From Stigma to Support: The Role of Patient Advocacy in Medical Cannabis In this enlightening episode, I had the pleasure of speaking with Berta Kaguako, a passionate medical cannabis patient advocate based in the UK. Berta's journey into patient advocacy began due to her personal experiences as a medical cannabis patient and her professional background in healthcare management.
In this enlightening episode, I had the pleasure of speaking with Berta Kaguako, a passionate medical cannabis patient advocate based in the UK. Berta's journey into patient advocacy began due to her personal experiences as a medical cannabis patient and her professional background in healthcare management.
Berta shared her insights into the challenges faced by medical cannabis patients, including stigma and discrimination from various sectors including law enforcement, healthcare, and the workplace. Her advocacy work is driven by her own experiences and the discrepancies she observed in the treatment of medical cannabis patients compared to those prescribed more traditional medications like opiates.
During her tenure as a CQC registered manager at a medical cannabis clinic, Berta dealt extensively with patient complaints and legal challenges, which further fueled her commitment to patient advocacy. This role highlighted the systemic issues within the healthcare system regarding the acceptance and understanding of medical cannabis.
Berta now works with a platform soon to be known as Patients Can, which aims to support medical cannabis patients through education, advocacy, and direct support. The platform offers resources such as peer-to-peer support, educational materials on medical cannabis, and guidance on navigating legal and workplace challenges related to medical cannabis use.
One of the key services provided by her organization includes conducting roadshows across the UK to educate the public on medical cannabis, demonstrating its legal status, and encouraging those using cannabis illicitly to consider official medical channels. Berta emphasized the importance of a holistic approach to healthcare, where medical cannabis is used responsibly and effectively as part of a broader treatment plan.
Berta's passion for empowering patients and improving their quality of life shines through her work. She expressed frustration with the lack of cooperation and willingness to learn among healthcare professionals about medical cannabis, which often hinders patient care.
This episode not only sheds light on the critical role of patient advocates in the medical cannabis industry but also highlights the ongoing need for education and systemic change to support patients effectively. Berta's dedication to her work and her drive to improve the lives of patients using medical cannabis make her a truly bodacious figure in the cannabis industry.
Listeners can connect with Berta and her work through the Patients Cann platform at PatientsCann.org.uk or find her on LinkedIn under Berta Kaguako
Website:- https://patientscann.org.uk/
LinkedIn:- https://www.linkedin.com/company/patientscannuk/
Facebook, X, Instagram:- @PatientsCannUK
TIME STAMPS:
00:00:16 - Introduction to the Podcast
Introduction of the podcast and host, Susan Burns.
00:00:30 - Guest Introduction
Introduction of the guest, Berta Caguaco, a medical cannabis patient advocate.
00:01:16 - Berta's Background and Advocacy Start
Discussion on how Berta started her journey as a medical cannabis patient advocate.
00:02:16 - Role as CQC Registered Manager
Explanation of Berta's role as a CQC registered manager in the UK and her responsibilities.
00:04:16 - Transition to Patient Advocacy
How Berta's previous experiences led her to her current role in patient advocacy.
00:05:39 - Services Offered by Sunscara Platform
Description of the services provided by the Sunscara platform, including patient support and education.
00:08:50 - Educational Roadshows and Workshops
Details on the roadshows and workshops conducted to educate and support patients.
00:10:35 - Discussion on Cannabis Variability
Conversation about the diversity of cannabis and its effects on different individuals.
00:11:58 - Berta's Personal Experience with Medical Cannabis
Berta shares her personal health improvements since using medical cannabis.
00:12:24 - Favorite and Frustrating Aspects of Advocacy
Berta discusses what she loves about her work and the challenges she faces in the healthcare system.
00:15:03 - Goals and Achievements of Sunscara
Berta talks about the goals of Sunscara and its achievements, including awards and recognitions.
00:16:55 - Advice for Aspiring Advocates and Patients
Berta provides advice for those looking to enter patient advocacy and for patients seeking support.
00:22:00 - What Makes Berta Bodacious
Discussion on what makes Berta uniquely effective and passionate in her advocacy work.
