northern Ireland and the Belfast Trust being made fully aware Billy needed a licence for the medical cannabis by Monday at the latest to meet the supply deadline, it will only arrive later this week.

Charlotte told Belfast Live: “The Belfast Trust and the Department of Health have been aware for a long time that it takes a minimum 32 days to get a new batch of Billy’s oil dispatched safely and legally into the NHS system in Northern Ireland from Canada.

“On July 5 the Belfast Trust informed Billy’s medical team at the Chelsea and Westminster Hospital in London that they had submitted Billy’s application.

“Two weeks on the process is still incomplete and we are out of time.

“On Saturday Billy’s doctor at the Royal Victoria Hospital Belfast confirmed with me that Billy had 34 days of oil doses left.

“The deadline to secure Billy’s oil with a licence was Monday. The expert panel had three days to consider it. Monday is passed. The deadline has been missed. We are back in crisis. We are back in danger. And we have no one who will explain why.

“Now my son faces the trauma of travelling to Canada again to try to save his life.”


A spokesperson for the Department of Health NI said: “The Department is working in conjunction with the Home Office and the Belfast Trust to ensure a continued supply of Billy Caldwell’s medicine is available.”

[source: belfastlive.co.uk / published: July 17. 2018]
 

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