#1742 Penny Drop - Part 1
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DAFNI, a UK-based program teaching dose adjustment for normal eating, while discussing the evolution of diabetes management and the vital importance of peer support.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner (0:00) Hello, friends, and welcome back to another episode of the Juice Box podcast.
Liesl (0:13) I work for an organization called DAPHNE. (0:15) So DAPHNE stands for dose adjustment for normal eating, and it's a not for profit part of the NHS. (0:22) And we provide education for people with type one and type two diabetes.
Scott Benner (0:28) Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. (0:33) Always consult a physician before making any changes to your health care plan or becoming bold with insulin. (0:46) Have you tried the small sip series? (0:49) They're curated takeaways from the Juice Box podcast, voted on by listeners as the most helpful insights for managing their diabetes. (0:56) These bite sized pieces of wisdom cover essential topics like insulin timing, carb management, and balancing highs and lows, making it easier for you to incorporate real life strategies into your daily routine.
Scott Benner (1:07) Dive deep, take a sip, and discover what our community finds most valuable on the journey to better diabetes management. (1:14) For more information on small sips, go to juiceboxpodcast.com. (1:17) Click on the word series in the menu. (1:30) The episode you're about to listen to was sponsored by Touched by Type one. (1:35) Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org.
Scott Benner (1:41) Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. (1:48) Touchedbytype1.org. (1:51) The podcast is also sponsored today by Tandem Mobi, the impressively small insulin pump. (1:57) Tandem Mobi features Tandem's newest algorithm, Control IQ Plus technology. (2:02) It's designed for greater discretion, more freedom, and improved time and range.
Scott Benner (2:06) Learn more and get started today at tandemdiabetes.com/juicebox. (2:12) Today's episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the one year wear CGM. (2:19) That's one insertion a year. (2:21) That's it. (2:22) And here's a little bonus for you.
Scott Benner (2:24) How about there's no limit on how many friends and family you can share your data with with the Eversense Now app? (2:30) No limits. (2:31) Eversense.
Liesl (2:33) So, yeah, my name's Liesl. (2:34) I'm a diabetes specialist nurse by oh, there's my phone. (2:38) I thought I'd put that on silent. (2:40) Sorry about that.
Scott Benner (2:41) No. (2:41) It's okay. (2:41) It's a great intro. (2:43) Don't worry.
Liesl (2:43) I no. (2:44) I did put it on silent. (2:45) It was to remind me to log on to this if I hadn't already done it. (2:49) So that's what that's all about.
Scott Benner (2:50) Lisa. (2:50) Lisa. (2:51) Hold hold on a second. (2:52) First of all, I definitely think we have to call this episode Lisa Lisa cult jam, but that's a different problem for a different time. (2:58) What do you mean you put on a timer in case you forgot?
Liesl (3:02) Oh, well no. (3:03) Because I was I had to do some training before this that I wasn't expecting to do, so I was gonna have lots of time to prep. (3:09) Gotcha. (3:09) And it was if I got carried away with the training, but I left them early because I was so conscious I didn't wanna be late for you that I left the training early and left a colleague to take over from me. (3:18) So Oh.
Scott Benner (3:20) There a sick is there a sickly person in England now because you had to be on the podcast? (3:24) What's going on?
Liesl (3:26) No. (3:26) No. (3:26) No. (3:27) No. (3:27) It's fine.
Scott Benner (3:27) It's all good. (3:28) It's all good. (3:29) Tell me, Lisa, a little bit about, your job. (3:32) What is it you do?
Liesl (3:34) I work for an organization called DAFNI. (3:37) So DAFNI stands for dose adjustment for normal eating, and it's a not for profit part of the NHS. (3:44) And we provide education for people with type one and type two diabetes, which is free of charge. (3:50) And we also provide education for health care professionals who work in diabetes. (3:55) And we teach them about type one diabetes, type two diabetes, and also how to teach that education to the people they work with and support who have got diabetes.
Scott Benner (4:06) Would it fry your mind if I told you that today there's an episode up called sneaky chocolate bar? (4:14) And, sorry. (4:15) That part isn't what I thought would fry your mind, although I guess maybe it would. (4:18) And Danny, who is from England, is, telling his story in two parts. (4:23) And in the first part, it becomes completely clear to me that he does not know how to take care of himself until he finds the Daphne program.
Scott Benner (4:32) Mhmm. (4:33) Did that does that surprising to you?
Liesl (4:35) Not at all. (4:36) I have been involved in DAPHNE now for twenty years, I think.
Scott Benner (4:41) Wow.
Liesl (4:41) So I was a diabetes specialist nurse, and I was actively looking for a job outside of diabetes because I felt I had nothing else to offer. (4:51) And a new consultant joined the team and said, we've got to do this Daphne course. (4:56) We have got to do it. (4:58) And so I got sent to do my Daphne educator training, and I was really not that keen. (5:04) I thought everyone's going to eat pizza and chocolate cake and put weight on, and it's going to be dreadful.
Liesl (5:11) But I went to a Daphne center to watch a Daphne course in person for a week. (5:16) And as I sat there, I thought, this is so obvious. (5:20) I should know how to do this like I just know how to breathe. (5:24) I couldn't believe what I was learning and how much I hadn't known before even though I'd been a diabetes specialist nurse for, I think, six years at that time.
Scott Benner (5:34) So I wanna go back
Liesl (5:35) that surprise me now.
Scott Benner (5:36) You know? (5:37) Yeah. (5:37) Give me a second here. (5:38) So you you were a diabetes specialist nurse already for six years. (5:43) You felt disenfranchised or or just just maybe I don't how you felt exactly.
