Oftentimes we learn about patients in the media who are struggling from having legal access to safe medicine. While every patient story is heart-wrenching, it’s the ones about children that seem to stick with us and sometimes serve up the impetus for policy change. Charlie Hughes is one such patient story that both touches and infuriates readers who learn of the battle his family is waging for access to medicine.
In the UK, parents of toddler Charlie Hughes are fighting the National Health Service (NHS) and seeking a policy change that could radically alter his quality of life. Charlies, 3, has a rare form of epilepsy called West Syndrome, known best for its frequent seizures – up to 120 per day – and historically treated with benzodiazepines which have side effects ranging from lethargic to dazed and not effective at reducing either the seizures nor their impact.
Under the NHS protocols, he has been prescribed seven different prescriptions for anti-epilepsy medication, yet he was still experiencing up to 100 seizures a day. Charlie’s parents, Allison and Matt claim that with full extract cannabis oil, the number of seizures he experiences in the course of a day is dramatically decreased. The family pays hundreds of pounds per month to source full extract cannabis oil privately because clinicians at NHS have refused to prescribe Dutch-made oils (which meet the European Medicines Agency guidelines for Good Manufacturing Practice).
Matt said of his son’s improvement since taking cannabis: “Charlie is happier, more alert, far more vocal, constantly babbling and takes an interest in his toys. 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 decision in the Hughes’ case against the NHS could have profound impact on cannabis oil as medicine and the ability for parents like the Hughes to have access to what is clearly making a difference in their son’s quality of life.
Visit the link below to learn more about the Realm of Caring. Not only are they actively involved in making cannabis accessible to all who could benefit, but they provide a financial assistance program as well.
