CANNABIS FIGHT FOR CHARLIE, 2 Parents in court battle for drug to stop tot’s 100 seizures a day
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 Two-year-old Charlie treat seizures from two other Hughes has West syndrome, a types of childhood epilepsy. rare condition that causes up But Charlie has neither of to 100 spasms a day. those conditions.
He has tried seven Matt said: “It’s like different Nhs-funded treatments banging your head against – but parents Matt a wall. It’s critical we get and Alison say none have this under control. shown long-term benefit. “Withdrawing treatment
But a year ago he started that reduces seizures will taking meds containing likely result in further brain THC, the active psychoactive damage and could have lifethreatening substance in cannabis. consequences.
Charlie’s seizures dropped “But the guidelines do to just 10 to 20 a day. not give NHS Trusts the
The medicines, which the confidence to prescribe it.” family have to buy privately, The couple, from cost €1,300 a month. Norwich, Norfolk, tried the Charlie cannot speak or medicines after contacting
Drug cut seizures walk but Matt, 40, said: “He Hannah Deacon, whose started doing things he hadn’t son Alfie Dingley became the first before, laughing and interacting. UK patient to receive a permanent
“It was like seeing our child’s cannabis licence in November 2018. personality for the first time. IT manager Matt said: “Charlie is
“Over time he’s been happier, thriving, he communicates more. more alert. This isn’t a cure, but it’s “But there have been times money about a better quality of life.” was short and we had to discuss
He and Alison, 38, hoped to obtain weaning him off it. It’s a worry.” a funded prescription for the drugs. The parents have crowdfunded
But they were turned down by more than €12,000 to fight the case Cambridge University Hospital NHS at crowdjustice.com/charlie-hughes. Foundation Trust, which guides amy.sharpe@sundaymirror.co.uk 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 cannabisbased 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
Charlie at the park with his mum Alison
Charlie’s life has been transformed since he started on cannabis meds