00:23:58 - Contact Information
How to reach Berta and learn more about her organization, Patients Can.
announcer: Welcome to the Bodacious Women in Cannabis podcast, the show where the bold and brilliant women cannabis business leaders share their journey and their expertise. Here's your host, Susan Burns.
Berta Kaguako: Hello, this is your podcast host, Susan Burns, and as a lawyer by profession, in the cannabis industry, nothing delights me more than showcasing bodacious women in cannabis. Today, we are talking with Berta Caguaco, and she is a medical cannabis patient advocate. And I think you're the first medical cannabis patient advocate I've spoken with.
Susan Burns: Welcome, Berta. Yes, we're a rarity. Thank you.
Berta Kaguako: Well, thank you for doing what you do. So how long have you been a cannabis patient advocate?
Susan Burns: So not long now. I have been a patient advocate for about six months now. And what got you into that? What led you into that? So what sort of led me into that is I myself am a medical cannabis patient. And I mean, personally, I don't feel like I had as many barriers as other patients do, because unfortunately, due to medical cannabis still being very heavily stigmatized, we, we patients have to face something that no other patient actually has to face, which is criticism and discrimination when dealing with whether it's law enforcement officers, whether you're going to the hospital appointment, whether you're dealing with, you know, work situation. I've been fortunate enough to not have many of these concerns. However, I was briefly the CQC registered manager for a medical cannabis clinic here in the UK. Hold on, hold on.
Berta Kaguako: You were a what manager?
Susan Burns: Yeah. So what that means. So CQC registered managers. So the regulatory health care provider in the UK is CQC, the care quality commissioners. And you're in the UK? In the UK, yes. And under the Health and Social Care Act, you have to have a registered manager who is legally responsible for the clinic and ensuring clinical governance, regulatory compliance. And as part of my role there, we dealt a lot with patient complaints. And I suppose we're subpoenaed often by courts, by children and families, by the police services because patients prescriptions. Now, I have been a health care professional for many years in a senior management capacity. and I've dealt with patients from substance misuse to mental health and never have I come across having to justify an opiate prescription. However, when it comes to medical cannabis patients, I started to notice of very, very big trend. And that's sort of what inspired me to just, you know, I have a big mouth for the record, I've got ADHD, I cannot keep quiet. And, you know, where I as a patient struggled as well to find my voice, when I finally did, I said, you know what, no, I'm not standing by this. It's a difficult enough experience that we experience in life in general, just trying to navigate your way through life as a patient. So as somebody who has a, you know, unmet health care needs to have to deal with all of this on top of that, where no other patient has to actually deal with this. It was just too ridiculous for me. And I started speaking up. Does that answer your question?
Berta Kaguako: And you started speaking up before you were in your current position?
Susan Burns: Or as part of your current position? Yes, as part. So that's not my current position. I've moved on from there. And I do a lot of consultancy now.
Berta Kaguako: But that's what opened my eyes. Oh, sorry, I interrupted you. Hold on. Let's start over. So you started advocating in your prior position, even though that wasn't part of what they retained you for? Yeah. OK. All right. And then how did you arrive in your current position? So now… Your title is patient advocate.
Susan Burns: Yeah. So basically, after speaking up, I started speaking at, I believe it was a patient conference for the Cannabis Industry Council, where I shared my experience both within the healthcare sector and as a patient. And I was approached by one of my colleagues now to join their patient platform. So we are currently known as Sunscara platform, but we are rebranding as we are registering as a charity to Patients Can. And and I've been with them now for the last six months, helping them navigate their way through registering as a charity. And we offer a variety of different services as well for patients.
Berta Kaguako: So describe what you offer, what types of things do you do?
