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fev 20, 2020 21 min read

When your kid needs cannabis

author
by The Cannabis Enigma Podcast
Hannah and Alfie Deacon

When Alfie Dingley’s mother first broached the idea of giving her epileptic son cannabis, their neurologist threatened to call social services.

So she got a new doctor, moved her family to the Netherlands, and found a treatment that worked for Alfie’s seizures, caused by an extremely rare mutation of epilepsy shared by only nine other boys in the entire world.

“He was in hospital every week with hundreds of seizures,” Hannah Deacon explained on The Cannabis Enigma Podcast. After starting the cannabis treatment, Alfie’s seizures became less and less frequent.

Listen, subscribe on: Apple Podcasts | Spotify | Google Play

Listen, subscribe on: Apple Podcasts | Spotify | Google Play

“So we carried on and we got up to a dose of 300 milligrams of CBD and we added in a very small amount of pure THC,” she said. “From when he was put back on the product after we came back to England, he had 10 months with no seizures.”

But Alfie’s new treatment was illegal in the United Kingdom, forcing his mother to embark on a public campaign to get her son the only medication that was keeping her son out of the hospital.

Hannah Deacon and Alfie Dingley
Hannah Deacon and her son, Alfie

After appearing in the media, meeting the prime minister, and engaging in advocacy work, Hannah ultimately got her son the first-ever authorization for an individual patient to use medical cannabis in the UK.

“It’s madness. Initially the government said that there was no medicinal value to cannabis and that they wouldn’t help me,” Hannah recalled. “And then I’m at the Home Office and I met the prime minister and she said, ‘Okay, you can apply for it.'”

Alfie still has a rare form of epilepsy, but with cannabis treatment, his quality of life has improved massively.

“He’s out of hospital and he’s at school most days and he’s learning and he’s happy and I can work,” Hannah said. “Before, I couldn’t do anything. I was a full time [caregiver] watching my child fade away. That’s why I feel so strongly about [cannabis] — it’s about giving people with chronic illness a better quality of life.”

Hannah Deacon
Hannah Deacon

The battle isn’t just Alfie’s, however, which is why Hannah has become an advocate for better and broader access to medical marijuana in the United Kingdom. The legislation in the UK is good, she explained, but doctors are still afraid to prescribe it and buying medical cannabis is cost prohibitive for many of those who do manage to secure a prescription.

“I’m hoping that we’ll move forward,” Hannah said. “We won’t leave it until it is better for people because I know what it’s like to be the parent of a sick child.”

Full Interview Transcript:

Elana Goldberg:  Hi Hannah. Thanks for being here with us today.

Hannah Deacon:  Thank you for having me.

Elana:  I’d love to hear first of all, how you got into the industry. I understand it’s through your personal story.

Hannah:  Yeah. I didn’t really know anything about cannabis as medicine until I had my son Alfie. At eight months old he had his first seizure found him in bed at night, um, having a seizure. Up until that point, he was quite unwell from the age of four months with, uh, recurring infections. Needed hospital treatment a few times for temperatures and he had his first seizure then, we were in hospital for four months with him.

He wouldn’t stop having seizures. Um, he was given nine anti-epileptics, um, over the course of the first few weeks, which, didn’t do anything, he was on a life support machine. Um, we ended up at Great Ormond Street Hospital in London and we were told that he would probably die — which was incredibly hard. I never ever experienced a seizure, let alone, a position where you might lose a child before. And then the doctor said to us, “Well, try steroids. It may be that he has an, he’s having an immune response.”

So, because they did a test which showed a lot of blood cells in his brain and his blood. So they gave him intravenous methylprednisolone, which is what you give for anaphylactic reactions.

Elana:  Okay.

Hannah:  It’s like used for very severe allergic reactions and it worked. And he stopped having seizures. He was diagnosed at that point with immune response of epilepsy. We went home and he was on a pulse steroids and Keppra and he was weaned off that and he was fine.

So we just thought it might have been an isolated event. And unfortunately, again, he had another cluster of seizures eight months later.

Elana:  How old was he by this point?

Hannah:  By this point, he was about 14 months.

Elana:  Okay.