Scott Benner (5:48) We'll find out exactly. (5:49) But you're thinking about getting away from it. (5:51) A friend says, let's try Daphne. (5:53) And your first concern back then was that if we teach these people how to use the insulin, they're just gonna eat a lot of food?
Liesl (6:02) No. (6:03) Not that's not quite the way it is. (6:05) I think when we looked at the press and the media around Daphne at that time, the press focused very much on people can eat whatever they like. (6:13) And in The UK at that time, education was about healthy diet and not about carb counting. (6:20) Mhmm.
Liesl (6:21) So there was this disconnect even for health care professionals around the relationship between insulin and carbohydrate. (6:28) So that wasn't something I'd ever been aware of ever, really. (6:32) And I just thought, well, if people can eat whatever they like, if they've always been told you've got to eat a healthy diet, you can't eat sugary food, you can't eat fatty food. (6:41) They're just going to eat whatever they like, and this could be a disaster.
Scott Benner (6:46) Okay.
Liesl (6:47) But then I went on the Daphne course and properly understood that triangle between carbohydrates, insulin, and blood glucose, which I'm ashamed to say I hadn't fully appreciated for the six years that I'd been a diabetes specialist nurse.
Scott Benner (7:03) Characterize for me the kind of care you were offering in the first six years in hindsight.
Liesl (7:11) Changing insulin doses for people in very small amounts without really taking into consideration what they were eating. (7:21) So not really being aware of why they might wake up above their target glucose in the morning, and perhaps it's because they had to have a bowl of cereal before they went to bed so they didn't go hypo. (7:34) But that wouldn't really come into it necessarily. (7:37) So it was really very limited, and I suspect I was not very effective in that role at that stage.
Scott Benner (7:45) Mhmm. (7:45) Did you think during those years that everyone who you saw was just eating watercress and and drinking tea and not really taking him any carbs and they were super healthy? (7:57) Like, was that your expectation of what was happening, or is that is that what you were told is that what they were being told to do when you were just making the assumption they were doing it?
Liesl (8:07) That's what we were recommending people were doing, but I'm a realist. (8:11) And I knew that people were not doing it because I don't have diabetes, and I wasn't doing it. (8:15) Mhmm. (8:16) So, you know, I think I think it's very easy to give advice, but what I wasn't doing in those days was listening. (8:25) I felt I was a vehicle of information, and my job was to give information and tell people what they should be doing because that's what was going to benefit them in the long run.
Liesl (8:37) But doing the Daphne course and becoming a Daphne educator taught me to listen
Scott Benner (8:42) Mhmm.
Liesl (8:42) And to understand what it's like as well as I can with a condition that you can't have a day off from. (8:51) Yeah. (8:51) And I will never truly understand type one diabetes unless I get it, but I owe it to anybody with type one diabetes to listen and do my best to understand what it's like for them as an individual rather than try and put a population wide approach to it.
Scott Benner (9:09) So do you think that the, I don't know, the the establishment idea was eat like this, very low carb, and you should do that because you have diabetes. (9:20) And if you don't, then you're noncompliant, and we can't help you. (9:24) And if you do, then maybe you'll get lucky and have good outcomes. (9:27) Is that is that how they thought about it?
Liesl (9:29) I don't think even low carb came into it. (9:31) Carbohydrate wasn't anything for me as a qualify I qualified as a nurse in 1990, and then I went into diabetes in 1999. (9:40) And I don't think carbohydrate ever really entered our psyche or our training at that stage.
Scott Benner (9:46) In 1999? (9:47) I'm sorry. (9:48) I talked over you. (9:49) In 1999?
Liesl (9:51) Yeah.
Scott Benner (9:51) Wow. (9:52) Okay. (9:53) Alright. (9:53) Okay. (9:54) When did Daphne begin?
Scott Benner (9:56) Do you know? (9:58) It I can look if you don't know.
Liesl (10:01) Origins. (10:01) Yeah. (10:02) No. (10:02) No. (10:02) No.
Liesl (10:02) Its true origins are with a man called Michael Berger in Dusseldorf back in the eighties. (10:08) And Germany were having or achieving much better outcomes for people with type one diabetes at the time than we were. (10:16) And there were some very influential people in The UK, professor Stephanie Amiel, professor Simon Heller, and doctor Sue Roberts, who went out to Germany to visit Michael Burger and to see the education he was providing for people with type one diabetes. (10:31) And through a collaboration with him and his support, they brought his education back to The UK in the late nineties and called it DAFNI, dose adjustment for normal eating. (10:42) So we had a randomized control trial in the late nineties, which showed reductions in h b a one c, and then that was rolled out in 2000.
Liesl (10:53) So DAFNI's been going it's our 20 birthday this year. (10:56) We've just had in October our birthday month celebrations.
Scott Benner (11:01) I have here begun 1999, teaches adults with type one diabetes how to adjust insulin to match their lifestyle and food choices rather than restrict diet, adapted from a successful German model of structured diabetes education, usually a five day in person group course run by diabetes specialists, nurses, and dietitians. (11:19) It proves it has been proven to improve h b a one c, reduce severe hypoglycemia, increase quality of life, and confidence in diabetes management.
Liesl (11:28) Yeah. (11:29) And the other thing it does is reduce diabetic ketoacidosis because if some or DKA. (11:34) So when people have had DKA in the past, that usually, excludes them from any kind of research. (11:40) Mhmm. (11:40) But because we collect real world data, we can show real world reductions in episodes of DKA and also in the number of people who experience DKA once they've done a Daphne course.