Susan Burns: So basically, so the platform, and I'm going to refer to it as samskara just because it's still known as samskara right now. Can you spell that for us, Berta? Yeah. S-A-N-S-K-A-R-A. Okay. Yeah, the Sunscara platform. And so basically, it was funded by Mohammed back in early 2022. Towards the end of the year, he did register with the Cannabis Industry Council here in the UK, and became a nonprofit organization. The point of And now I'm getting myself confused. Sunscara. But I reckon that's one of my symptoms. So get used to that. But yes, so the point of Sunscara is to offer patient advocacy. So we do a lot of different things. One of them is peer to peer support. So what that means is whenever we have patients that have any issues, whether it's at work, whether it's in the community, whether it's at home, it's usually at work or by the police, they would get in touch with us and we would support them and signpost them to various different organizations that can help On the website we have a variety of different information, so it varies from a few publications that Mohammed has done, we have done a few publications on medical cannabis awareness, we have done a few publications on ensuring that there's information there for all of the different clinics and the different pharmacies in the UK, Guidances around driving, guidance around work and legislation around that. There's a lot of different materials that's available there. And we sometimes redirect them to these materials or we help them. For example, a recent one was a patient was challenged at the hospital and they were in A&E and were refused to take their medical cannabis medication. What's A&E? Oh, sorry. Accidents and emergency. I keep forgetting the two different countries. Yeah. So the emergency unit at the hospital and they were refused their medication and, you know, naturally got in touch with us and we are helping them to put forward a complaint. So we do a lot of different things. Sometimes it's just handholding and just supporting the patient when they are just feeling a bit overwhelmed. And sometimes it's something more in depth as in supporting with complaints. We also do roadshows. So we go out to different parts of the UK. Some of the areas we covered last year were Kent, London, Brighton. And we would do some workshops and showcase various different vaporizers, various different terpenes, show people how to vape, make it aware to people that medical cannabis is legal. Because some of the stuff that we also do while we're out on these roadshows is trying to encourage people who use recreationally Sorry, that word's not happening for me today. But people who use illicitly to transfer onto a prescription and sort of recognize that they're self-medicating. My background's in psychology, so I like to do a lot of education around that, and it's in substance misuse as well. And we try to transfer them over to a prescription, speak to kind of as naive patients who might just have some queries around their medication.
Berta Kaguako: And I like that phrase cannabis naive. Oh, do you? Is that a UK phrase? I don't know. I haven't heard it before. It may be used in medical cannabis here. I'm more on the recreational side.
Susan Burns: But yeah, okay. Good phrase. So a lot of the times they would be the most nervous patients because they are aware of all of the stigma but due to desperation have decided to try medical cannabis and are just very nervous and it's just around guiding them and educating them on the medication and helping them to understand how you can use this medication as part of a holistic approach to your health care. We don't want to get into the habit of general healthcare providers here who just prescribe, prescribe, prescribe. We want to ensure that people are using their medication, I suppose, safely, responsibly, and are not- Effectively, right?
Berta Kaguako: Effectively. Thank you. You want to make sure that it's whatever type of prescription that works for them.
Susan Burns: Yes, exactly.
Berta Kaguako: I think there's a misperception out there that all cannabis is cannabis and that it's the same for everybody. And it isn't. It hits us all differently. And there are so many cannabinoids and terpenes and different compositions. It's a miracle plant, in my opinion.
Susan Burns: Oh, no, I say this all the time. I've said it before. I've said it to other people and I've explained to them. I truly feel this is some kind of witchcraft. I was like, what sorcery is taking place with this medication? It is just way too effective. I mean, for myself, I have seven diagnoses and 38 symptoms. And prior to medical cannabis, all my health sort of deteriorated after COVID and long COVID. I was bed bound at least five times a week. I could barely function or do anything. And medical cannabis sort of like managed all of these symptoms where I was taking at least nine different prescriptions with my, you know, conventional health care and pharmacological, whatever you want to call it. It was mostly all replaced with medical cannabis and it I just, I don't know how it does it. It's juju. It's juju. Sorry, juju is a Greek slang for witchcraft.
Berta Kaguako: It's juju. We also do have an endocannabinoid system, which makes it more likely to be effective than synthetic pharmaceuticals, but not to, everything has its place, of course. But what, Berthe, is your, is your favorite part of what you do? What, what makes your heart sink?
