The boy who changed the law on medical cannabis, Billy Caldwell from Northern Ireland, has been referred to a new UK-wide forum for children with refractory epilepsy.
RESCAS, the Refractory Epilepsy Specialist Clinical Advisory Service, provides a forum for the discussion of difficult epilepsy cases that have presented diagnostic and/or management difficulties and have proven refractory to treatment.
The development comes as another landmark change for the British approach to medical cannabis, which the Caldwell family has been at the epicentre of for years.
Billy, with the unwavering support of his mother Charlotte, set the pace for legalisation of medical cannabis from 2016, culminating in the then Home Secretary Sajid Javid giving the green light to legalisation on medical grounds in November 2018.
Announcing the news on the facebook page, Keep Billy Alive, proud mum Charlotte said:
“So excited to be able to tell you all following Billy’s reasonat consultation with Professor Helen Cross – GOSH [Great Ormond Street Hosptial] I have been notified – Billy’s case has been referred to RESCAS .
“This new service is a UK wide forum for children with refractory epilepsy to be assessed for Medical Cannabis and other treatment options. A UK first.”
Earlier in July 2020, Billy’s legal case had been granted a high court hearing at Belfast Crown Court scheduled for September 7. At the hearing, a judge could decide whether or not the NHS should cover the cost of Billy’s medical cannabis prescriptions, which he depends upon for any quality of life, according to mum Charlotte. This court hearing may still go ahead, should the outcome of any RESCAS decision be deemed unsuitable by the family’s legal representation.
Meanwhile, Charlotte has expressed her pride and delight of her son.
“I am SO SO proud of Billy.
“I would like to take this opportunity to thank Professor Helen Cross for her personal and professional support .
“This should now give new hope to many children like Billy.
“It is beyond valuable to me to know that as long as Billy gets his cannabis oil every day he will be safe. He won’t have a seizure.
“It’s actually a very amazing feeling.
“It feels like a safety blanket. When you have a child that has seizures so bad that they can take his life from him – that feeling is absolutely incomparable to anything else.
“Months and months at a time that he just gets to be a CHILD.
“It is everything.
“So many people have come together to form an awesome community surrounding this little boy and it’s absolutely amazing to see how cared for Billy is – and how much support, encouragement and love you have given us throughout the years.”
What is RESCAS?
The new national Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS) is made up of a network of UK-based paediatric neurology specialists.
The service provides a forum for the discussion of difficult epilepsy cases that have presented diagnostic and/or management difficulties and have proven refractory to treatment.
RESCAS is hosted at Great Ormond Street Hospital NHS Foundation Trust (GOSH) but is jointly run with paediatric neurologists from throughout the UK. The service has been commissioned by NHS England and is supported by NHS Scotland, NHS Wales, and Health and Social Care Northern Ireland.