Parents of young boy with epilepsy drop their legal challenge

Ali and Matt Hughes worry that they are going to run out of money if they are forced to keep buying

Ali and Matt Hughes have dropped a legal challenge after guidelines on prescribing cannabis, used to treat their three-year-old boy Charlie, were clarified. - Credit: Copyright: Archant 2019

The father of a young boy with severe epilepsy said a clarification on prescribing cannabis-based medicines for his son was "a good step forward".

Three-year-old Charlie Hughes was diagnosed with West Syndrome - a rare epileptic condition which causes him to suffer up to 100 spasms a day - when he was just 10 weeks old.

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

Scans confirmed there was significantly reduced epileptic activity in his brain due to the use of cannabis-based medicinal products .

Charlie's parents, Matt and Alison, from Thorpe St Andrew, have been buying the products through a private UK prescription which is legally imported from Holland.

It came after doctors confirmed any treatment that reduces the number of seizures would lessen the damage caused to Charlie's brain.

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

But the NHS Trust in charge of Charlie's care said guidelines from the National Institute for Health and Care Excellence (NICE) on medical cannabis prevent them from prescribing the drugs.

It prompted the family to launch a legal challenge which was to go to the high court later this year but NICE has since moved to issue further guidance.


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A clarification to the guidance means specialist clinicians can prescribe medicinal cannabis where appropriate,resulting in the family dropping the legal challenge.

Charlie's father Matt, 41, said they dropped the challenge as they agreed with the clarification.

He said: “It’s a good step and a real positive step going forward, but there’s still more challenges to come.
“There’s still more to be done.”

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He said they were working with all the medical agencies and legal teams to try and take that forward.

The clarification from NICE states: "The fact that NICE made no such population-wide recommendation should not… be interpreted by healthcare professionals as meaning that they are prevented from considering the use of unlicensed cannabis-based medicinal products where that is clinically appropriate in an individual case.

"There is no recommendation against the use of cannabis based medical products."

Dr Paul Chrisp, director of the Centre for Guidelines at NICE, said: "NICE has published a clarification to our 2019 guideline on cannabis-based medicinal products relating to the treatment of severe-treatment resistant epilepsy in children.

"This clarification does not represent a change in our guideline, but both the clarification and the guideline should be taken into account by specialists when making a clinical judgement on prescribing medical cannabis."


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