Parents of a boy with epilepsy who want him to be prescribed medical cannabis say they have been given “false hope” by the system to apply for it.
Rachel Rankmore and Craig Williams, from Cardiff, believe it may help control their son Bailey’s seizures.
They said the 16-year-old’s consultant would not apply for medical cannabis on his behalf.
Cardiff and Vale University Health board said: “We always act in the best interests of patients.”
The UK home secretary said specialist doctors could prescribe cannabis-based medicines legally from the autumn and until then, consultants can apply to an expert panel.
Bailey’s family asked his consultant to apply to the panel but were turned down.
A spokeswoman said the health board would welcome the chance to speak to the family about Bailey’s treatment.
Mr Williams said: “We so desperately want the medicinal cannabis. It could alleviate some of his pain. He could be the kid you see on TV riding a bike, or out the front with his mates but he’s not.
“He’s giving up and we’re losing that lovely spirit he’s got. He’s fought for 14-and-a-half years and he’s fought really hard. We’ve always said to him ‘don’t give up’. We’re not giving up.”
Bailey started having seizures when he was two and they became more frequent as he got older.
He takes six different types of medication to control them.
“We’d gone from watching a bundle of joy full of life, to someone who’d just sit on a settee, doing nothing. He couldn’t even interact with the TV programme,” said Mr Williams.
Bailey’s parents previously gave their son the legal cannabinoid CBD – costing £290 per bottle – and said it improved his quality of life.
Cannabis is classed as a schedule 1 drug, meaning it is judged to have no therapeutic value.
The Home Office decision should put certain cannabis-derived products into schedule 2, with a potential medical use.
Director of campaign group End Our Pain, Peter Carroll, said a “massive cultural change” was needed in how the medical profession is briefed and trained about medical cannabis.
The UK Government said: “We completely sympathise with the families who have been facing desperate situations as they try to find treatment.
“Any proposed course of treatment with cannabis-based medicine must be clinically led.”
The Welsh Government said, subject to the necessary legislation being approved by the UK Parliament, cannabis-derived medicine would be available for clinicians in Wales to prescribe.
“We need to work together and get this sorted because we want our children’s lives back,” said Ms Rankmore.