Kelly’s daughters have epilepsy. They have been handcuffed and sent to mental hospitals because of it. Cannabis has been the only thing to help them but the UK wont let them use it. You can help them get the diagnosis and medication they so sorely need by contributing to their Go Fund Me page, which can be seen here: https://www.gofundme.com/medical-cannabis-for-epilepsy
Doctor Frank: Hey guys. Dr. Frank here. Another episodeof Cannabis is Medicine. We’ve got two guests on the show tonight. First is Kelly O’Neil, a woman whose two daughters have been suffering from epilepsy for the past 20 years and she’s been fighting like heck to get access to medical cannabis and medicinal cannabis oil, as well as Phil Monk who runs an organization called WTU [We the Undersigned], and they’re fighting to claim that denying some of the right to obtain cannabis oil is essentially an abrogation of someone’s human rights let’s see what they have to say.
Doctor Frank: Hi guys good evening. Now Phil you you run or you are organized as “WTU” . What is “WTU”?
Phil Monk: It was a bit of an accident in a nutshell Frank. I’ve been a therapeutic cannabis consumer well since I was 16 but aware of it for the last four years and an active campaigner. About 12 weeks ago there were lots in the British media about little Alfie, Marie, Billy all these little children that we know that are suffering and obviously cannabis oil. And I got a bee in my bonnet because I’ve always felt it’s against my human rights to deny me access to this herbal remedy.
So I decided to write to every human rights solicitor in the United Kingdom to ask them if they thought I had a case and if they’d help me fight it. And then, in the last moment, I decided I was involved with other reform groups to invite other members if they wanted to undersign to this letter I was sending to all of these solicitors. So I was taking my daughter to Taekwondo and I quickly fired out the message to everybody and by the time I got back there’s a couple of hundred responses and 12 weeks later we’ve got over 3,000 these people now that kind of believed the same thing. there’s what We The Undersigned is asking for which, in a nutshell, would be freedom and equality with the toxic recreational drug consumers of alcohol.
We should have the same protections in the law as they have, we should have the same freedoms and law as they have and this inequality in society – I would like to challenge that. So that was how it all started really and it’s been a very busy 12 weeks since I had that little idea and it’s been quite momentous. I’ve met yourself in Parliament in the ‘Cannabis is Medicine’ conference, which is a great honor, and it’s been quite a whirlwind really and a lot of changes happening so let’s see what’s going on now.
Doctor Frank: Well there’s a lot happening. Obviously the meeting in Parliament was wonderful. Now Kelly, didn’t meet you there, but from what I understand you have a story that needs to be told. A story that, if it doesn’t break your heart, then you don’t have one. And so there are times when I love to hear myself talk, but I think Kelly this is one of those moments we’d really like to hear you talk and I’m just gonna give you the floor. Would you please tell us a little about yourself and your experience with cannabis as medicine?
Kelly O’Neil: Yeah. Well I’ve got two daughters with epilepsy. I’ve got them I’ve got three children and two of my daughters at age six were diagnosed with childhood epilepsy, unknown cause. They are 24 and 15 now so it happened 10 years apart. The first diagnosis was with my eldest daughter Danielle. She had complex partial seizures, altered behavior … We went through years of the usual anti-epileptics and horrible side effects of them all. School problems, you know, relationship problems with it because of the nature of epilepsy. It’s not just somebody has a seizure when people have chronic epilepsy – the impacts on their life and the lives of the people around them is absolutely horrendous.
And then, when our youngest daughter was the same age she also started having seizures. She had an explosive … She has an explosive onset this was nearly at least eight years ago. It was so severe that the only way they could stop the seizures was by putting her into a coma, and they couldn’t even, you know, die. I hear the stories of these other mothers. Alfie’s mother, Charlotte and Hannah with their children. I’ve watched my 29 kilo seven-year-old daughter pumped full of enough midazolam that would take a 150 kilogram man out, and it didn’t. It made her absolutely worse. Like an absolute animal there was just frothing at the mouth. It was horrendous. The only way they could treat it was by dampening down her immune system and using lots of other dangerous drugs to try and bring her around.
She was stuck in back-to-back seizures for two weeks and they went – by my words – they went past complex past ones. It was just awful I don’t know whether you’d away but in the process she was treated for autoimmune enterocolitis.
Doctor Frank: This for those people out in there – body essentially attacks the brain. You just imagine that please. I’m sorry, go right ahead.
Kelly O’Neil: She’s had this for 18 years. In the last two years she’s had such severe bouts of it, all triggered by an antiepileptic or an antibiotic on prescription. This landed her in hospital twice. The last time she’s just come out of three weeks of being in hospital when I thought the doctors every step the way to stop giving her the pharmaceutical drugs which were triggering the response. But because they don’t understand about this response, we haven’t even got the diagnosis, but luckily 18 months ago we found the highest-strength CBD oil and we’ve been sponsored by a beautiful company in the UK. We’re helping my daughters because I met them last year in a cannabis conference in the UK.
