Despite legalization of medical marijuana since last year November already, the UK’s National Health Service continues to block patients from accessing cannabis-based medication and forces them to private prescribers.
The Williams-Rankmore family is the latest to come to the fore as they fight for more accessible medical marijuana in order to treat their teenager son, Williams, who suffers from a rare form of epilepsy, Lennox-Gastaut Syndrome.
”But what we do know is everyday he has 100s of seizures and everyday those seizures kill brain his Brain Cells, taking a piece of our son away from us and away from this world. We cannot bear to see the deterioration any longer not in Bailey or any other Child or Human being when Full Extract Medicine can alleviate their condition and or give them a better quality of life for ever how long they have left or prolong a happier Life.”
— Rachel Rankmore, mother of Bailey in fundraiser.
It is the same form of epilepsy which Taegan Appleby suffers of, whose family recently saw a haul of medical marijuana confiscated by UK authorities. According to the parents of Taegan, he can suffer up to 300 seizures per day.
The Williams-Rankmore family, with Bailey (middle) - family photo via BBC News
Since Bailey Williams uses cannabis oil, rich in CBD with a small amount of THC, he has seen a reduction in number of seizures and started to speak, even play with his toys.
” The last few months, he has started to speak, interact in conversation, play with his toys. He has a reduction in seizures, so he has a better quality of life.
— Rachel Rankmore, Bailey’s mother
The family needed to resort to private health practitioners in order to get a legal prescription for Bailey. The Bedrolite oil costs the family a whopping £4,000/month (4,864.66USD at conversion rate of writing). The oil needs to be imported from the Netherlands, where a bottle costs £150. After import tax and pharmacy fees the Williams family pays around £500/bottle.
Despite the rescheduling of cannabis as Schedule 2 drug — meaning it has potential medical use — the UK’s health service remains opposed and insists on first further studying the benefits of cannabis plants, despite the availability of already approved products such as the cannabis oil Bailey uses.
Bailey Williams, photo via GoFundMe fundraiser
Earlier this month the National Institute for Health and Care Excellence (NICE) also took the position to not recommend medical cannabis due to a lack of clinical evidence. In its draft guidelines, NICE highlights that it had only 15 subjects for epilepsy, 11 of which were observational studies and 4 which it excluded from its conclusions(PDF).
The draft guideline does acknowledge that several patients did have less seizures though. According to its draft analysis, NICE seeks for a reduction of at least 50% in seizures before considering recommending. NICE is ending its consultation with specialists mid-September this year and will soon afterwards publish its final guidelines. Obviously, things aren’t looking good for patients.
Meanwhile, successes in treatment being registered around the world seem to be be ignored and the NHS’ stubborn stance further continues the Catch-22 status quo in which parents are forced to get private prescriptions and source expensive CBD oils abroad, all while the NHS and NICE will continue to lack actual subjects to analyse.
While the life quality of epilepsy sufferers in the UK, and other illnesses which have been approved by legislators as conditions for which medical marijuana can be prescribed, sees no improvement. Merely the usual traditional medication cocktails, often of little to no help depending on the severity of the patient’s condition.
The Williams family is currently hosting a fundraiser on GoFundMe, seeking to raise £20,000 in order to be able to continue Bailey’s treatment.
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