Ludicrous Medical Cannabis Situation Continues in UK as Family Pays £4,000 Monthly for Teenager’s Treatment

3 months ago

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.

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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.

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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.

Tags: #news #health #medical-marijuana #uk #nhs


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Absolute BS that this heartbreaking story is a reality for many in the legalized area's. There are a few very lucky child patients that have recieved sponsorship from cannabis companies, but there are so many that don't/wont get that lucky.

How are these decisions being made? What bill did the people agree should be passed that outlines these conditions? In Canada we had bill c45, which countless community members (cannabis enthusiasts , general community & professionals) were actively requesting amendments, voting and basically becoming more political than they had ever been. Yet we still ended up with an ugly privatization and overly taxed system.

The whole thing seems so shady it boils my blood.

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The world is business. Nothing else. It's just business. Who ever takes charge its his job to make business as a country. Yeah, overly taxed must be shitty. Would probably complain myself if I lived there. But atleast your country made some progress. Some step forward. Also being the second largest country in the world after Russia by geography (if I'm not mistaken) is a great thing for further prospects in helping other countries who don't even have medical research at their availability. There are still many countries who will give you some hafty prison time. And I may be mistaking but aren't there even counties that execute for possession of any quantity?

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It’s pure lunacy. At least that’s IMHO the most appropriate term.

The medical marijuana law also happened because there were several of these cases being highlighted.

Now, it is legal to be prescribed, although for very few conditions, but the National Health Service (NHS) remains unconvinced and wants more clinical research to be done first. Thus no NHS physician or neurologist will prescribe it.

That also means that the NHS, and NICE, have no subjects to study either.

At the same time the UK is one of the largest medical marijuana producers in the world, with British Sugar who produce for GW Pharmaceuticals, the makers of Epidiolex.

This is insane, greed destroys everything. This stuff grows for free in my back yard.

There are many places around the globe still being left behind by proper CBD treatments. It's not the same, but ai had a dog with epilepsy. As mentioned it's not the same as a human but trough my childhood I watched what epilepsy does to a creature. And I believe that it's so important for animal treatment too. There are videos wherever you on the internet about people with seizures and cannabis helping them recover it. When someone has a seizure the after can be challenging too. They don't reposnse, walk, talk, do a anything. Like commatsed people but with the ability to move around a bit. Many times they can't walk for a while after the seizure. The older they are and the more frequent the longer the recovery time. Resmoked.

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It’s ridiculous that they only consider a 50% drop in seizures as “quality”. If quality of life comes in play, then even 25% is massive. That can be the difference between being able to sleep some hours non-stop or not.

As they say so eloquently in British English: “It’s utter bollocks.”

I sincerely hope that the family can get the support they need ❤

I lived with a guy whom suffered with epilepsy along with partial paraplegia(left side of body) from having a serious brain injury as a kid and I have seen first hand the beneficial effects of the correct treatment with extracts!

Insane that they open the door for legalization only to block access to the treatments available? SMH

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Even more ridiculous if you consider the fact that the laws were fast tracked because of continued public outcry over exactly this type of cases.

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It’s ludicrous for sure!

So the idea that comes to me for this is creating a system for medicinal patients to receive funding through the blockchain.... on STEEM there is fundition kinda like go fund me couldn’t a similar system be implemented but specific to campaigning for support and supply of cannabis treatments? I am no wiz, said it before but it seems like that is the hole in the market and crypto is essentially a license to print money.... just my random thoughts for yea 😅

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Gotta make sure market has enough depth to support the “dump” when they cash out their campaign though.

With still low liquidity, and little utility, when a big amount is taken to the exchange there may not be sufficient support to buy that volume and it will literally crash a token. That’s something coins like pot coin and canna coin haven’t really sold the sites they paid to become partner [during their ICO].

So they will have Sensi Seeds accept payment in their currency — let’s assume that actually happens LOLz. Then some day accounting department will say hey guys, send those $20k in POT to bittrex, we need to pay warehouse lease for next quarter. Will the traders on bittrex support such a volume? Will that $20k in POT also end up as $19,999.80 (accounting were smart, they used ETH so didn’t have to pay BTC fees, lovable number crunches they are)?

Or will the market turn that $20k in $12k? At which point the POT team has one hell of a job to do to convince Sensi to continue accepting POT.

That money you’re printing is worth only as much as markets back it. What you're actually printing is down pressure, that's why currently so many projects are focusing on "stakemine" concepts. But that alone is not utility either, it's just "here have some [worthless] token as reward for locking up your stake of [worthless] tokens and not dumping them".

So Smokeitio without additional SMOKE token utility... dump token without bottom.

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Ohh I know... been watching it happen elsewhere with launch of their "side-chain" tokens... buying miners and stake mining while also earning the tokens for content creation.... I don't know how it will be sustainable.

Honestly I feel the tension from those running the projects and people attempting to do spam & payout control with downvotes... totally made a bad problem worse by dividing communities with tags SMH

Realizing how SMT effected ETH with downward pressure I have yet to really be interested in launching my own token... It's sad that people do not realize the overall value of the platform has not changed only the ability to divide rewards into smaller pieces allowing for quicker and easier cashouts increasing that downward pressure as you stated.

I think the value of a project trying to create a system for medicinal patients would come more from the central advocacy agency and possibly what developments they bring forward to bring in the investment..... as I stated I am no expert but I am certain with enough genius it could very well become a reality..... it will come shortly after the need for exchanging crypto to fiat to make use of it is eliminated!

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To be honest... we don’t need that system. We just need a worldwide solid medical marijuana standard. The UN managed to worldwide prohibit it, the WHO should be able to worldwide get things going [faster].

If in the UK they get their head out of their arse and the NHS prescribes it... then it doesn’t cost a thing to the patients/family.

About the other topic... all those tokens, and the lacking complexity (investors value complexity), have been really good for SMOKE. We have a lot less Weku crossposters than we had before those tokens. 👌

But crossposting is still an issue and hurts on different levels, token dilution being one of them. But we will get there.

And while with 50/50 and inability to “code the topic” we will be challenged in the future with similar issues they had [pre-tokens], let those tags rule. They keep many away from us and avoid we have much flagging to do, because... when we achieve scale it will only interest canna businesses if the topic is maintained If they open their feed and everything is unrelated...

Educative write up
Thanks buddy

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Thanks. I got some practice in writing about “news”. But the countries I’ve lived in, and still have an affinity with, I usually cover here if there’s more to it than just a “news item”. Also Crackbook as I loathe that company rather passionately.