Belfast Telegraph

Billy Caldwell faces new US trip because NHS broke scan promise, says mum

By Cate McCurry

A Co Tyrone mother and her seriously ill son look set to be forced to travel back to America for urgent treatment that Northern Ireland doctors promised would be delivered by the NHS.

Eleven-year-old Billy Caldwell, from Castlederg, suffers from a rare, life-threatening form of epilepsy that has seen him endure daily seizures that turn him blue and do not stop unless he immediately gets medication and wears an oxygen mask.

He was prescribed medicinal cannabis on the NHS in what is understood to be the first treatment of its kind in the UK for his severe form of epilepsy.

The youngster and his mother, Charlotte, had been travelling to the US for the medication.

They returned home in February after doctors at the Royal Victoria Hospital in Belfast assured the family they would deliver Billy’s care plan.

This included a prescription for medicinal marijuana and a brain scan with the option of surgery.

While Billy now has access to cannabis oil through his GP, mum Charlotte, who is also her son’s full-time carer, said the hospital had failed to carry out an urgent brain scan.

The pair are now being forced to return to Los Angeles this Friday, which will cost hundreds of thousands of pounds.

“The medicinal cannabis has held Billy’s seizures at bay for the last 94 days, but he has a lesion on the left temporal lobe and that has to be addressed as it’s the root of his seizures,” said Billy’s mother.

“Now that he is seizure-free, his brain activity has calmed down, which will give doctors a clearer picture of his lesion.

“A scan will show whether it has shrunk and then they will decide if they can do laser surgery, which will be a less invasive form of brain surgery. If it hasn’t shrunk, they would have to remove the lesion and the left temporal lobe, which I wouldn’t want to happen as he would lose his memory and speech.

“He needs this brain scan now. He can’t wait on the chance that he can take another seizure at any minute which could kill him. It’s torture.”

The lesion brought back Billy’s seizures after eight years in remission, while the cannabis oil is helping to reduce the damage.  Despite assurances by doctors  in March that he would undergo a brain scan in Belfast, Charlotte said that time had run out and her desperate calls for help had not been answered.

“I’m forced to travel more than  6,000 miles and pay for care in America that’s available on the NHS and that was promised to us,” she added.

“This is a scandal what they (the Belfast Trust) are doing to my son and the financial burden they have placed on me, a single mother who is fighting this to try and keep him alive. They have left him to die.”

A spokesperson for the Belfast Trust said: “Belfast Trust’s clinical team in Royal Belfast Hospital for Sick Children will continue to work closely with the Caldwell family to provide the best possible care for Billy.

“However, in the best interests of patients, we cannot discuss an individual’s care or treatment.”

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