ANGRY, frustrated and heartbroken is how Castlederg mother, Charlotte Caldwell, yesterday described the fact that she is back fighting to save the life of her 13-year-old son who is once again at the centre of the medicinal cannabis debate.
To this end she and her supporters have organised a demonstration this Saturday at St Anne's Cathedral in Belfast city centre to highlight their plight.
Last year it seemed that the ongoing battle to secure long-term treatment for Billy Caldwell and his fight with severe and life-threatening epilepsy was gaining a new momentum.
Now, however, a new obstacle has emerged which Mrs Caldwell has described as "orchestrated cruelty and discrimination" against Billy.
It is understood that Billy has only days of his medicinal cannabis left, which he has been using for months to contain his condition. However, according to Mrs Caldwell, Billy needs urgent access to medicinal cannabis via an NHS prescription which, she says, needs to be reinstated immediately for him to access a new supply.
However, it’s being denied because of a strict interpretation of the British Paediatric Neurology Association (BPNA) guidelines that were issued last November.
Mrs Caldwell has challenged Michael McBride, chief medical officer Northern Ireland; Richard Pengelly, permanent secretary Department of Health, Northern Ireland, the Belfast Trust and Matt Hancock MP, the Secretary of State for Health and Social Care - one of the latest Tory MPs to announce that he is running to succeed Theresa May as Prime Minister - to respond to her plea for help.
"Billy is thriving and accomplishing so much at the moment thanks to the medicinal cannabis, but now his doctor in Belfast is refusing to reinstate his medicinal treatment, even though it had already been in approved in June last year," she said.
"They are saying that it is because of new BPNA guidelines issued last November which stated because there were no clinical trials to support prescribing medicinal cannabis to a child with epilepsy and it could not be permitted. However, it also states very clearly that if a doctor can justify a clinical need, they can write the prescription. Billy's doctor already justified this by writing a prescription for him last July so he falls into the latter category."
Mrs Caldwell said she was particularly angry at the Belfast Trust for its U-turn in this matter.
"This nightmare is not acceptable any longer for anyone. Is this a complete and utter shambles - or orchestrated cruelty against the boy who changed the law? Belfast Trust has the responsibility of providing care and medicine to Billy, they are failing him. In doing so, they fail all of us who desperately need life changing and life saving medicinal cannabis through an NHS prescription.
"Belfast [Trust] continue to prescribe, provide and fund a medicinal cannabis prescription to another family in Northern Ireland, yet point blankly refuse to reinstate Billy’s NHS prescription which he so rightly deserves. NHS England also continue to prescribe, provide and fund a medicinal cannabis prescription to another family so why has Billy to be the exception to their rules?
Mrs Caldwell took her son to Canada to get fully assessed last year after no expert was available in Belfast to help him. It is understood the Trust has issues with the July prescription.
"Bill had started puberty and seizures started to break through again, so I took him to Canada last October. The report was furnished to the Trust in Belfast, but the next day I got a call saying Belfast would not support Billy's NHS prescription so we had to stay in Canada for four months.
"In the meantime I e-mailed and rang every doctor I could to prescribe for Billy and after four months one finally responded so we came home on February 11. Billy has been on the new medication and was doing very well, but now that the repeat prescription has been refused by the NHS we have nowhere left to go."
She added she had also received expert advice from a world-ranking expert in paediatric neurology at the Great Ormond Street Hospital for Children in London, Professor Helen Cross MBChB, PhD, FRCPCH FRCP, who, she said, was very supportive.
"She wrote to Belfast asking them to reinstate Billy's treatment pointing out the fact he had been this medication for the past two-and-a-half years. She even volunteered to take part in his care and management. But to date Belfast has still done nothing to help.
"I am angry, frustrated and heartbroken. It seems to be orchestrated cruelty and discrimination. We have tried everything, there is nothing else left to keep him alive. We have to remember Billy is one of the most vulnerable children in our society. Failure is not an option, he needs this life-saving medicine. If I fail the consequences of what could happen don't bear thinking about," she said.
A spokesman for the Belfast Trust said the Trust remained committed to ensuring the appropriate care for the 13-year-old.
“As previously stated by the Department of Health medicinal cannabis was approved in Billy’s case last year and provided to him by the health service, however, an alternative unlicensed cannabis based product was sourced on a private basis by Ms Caldwell. The Trust remains committed to ensuring the appropriate care for Billy. Discussions remain ongoing,” he said.