Scott Benner (11:53) Is the Daphne course, akin to this podcast? (11:56) Does it have a lot of overlap
Liesl (12:00) or no? (12:01) Overlap with
Scott Benner (12:02) what like, with ideas of how to do things. (12:05) Like, the I mean, I I guess I should have started here. (12:07) Do you listen to the podcast at all?
Liesl (12:09) I haven't listened for a few weeks, but that's because we've had a lot of, we've had a bereavement in the family, and I just haven't been running. (12:15) But when I was running on my treadmill a lot, I was listening to a podcast while I was running.
Scott Benner (12:19) Okay. (12:19) And you and you've heard, I don't know. (12:21) Have you heard the pro tip series or one of those, like, management series?
Liesl (12:25) I haven't heard those. (12:26) I've heard a lot of people who have got either type one diabetes themselves or they have it in their family.
Scott Benner (12:30) Yeah. (12:31) You've been listening to the stories from people. (12:32) Okay. (12:33) So there are, a a ton of of, series within the podcast. (12:38) I was I was just wondering if you knew if there was overlap.
Scott Benner (12:42) But instead, I'm gonna talk to you about it, and I'll see if there's overlap. (12:45) So Okay. (12:45) Tell me, you know, in this five day course, like, what do you what do you tell people? (12:51) Like, how do you introduce the idea to them, and how do you help them understand it?
Liesl (12:57) Okay. (12:57) So before they join the course, we ask them if they want to do it. (13:00) And the way we do that is by saying, what do you want to be different about your life with diabetes? (13:05) Mhmm. (13:06) So there will be people who say, well, I haven't been running since I got diagnosed because I'm frightened I'm gonna have a hypo, or I really want to look after my grandchildren, but my my daughter won't let me because I had a really severe hypo.
Liesl (13:19) And so there are things in people's lives that they don't do because they've got diabetes or things that they do. (13:25) So they they may eat the same food every day because they feel safe, and they're anxious about eating something different. (13:34) So they want variety. (13:35) They want a social life back. (13:37) They don't want people to judge them.
Liesl (13:39) So we ask them, what do you want to be different about life with diabetes? (13:42) And then it may be that there's something within a DAFNI course that would be absolutely ideal to help them achieve what they want. (13:48) So we then say, actually, if you want to run safely, come on the Daphne course. (13:53) You can learn all about that, and then you can start running again when you feel safe. (13:58) Mhmm.
Liesl (13:59) And then when they come on the course, the first day is spent talking about carbohydrates. (14:04) So what is carbohydrates? (14:06) What does it do? (14:07) What is type one diabetes? (14:09) And why is carbohydrate important in managing your glucose?
Liesl (14:13) And then they go on to learn about carbohydrate the com the concepts build from very basic concepts to very complex situations over the five days. (14:23) So they start out by identifying what is carbohydrate. (14:27) So they have some food models on the table, and they split them into groups. (14:32) Those that contain carbohydrates, those that don't, and the ones they're not sure about, like burgers and sausages, baked beans, people aren't always sure about. (14:42) And then we talk about those foods so they can understand why some do and don't have carbohydrate in.
Liesl (14:48) And then by the end of the week, they're working out carbohydrate in recipes that they make at home, in their cake recipes or their scone recipes or their curry recipes or whatever it might be, they're able to work out what they're actually going to eat carb wise and how to match that with their insulin. (15:04) So they learn gradually over five days in this building of concepts. (15:08) And I have to say it was the best bit about being a diabetes specialist nurse is watching people's confidence grow and seeing their understanding just expand beyond what they'd expected and watching the penny drop. (15:24) It's it's like, it's a professional drug delivering a Daphne course. (15:28) Mhmm.
Scott Benner (15:29) Do you, find yourself in the beginning did you find yourself, astonished, or did you expect people's level of understanding about what's in their food?
Liesl (15:44) I think the Internet is a wonderful thing, but it's also a dreadful thing because when somebody is newly diagnosed with type one diabetes, they can often be in this state of shock. (15:56) There's a relief that all that sudden weight loss wasn't a life threatening diagnosis like cancer. (16:02) But then there's the realization that they've got this condition they can't have a day off from. (16:07) I can wake up in the morning and decide not to wash my hair, but you can't wake up in the morning and decide not to take your insulin. (16:14) And so sometimes they're like a rabbit caught in the headlights.
Liesl (16:18) And so even though we might give lots of information about carbs at diagnosis, how much actually goes in with the enormity of taking five injections a day and everything else they have to think about, I think it just doesn't stick. (16:30) So then they can look on the Internet, and there's so much conflicting information that I think people don't always know what to go with. (16:38) So when they come on a Daphne course, it's almost a relief that somebody is saying, this is what you need to know. (16:44) You're gonna learn it in a safe environment. (16:47) You can practice things.
Liesl (16:48) You can make mistakes. (16:50) We'll support you. (16:51) We won't judge you, and you are gonna become very much more confident and comfortable with self managing your diabetes in just five days.
Scott Benner (16:59) Yeah. (17:00) What what's the turnaround? (17:01) Like, I'm I'm gonna ask you just to quantify it somehow. (17:06) Do people come in at a confidence like, let's set confidence level between one and ten, 10 being the greatest. (17:11) Where do people come in at mostly, and where do they leave at?
Scott Benner (17:14) Like, what's the what's the build they get usually?
Liesl (17:16) Yeah. (17:17) So we do something called prom data. (17:20) I don't know what you call that in The States. (17:22) It's called person reported outcome measures. (17:24) And so those are questions that we ask people before they do the course, immediately when they finish the course, and then a year later.
