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Norwich family forced to pay nearly £500 a week for medicinal cannabis for sick toddler

PUBLISHED: 11:58 04 July 2019 | UPDATED: 13:15 04 July 2019

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

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

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A Norwich family is having to fork out more than £400 a week for medicinal cannabis to stop their son having up to 100 seizures a day.

Little Charlie Hughes, who turns two next week, was diagnosed with West syndrome, or infantile spasms, at just 10 weeks old.

The condition is a severe type of epilepsy which affects just 400 children in the UK, and it means Charlie can have between 50 and 100 seizures a day. Since he has been taking doses of CBD oil every day, this has dropped to around 20 and the toddler - whose development was stuck at that of a six-month-old, has taken massive strides.

But because the drug is not available on the NHS - despite a change in the law last year to make it legal - parents Matt and Ali Hughes are having to pay £466 a week for a private prescription, and that could double as Charlie's dose increases.

"It's made in Holland," Mr Hughes, 39, said. "If I was to go direct to Holland it's £160 per bottle, here it's £466 per bottle. Ideally it would be available on the NHS. But I've had a letter from Cambridge University Hospitals saying they are not commissioned to provide medicinal cannabis. He cannot have it on the NHS."

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

Mr Hughes said while the CBD oil had not eradicated Charlie's seizures it had reduced them dramatically. He said: "Some days he has three, some days he has 20, but it's also less intense. But the best change we've seen is his development. He's started doing things he hasn't done before, like holding his bottle when we give him his milk, or he was sitting next to me and he started grabbing food off my plate. They're little things but they're massive for Charlie."

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But the couple now fear, as they rapidly burn through their savings, that Charlie will soon regress when they can no longer afford the private prescription. Mr Hughes said: "We're doing all we can, even with fundraising we should not have to rely on the public."

An NHS England spokesman said: "As with any new medicine where there is a need to build the evidence base, the NHS's normal medicines governance systems apply and are being used to support good clinical practice and safe and effective prescribing for patients whilst the evidence base continues to be developed."

Charlie Hughes, 19-months-old, who has infantile spasms. Picture: DENISE BRADLEYCharlie Hughes, 19-months-old, who has infantile spasms. Picture: DENISE BRADLEY

- To donate to fund Charlie's prescription, visit bit.ly/CharlieHughes

Charlie's plight was used as an example in the House of Commons on Wednesday by North Norfolk MP Sir Norman Lamb.

During a debate on the Misuse of Drugs Act Sir Norman said that, to reduce harm, the government should "inevitably explore what they have done in Canada by ending the ludicrous prohibition on cannabis".

He added, referring to Charlie: "A family in Norwich have just had to spend well over £1,000 on a private prescription for their young son who has epilepsy.

"They will not as a family be able to afford more than a few weeks' worth of paying for this privately. It is ludicrous that that family, desperately in need of help for their young boy, cannot get it through the NHS; I think there have been only three prescriptions so far under the NHS."

Sir Norman has repeatedly campaigned for the legalisation and regulation of cannabis.

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