Dad struggles to afford £1,000 cannabis treatment to keep 5-year-old son alive

A father fears his epileptic five-year-old son will die now because he can’t afford to pay £1,000 a month for life-saving cannabis.

Matt Hughes, from Norwich, has been forced to turn to a private doctor because the NHS would not prescribe medicinal cannabis to try and stop his son’s seizures.

His son Charlie was suffering from 120 seizures a day until medicinal cannabis gave him his life back.

Matt and his wife Ali Hughes paid £1,000 a month for Dutch-made Bedralite before briefly turning to a cheaper replacement.

They have now been told they will have to pay another £1,000 which they can no longer afford.

IT specialist Matt, 43, from Norwich, Norfolk, said: “I feel broken. I didn’t sleep at all.

“We’re just trying to grapple with it and figure out what to do next.

“Within six months of Charlie starting Bedrolite two years ago, there was an 85 percent reduction in Charlie’s seizures.

“His quality of life had changed because of this drug.

“For the first time he was alert, awake, he came back to us.

“He interacted with us in his own way, with conversations and his environment.

“Now his life is in danger because the MHRA won’t allow us to get a cheaper version of the drug.”

At 10 weeks of age, Charlie began having seizures, which quickly turned into almost constant seizures.

After trying seven different medications, going on a keto diet and exploring the option of brain surgery, the Hughes ran out of options until they found medicinal cannabis.

Medicinal cannabis is a broad term used to describe oils, tablets and sprays containing cannabis manufactured by pharmaceutical companies.

After starting with Bedrolite, which costs £1,000 a month, they then switched to a cheaper drug at £600 a month called Celixir20 from Israel.

Earlier this month, the Hughes were told their private doctor will no longer prescribe Celixir20 as the Medicines and Healthcare Products Regulatory Agency (MHRA) forces him to accept full liability for the drug.

This is because Celixir20 is manufactured to Israeli health standards rather than EU standards.

Now the Hughes face the prospect of getting their son off the drug that changed his life because they can no longer afford the more expensive version.

Charlie’s seizures would return, which can damage the brain.

Matt said: “I can’t put into words how it feels. My wife is still struck by how difficult things were before medicinal cannabis.

“Her mental health has been going downhill, she can’t stand it when other kids have seizures or have to go to the hospital.

“Charlie can almost walk, he started school but his studies could end if the seizures wipe his memory.

“Next year he will be back in intensive care if things don’t change.”

The couple have already moved into a bungalow to meet Charlie’s access needs, take out a larger mortgage and pay for private therapy.

Matt said, “There’s so much more to raising a child than just the medicine.

“Thanks to medical cannabis, we’ve both been able to get back to work, which means Charlie can be at school.

“Many families cannot afford respite care or vacations because of the costs involved.”

The Hughes have filed a legal complaint against the National Institute for Health and Care Excellence (NICE) after their NHS clinicians were unable to prescribe cannabis.

According to NICE, there is insufficient evidence to prescribe cannabis-based medication for severe epilepsy.

Following Hughes’ legal challenge, NICE clarified the guidance, adding that there was “no recommendation against the use of cannabis-based medicinal products.”

Matt said: “Doctors are too scared to prescribe.

“The NHS and BPNA should consider a harm reduction approach to prescribing unlicensed cannabis medicines rather than forcing families down other routes.

“As a parent, I feel completely helpless. We are absolutely desperate.”

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