Liesl (17:31) And we ask them very specifically how confident they are with insulin dose adjustment, how confident they are with carb counting. (17:39) And most people before the course for both of those will come in if one is not confident at all and 10 is supremely confident, most course participants will come in with a score of one to five Mhmm. (17:53) Before the course. (17:54) When the course is finished, they'll mostly be scoring between seven and ten immediately after the course. (18:01) And for insulin dose adjustment, it's still a majority seven to 10 score in a year's time.
Liesl (18:07) And for carbs, there's a slight dip maybe between six and ten at one year.
Scott Benner (18:13) Is there So
Liesl (18:14) it's huge.
Scott Benner (18:15) It's huge. (18:15) Yeah. (18:16) Is there a a wide difference between people's backgrounds in education, or do you find that there are certain people who don't need or or come for the course and there's groups that more so do, or is it across the spectrum?
Liesl (18:31) I think, on Daphne, we talk about health literacy. (18:34) So you can be very well educated. (18:37) You can have gone through university and got a degree, a master's, a PhD, but you may struggle with health literacy, which is applying the numbers to yourself. (18:46) Mhmm. (18:46) You might have left school at 14 with no qualifications but really strong maths ability, and you'll fly with it.
Liesl (18:54) So there's no I wouldn't have any preconceptions around whether somebody would manage to self manage their diabetes based on their education level because in my experience, that's not a good predictor.
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Liesl (21:08) No. (21:08) Not at all.
Scott Benner (21:09) Gotcha. (21:11) Do you find that there's one part is there an moment in the five days? (21:19) Like, I know you said it's it starts basic and it builds the more complex, but is there something that gets said that you you just see people's faces light up? (21:26) Like, is there a takeaway, a tagline you use, something you say over and over again that makes you can see it light people's eyes up?
Liesl (21:36) I think one of the main things which they learn on the first day is that they couldn't have done anything to avoid it. (21:42) And that's a big moment. (21:44) Because in the media, certainly in The UK, there's a lot of judgment around type about around diabetes, and there's a lot of judgment based on people's weight or lifestyle. (21:54) And whether you've got type one or type two, that stigma seems to apply. (21:58) And so often people have been told, well, surely if you just act differently, you wouldn't have diabetes.
Liesl (22:05) So the realization on the first morning of the first day that they were going to get it and there was nothing they could do to avoid it Mhmm. (22:12) It's not their fault. (22:13) That relinquishing of guilt for a lot of people is really powerful, and that happens within the first couple of hours of the course Yeah. (22:20) Starting.
Scott Benner (22:21) It is I mean, listen. (22:24) I've never been to England, so I'm guessing and basically going off of things I've seen on television. (22:30) But but are you are you guys, overall, societally not a warm fuzzy group who talks about their illnesses together a lot? (22:40) Or like, I'm wondering if this is also valuable because you get into a room with other people who know your story and and are living it as well.
Liesl (22:47) Oh, I think you've just hit the nail on the head. (22:50) I can walk through a waiting room in a hospital, whether it's a diabetes diabetes waiting room or people with broken legs, and you won't find people sitting there easily sharing their stories necessarily. (23:02) So when people come on a Daphne course, it's often the first time they've had a proper conversation with somebody else who lives with type one diabetes. (23:08) Mhmm. (23:09) And often they're quite reserved on the first day because everyone thinks they're going to be the worst in the room at managing diabetes, and then they realize that they're all as good as each other or they're all as bad as each other.
Liesl (23:23) And they all share the same problems, the same anxieties, the same fears.
Scott Benner (23:27) Yeah.
Liesl (23:28) And so I think that leveling of the playing field when you have a bunch of people together is the is the most powerful thing. (23:34) And I don't think we'll ever really know with Daphne. (23:37) Is it the Daphne principles around carb counting and dose adjustment, or is it the peer support? (23:42) And if you took the peer support away, would people achieve so much? (23:46) I don't know.
Liesl (23:46) I wouldn't like to have that guess.
Scott Benner (23:48) I'll tell you that, so the podcast, you know, in its entirety, it's it's been around for almost eleven full years now. (23:58) And at the end of this year, it'll be the end of the eleventh year. (24:03) And I'm gonna start right back up again, year 12 on, you know, January 1. (24:07) But the of the 20,000,000 total downloads that have happened over the last eleven years, a a number of million of them happened this year in 2025.
Liesl (24:16) Mhmm.
Scott Benner (24:17) And I I just looked and by, you know, by country, and I don't think this is surprising. (24:23) Obviously, it is most popular in The United States. (24:25) Canada's second. (24:26) The UK's third. (24:28) And there there are a significant number of downloads in The United Kingdom.
Scott Benner (24:32) From there, for people interested, it goes Australia, India, Germany, Ireland, Sweden, New Zealand, and China. (24:38) Those are the top I think those are the top 10. (24:42) I and I and now I'm sitting here wondering if I did a deep dive on people's national ability, I'll say, to be open and and and to talk to other people about stuff like this. (24:54) I do think I I don't think I'm incorrect to say that Americans are probably uniquely seen as really willing to talk about things that other people don't talk about. (25:03) Is that true, do think?
Scott Benner (25:04) Mhmm. (25:05) Do you do you think of us that way? (25:07) Well,
Liesl (25:09) my, my niece is half American, and and she's very happy to talk about almost anything. (25:15) So I think just going on that personal experience, I would say yes, and I adore her for it.
Scott Benner (25:20) Yeah. (25:21) I I had there's I won't tell you now because it has nothing to do with anything we're talking about, but I found myself a few weeks ago in the middle of a conversation that I did not think would go a certain way and somebody brought something up. (25:32) And the next thing you know, was a half an hour later, and I I got done and I thought, why do I share any of that? (25:38) Like like like, how did how did that even and I and it just would have made more sense for me not to. (25:43) But, you know so and I've seen, like, on this side of it, Lisa, I don't know how much of, like, I of the little ecosystem I've built here you're aware of, but I have a a Facebook group that has it's coming up on 80,000 members, and, it's incredibly active.
