Mother’s ‘torturous’ battle for medicinal cannabis funding for son Billy Caldwell
A Co Tyrone mother battling to secure public funding for her severely epileptic and autistic son’s medicinal cannabis prescriptions, has described the ongoing legal proceedings and uncertainty as “torturous”.
Charlotte Caldwell is renowned for having fought – and won – a battle two years ago against the Home Office’s ban on bringing medicinal cannabis into the UK, to help treat her then 13-year-old son Billy, who was having up to 300 seizures a day.
But the Castlederg woman has revealed that despite this major breakthrough, and the establishment of ‘Billy’s Law’, which legalised the prescription of cannabis by specialists in certain circumstances, health authorities in Northern Ireland still haven’t confirmed they will fund his prescription.
Ms Caldwell said: “From November 2018 until June 2020 the Canadian company supplying the medicine, Aurora, covered all the costs associated with the importation and administration of the prescription. Since June the funding of the prescription has been made under the terms of an Interim Order issued by the High Court.”
But she added: “Aurora is a commercial business, it’s not a charity and they have been gifting Billy his medicine for 15 months. Aurora stated quite clearly to the Health and Social Care Board and the Belfast Trust 15 months ago that it was not their responsibility to provide Billy with his medicine for his care. It is the responsibility of the Health and Social Care Board and the Belfast Trust.”
Ms Caldwell initiated legal proceedings against the Belfast Health and Social Care Trust and the Health and Social Care Board in June 2019 to secure public funding of Billy’s medicine, as she said the costs associated were beyond her means.
“For me and for Billy it’s been the most torturous ordeal that any family can go through.”
Last month Billy’s case was referred to RECAS- the Refractory Epilepsy Specialist Clinical Advisory Service - a panel of leading paediatric neurologists convened by Secretary of State Matt Hancock, and led by one of the most eminent neurologist from Great Ormond Street Hospital in London, to advise doctors who wish to prescribe medical cannabis and other new treatment. Ms Caldwell said the panel has recommended Billy’s current medicine be continued.
She said: “I am beyond grateful to Matt Hancock and the government for setting this (RECAS) up. It’s what I have tirelessly campaigned for and Billy’s court case actually initiated it.”
Ms Caldwell said she is now calling for NI Health Minister Robin Swann to put in place a shared care plan for Billy and provide “formal confirmation” the Health and Social Care Board will fund his medical cannabis prescription.
“I am calling for him to implement this urgently and stop this torturous suffering of Billy who is one of the most vulnerable of our society.”
Ms Caldwell said her son is doing “incredibly well” on the medicinal cannabis, but prior to the treatment he was having hundreds of seizures a day.
“I have lost count of the number of nights I lay awake until the sun came up praying to God that if I fell asleep I wouldn’t wake up to find my little boy cold and blue beside me. Praying that the angels hadn’t come and taken him from me.“
She said on the medicinal cannabis, Billy has had ‘‘zero’’ seizures and “gets to be a child for months and months” at a time.
“He gets to live, he gets to laugh and he gets to love. Billy is not just surviving, he is now thriving.
“From the bottom of my heart I want to thank Professor Helen Cross at Great Ormond Street Hospital, Billy’s physician, and his GP for all their personal and professional support. They have given me back my right as a mummy to hope, but most importantly those three doctors have given Billy back his right to life and I am eternally grateful to them.”
A spokesperson for the Department of Health said: “The Department has been advised that as legal proceedings are still ongoing in this case it would not be appropriate for the Minister to comment.”
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