Belfast Telegraph

Billy Caldwell family frustrated with Northern Ireland medication arrangements

Department of Health says process 'replicated' on London arrangements

Charlotte Caldwell and her autistic son Billy, who relies on cannabis oil
Charlotte Caldwell and her autistic son Billy, who relies on cannabis oil
Charlotte Caldwell and her 12 year old son Billy at their Castlederg home in Co Tyrone. Last year Billy became the first in the UK to get legally-prescribed cannabis oil on the NHS for his severe epilepsy. Pic: William Cherry Press Eye
Jonathan Bell

By Jonathan Bell

Charlotte Caldwell, mum of severely epileptic boy Billy who fought the government to secure life-saving medication, has vented her frustration at the arrangements for administering her son's medication in Northern Ireland, saying they will be effectively under "hospital arrest".

However the Department of Health has said the arrangements have been replicated to what they had in London with the Belfast Trust. And as it's an emergency arrangement, it's understood, work is ongoing to find a long term solution for the family.

The continuing political vacuum in Northern Ireland is also said to be not helping the situation in getting arrangements in place quicker.

The Tyrone family have been battling to secure cannabis oil medication which stops the 12-year-old from suffering seizures.  They have been living in London after battling to have permission granted for the treatment.

Last month a 20-day emergency licence was granted by the Home Office for Billy after he was admitted to hospital in a critical condition having suffered multiple seizures.

They then hit another hurdle when complications arose over getting the medication to Northern Ireland to allow them to return home to Castlederg.

And now they have been frustrated again with Charlotte saying the Department of Health has refused to release the medication, saying it has to be administered twice a day in Belfast - fours hours from their home.

The Belfast Trust has confirmed it will administer the medication this evening and thereafter. It's understood health authorities have put in place the same arrangements which the Caldwell family had during their stay in London.

"Billy has effectively been placed under hospital arrest," said Charlotte.

"The Department of Health in Northern Ireland has refused to release Billy's meds, which have to stay at or near a hospital in Belfast for the duration of Billy's treatment, which is basically for the rest of his life - or until somebody sees sense."

Billy and mum Charlotte are set to return to Northern Ireland on Thursday.

Charlotte continued: "Billy needs his meds at 10am and 8pm each day. It takes a few seconds to administer.

"I know far more about administering his meds than the hospital - I've been doing it for years. It's utterly crazy that Billy is being subjected to this. He's autistic, he needs the familiar, he needs his own bed, his toys, his garden. We just want to be home.

"As it stands, we have to either move to Belfast, or make two four-hour round trips a day from home in Castlederg.

"But we've been into battle once before - and won. We're ready for the next round."

The Department of Health said: "The Department of Health yesterday received an emergency licence application from Belfast Trust clinicians regarding medicinal cannabis use for Billy Caldwell. An emergency licence has today been issued by the Department, replicating the licence issued last month by the Home Office for treatment at Chelsea and Westminster Hospital in London.

"We have also been in discussions with the Home Office to finalise arrangements for the immediate transportation of Billy’s medicine from London to the Belfast Trust."

Belfast Telegraph Digital


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