Scott Benner (26:00) Right? (26:00) Like and I mean, average one twenty to 160 posts every day. (26:08) Like, eight eight thousand comments, likes. (26:10) Like, there's at any point in time in any day, there's at least 40,000 of those people are active. (26:16) And I was not I haven't I haven't talked about this in a little bit, but, like, I didn't start that Facebook group on purpose.
Scott Benner (26:24) Like, the the listeners sort of made me. (26:27) And it was not it wasn't a thing that I really was interested in doing. (26:30) Meaning, I I I I don't not like the community aspect of it. (26:34) Like, I was scared of the idea of, like, well, I I don't wanna be in charge of a Facebook group. (26:37) That seemed like a problem to me.
Scott Benner (26:39) And it hasn't been. (26:40) It's been lovely overall. (26:42) But it it really has given me the opportunity to just sit back and watch what happens when people get to meet somebody else or get to ask a question that there's nowhere else to ask it of or to say something that they would have felt judged by in one place but but don't get to feel judged by there. (27:00) It's a a revolution for them. (27:03) Really, really truly is.
Liesl (27:05) I think and I think as Brits, we have a reputation for being quite reserved. (27:10) But I think with diabetes, there's so much stigma around it that people are afraid to talk about it because they're afraid that if they say anything, they're going to be judged. (27:18) Mhmm. (27:19) And so when you get a group of people in a room together and say, you're free to talk, and they've got type one diabetes, then they're fairly shy to start with, but not for very long.
Scott Benner (27:29) Yeah. (27:30) Happens pretty quickly.
Liesl (27:31) And in fact, I think that's I my second ever Daphne course was way back in 2006, 2007. (27:38) And the people that were on that Daphne course still get together every couple of months on a Saturday for lunch.
Scott Benner (27:46) No kidding.
Liesl (27:46) So we're now talking nineteen years later. (27:49) When I stepped away from being a diabetes specialist nurse and I joined the Daphne organization full time, they reached out to me and said, now you're not our nurse. (27:58) Would you like to come to lunch with us? (28:00) So I get to have lunch with them whenever I can several times a year on a Saturday. (28:04) And they might talk diabetes for a few minutes, but they talk about life like any other bunch of friends.
Liesl (28:09) Yeah. (28:09) But they have that irreplaceable, innate understanding of each other without saying a word of what it is like to navigate those life situations with type one diabetes. (28:22) And sometimes I am usually, I am in awe of them because they manage all the normal things of life that the rest of us manage, but they manage it while also living with type one diabetes. (28:35) And I don't think you can ever underestimate the effort that that actually takes. (28:40) And I take my hat off to them, and and I adore them.
Scott Benner (28:43) There's something about the way you just described that that made me feel like if if I don't have, you know, if I don't have a thing excuse me one second. (28:55) If I don't have a thing that's that's invisible, but yet I can kinda feel it, like, right, like and it's always with me, then it's then it's always with me. (29:06) And no matter where I am or what I'm doing, I have that feeling and no one else has it. (29:11) And and the way it hit me, like, visually was almost like if you could imagine, like, a thin towel a thin wet towel laid over top of you. (29:17) How uncomfortable that would be, right, if you were just living like that.
Scott Benner (29:21) But nobody else could see it but you, and nobody else could feel it but you. (29:25) But you still had to go to school, go to work, drive a car, go grocery shopping, and you always had that little wet towel over top of you. (29:32) And and somehow when everybody has the towel, it then it disappears. (29:36) It's gone. (29:37) Yeah.
Scott Benner (29:38) Yeah. (29:38) Yeah. (29:39) Yeah. (29:39) Oh, that's awesome. (29:41) I and listen.
Scott Benner (29:41) I it's just a different way to think. (29:43) It's not lost to me. (29:44) I I I do a lot of in person stuff, and I've done more of it in the last couple of years than I have in the past. (29:49) But I've you know, just this year was at a an event with two thousand people who had type one diabetes. (29:55) I you know, it was and I I don't know how to quantify what you've just said, but I know it's true that when they're all together, that that there's a lightness about them that I don't know exists when I see them in other places.
Liesl (30:11) And it's a sense of safety, isn't it? (30:13) They're not gonna be judged. (30:14) I think a few minutes ago, you used a word which is my absolute bugbear of a word and I wish it didn't exist, but there's a word noncompliant. (30:23) Right. (30:24) And that is used in medical terms to describe people with diabetes, particularly people with type one diabetes.
Liesl (30:32) So if somebody comes to a clinic and they see a health care professional and they've not been carb counting very much, they might be labeled as being noncompliant. (30:41) But actually, if that health care professional was to listen to them and find that they've just had to move house or they've just had a bereavement or they've got a sick child or they're working as a carer, they do shift work, and how difficult it is to be a carb counter and manage type one diabetes in those normal but frenetic situations. (31:02) If you understood that, you'd never label somebody as noncompliant. (31:06) And one of the things that we ask our Daphne educator trainees and our Daphne doctor trainees to do is to count carbohydrate in their day to day life for five days in a row. (31:18) Not because we want them to be perfect, but because we want them to have some shared experience with the people that they're supporting who live with diabetes all the time.
Liesl (31:28) Yeah. (31:28) And the number of doctor trainees or educator trainees who manage to do that completely 100% for five days is really small. (31:38) And that's not a criticism. (31:40) It's just a reflection of Well life.
