Medical Cannabis & Epilepsy - Epileptic Children & NHS

20 days ago

There is no doubt that any parent, of any child, wants the best for them. That's why so many parents of children with severe epilepsy would do anything to make their lives easier and more comfortable. For these children, Epidiolex (An oral solution of cannabidiol) that Has Been Approved for use in the UK and other European countries, is potentially life-saving but the NHS does not currently recommend it.

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Why NHS does not recommend it? The side effects of currently prescribed drugs are far worse than anything, medical cannabis could cause! Is it going to take a child dying before NHS steps up to do the right thing?

It has created a "two-tier" system where the medical #Cannabis is available privately but only at significant cost, the Medical Cannabis Costs £4,000 a Month to help teenager, the reason why families are having to fundraise thousands of pounds to obtain the vital medicine for their children, using their life savings to obtain it privately.


Medical Cannabis Product Approved For Epilepsy / #News

Rachel Rankmore & Her Son Bailey

Rachel Rankmore, has a private prescription for her son Bailey (17 years), who suffers with a severe form of epilepsy called Lennox-Gastaut Syndrome.

The medical cannabis, was prescribed by a consultant neurologist in London , and the family get it to the UK from Holland via a specialist importer. But it costs the family significant amounts of money they don’t have to be able to keep getting it. Mrs. Rachel told Metro.co.uk:

Our funds are running out. We pay £1,800 to £4,000 a month to keep our son well and we only have a couple of months left. They are putting a price on our children’s heads.

She said she knows six or seven other families with a private prescription, and others who want to have one but don’t have the money.

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Rachel Rankmore & Bailey

Elaine Levy & Her Daughter Fallon

Mrs. Elaine Levy, the mother of Fallon (25 Years), with severe epilepsy (Lennox–Gastaut syndrome), had been forced to sell her house after spending her family’s savings on private prescriptions for medical cannabis, in an attempt to fund her daughter’s care after spending more than £30,000.

Her daughter no longer needed a wheelchair after using full extract cannabis oil, after years of taking sedatives. Mrs. Elaine Levy said:

She can walk, she can talk, her intelligence has gone up hugely, she has proper conversations, her IQ has gone up and she now tells me where to go. It’s not a cure but the result is phenomenal.

The price is so high, to can keep her daughter well, as without cannabis, Fallon would be forced to go back to the wheelchair and start taking clobazam valium type drugs, where you can't eat properly and you're doped up. "Well as a parent, who would do that?" she asks.

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Elaine Levy & Fallon

Physicians and MPs Call for Action

The situation has become that ridiculous that the medical community and more than 100 cross-party MPs have now started to rally for medical #Marijuana to be accessible for free on the NHS System!

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Hash Out The Truth Files / Mr. & Mrs. THC Series / THC GodFathers Series
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Imagine how much more life we could live and progress we could make as a human race if only we could provide REASONABLE healthcare that was both affordable for patients AND profitable enough for manufacturers to sustain. These price gauging instances are truly disgusting and flat out shameful. Are we really still withholding medication from people who need it in 2019? Magically, there’s enough pharmaceutical opiates on the streets to kill the entire human race but we are hoarding real medicine like there’s no tomorrow. I hope that we, as a species, can ‘get smart’ and fast. This is simply unacceptable and won’t change until we change it.

Hit the heartless Healthcare Industry in their wallet if they don’t feel anything else. They seem to have no issue doing it to us. We must fight for what is right.

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Actually, here the problem is that Epidiolex should be available for free “on the NHS”. Once prescribed by a NHS (the UK’s National Healthcare) approved physician, it is free.

But, because the NHS seems to base on old school assessments where a reduction of 100 seizures on 300/day doesn’t hit the 50% threshold required... the NHS considers medical marijuana — including the specifically approved treatment case of MS and epilepsy — as “not proven to be helpful yet, needs more research”. Click the Rachel Rankmore link, I think at the bottom I refer to the status of current assessment draft and some “sound bites from it”.

Epidiolex themselves claims higher reduction rates even. (Note: that totally seems a sponsored by [read on, the story gets better] site)

So the healthcare system, a free healthcare system paid by every tax payer, decides that they are above the law because, apparently, improved quality of life is not sufficient a reason to them.

Let’s now double up the irony: the UK is the world’s second largest medical marijuana grower (at British Sugar), marijuana which is then exported to the USA for GW Pharmaceuticals.

Intermezzo.

