The parents of a toddler with life-threatening epilepsy are fighting a landmark legal battle so he can be given medicinal cannabis on the NHS.
Two-year-old Charlie Hughes has West syndrome, a rare condition that causes up to 100 spasms a day.
He has tried seven different NHS-funded treatments – but parents Matt and Alison say none have shown long-term benefit.
But a year ago he started taking meds containing THC, the active psychoactive substance in cannabis.
Charlie’s seizures dropped to just 10 to 20 a day.
The medicines, which the family have to buy privately, cost £1, 200 a month.
Charlie cannot speak or walk but Matt, 40, said: “He started doing things he hadn’t before, laughing and interacting.
“It was like seeing our child’s personality for the first time.
“Over time he’s been happier, more alert. This isn’t a cure, but it’s about a better quality of life.”
He and Alison, 38, hoped to obtain a funded prescription for the drugs.
But they were turned down by Cambridge University Hospital NHS Foundation Trust, which guides other local Trusts on epilepsy issues.
The Trust says guidelines from NICE – the National Institute for Health and Care Excellence – stop them from prescribing the drugs.
But NICE claims it does not prevent doctors making prescriptions where clinically appropriate.
The couple have sought a judicial review in the High Court to make the law clear.
If successful, it could pave the way for thousands of severely epileptic children across the UK to apply for funded cannabis-based medicinal products.
Their lawyer, Nusrat Zar, of Herbert Smith Freehills, said: “We will ask the court to rule that the refusal to offer the drug is unlawful.
“Legally, a decision doesn’t oblige the hospital to give the drug. But public bodies like the NHS are good in taking on board such decisions.”
Charlie began taking Bedrolite and Bedica last May. The drugs are made in Holland. Doctors reported “significant improvement” in his symptoms, with brain scans showing reduced epileptic activity.
NICE recommends only one product, licensed in the UK to treat seizures from two other types of childhood epilepsy.
But Charlie has neither of those conditions.
Matt said: “It’s like banging your head against a wall. It’s critical we get this under control.
“Withdrawing treatment that reduces seizures will likely result in further brain damage and could have life-threatening consequences.
“But the guidelines do not give NHS Trusts the confidence to prescribe it.”
The couple, from Norwich, Norfolk, tried the medicines after contacting Hannah Deacon, whose son Alfie Dingley became the first UK patient to receive a permanent cannabis licence in November 2018.
IT manager Matt said: “Charlie is thriving, he communicates more.
“But there have been times money was short and we had to discuss weaning him off it. It’s a worry.”
The parents have crowdfunded more than £11,000 to fight the case at crowdjustice.com/charlie-hughes.