Caldwell family claim Trust let them down on cannabis medicine
The Home Office expert panel which is considering applications for medicinal cannabis licences was not given enough information to grant one to a Co Tyrone boy with severe epilepsy, it has been claimed.
The family of Billy Caldwell, the epileptic Castlederg boy at the centre of a campaign to see cannabis oil licensed for medical use, claimed the Belfast Health Trust - which is making the application - had failed to give the expert panel in London sufficient information to enable it to grant a licence for the 12-year-old to use the drug.
"Last Thursday, the Home Office Expert Panel met to consider applications for medicinal cannabis licences - but did not it now seems consider an application for Billy Caldwell," a spokesman for the Caldwell family said in a statement yesterday.
He added: "It's not just that the application appears not to have been considered, but the evasiveness of senior hospital staff when asked simple questions about the process is most troubling. The panel itself was announced 48 hours after Billy's confiscated medicine was returned by order of the Home Secretary.
"There could hardly be a more high-profile case and yet still crucial deadlines were missed, despite written and face-to-face commitments being made by Belfast Trust."
Last night a spokeswoman for the Belfast Trust said Billy was continuing to receive his medication.
"The application for a licence for the medical use of cannabis-derived products for Billy Caldwell is still being considered by an expert panel," she said.
"Until we receive a recommendation from the expert panel, Billy will continue to receive his medication under the current arrangements.
She added: "The Trust remains committed to working with Billy's family to ensure he receives appropriate care while the application is being considered."
It's understood that the Home Office expert panel is to consider Billy's case again this afternoon.
"We just hope the weekend's promises are honoured and that Billy has a licence within days," the family spokesperson said.
"But this experience has only made (Billy's mother) Charlotte more determined to continue to campaign for all families and patients who urgently require access to cannabis-based medicines.
On Saturday, Sophia Gibson (7) from Newtownards became the first person to be granted a long-term licence for the use of medicinal cannabis in the UK under the new expert panel system.
She has a genetic condition which causes what her family describe as "frequent and dangerous fits".
The little girl has Dravet Syndrome, a severe form of epilepsy.
Her mum Danielle described the decision as "life saving" and said cannabis oil relieves the symptoms of her daughter's condition - and could drastically reduce the number of seizures she endures.
"This decision is a life changer and a life saver for Sophia," she said.
"But no family should have to fight this hard, for so long, for something that so obviously has a benefit.
"The fight has been exhausting but the relief is immense."
The Home Office is already reviewing the £3,655 cost of medicinal cannabis licences, after it emerged that the new panel to provide patients with access to the schedule 1 drug had received almost no applications.
It has been reported that fewer than five applications have so far been received, as patients have cast doubt on whether the panel is fit for purpose.