Hannah:  So, 15 months. And then, it carried on reoccurring every eight months. And when he had clusters of seizures, he would have hundreds of seizures. He would lose all his skills so he couldn’t sit, he couldn’t eat, you know, he would be very, very decimated by them. Every time they were steroid responsive and every time he would have a lot of seizures and we were in hospital for a couple of weeks.

And then we’d be home, then we’d have to rehabilitate him and then it would happen again. So, and we said to our neurologist at the time, “This is cyclical, you know, it’s happening pretty much the day, every eight months.”

Elana:  Yeah.

Hannah:  And he said, “Oh, no, no, no. He’s had all the genetic testing. He’s not got anything genetically wrong with him.” And then, age four, his cluster started coming every three weeks — it’s the same thing. And then an age five, it was every week.

So, this condition was just getting worse and worse. Age five, he was diagnosed with a condition called PCDH19, which is, usually a, a condition that only affects girls. Um, for us, it’s not inherited, so it’s a genetic condition that just happened — and he’s one of nine boys. 

Elana:  In the world?

Hannah:  In the world. As my partner says, “We can’t win the lottery, but we did that.” 

Elana:  Those are good odds and bad odds.

Hannah:  Yeah. So, it’s, you know, a very, very rare. He’s probably, out of the nine boys, he’s the only boy that requires steroids to abate his seizures. So in that sense, he’s unique. So at that point when we were diagnosed, I realized that the doctors that were talking to me didn’t know anything about this condition.

And, really, at the time, they were always experimenting on him. They didn’t know what to do for him. He was given a lot of drugs, which, at the time, I didn’t realize, but that were unlicensed. That were untested for children that were, you know, I understand, you know, not to be negative about the doctors, they were trying to help him.

Elana:  Sure.

Hannah:  But you know, it’s really important that I think people realize that actually, a lot of medicines that our children are given are experiments. They’re licensed for adults. They’re not licensed for children a lot of the time, because they don’t have the data. And, when I started to think about that, I started to question, “Well, is this the right thing for my child because at the moment he’s really sick.” And then I started to do research because I knew that he responded to steroids. And what does steroids do? They suppress your immune response.

Elana:  Yeah.

Hannah:  They balance your, your immune system. So I started to think, “Well, is there something natural?” I went on quite a big journey in natural health and, and we changed our diets and we looked at things like that as well. And, and especially for him. And, um, I realized that actually there may be something natural that could balance his immune system  that wouldn’t be so toxic. Because I kept being told, that if we kept giving Alfie steroids, it could cause him to have a heart attack or it could cause psychosis. And we did have, um, a condition as well, PCH19 does cause behavior problems in children because of the way it affects the brain. So, we were really, you know, against it to be honest.

And, um, I came across medical cannabis basically. I just kept looking and searching and I found lots of sites on Facebook, where people were discussing using cannabis for children — in America mostly. And I thought, “Well, this is really interesting,” because, some people were reporting a massive reduction in seizures, some people reporting cognitive improvement. Um, I ha- I joined, uh, a really good, uh, site called whole plant for cannabis which is based in America, that’s for autism.

Elana:  Yeah.

Hannah:  But there is, uh, advice for epilepsy. And seeing videos of children who were punching holes in walls and then suddenly sitting there quietly watching telly-

Elana:  Yeah. Amazing.

Hannah:  … with their family. It’s a miracle. And I just thought, wow. And we were being told by doctors all the time that Alfie could die. And I just kept thinking to myself, “Well, if I have to stand by his graveside … I did get … It makes me feel quite upset to even think about it. I want to know as a mother, that I’ve done everything I can to keep him alive and I don’t care if it’s illegal in the U.K., I want to try it.

Elana:  Yeah.

Hannah:  So I went to see his neurologist and said, “You know, I’ve done research into medical cannabis and anecdotally, it looks like it’s something we want to try.” And he told me about the Epidiolex trial which was going on at the time and he, we did apply for that trial. Unfortunately, we were refused that trial because Alfie didn’t fit the criteria, i.e. he doesn’t have Dravet LGS.

