Billy Caldwell: Co Tyrone boy's mother says ongoing uncertainty over access to medication is 'like orchestrated cruelty'

Co Tyrone woman Charlotte Caldwell and her 13-year-old son Billy were at the High Court today as part of her attempts to clarify the law around the treatment.

Proceedings were brought amid fears that he is about to run out of a privately-sourced medication.

The case was adjourned, however, after it emerged that a Professor in Paediatric Neurology at Great Ormond Street Children's Hospital in London who backed its use for Billy is to carry out a fresh assessment on Friday.

A judge was also told draft guidance is due to reach a UK Health Minister by the end of the week.

Counsel for the family said the developments raised the possibility of a "third way" which could help to deal with the legal issues.

Outside court Mrs Caldwell, who campaigned for a change in the rules over medicinal cannabis, gave a guarded response.

"I'm cautiously optimistic that Billy's future care will be secured," she said.

But with no guarantees on how long a North American manufacturer will continue providing medication, his current supply runs out on July 5.

Mrs Caldwell insisted that she just wants to her son's NHS prescription reinstated.

"We have exhausted every avenue, and I just find it completely and utterly tortuous because at the end of the day this is a little boy's life-saving medication," she added.

"For me it's like orchestrated cruelty. Somebody, somewhere has made a decision not to prescribe Billy his life-saving medication.

"It's not a computer making the decision, it's a human being - probably a mother or father doing it."

In November last year the rules were relaxed to allow some cannabis-derived medicines to be prescribed to patients in the UK by specialist doctors in limited circumstances.

It followed the high-profile case of Billy Caldwell, whose mother had cannabis oil brought back from Canada confiscated at London's Heathrow Airport.

The boy was then admitted to hospital after suffering seizures.

Despite the new guidelines, access to medication remains uncertain.

Mrs Caldwell has issued judicial review proceedings against the Health and Social Care Board over an alleged failure to take a decision on a Canadian-sourced treatment.

She is seeking a declaration that a Northern Ireland-based GP or clinician who is not on the specialist register can lawfully write prescriptions for cannabis-based medication under the direction of a consultant paediatrician with higher qualifications in epilepsy diagnosis and management.

Mrs Caldwell also wants an assurance from the court that she can lawfully administer the drug to her son.

Issues around the level of clinical data and evidence on the product's effectiveness are expected to feature.

Billy is currently receiving a medication following a private prescription provided by a consultant in the UK.

But papers in the case state that the supply is due to run out next month, with Mrs Caldwell unable to afford more.

Her legal representatives, KRW Law, claim Billy could suffer further seizures within 12 hours if his medication expires without a replacement.

Listing the case for a further hearing next week, Mr Justice McCloskey said the professor due to carry out a fresh assessment must be given enough time to prepare a report.