Scott Benner (31:43) Yeah. (31:43) Lisa.
Liesl (31:43) Impact it has on people's managing ability.
Scott Benner (31:46) Isn't it true that those people were noncompliant with the task? (31:50) Right? (31:50) You asked them to count cards for five days in a row. (31:52) They became noncompliant. (31:53) Yeah.
Scott Benner (31:54) And and Yeah. (31:55) I listen. (31:55) I use that I use that word in the same way you you use it. (31:59) I I hope you could hear the underpinnings when I was speaking about it. (32:01) But Yeah.
Scott Benner (32:02) I don't think anyone I I've been doing this a very long time. (32:06) Okay? (32:07) And, by the time this year ends, I'll probably have had 2,000 separate conversations with 2,000 different people. (32:15) And I will have probably 300 more next year and and, you know, if everything keeps going the way it's been going, I probably have two or 300 more for the next coming years. (32:25) I I I hope really by the time I'm done this to have had 3,000 or more, maybe 4,000 conversations with people with diabetes.
Scott Benner (32:32) And I don't think any of them, no matter their situation or their outcomes, I don't think I'd be comfortable pinning noncompliant on any of them.
Liesl (32:44) Gosh. (32:45) No.
Scott Benner (32:45) Right? (32:46) No. (32:46) I think it's just life is hard, and and being, you know, a body system is hard, and it's unrelenting. (32:55) It doesn't stop. (32:56) It's not you know, it's so easy to say, like, you know, Christmas, Easter, 02:00 in the morning, doesn't matter.
Scott Benner (33:03) You still have type one diabetes. (33:05) And and Exactly. (33:06) You know, and it's just the peep those people have to make those people have to make a decision between their mental health and their physical health, which is unfair. (33:16) Like, right there's it that shouldn't there should be no situation where I say to you, you have to make a decision right now. (33:23) We're gonna make it again 20 times today.
Scott Benner (33:26) And you have to air on the side of making yourself crazy or making yourself physically sick every time. (33:33) And there's no win. (33:34) You can't win. (33:35) There's some people I I'll take that back. (33:37) There are some people who have such a specific personality that the taking care of the diabetes scratches an itch for their, like, type a personality.
Scott Benner (33:47) Does that make sense?
Liesl (33:48) Yeah.
Scott Benner (33:48) Yeah.
Liesl (33:49) Yes. (33:49) It does.
Scott Benner (33:49) Those are the perfect people to have diabetes. (33:51) And, like like, because they they can treat the management as, a reward system for themselves. (33:58) And I see it work for them incredibly well. (34:01) But everyone else is going to be on this very slow swinging pendulum that's going from center to left and center to right, and they are just, what's that thing? (34:12) We you ever see those people on the pole?
Scott Benner (34:14) They go up on a top of a real tall pole, and they just, like, they go back and forth and keep it from falling. (34:18) Do you know what I'm talking? (34:19) It's like a circus trick. (34:20) Right?
Liesl (34:20) I do.
Scott Benner (34:21) That's what those decisions are like. (34:23) Like, I can't fall one way, and I can't fall the other way, and I can't get the damn thing to stay steady. (34:28) So I just have to decide, like, what side do I give this to so that I don't either lose my shit or lose my sight. (34:36) And, that's not a and and when that's your situation, anyone who would understand that situation fully and then call being perfect is an asshole. (34:48) And anybody and anybody who would do it without understanding, it is just misinformed.
Liesl (34:52) Yeah. (34:53) And I think I I think the other thing we've to be careful of is even people who you I think you said type a personality, they, you know, they're the people to get it because they have a specific personality to manage it. (35:03) But I still think we have to be fully aware of diabetes burnout. (35:07) And now with the advance of technology, so most people with type one diabetes in The UK or in England now have got CGMs. (35:17) And that's brilliant.
Liesl (35:18) However, there's a risk of tech burnout, and sometimes they give you too much information, and that can be overwhelming. (35:25) And as a health care professional and as a human being, I need to understand and be mindful of that. (35:33) But, also, I think the one thing that tech has done is it's made type one diabetes visible, which it never was before. (35:40) So especially in the summer, you see somebody at the pool or someone at the beach or somebody out walking in a sleeveless top, and you see their CGM, or you might see their pump on their arm. (35:51) And so it's it's a bit like spotting a when you see people with type one diabetes and they meet each other and you can see they're looking and thinking, do I say anything or do I not?
Liesl (36:02) And I think, oh, do I go up to them and say, well done. (36:05) You're doing a blinder because I know they've got type one diabetes, or do I not because they might not want me to draw attention to it? (36:11) Yeah. (36:11) So it's making type one diabetes visible, which it never was before.
Scott Benner (36:15) We need a Jeep wave. (36:16) That's probably not something you know about. (36:18) But everyone who drives Jeeps in
Liesl (36:22) That's what we need. (36:23) Yeah. (36:23) Need a type we need a type one wave.
Scott Benner (36:25) We need a type one wave. (36:26) Yeah. (36:27) That way, you don't have to be right up some on somebody, but you can still give them a nod, you you know, and they'll and they'll know where it's coming from. (36:33) You you said two things I wanna go back to. (36:36) Type a thing.
Scott Benner (36:38) I again, I I not that I think I was taken that way, but, like, I'm not saying it's awesome for those people. (36:43) I'm just saying they're more perfectly suited for it. (36:45) But they should still be said, they are still giving an amount of effort and time and focus to something that nobody wants to be focusing on. (36:54) It's still unfair to them. (36:56) They just have Yeah.
