Billy Caldwell's mum says Karen Bradley leaked notes 'show we were misled'
The Northern Ireland Office's mistaken leak of briefing notes for Secretary of State Karen Bradley demonstrated the Caldwell family had been "misled," Billy's mum Charlotte claimed.
Billy Caldwell, from Castlederg, was discharged from hospital on Monday afternoon. The 12-year-old was using prescribed cannabis oil to treat epileptic seizures until the Home Office blocked its prescription.
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Mum Charlotte tried to bring the medication into Heathrow Airport in a last-ditch effort to treat her 12-year-old son Billy, but it was removed by border officials.
On Friday Billy's condition deteriorated and he was rushed to hospital.
After a week-long struggle, Home Secretary Sajid Javid used "an exceptional power" on Saturday to return one of the seven bottles of medication.
On Monday Ms Caldwell said her son's health had improved "vastly" and he had not suffered any seizures once he resumed his treatment. She has demanded urgent meetings with the Home Secretary and Health Secretary Jeremy Hunt to ensure there is a review of the law and she is not faced with another agonising wait once again to get her son's life-saving medication.
In a statement outside Chelsea and Westminster Hospital she said she had read Northern Ireland Secretary Karen Bradley's briefing notes which had been mistakenly been distributed to the Press by an NIO official.
"It is apparent that I have been misled from the moment my Billy's anti epileptic medication was confiscated at Heathrow Airport exactly a week ago today," she said.
"Those notes revealed that the responsibility for the decision on the import of unlicensed meds is the responsibility of the Home Office.
"Two hours after those drugs were confiscated I was invited to meet with Home Office Minister Nick Hurd and five of his officials.
"They first suggested that this was a matter for the devolved assembly in Northern Ireland, then they advised me to make a formal application for a licence for Billy's meds. I asked how long it would take, how much would it cost, and whether anybody else had been successful in making an application?
"They did not know the answers to any of those questions."
Charlotte said how she was then advised to contact three paediatric neurologists based in London to make an appointment. However, despite numerous calls and emails only one returned to say he was too busy.
Charlotte said her son's "life-threatening" condition "panicked" the government into action over the weekend.
"That he has been discharged and is with me now is testament to the effectiveness of the treatment, and underlines just how vital it is that every child and every family affected should have immediate access to the very same medication," she added.
On her demands for a meeting with government ministers, she added: "I will demand that henceforth the Health Department NOT the Home Office takes responsibility for providing access to medicine for these incredibly sick children.
"This meeting must take place within 24 hours. Children are suffering beyond imagination."
The Home Office has been asked for a response.
- Review of law on medical use of cannabis oil must be swift, says Jeremy Hunt
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Belfast Telegraph Digital