So I then said to him, “Okay, well, we would like to use some, you know? We’re gonna think about how to do that and I don’t want to do anything illegal, but how can we do that?” And he basically said to me, “If you talk to me again about using cannabis with your child, I’ll report you to social services.”

Elana:  Wow.

Hannah:  So I was like, “Fine, okay.” Um, that relationship is gonna end. [laughs].

Elana:  Yeah.

Hannah:  So I went and found another doctor who, at a different hospital who’s really good. We went and had a month in this hospital where he tried lots of other things. We have immune, we used immune globulins and they did abate, but they didn’t stop the seizures for three months. And we were told if immune globulins worked, that it was likely that they would work for three months.

But it didn’t work like that. But we know his immune, his, his epilepsy is based in an immune function problem because of the way he responds to treatment.

Elana:  And you’ve got zero precedent here to work on. No?

Hannah:  Well, exactly. And, and, again, I probably sound like a bit of a, sort of, I’m not in the sense of, Western medicine. Western medicine is treating a condition. I think we should treat his symptoms.

Elana:  Right.

Hannah:  Let’s forget PCDH19, ‘cause that doesn’t mean anything. That’s an umbrella term. There’s 163 mutations on the gene for PCDH19. It doesn’t mean anything.

Elana:  And if he’s not experiencing the symptoms, then-

Hannah:  He’s not responding to treatment like other children do with PCDH19 —he doesn’t respond to anti-epileptics. Actually, anti-epileptics make his seizures worse.

Elana:  Wow.

Hannah:  So, for me, I’m not a doctor, but I was like, “Well, let’s, let’s look at his symptoms. His symptoms are, he has seizures and then when he’s given steroids, they stop. So, you know, let’s look at that.” So, I talked to this doctor about it after we had a month in the hospital and he said … And I said, I’d like to take him to Holland and I’d like to treat him with cannabis. And he said to me, and his words were, “You have no choice because if you don’t try, you’ll never know.”

And I thank, thank the Lord that I met a doctor that actually-

Elana:  Ugh, amazing.

Hannah:  … was supportive of my choices and his father’s choices, decision for our child. So, um, that was in July, 2017 and in September, 2017 we traveled by ferry to the Hook of Holland- uh, to live in Holland. And, with our daughter who was three at the time, and me and Drew and our car packed up. And it was the most terrifying thing I’ve probably ever done is to go and live in a country where I don’t know the language.

And I don’t know, I’ve never been before. Um, we would have liked to have gone to America, to an epilepsy center or Canada to an epilepsy center, but we just couldn’t afford it.

Elana:  Right.

Hannah:  We just, you know, we didn’t have the money. I was a full time [caregiver] earning 60 pounds a week and my partner’s a tree surgeon. Yeah. I mean, we didn’t have the money. And so, we went into Holland because we had the 111. So, we knew we could get emergency care for free — because he was still in hospital every week when we went into Holland. So we had to time it that, he didn’t have a seizure while we were on the ferry. And I remember the night before we were going to go on the ferry, being awake all night thinking, “Please don’t have a seizure, please don’t have a seizure,” because we wanted get to Holland. I mean, it was incredibly stressful. And we went and lived there for five months and we found an amazing, before we went we found an amazing pediatric neurologist who works in The Hague, at a children’s hospital. And at the time, she was doing a small trial using Bedrolite, which is a high CBD, low THC product that Bedrocan make in Holland.

Elana:  Mm-hmm.

Hannah:  Well, they don’t make it, they grow the flower and they sell it to the pharmacies who make it and we started it on the 17th of September. And the first six weeks it didn’t do anything, which was very frightening, because I thought, “Oh God, it’s not going to work.”

Elana:  Yeah.

Hannah:  And then, once we got to 150 milligrams of CBD, he had, I think, 17 days without a seizure.

Elana:  Wow. Had that ever happened before?

Hannah:  It had, when he was younger. That’s why I said, he used to have a go every eight months.

Elana:  Right.

Hannah:  But, in the recent times, from age five to age six, he was in hospital every week with hundreds of seizures. So, to go from s- every seven days to, to a 17 day gap was massive.  So we carried on and we got up to a dose of 300 milligrams of CBD.