Scott Benner (36:57) You know, they just their outcomes seem to work out a little better sometimes. (37:00) And maybe they don't go as bonkers about it because it it leans into whatever their, you know, whatever their wiring loves for them. (37:09) About the tech stuff, you know, it I take your point. (37:15) I really do about the beeping and the buzzing and etcetera. (37:19) But I'm really hoping that gosh.
Scott Benner (37:22) I'm really hoping that in a reasonable amount of time that the the trade offs are still I mean, I I believe now the trade offs are still valuable. (37:31) But I think in a reasonable amount of time, the it might get easier and easier again. (37:36) Like, hopefully, this technology will continue to grow. (37:38) I'm I'm I talk a lot about on here that, you know, I like that there are a number of different companies. (37:46) I like that they are aggressively trying to make their algorithms, more accurate and, you know, give them lower targets because it keeps it keeps those companies trying.
Scott Benner (37:58) You you know? (37:59) Like, I think
Liesl (37:59) Yeah.
Scott Benner (37:59) I I think when you saw, you know, the back in the day when there was one big pump company, you know, I'll tell you that I think they innovated and then they kinda sat back and were like, oh, we did it. (38:12) Here's the thing. (38:13) We gave it to you.
Liesl (38:14) Yeah.
Scott Benner (38:14) Right? (38:15) And I just, by the way, interviewed the CEO of that of that, company and and and put it to her. (38:22) I I was like, the what happened to you guys? (38:24) Like, it feels like you made the thing and then spent so much time selling it, you stopped worrying about whether it could get better again. (38:30) And she was very candid and said, yeah.
Scott Benner (38:33) I think that happens to a lot of businesses, and I think that happened to us too. (38:36) And and so that's not gonna happen again now because now you have No. (38:41) Medtronic and Tandem and Omnipod and Yeah. (38:44) You know, and now Twist and iLET. (38:46) There are more and more companies coming.
Scott Benner (38:48) If they wanna stay alive and make their money
Liesl (38:51) Yeah.
Scott Benner (38:51) They gotta make the thing better. (38:52) I think there's that's nothing but good news for people with diabetes.
Liesl (38:55) Yeah. (38:56) And that well, and it's similar with us in Daphne. (38:58) We're not we're not tech manufacturers, but we are developers of education for people with diabetes. (39:04) So Mhmm. (39:04) We haven't just got the Daphne course for people that use multiple daily injections.
Liesl (39:08) We've got the pump Daphne course for people who use a pump. (39:11) We've got the closed loop essentials course for people who are gonna be going onto a hybrid closed loop so that they've got an understanding of what it can do and what its limitations are. (39:21) So they don't so they go into it with realistic expectations and a confidence that they'll be able to manage it. (39:27) And we've just this year, we launched a course for people with type two diabetes who use multiple daily injections, And that's a very different focus. (39:35) That's about increasing their insulin sensitivity, decreasing their insulin resistance, and simple activities they can choose on a daily basis that is gonna help them with that.
Liesl (39:47) So rather than being stigmatized, judged, focusing on the fact that, oh, type two diabetes is always somebody who's overweight, which is not the case, understanding there's so many other reasons why somebody has type two diabetes. (40:03) And so we're trying to evolve to suit diabetes in the twenty first century rather than just sticking with most people in this country are still on multiple daily injections if they have type one diabetes.
Scott Benner (40:15) Sure.
Liesl (40:15) There's a big move to get people on closed loops in England, and there's a big move to get people on pumps. (40:20) We've got most of our people with type one have now got CGMs, but there's still a majority of people with type one in this country on multiple daily injections, and so that education is absolutely crucial.
Scott Benner (40:31) Mhmm. (40:32) You know, it's funny as you're talking, it occurs to me that you Daphne knows it works. (40:37) Right? (40:38) But it still has to innovate and continue if it wants to keep going because things can get stale and stagnant and die even when they're valuable. (40:45) Yeah.
Scott Benner (40:45) And I I it's funny how this is all gonna tie together because that happened to the pump company. (40:49) Right? (40:50) And it it you're they didn't defend against it, and now they're making they're making their comeback. (40:56) And you guys have the same thing. (40:58) Like, you know this thing you're doing works, but you still have to get it out there.
Scott Benner (41:01) You have to find people. (41:02) You gotta put it in their hands. (41:03) You gotta make sure they understand it so they go tell somebody else about it. (41:07) And not dissimilar, I'm telling you, that's what I have to do. (41:12) Like, there's Yeah.
Scott Benner (41:13) There's a value and this is gonna sound crazy, but, like, to some people. (41:18) But I know the I know how valuable the podcast is. (41:20) I get a lot of feedback. (41:21) Right?
Liesl (41:21) Yeah.
Scott Benner (41:22) And Yeah. (41:23) But just like I I I always say, like, I don't know what the what the old timey, like, British version of this is, but, like, if if things didn't need to be new all the time, then we'd all just be still watching MASH because that was a really good TV show, and why did they have to make another one? (41:36) Right? (41:37) And Right. (41:38) Yeah.
Scott Benner (41:38) So, you know, so why do you have to keep innovating and being modern and being in people's faces so that they're aware that something's there and happening that they should be looking at? (41:47) It's because that's how people's minds work. (41:49) So, like, I am constantly being forced to try to find new ways to have conversations or to say something to continue to help people. (41:58) And the only way I can accomplish that like, the only reason I can put that much time and effort into it is because this podcast also takes ads and it pays my bills. (42:07) And if it if it didn't, I wouldn't I I would go, well, I made the thing.
