Parents of epileptic toddler seek to encourage NHS prescription of cannabis

Matt and Ali Hughes are seeking to have cannabis-based medicinal products more widely prescribed on NHS.

Matt and Ali Hughes are seeking to have cannabis-based medicinal products more widely prescribed on NHS. - Credit: Denise Bradley

Parents of a three-year-old boy with severe epilepsy are in negotiations to settle a challenge to guidelines that they hope will encourage prescription of cannabis on the NHS.

Charlie Hughes was diagnosed with West Syndrome - a rare epileptic condition which causes him to suffer up to 120 seizures a day - when he was just 10 weeks old.

Charlie Hughes, 21-months-old, who has infantile spasms. Picture: DENISE BRADLEY

Charlie Hughes was diagnosed with West Syndrome - a rare epileptic condition which caused him to suffer up to 120 seizures a day. - Credit: Copyright: Archant 2019

After obtaining a private prescription for cannabis oil his parents, Matt and Alison, say his seizures have fallen to fewer than 20 a day and his development has improved.

Although cannabis-based medicinal products were made legal at the end of 2018, for patients who cannot be helped by other available drugs, almost no NHS prescriptions have been handed out.

The family, from Thorpe St Andrew, have been mounting the first legal challenge to National Institute for Health and Care Excellence (NICE) guidelines on prescribing cannabis on the NHS.

Charlie Hughes before he began taking cannabis-based medicinal products. Picture: The Hughes Family.

Charlie Hughes before he began taking cannabis-based medicinal products. Picture: The Hughes Family. - Credit: Archant

A High Court judge granted an application for a judicial review of the NICE guidance, however the family’s bid to prove the current guidance is unlawful has been delayed due to the pandemic. 


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Mr Hughes said they were now in discussions with NICE to settle the case without going to judicial review but still hope it will set a precedent.

Ali and Matt Hughes, and their 19-month-old son Charlie who has infantile spasms. Picture: DENISE BR

After obtaining a private prescription for cannabis oil his parents, Matt and Alison, say Charlie's seizures have fallen to fewer than 20 a day. - Credit: Copyright: Archant 2019

The guidelines do not recommend against cannabis medication, but the lack of a "positive" recommendation has deterred NHS doctors from prescribing it.

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“Hopefully we can say to clinicians NICE isn’t a block. You can prescribe it. It is down to the individual doctor to decide,” he said.

Charlie had been given six different anti-epileptic drugs prior to cannabis oil but the family saw no improvement in his condition.

“His condition has improved but it’s not a cure, so it is about maintaining that quality of life; the balance between seizure control and the side effects,” said Mr Hughes, who now runs a charity called MedCan Support.

NHS doctors accept that Charlie Hughes' condition has improved significantly since he started taking

NHS doctors accept that Charlie Hughes' condition has improved significantly since he started taking cannabis-based medicinal products. Picture: The Hughes Family. - Credit: Archant

“It supports parents all over the world now and we are working Canadian researchers as well as American and UK doctors, and The Medical Cannabis Clinicians Society and there is a wealth of evidence. 

“There are over 40 children in the UK that are seeing significant improvements through using cannabis for conditions like Charlie’s. He is not a one off.”

NICE has said that with few large-scale trials evidence for the effectiveness of cannabis-based medicines is so unproven and evidence on its safety limited.

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