And we added in a very small amount of pure THC extra. And, um, from when he was put back on the product after we came back to England, which I can talk to you about as well. Um, he had, uh, 10 months with no seizures-

Elana:  Wow.

Hannah:  … which was amazing.

Elana:  And why did you decide to add in the THC at that point?

Hannah:  Uh, just because we wanted to see, if a little bit of extra THC … It was only three milligrams would just help with seizures. And we did go 41 days with no seizures.

Elana:  Wow. So it did help — that combination.

Hannah:  Yeah. We felt, I, we felt — Bedrolite has THC in it already, but a low dose of it.  So we just started in a little bit extra to make the ratio different. And that’s what I like about, that sort of product is that, you can change the ratios.

Elana:  Sure.

Hannah:  Whereas these fixed ratio products, I’m not so keen on because if you, your child, some children with epilepsy just cannot tolerate THC-

Elana:  Right.

Hannah:  … and then they can’t have the product. So I think it’s really important to have that ability to change ratios for different people. Because well, it is an individualized medicine and I think that’s something where everyone must remember that, you know, we can talk to. We’re blue in the face about, um, sort of, algorithms of how we prescribe. But, actually, it’s not about that. It’s about, people and it’s about everyone’s individual endocannabinoid system needing something different depe- … It’s not about your symptoms necessarily, it’s just, we are just unique people and we need to just, try a product and start slow and go slow and see what happens. And that’s what we did and that’s what worked for us.

Elana:  Right.

Hannah:  So after five months, we felt that we had enough evidence to come home. So our doctor wrote a very detailed report and we had an EEG showing real improvement in brain activity which was great. Um, and, but we had to come home and we had to fight it, because obviously in the U.K., it was illegal.

Elana:  Yeah.

Hannah:  So we couldn’t get … Our doctor wanted to prescribe it but he was blocked by his trust from prescribing. So, we then, had to basically get, uh, a license, I had to schedule 1 license to allow doctors to prescribe. So, we came home and we had to take Alfie off the products, so we weren’t committing a crime, which was really hard.

Elana:  Wow.

Hannah:  And he ended up in hospital again every 10 days, every week to 10 days with seizures, which was very hard. But we started to campaign in February, 2018, when we came home with a campaign group called End Our Pain, which are, a campaign group, a lobby group on medical cannabis, on prescription.

And I’m very lucky that I met them through my mom who had spoken to the APPG on drugs reform in the government and they put him into, you know, it was just one of those things. Put in touch with your call.

Elana:  Yeah.

Hannah:  And I met a guy, the guy, Peter Carroll, who’s the director of End Our Pain. And I remember him saying to me, “This is going to be like a roller coaster. There’s going to be lots of ups and lots of downs. Are you ready?” Sort of thing. And I said, “Absolutely. You know, this is the right thing to do.”

Um, so we went on, the first interview was 26th of February with BBC breakfast, which is a, a very, sort of the, the daytime program on BBC. And I remember the producer just saying to me, “You’ve just got to go for it. You know, just be honest, be open.” And I, I did, I was really emotional, because I felt like, I shouldn’t be sitting on breakfast TV begging for a drug that my child needed.

Elana:  Sure.

Hannah:  They should just be having it. Um, and we ended up meeting the prime minister in March which was great because she um, we were getting a lot of media, which was brilliant. The media have been really good in the U.K. about this actually. I think they’ve been very, very supportive and that’s really, really helped move everything forward in the U.K.

Elana:  This story has gone all around the world.

Hannah:  Yeah. And we met the prime minister and she agreed that, our doctors could apply for a schedule 1 license with the Home Office, which hasn’t been done before. It’s only ever been pharmaceutical companies, whilst it’s been an illegal drug.

Elana:  Right. What does that mean, that schedule 1 license?

Hannah:  It just means that the doctor is legally allowed to prescribe a schedule 1 medicine.

Elana:  Got it.

Hannah:  Because schedule 1 means it has no medicinal value.

Elana:  Yeah.

Hannah:  So, it’s like basically saying to, you need a license to, it’s like, okay, I suppose, you know, heroin is a schedule 1 product.

Elana:  Right.