Susan Burns: Do you know what, yeah, empowering patients and it's not just about feeling comfortable to use the medication but actually empowering them to have a holistic approach to their healthcare. I am a strong believer of a holistic approach and I feel that a lot of the times just in healthcare in general, in general, yeah, doctors, consultants, whomever is treating you are essentially just treating one part of you. And when you have a chronic illness, it's, it just, I don't even know, it has a ripple effect on the entirety of your life. Every single aspect of your life is impacted. And these are things that are not taken into account. So just because your physical health, let's say you start the medication, it's now being managed, because so much damage has been done in the process before you got to a point where your physical health is now stable. Because unfortunately, a lot of the times, especially with chronic illnesses, it could take up to two years for your health to stabilize, meaning you've got difficulties at work. A lot of people have already left work. And just having people be able to pick up the broken pieces of their life again, and just supporting them to do that, because that is not an easy thing to do. I don't know what is going on with my role today. That is not an easy thing to do. And just being part of that journey with the, like, yeah, that's, yeah, that's what gets me up out of bed.
Berta Kaguako: Nice. How about the most frustrating?
Susan Burns: The most frustrating is people, healthcare professionals, whether it's the industry or outside the industry, just not working together. We all have the same goal, and that goal is supporting patients and helping treat patients. It doesn't matter what medication that patient is using, if it's helping them, especially if it's helping them much better than the medication you are prescribing, then that should be taken into consideration. The fact that I even have to say that I shouldn't even have to say that it should just be a given and then get on with the treatment. There is too much. judgment. There's too many health care professionals just not working alongside each other. And I just feel that what's being lost is the patient. It's all about this and finances and that. And there's so many different things that everybody wants to make it about. But patients are not at the forefront anymore. And that is part of why we are revamping Sunscara into patients can. because we want to bring patients voice and representation back to the forefront. And it's a crucial thing of what we do. I think one of the things I forgot to mention earlier was that last year we won the Best Medical Cannabis Advocacy for 2003 by the Global Health and Pharma. And we have been nominated this year for UK Enterprise Award. So, you know, we We just want to be able to get healthcare professionals and patients to work together so that we can start addressing a lot of these concerns. And I feel that no one's working together.
Berta Kaguako: No one. Hard. Yeah. Yeah. We're just even in the regular medical system. I don't know what it's like in the UK, but here, if you have a headache, you see one doctor and then you see somebody else for your back and somebody else for your foot. I mean, it's like you're, the medical profession has you already, you know, you're already dissected. And you're not a cadaver, but it's like, and nobody's looking at the whole, that's just medical without, you know, the need for the vast need for education in cannabis, whether it's medical or any other, like judiciary or lawmakers. And that's a huge learning curve, right? To learn about the plant and what it does and all its properties and what's safe and what isn't. and all those things, it's complex. So not to think that everybody should be aware of all the things, but to make the time to educate and allow yourself to be educated, I think. Would you agree with that?
Susan Burns: And I think, yes, yes. I'm over here smiling because you hit the nail right on the head. Allow yourself to be educated. So we face the exact same challenge over here. Again, I just like to use myself as an example. I've got 38 symptoms. Some are musculoskeletal, some are nerve, some are, sorry, nerve system related, some are bone. And so I have, I'm open to various different departments. they do not speak to each other. Why would they? No, but I agree, the willingness to learn, especially when it comes to medical cannabis, because again, it's cannabis, it's associated with delinquency. And so the minute you even mention the word medical cannabis, no one even wants to know about it. I would often try and educate my health care providers and say to them, like, you know, but you need to know a little bit. And they're like, oh, well, well, that's between your doctor over there. And I said, well, no, actually, you need to know all the medication I'm being prescribed because medical cannabis full stop impacts the enzymes in your liver, which can interact with the medication that you are about to prescribe me. So you need to actually know this medication. And that's how I get them to finally sit down and agree that, oh, from a health care perspective, I guess I should know. But again, I can say that because I have this knowledge. I've worked in the sector. I've worked in health care. Somebody like the ordinary patient, they wouldn't be able to advocate for themselves in this way. Sorry, I'm going to keep going on and on because I get really annoyed when I start talking.