But this is something I don’t understand, Doctor Frank, maybe you can help me. How come the politicians are allowing investors to flood to the UK, and they’re still prosecuting people and taking our hope? Sorting out their dividends as people suffer and die.
Doctor Frank: You know there’s no answer to that. sorry there’s no answer to that. It is evil.
Kelly O’Neil: There needs to be.
Doctor Frank: That’s what people don’t understand. it’s okay for them to deny other people
medicine because it hasn’t affected them – it hasn’t affected their family. I have had seven children, and when my kids get a cold for three days I stay up all night. I couldn’t even imagine 24/7 of wondering what’s gonna happen to my child who’s having seizures. You can’t sleep, you can’t function, so it’s okay to come up with all these nonsense arguments against it because it doesn’t touch me.
“Why should I change it now?” How can you not sit and look at a family who’s going through this through the emotional stress, the PTSD you must be suffering with watching your child be sick all the time, and then have the temerity to deny these people access to a plant oil. Absolutely it’s made my brain want to explode.
Kelly O’Neil: I guess worse than that: to know these are the very policy makers
making billion millions of pounds profit, has crushed me. I have no faith left in any system in the
United Kingdom. The NHS is being ripped apart and people are suffering. This last three weeks in a Southwest hospital in the England, I was shocked. It was looking like looking at a business, an industry there’s pumping people … I’ve got to pay for three weeks on top of all is now. I’m on benefits [welfare/social security], because you’re right, I have PTSD, because the last seizure my daughter had and she was suffocating during, and I thought this was it …
The last … three weeks ago … My daughter was so unwell that she was in an ambulance with psychosis. The police pulled over the ambulance manhandled and handcuffed her, status epilepticus, looked at it boyfriend and said, “What’s she been on, mate, she’s off her nut.” That’s what epileptics have to face all the time. My daughter was sectioned two years ago. The suffering my daughter goes through at the hands of corruption, when eight years ago they were sending Epidiolex to New South Wales in Australia for the compassionate program for children with Dravet’s.
What about the what about the epileptic communities of the United Kingdom who have held … The only thing they have left is hope? When my second daughter got unwell, I didn’t think I’d make it through another life watching another child suffer to the pharmaceuticals and the no hope and no understanding in the education system …I mean, the staff at the hospitals, eighty percent of them are care assistants now, and they never seen a grand mal seizure let alone a petty mal. They couldn’t even watch these people. They’re being arrested, sectioned it’s … It’s horrible, and this is why I’ve reached the point where I can no longer hold my silence, because everything’s so much better for it. And it’s not just my daughter’s, it’s thousands of people. Mothers having to say goodbye to their children with cancer. With, you know, children saying goodbye to their parents. People with such severe psychiatric illnesses because of the psychiatric medications they’re being doled out and made to deal and administer at
home. This you know …
Phil Monk: How is it for Danielle when they have access to cannabis then, Kelly?
Kelly O’Neil: Well, the good news is 18 months ago a life changed around. After the four weeks in hospital, two of them in psychiatric wards where they tries given us things like pregabalin, clonazepam.
Phil Monk: You mentioned she had a seizure four hours after taking an antibiotic.
How long it had been before the previous …
Kelly O’Neil: It was … Well, we put we found some new oil, but if I go to 18 months ago after the time when she went to hospital for four weeks. I went online and I begged her be on Facebook for anybody who knew anything about chemistry so could they please help us know doctors had told me to take her home and make it comfortable because they couldn’t stop her seizures anymore. It was awful.
So luckily we found some, and it was CBD oil only. I tried it, with no instructions because you know, two years ago … I mean when you’re faced with death, you will try anything. So I tried it first, like you do, being a good mum. Make sure you won’t poison them, I was still very uneducated. Nervous, but I thought how, “This is probably better for my daughter than going to a mental hospital the rest of the days.” And she started. Two hours later she had her last seizure for about three weeks at the end of her cycle for the first time in ages. No antiepileptics, no nothing. And then it was another three weeks before she was had another one. And then slowly, she was going from, at her worst, 10 grand mal seizures a day, or she could have a week where she could have five complex partial. Her complex partials would include stripping off and running up the street opera singing.
So you know, the cannabis oil we’ve introduced to her, but I must add you as age 15 she found cannabis through the streets, through her friends smoking joints and whatever. She lost everybody in your life except me because there ten years ago there, was no awareness a was really hidden from everyone and people were just “stoners” and “wasters”, and how consumers even epilepsy sufferers, smoke cannabis and think, “Oh my god. You know she’s nothing but a little druggie.”