Hannah:  It’s like you’re …

Elana:  It’s a bypass.

Hannah:  And that’s why I find it amazingly crazy to think that that was in the same scheduling.

Elana:  Of course. Yeah.

Hannah:  It’s madness. And, you know, initially the government said that there was no medicinal value to cannabis and that they wouldn’t help me.

And then I’m at the home office and then I met the prime minister and she said, “Okay, you can apply it, your doctors can apply for this.” But we had to work with the Home Office really closely because it had never been done before. So they were trying to put a pharmaceutical process on to an individual, which doesn’t work.

Elana:  Okay.

Hannah:  So in that sense, they had to go through a lot of the legislation to enable that to happen, which was really good. because it enabled them to understand the legislation, the rules and regulations and help us to, you know, to help … And, and, and I think the people in the home office that we came into contact actually really did want to help us. And they did, uh, especially the head of, um, the drug … I mean, where they were dealing with the minister for fire and policing because it was an illegal drug.

Elana:  Oh, I see.

Hannah:  In the Home Office, we weren’t dealing with Department of Health, which was, you know, crazy. So, yeah, on the 18th, 19th of June, we had been working with Home Office for three and a half months. We’d had a meeting the week before with them to say, you know, “What’s going on, we need this license urgently.” 

And they said, “Okay, we’ve got all the information that we want. Um, there’s nothing else that we need.” And then on the Monday, the 18th of June, I was phoned by the chief of staff and he said, “Oh, but there’s just a few more things.” 

And I just went nuts. I’ve met, I’d waited three and a half months and my child was sick and the next day I went on to Radio 4 on the Today Program, which is a famous, you know, radio program that all MPs listen to and I just talked about my meeting with Theresa May and I said, you know, “She met me, she looked me in the eye and she promised to help me and I’m the mother of a very poorly child and that’s not okay.” You know, “We’re not, we’re not playing politics. This is, I’m a mother and I need help.”

And three hours later we were issued with the first medical cannabis license in the U.K.

Elana:  Amazing.

Hannah:  Because, I’m afraid to say, I didn’t want to do it, but you know, you have to embarrass people sometimes to get what you want. And we did.

Elana:  Yeah, well, that’s advocacy, right?

Hannah:  Yeah, exactly.

And then, on the 1st of November, 2018, after the home secretary announced that there would be a review into cannabis, the chief medical officer wrote a report saying that there was, substantial evidence to show that cannabis can help with certain medical conditions. And the 1st of November, 2018, the law changed, which we were over the moon about, because our story was part of that change. And, unfortunately, their access is not forthcoming. And that’s something that I now work very hard on, um, to, to get that for, for, for all patients because, it’s really important to me that, um, it’s not just Alfie that gets his medicine.

Elana:  Right. So this was, uh, what I was going to ask you. So the doctor got the license to be able to prescribe, was it the Bedrocan products?

Hannah:  Yes.

Elana:  And you were able to keep giving him?

Hannah:  Mm.

Elana:  Okay.

Hannah:  Yeah. So we re-introduced that and that’s when he went 10 months with no seizures at all. We have seen, unfortunately in the last year, we’ve seen some reoccurring seizures without f- … Um, he does have a very refractory condition. His quality of life is still massively improved.

And when he’s well, he’s really well, um, but he has, he probably has a couple of seizures now every couple of weeks. Um, because we do need all the products we need choices. And, what you do see in children with epilepsy especially is tolerance to a product. It’s the same as antiepileptic, same as opioids, same as any drug. Because the body gets used … It’s the same as alcohol, your body gets used to it. And, um, so for me, having a U.K. open, uh, industry where choice is available to patients so, you know, I, you speak to, obviously there’s a lot of advocates in the U.K. for growing your road and you speak to some of these people and they cycle six or seven strains, , illegally, obviously. Um, which is not my fight and I don’t get involved with, but I do come, I do obviously do talk to people like that.

Elana:  Sure.

Hannah:  And is, that’s, they say that’s the most effective way at, um, getting relief of your symptoms. But that isn’t possible in the U.K. market at the moment. There’s about three products, [laughs], available and that’s only privately. So, um, I really want to be able to try other products with Alfie. I’m always, very clear about this, this is no cure. My son still has a horrible genetic condition, which causes him problems.

