A devoted father fears his five-year-old son will die because he can’t afford £1,000 a month for life-saving cannabis.
Matt Hughes was forced to see a private doctor because the NHS refused to prescribe medical cannabis to try to prevent his epileptic son from having seizures.
Little Charlie suffered 120 seizures a day until medical cannabis brought him back to life.
Matt and his wife Ali were paying £1,000 a month for Bedrolite from Holland before briefly resorting to a cheaper substitute.
But now they have been told they will have to pay £1,000 again, which they can no longer afford.
IT specialist Matt, 43, from Norwich, Norfolk, said: “I feel broken. I have not slept at all.
“We’re just trying to understand it and figure out what to do next.
“Within six months of Charlie starting Bedrolite two years ago, there was an 85 percent decrease in Charlie’s seizures.
“Her quality of life had been transformed by this medication. For the first time he was alert, awake, coming back to us.
“He was interacting with us in his own way, with conversations and his environment.
“Now his life is in danger because the MHRA won’t let us get any cheaper version of the drug.”
At 10 weeks, Charlie started having spasms. This quickly turned into almost constant seizures.
After trying seven different medications, a ketogenic diet, and exploring the option of brain surgery, the Hugheses were left without options until they found medical cannabis.
Medical cannabis is a broad term used to describe oils, tablets, and sprays that include cannabis and are manufactured by pharmaceutical companies.
Having started on Bedrolite, the Hugheses switched to a cheaper £600 a month drug called Celixir20 from Israel.
They were told on 3 January that their private doctor would no longer prescribe Celixir20 as the Medicines and Healthcare Products Regulatory Agency (MHRA) forced him to take full responsibility for the drug.
This is because Celixir20 is manufactured to Israeli health standards rather than those of the EU.
Now the Hughes are faced with the prospect of getting their son off the drug that has transformed his life because they can no longer afford the more expensive version.
Charlie’s seizures would return, which can cause damage to the brain.
Matt said: “I can’t put into words how it feels. My wife is still in shock at how difficult things used to be before medical cannabis.
“Her mental health has gone downhill, she can’t stand seeing other children having seizures or going to hospitals.
“Charlie is about to walk, he has started school, but his learning could end when 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 help with Charlie’s access needs, take out a bigger mortgage and pay for private therapies.
Matt said: “There is so much more to raising a child than just medicine.
“We were both able to go back to work thanks to medical cannabis, which means Charlie can be at school.
“Many families cannot afford respite care or vacations because of the costs involved.”
The Hughes launched a legal challenge against the National Institute for Health and Care Excellence (NICE) after their NHS doctors were unable to prescribe cannabis.
According to NICE, there is insufficient evidence to prescribe cannabis-based medicines for severe epilepsy.
After Hughes’ legal challenge, NICE clarified the guidance to add that there were “no recommendations against the use of cannabis-based medical products.”
Then the British Pediatric Neurological Association (BPNA) produced additional guidance that Matt describes as a “zero tolerance approach” to prescribing cannabis.
Matt said: “Doctors are too afraid to prescribe.
“The NHS and BPNA should consider a harm reduction approach to prescribing unlicensed cannabis medicines rather than forcing families to take other routes.
“As a parent I feel completely powerless. We are in absolute despair.”
Since then, Matt has established the community interest company Medcan, supporting families like his who are going through the same thing.
Helps raise money for families struggling with the costs of purchasing private medical cannabis and offers support in making informed decisions.
The organization also conducts research projects on the efficacy of medical cannabis.
Medcan offers mental health support to the 600 families it supports, some of whom are struggling with anxiety, depression and post-traumatic stress disorder due to their experiences.
A NICE spokesperson said: “Until there is clear evidence of the safety and efficacy of cannabis-based medicinal products, specialist physicians must consider the patient’s individual circumstances, clinical condition and need, and weigh up, with the patient or the caregiver, the relative risks and benefits in the choice of treatments”.
MHRA Director of Care, Quality and Access, Dr Laura Squire, said: “We recognize the importance of these cannabis oil products for children with severe forms of epilepsy.
“That’s why we’ve enabled continued patient access to them when accepting requests to import. No parent should have cause for concern over non-stop supplies.
“We are continuing to work with the importer of Celixir20 to try to resolve concerns about non-compliance with UK regulations.
“While the current agreement runs until the end of this year, this time frame will be extended if necessary in the interest of the health of individual patients.”