Matt has launched legal action to try and help his son with the treatment (Picture: SWNS)
A dad fears his five-year-old epileptic son will now die because he cannot afford to pay £1,000 a month for lifesaving cannabis.
Matt Hughes, from Norwich, was forced to turn to a private doctor because the NHS wouldn’t prescribe medical cannabis to try and prevent his son’s seizures.
His son Charlie was suffering from 120 seizures a day until medical cannabis gave him his life back.
Matt and his wife Ali Hughes were paying £1,000 a month for Bedralite from Holland before briefly turning to a cheaper substitute.
They have now been told they will have to return to paying £1,000 which they can no longer afford.
Matt Hughes with his son Charlie (Picture: SWNS)
Charlie takes the drug to help with seizures he has on a daily basis (Picture: SWNS)
IT specialist Matt, 43, from Norwich, Norfolk, said: ‘I feel broken. I haven’t slept at all.
‘We’re just trying to get our heads around it and figure out what to do next.
‘Within six months of Charlie starting Bedrolite two years ago, there was an 85 per cent decrease in Charlie’s seizures.
‘His quality of life had transformed on this drug.
‘For the first time he was alert, awake, he was coming back to us.
‘He was interacting with us in his own way, with conversations and his surroundings.
‘Now his life is in danger because the MHRA won’t allow us to get any cheaper version of the drug.’
At 10 weeks old Charlie started spasming, which quickly turned into nearly constant seizures.
After trying seven different medications, a keto diet and exploring the option of brain surgery, the Hughes’ were out of options until they found medical cannabis.
Medical cannabis is a broad term used to describe oils, tablets and sprays that include cannabis and are made by pharmaceutical companies.
Having started on Bedrolite which costs £1,000 per month, they then switched to a cheaper medication for £600 a month called Celixir20 from Israel.
At the start of this month the Hughes’ were told their private physician will no longer prescribe Celixir20 due to the Medicines and Healthcare products Regulatory Agency (MHRA) forcing him to take full liability for the drug.
This is because Celixir20 is made to Israel’s health standards rather than EU.
Now the Hughes’ are faced with the prospect of taking their son off the drug which has transformed his life because they can no longer afford the more expensive version.
Charlie was diagnosed with infantile spasms which is a catastrophic form of epilepsy (Picture: SWNS)
Charlie has around 120 seizures a day when he doesn’t take the drug (Picture: SWNS)
Charlie’s seizures would return which can cause damage to the brain.
Matt said: ‘I cannot put into words how it feels. My wife is still impacted by how difficult things used to be before medical cannabis.
‘Her mental health went downhill, she can’t stand seeing other children have seizures or go into hospitals.
‘Charlie is nearly walking, he’s started school but his learning could end as the seizures wipe his memory.
‘Next year he will be back in intensive care if things don’t change.’
The couple has already moved into a bungalow to help with Charlie’s access needs, getting a bigger mortgage and paying for private therapies.
Matt said: ‘There’s so much more to raising a child than just the medicine.
‘We have both been able to return to work thanks to the medical cannabis meaning Charlie can be in school.
‘Many families can’t afford respite care or holidays because of the costs involved.’
The Hughes’ launched a legal challenge against the National Institute for Health and Care Excellence (NICE) after their NHS clinicians were unable to prescribe cannabis.
According to NICE, there is not enough evidence to prescribe cannabis-based medicines for severe epilepsy.
After the Hughes’ legal challenge, NICE clarified the guidance to add there was ‘no recommendation against the use of cannabis-based medical products’.
Matt said: ‘Doctors are too scared to prescribe.
‘The NHS and BPNA should be considering a harm reduction approach to prescribing unlicensed cannabis medicines rather than forcing families to other routes.
‘As a parent I feel completely helpless. We are in absolute despair.’
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