The family of a toddler with a rare form of epilepsy is asking for a legal review of cannabis oil in Norwich, England.
Three-year-old Charlie Hughes suffers from West syndrome, a condition that can cause him to experience up to 120 seizures every day. With the addition of a proper medical cannabis oil regimen, his parents Alison and Matt Hughes report that he now suffers from less than 20 seizures per day. According to The Guardian, the National Health Service (NHS) prescribed Charlie with a number of pharmaceutical drugs in the past that not only caused him to experience lethargy regularly, but did not effectively reduce his seizures.
Ever since Charlie began taking medical cannabis, he has become more vibrant and alive than ever before. “Charlie is happier, more alert, far more vocal, constantly babbling and takes an interest in his toys,” Matt told The Guardian. “He can feed himself and loves nothing more than some rough and tumble with me. He’s come alive again. No one knows definitively what effect all those anti-epileptic drugs in combination with each other have on the development of the brain. If he wasn’t asleep or completely zonked out, he was just seizing. Cannabis has massively improved his general wellbeing.”
The Hughes family has found its medicine of choice, but it is a complicated process due to the fact that although medical cannabis oil is legal, it still remains unlicensed in England. The family is forced to source Charlie’s medicine privately, because the NHS will not prescribe cannabis to them directly. Similar instances for other families have caused hardships and stress, so the Hughes are taking the issue to court.
Having seen the impressive results, Matt has partnered with the National Institute for Health and Care Excellence (NICE) for legal aid. As of July 30, a court justice granted permission to call for a formal review due to reasons such as “alleged inadequate consultation” and “alleged failure to take into account relevant considerations,” as stated in court documents.
Professionals such as Professor Harry Sumnall from Liverpool John Moores University believe that a formal review could help the NHS open up the conversation to prescribing medical cannabis in the future. “Nice has argued that the guidance is clear and that there is nothing stopping the NHS from currently prescribing cannabis-based products. Perhaps a successful outcome for the claimant will lead to clarity over this or generate momentum for prescribing in the claimant’s particular case,” Sumnall said.
NICE has provided the NHS with 35 days to contest this claim, which will conclude at the end of August.