Elana:  Right.

Hannah:  But, he’s out of hospital and he’s at school most days and he’s learning and he’s happy and I can work. Before I couldn’t do anything. I was a full time [caregiver] watching my child fade away. So that’s why I feel so strongly about it because it’s about giving people with chronic illness a better quality of life.

Elana:  Sure. Uh, it’s great to hear that Alfie is at school.

Hannah:  Yeah.

Elana:  How does the community kind of react to his treatment, to your battle to get him this treatment?

Hannah:  I’m very, very lucky actually, I’ve got, I mean, as I say, my mom was a big part of our, um, our campaign. She did a lot of work, when we did our campaign on lobbying MPS and talking to people. And, I’m very lucky. I have a very supportive family. My partner’s sister does so much for us and, and, we’ve never been judged.

I mean, I remember when I first said to my mom probably three, four years ago I wanted to use cannabis with Alfie or I was looking into it. I think she thought, “What?” [laughs].

Elana:  Right.

Hannah:  You know, like because, we’ve all grown up in the last 60 years of cannabis prohibition-

Elana:  Sure.

Hannah:  … where people are told that it’s dangerous and it sends us all mad. And, you know, but I think because what I say and what it was really important for me is to inform myself. So I think if you’re fighting, uh, for something, you need to be informed. You need to know what you’re talking about because if you don’t, you’ll come on stuck.

And that’s what I say to all parents, and, and it’s the same to my mom. I told her what I knew and she was like, “Okay, this is interesting.” So, no, we’re very lucky. We have a really supportive community. I’m glad actually where I live, I don’t think anyone knows who I am. Why should they? I don’t want them to. 

Elana:  Very nice. I understand. Yeah.

Hannah:  But it’s good that people have supported us, you know. On, on Facebook and Twitter, we get loads of support. I’ve had one or two comments of, you know, when there’s a national thing — people saying that it causes psychosis. But, mostly the public are extremely supportive. And the, actually even the people in the media that I meet, all of them say, “I can’t believe this isn’t available to you yet.”

You know, “It’s been 18 months.” And parents and are paying thousands of pounds every month to gain a prescription that Alfie has on the NHS. That’s not fair. It’s not fair. And there needs to be a solution.

Elana:  Right. Well, I guess it’s, you know, it’s a very relatable story. A mother trying to take care of her child.

Hannah:  Yeah, exactly.

Elana:  It’s as simple as that.

Hannah:  Yeah.

Elana:  What does Alfie have to say about his medication?

Hannah:  He has learning difficulties. He has behavioral, um, he’s probably got the mental age of a three year old. He’s eight. 

He says medical cannabis. He knows what medical cannabis is. He doesn’t like the taste of it. And that’s why I was talking earlier in my panel about bioavailability and how, if a company or a scientists can come up with a way of getting a lot of CBD into a child without, with no taste, I think maybe, you know, very successful. Because…

Elana:  So far it’s just oral ingestion, right?

Hannah:  Yeah. So, yeah, he takes, he takes oral oil, which he takes about, probably four or five [milligrams] a day because he has THCA as well. And he also has a CBG isolate, which is an anti-inflammatory. So we use that as well. He has to take a lot of oil and it doesn’t taste very nice, so— But he does really well. And, he, I think, he, I don’t think he really knows that that he’s better than he was, but he’s happy.

Elana:  Right.

Hannah:  And that’s most of the time, I mean, it’s not perfect.

Elana:  Sure.

Hannah:  We have bad days, you know, we have really bad days sometimes. If he’s had a couple of seizures and he’s not feeling good and, you know, but mostly we have good days.  And that before we mostly had bad days.

Elana:  Right.

Hannah:  You may have one good day every few weeks, whereas now, it’s the other way around. We have one bad day every few weeks. So-

Elana:  Yeah. It’s all about changing that balance-

Hannah:  Yeah. Yeah.

Elana:  … the quality of life.

Hannah:  And I need to know as his mother, I’ve done everything I can to help him be happy.  That’s really important to me.