Berta Kaguako: Yeah, I know. And not even to ask the forums, they ask about your tobacco use, your alcohol use. And then they ask about drug use. Well, if I use, that's recreational. So they wouldn't necessarily ask about that. Or we have a lot of hemp in Minnesota, the hemp-derived products that have THC that, as you said, would interact with other medications. There's just such a big gap in knowledge, I think. Well, do you have any advice for people who are wanting to be in the field of patient advocacy or maybe patients who don't have an organization like yours?
Susan Burns: The first, okay, to answer the first one, my advice would be speak up, tell your story. I think the more of us that speak up and explain to people, sorry, let me rephrase that again. Speak up, tell your story. I think it's really, really important. Unfortunately, because cannabis is associated with delinquency, with so many different things, and particular substance misuse. A lot of people have this sort of notion that we were taken to legitimize our use. I think when people start to understand that actually prior to me taking medical cannabis, I was on nine different prescriptions. I was bed bound. I could barely function as a human being. um and well i just didn't even want to live like it was such a horrifying experience and how medical cannabis sort of transformed my life in that way once people hear that they start to understand actually these are genuine patients so i think the more you speak up it is very very nerve wracking, you know, I do get it like, you know, sitting there and being so vulnerable and exposing all of your, I suppose, what we would consider flaws. But at the same time, I think it's really, really important, too, because this is what's going to empower more and more people to get on a prescription and also the people that are using their prescription to feel confident and comfortable using their medication. And in terms of not having representation, if you're in the UK, hit us up. We will help you. And there are a variety of different services across the globe. So whatever part of the world you're living in, they do have patient advocacy. It probably just, sorry, might not be so popular. But if you were to Google it, you would be able to find out.
Berta Kaguako: OK, so do the internet search for patient cannabis, medical cannabis patient advocacy near you.
Susan Burns: Yeah. I am terrible with remembering anything. So I do know a lot of various different acronyms, but I can't remember them right now.
Berta Kaguako: That's okay. We don't need acronyms. People can use the internet. Bertha, you know, I'm going to ask you this. What makes you uniquely bodacious?
Susan Burns: For me, But for me, I sort of feel like my bodaciousness comes from my, I suppose my drive and my passion to support people. And that's always been throughout my entire life. I've worked in the healthcare sector. I've always wanted to support people. And I've always ensured that I maintained my integrity throughout the whole process. And I know there have been times where people did try and do, and I'm like, nope, Because at the end of the day, it's not about a career. It's not about money. It's about patients and improving people's well-being. And I know for myself how much my well-being has improved having used services. And this is even before medical cannabis and why I went into health care sectors. And it took me a while to find my voice. So now that I have, I am not keeping quiet.
Berta Kaguako: And I want to ask you about that. What drives that? I mean, a lot of people help other people, but what's underneath it? What makes you Berta? And what drives your drive?
Susan Burns: What drives it? I guess it's because of my own experience. I've used services growing up, and it again saved my life. And that understanding that just having one person that actually cares makes a whole difference to your world. And had I not had this opportunity, I don't know where I would be in life right now. And so to be able to give the opportunity back to other people is for me just what drive is what gets me out of bed in the day. I couldn't work anywhere else. I couldn't do anything else. Like, I just wouldn't be happy.
Berta Kaguako: And where can we find you? Oh, I want to reach you. Can we follow your organization?
Susan Burns: Yes. So I'm, I'm going to give you the patients can details actually, because I believe by the time this is aired, we will be patients can. So if you can find us on PatientsCan, so that's p-a-t-i-e-n-t-s-c-a-n-n.org.uk, or you can find me on LinkedIn. My name is Berta Kaguako, so that's spelled, oh no, I think it's actually written there at the bottom, and through there you will see I am linked with PatientsCan through there as well.
Berta Kaguako: Let's spell it, Berta, B-E-R-T-A, K-A-G-U-A-K-O. Yeah. Yeah. Great. Thank you, Berta, so much for making time out of your what I'm sure is a very busy schedule to talk with us today.
Susan Burns: No, thank you so much for having me. Again, any opportunity that we get to advocate for patients, I am all on board. So thank you so much.