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Epileptic boy's mum tells of fear over drug supply


Charlotte Caldwell with her son Billy, who suffers from severe epilepsy

Charlotte Caldwell with her son Billy, who suffers from severe epilepsy

Charlotte Caldwell with her son Billy, who suffers from severe epilepsy

A mother locked in a legal battle to secure a medicinal cannabis prescription for her severely epileptic son is "on a cliff edge" waiting for privately-sourced treatment to run out, she claimed yesterday.

Charlotte Caldwell expressed fears that current arrangements where the medication is "gifted" on a week-by-week basis will be ended.

The Co Tyrone woman is seeking confirmation from the High Court in Belfast that cannabis can be prescribed to her 14-year-old son Billy on the NHS.

Proceedings were adjourned yesterday for a letter on that issue to be sent to an expert in paediatric neurology at Great Ormond Street Children's Hospital in London. Outside court Mrs Caldwell said: "We're standing on the edge of a cliff, we know that the rock is going to give way, but we just don't know when. We're at the mercy of the manufacturer who is gifting us this medicine, we're at the mercy of the court, and we're at the mercy of these doctors."

Although Billy is currently receiving a product from a North American company free of charge, there are no guarantees over how long that arrangement will continue.

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.

Despite the new guidelines, access to medication remains uncertain.

Mrs Caldwell brought a case against the Health and Social Care Board over an alleged failure to take a decision on the Canadian-sourced treatment.

She wants 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.

In court yesterday her barrister Monye Anyadike-Danes QC said: "My client's greatest fear is something slips between the cracks and Billy runs out of his medication."

Counsel for the Board said it cannot fund a private prescription, but stressed it will do as much as possible to help Mrs Caldwell.

Adjourning the case to next month, Mrs Justice Keegan urged both sides to work together in an effort to find a solution.

Belfast Telegraph