Elana:  Definitely. So what are the next steps for the U.K. in terms of access and regulation?

Hannah:  Well, basically we have really good legislation. When the law was changed doctors on the GMC register can prescribe any GMP, it has to be GMP, but any product, any GMP product for any condition. So there’s no restriction on conditions. So in that sense, we’ve got some of the broadest legislation in the EU, although we’re not in the EU anymore, which is so sad.

Elana:  Separate story.

Hannah:  That’s a separate … B word. We don’t talk about that in our house.

So we’ve got good legislation. The problem is, is that the guidance is very restrictive. We have an institution called NICE, which is a National Institute of Clinical Excellence who, um, basically write guidance on whether something is cost effective and whether it’s safe.

And with medical cannabis, they’ve said that they don’t think it’s cost effective and there’s not enough evidence to prescribe. So obviously doctors are freaked out and said, “Well, we can’t prescribe.” We are seeing doctors being privately trained and there are private clinics now. I think there’s two main private clinics in the U.K. which doctors are working in. But unfortunately, there’s no pediatricians at the moment. So I think there’s about 180 odd private prescriptions in the U.K., which is fantastic.

Elana:  And what are they prescribing? What products are available?

Hannah:  Um, we have Bedrocan, we have, , Aurora, I think, we have Tilray, we have …

Elana:  Okay. So, the whole plant products, exactly?

Hannah:  Yeah, yeah. And there’s a lot of, quite a bit of flower prescribing for pain and things like that, but mostly it’s oils. So, it’s a good move in the right direction. But I just think at the moment there’s a lot of stigma about prescribing. So doctors are not allowed. And because in the NHS they have to go through so much bureaucracy because a doctor can’t just prescribe a drug, it has to go to their — you know, internal medicines board or their clinical director to say, “I want to prescribe this. Are you okay with that?” And they’re just going to say no.

Elana:  Right.

Hannah:  Because there isn’t the RCT data to, to back them up. And again, this all boils down to negligence. And that really makes me very sad because I feel like doctors can’t exercise their will as a professional to choose what’s right. So, like the families for example, that I know all have prescriptions, their doctors are saying, “This is great, um, fantastic, but I can’t prescribe.” I mean, that’s ridiculous.

Elana:  Right.

Hannah:  So at the moment, that’s the way we are in the U.K. We had a big event last Wednesday where we were lobbying MPS and the End Our Pain campaign team met with Matt Hancock who’s the secretary of state for health.  And he told them all the problems that there are, uh, there’s an issue with, uh, at the moment, there’s no bulk input allowed.

So it has to be one patient, one prescription for one month supply, which is ridiculous. Because, before we even got the first prescription and they’re having to have their second prescription. So, if a doctor prescribes in a clinic now, they’ll be looking to wait for at least six to eight weeks for a product.

That’s ridiculous. They should be able to go to the pharmacy and get it off the shelf like any, like most of the drugs. So that’s something that’s an issue and I hope that that’s sorted out. The bulky, bulk supply issue will be sorted out quickly. And we’re hoping to, um, get, he has promised to get a round table of the stakeholders. So, NICE, the [inaudible], the Home Office, etc., around the table to talk about what the problems are.

I won’t be part of that meeting, but I did a lot of media around it last week to try and push that forward because I feel that we can find a solution. He’s not talking now about evidence as much as he’s talking about cost. And the reason that the cost is so high is because of the restrictions on the import. So I’m hoping that, you know, we’ll move forward. I mean, we won’t leave it until it is better for people because I know what it’s like to be the parent of a sick child and it’s not fun.

Elana:  Right.

Hannah:  Not fun.

Elana:  It sounds like things are moving in the right direction.

Hannah:  Yeah. And they are. And I think that’s, really, really good and really important. It’s not quick enough for people who’ve got very sick children or who are in pain. But, we’ll keep trying. 

Elana:  Yeah, absolutely. Hannah, thanks so much for talking with us here today.

Hannah:  Right.

Elana:  It’s great to hear about the progress and also that Alfie is doing better. It’s the most important thing.

Hannah:  Thank you. Thanks a lot and thanks for having me.

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