The stigma and the bullying and the disgrace she felt because said to me, and this is her words not mine, “she felt like the fire in her mind was settling down” when she smoked. She stopped shaking, she stopped sweating profusely. These are all size effects of the antiepileptic she was on, so the cannabis wasn’t only treating the side-effects the anti-epileptics. We understand it was providing neuroprotection as well.
Doctor Frank: I’m listening to this. I got a million things to say. When we were in Parliament last week, it was fabulous that the Home Secretary gave Billy a 23 day supply of cannabis oil to try to get him out of the hospital. But I try to impress upon people there’s tens of thousands of Billy’s who don’t have the publicity of his case, who are out there suffering. Families. how do you piecemeal this? How do you just decide, “Well this family had enough publicity, so that I have to make sure that they get their medicine.
But all these other families don’t.” Everybody is afraid of this big slippery slope that, once you allow the first medicinal cannabis user in the UK, there’s gonna be thousands of them. Well yeah there are, because there’s gonna be thousands of people who need it. There’s a Questcor and Mallinckrodt put out a pill or a vial of anti-seizure medicine called “Acthar”, and this stuff supposedly is amazing. They won’t tell you how it works.
My guess is that it hits the endocannabinoids system, but they’re not gonna tell us that. When they first released this on the market four years ago, they sold it for $240 a bottle. Today, it’s $23,000 a bottle. They raised it ninety seven thousand percent. Who has that
kind of money? Epilepsy is a lifelong disease. How …? Wher …? I have no words.
Kelly O’Neil: Epilepsy is probably a symptom of an underlying problem, which is what I have discovered.
Doctor Frank: You’re probably right.
Phil Monk: I would suggest it is an endocannabinoid deficiency syndrome.
Kelly O’Neil: I’ve had 19 years, front nine, 24/7. I’m not, you know, I’m not a highly educated woman, but I’m a damn good mother and I love my children and it’s my job to do the best I can for them. So I research, I go to meetings, I try to stay in the loop and I’ve just reached the point now where it’s all about money. They don’t care about people’s lives, because you’re right, they don’t have to live them. And it’s really hard to explain this to them.
My daughter deserves the right and dignity and freedom to grow her own medicine. Just as people with depression and anxiety are allowed to go and buy a liter of vodka, because some minister’s getting rich off the tax of it, to go and administer that for their pain at home. My daughter can use a safe plant to do that herself. We don’t, we can’t use those synthesized versions.
Phil Monk: I’m gonna call that “vigilant cause”. The one what you’re referring to, Kelly, it is in their new guidelines. When I say “they”, they’re the UK government. They released some new guidelines about how people could lawfully access cannabis therapeutic. And they’ve got a little clause in there which is very important to me because of what’s happened with me and relevant to you; and it says that the clinician must prove that the patient has tried all lawful licensed and unlicensed drugs before they’re permitted to try cannabis therapeutics.
Now in my circumstances, I’ve had a mini-stroke scare from citalopram, a brain haemorrhage scare from beta blockers, a cancer scare from tramadol [?] and a cancer scare from zomorph [?]. I refuse gabapentin, I refuse pregabalin or any other opiate-based drug and I replaced all with cannabis. But that clause would refuse me the right to use cannabis and would dictate I have to go and use the gabapentin or pregabalin, or even if they have an experimental and unlicensed drug, I’ve still got to use that before I can access cannabis.
Kelly O’Neil: Which you know already works for you well.
Phil Monk: I know it works years now but they would force me to try these things.
Doctor Frank: Now hold on a second. What if the physician said “Yeah, they’ve tried it already”? Are they is somebody going to come back and give them a checklist that says they’ve tried this this this this, or they gonna leave it up to the physician’s judgement? Because if you leave it up to the physician’s judgement, and they say, “You know they tried everything. We’re ready.” Which is what I would do.
Phil Monk: Yeah, absolutely.
Kelly O’Neil: Yeah but you gotta try and find a physician in this country who’s willing to even consider this. They’re all still so bloody in-the-dark out here, you wouldn’t believe it.
Doctor Frank: I am having trouble understanding this.
Kelly O’Neal: In Canada, in America, wherever other countries. Israel. All the countries have. Germany. They’re all making moves forward. How can the UK be the largest exporter and cultivator and producer, when they’re still using dark age laws against the people? To the slaves. Doesn’t it make you sick and weak …?
Doctor Frank: Bottom line is this is a plant. This is a plant that exists on this planet the way we exist on this planet. And from what I understand, when you go to a nice restaurant in Italy, they try to get all the food from the same area locally sourced because if it grows together it goes together. Yeah, well we’re on this planet, and so is the cannabis. It goes together. I mean, otherwise it wouldn’t be here. It would have figured out a way not to exist I want attention on this, folks. This was wonderful, Kelly. I wish you and your family the best and if there’s anything I can do please just, you know my people. Just let me know. Phil, nice seeing ya again, buddy. All right we’ll talk again, I promise you.