In the United States, the cannabidiol drug Epidiolex was approved by the Food and Drug Administration in 2018 for treatment of epilepsy associated with Lennox–Gastaut syndrome or Dravet syndrome in patients 2 years of age and older.
Source Wikipedia

Now, how about we triple up the irony? Although at this point it becomes utterly disgusting to be honest.

In September 2018, following its approval by the FDA for rare types of childhood epilepsy, Epidiolex was rescheduled (by the Drug Enforcement Administration) as a Schedule V drug to allow for its prescription use. This allows GW Pharmaceuticals to sell Epidiolex
— Source Wiki too, emphasis mine.

TL;DR: legally approved medical marijuana treatment, made from in the UK legally grown cannabis, is not prescribed/supported by the UK’s national health service, @NHSuk. Patients must procure it internationally, potentially risk getting it confiscated upon import.

You basically have a better chance at winning the lottery than get a NHS legal medical marijuana prescription.

WTF.


That not taking away from your rant. I come from a progressive nation with healthcare for everyone, go private insurance only if you earn above a certain above average amount. I would love to see more Purdue cases, but you may have noticed that from my Twitter feed. :D

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That seems like a potentially great system that is set to fail the citizen by design. It’s all absolutely absurd. The UK exports cannabis to US, illegal by definition in both places, yet US can’t even allow cannabis to be grown for medical research while it is grown for recreational consumers in various states in the US. If I had a dollar for the number of WTF moments I experienced just reading this — I could likely have paid for medication for a patient in need.

We have to eradicate the ancient Policy makers around the globe who still push propaganda that’s been ineffective at burying truth for nearly a century now. This is ridiculous and there are people all over the world that deserve better than what their system is giving.

These so-called “officials” in govt must have no conscience or a shitload of Indica just to sleep at night. I know I wouldn’t feel good about ‘status quo’ right now. It’s sickening.

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The great thing about “status quo” is that its sole reason of existence is to be disrupted. ;)

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Absolutely true. We didn’t get to the present day milestones by conformity 😉

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UK exports the most medical high thc cannabis in the world, but oppresses the needs of UK patients. The corruption of big pharma and the tories know no bounds. Truly evil to their core.

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I've got 3 cannabis cards and no legal access to weed, UK is fucked and miles behind other countries in cannabis legislation. It'll take the decimation of tories to pass through Parliament, thankfully they're fucking everything up with brexit so theyll not be elected for another generation 🙏

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I have a friend with epilepsy cerebral palsy and he's now 20 yrs old. You could just imagine the pain and sacrifices of a mother seing her son who could not even talk nor sit on his own. But he can comprehend she said. Imagine the medications for 20 yrs! He's situation is still the same despite those synthetic drugs! If only medical cannabis is allowed here, things would have been better. My heart breaks with such agony especially when she asks for our prayers whenever her son had an attack. Once medical cannabis is legalized, they will be amongst those who will be benefited.

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I did not know that, with the cannabis cards, there are no legal access to weed !!! / Now I understood why you said "Comes off as a method of calming people down, making them think the lad has his medicine now, but he doesnt" / I start to believe that, the corruption of big pharma will need a long time to take end!

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Yes, you are right, while a lot are busy with their deep dream art, we must fight to let medicinal cannabis free on NHS, to save lives, to force them to make the vital medicine available to people with epilepsy, chronic pain, ...

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It’s a worthwhile endeavor that we continue until the entire world sees cannabis as an effective and natural form of medicine, as well as a utility. How can something that has caused zero deaths, can be used as medicine for many ailments and treat diseases, can make paper and building materials renewable and sustainable without forest devastation be illegal?? It is monumentally preposterous for mankind to allow such a deceptive subversion, especially from anyone who refers to themselves as a healthcare professional. No matter what State or Nation, misinformation under the guise of greed has no place in our modern society.

Truth prevails and so we all thank you @lordoftruth for holding the light to so much valuable information.

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Meanwhile in the actual world.

They aren’t allowed to give gifts anymore in most nations nowadays, so they just invite them to seminars. All-incl trips, family allowed to join too.

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Time to start calling them what they are: opiate based serial killers. There's cases of individuals in hospitals murdering hundreds with opiates. GP's peddling hard opiates is no different, absolutely disgusting.

My God! I feel so sad but luckily, so grateful for the medical cannabis. How it broke my heart too. The story and thank you for sharing.
#legalization

this broke my heart!

Good post Mate!

Never forget how big pharma has denied life saving medicine to children for decades. Truly despicable.

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