Scott Benner (42:12) Here it is. (42:13) And I can't keep going because I gotta go I gotta go find a way to turn my power back on. (42:18) Right? (42:19) And you guys ahead and take it, and then it would just die. (42:21) Would wither on the vine.
Scott Benner (42:22) It would it would be gone already. (42:24) Right. (42:24) Right. (42:24) So there's
Liesl (42:25) But I
Scott Benner (42:25) Go ahead.
Liesl (42:26) No. (42:27) I was gonna say, so a hundred and two years ago, I had a great aunt who was nursing in Liverpool, and I have her old notebooks. (42:34) And she has one side of paper on diabetes, and it's a diet to keep people alive with newly diagnosed diabetes. (42:44) And it starts off they can have 50 calories to eat on the first day, 75 on the second. (42:50) And I think over the course of two weeks, it goes up to 250 calories in the day, and then it goes back to 50.
Liesl (42:57) So she would have been looking after people and nursing them to their death when insulin suddenly appeared. (43:03) And a doctor said to her, give this injection to the child because this will save the child's life. (43:09) And so insulin, what was nineteen twenty two, twenty three when insulin became widely available. (43:14) So we went from having a fatal condition to something that people could live with. (43:19) And then in the nineties, I looked after somebody who'd had diabetes for seventy years.
Liesl (43:24) So he'd been diagnosed just at that time when insulin was made available. (43:29) Mhmm. (43:30) And I think he had lived all of those years measuring and weighing his bread and having so many grams of carbohydrate for breakfast, midmorning, lunch, midafternoon, evening, and going to bed. (43:44) And then suddenly, urine testing came in for him in the sixties and seventies, and that was an eye opener to him. (43:51) He could see that he had glucose in his urine.
Liesl (43:54) And then I was a student nurse in the late eighties when finger pricking came in on the wards. (44:00) That was just mind blowing. (44:02) We could still took three minutes to get a glucose reading, but, you know, it was still innovative and it was amazing. (44:07) Mhmm. (44:08) And then when I became a diabetes specialist nurse, that was when blood glucose meters were available to people with type one diabetes and particularly the pregnant women who had type one.
Liesl (44:19) And that was a big innovation, and that was twenty five, twenty six years ago. (44:24) So to think in the last twenty five years, we've gone to pumps and CGMs, rapid acting analogue insulins, ultra long acting basal insulins. (44:33) We've we've seen so much develop in twenty five years that if DAFNI as an organization doesn't keep up with that, then we're not providing what people with type one diabetes need.
Scott Benner (44:44) Yeah.
Liesl (44:45) And we're not here for shareholders. (44:47) We're not here to make money. (44:48) We're here so that a person that we've never met who has type one diabetes has a better quality of life, better psychological health, better long term health, and better confidence day to day with their type one diabetes. (45:01) And those are the people I'm thinking about when I'm doing my job is how is this going to impact them? (45:07) Because if it's not gonna have a positive impact, I need to do it differently.
Scott Benner (45:11) Yeah. (45:11) And it shouldn't be lost that that effort happening over and over again day after day is what what drags you into the next part. (45:19) Right? (45:19) Because there will be a time. (45:21) I am confident saying based on just the story that you just told, I'm confident saying that there will be a time that people will look back on 2025 and say, oh my gosh.
Scott Benner (45:29) Those algorithms were nice. (45:31) I mean, I see how it changed people's lives, but look what we have now. (45:34) You you you know? (45:35) And that's look how many times that's happened just since the the twenties. (45:40) In in a hundred and you know, what is that?
Scott Benner (45:42) A hundred and five years, maybe not even quite. (45:44) Like, look how many times you said, and then this came along, and then this came along, and then this came along. (45:50) Like and I realized at some point, it feels like, well, it'll stop, but I don't know that. (45:57) I you don't you have no idea how someone's gonna apply AI learning to diabetes over the next five or ten years. (46:05) And, you know I yeah.
Scott Benner (46:07) Yeah. (46:07) And my daughter already can may I? (46:10) Can you hold your thought one second? (46:11) Would you mind?
Liesl (46:11) Yeah.
Scott Benner (46:12) I I just got done speaking with a friend of my daughter's yesterday. (46:16) So they're the same age. (46:17) Her friend has had type one for ten years. (46:20) And she asked me, I just got a CGM last month. (46:23) This is the first time she's had a CGM.
Liesl (46:25) Wow.
Scott Benner (46:26) Do you think I should get a pump? (46:28) And and what would a pump do for me? (46:30) And I found myself telling her the stuff I say all the time. (46:33) I said, well, you know, with a you know, first of all, you don't wanna disregard somebody's care. (46:38) She's doing a very good job.
Scott Benner (46:39) I'm like, there's not much that you can't do with, MDI that you can do with a pump that's different. (46:44) Here are the differences. (46:45) You can do temporary basal increases and decreases. (46:48) Yeah. (46:49) You know, you could shut your insulin off.
Scott Benner (46:51) You could, you know, change your ratios very quickly without having to, like, do math again. (46:57) You know, blah blah blah. (46:58) But I said, here's what I really think. (47:00) This episode was too good to cut anything out of, but too long to make just one episode. (47:05) So this is part one.
Scott Benner (47:06) Make sure you go find part two right now. (47:08) It's gonna be the next episode in your feed. (47:18) Touched by Type one sponsored this episode of the Juice Box podcast. (47:22) Check them out at touchedbytype1.org on Instagram and Facebook. (47:27) Give them a follow.
Scott Benner (47:28) Go check out what they're doing. (47:29) They are helping people with type one diabetes in ways you just can't imagine. (47:34) The podcast you just enjoyed was sponsored by Tandem Diabetes Care. (47:38) Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. (47:48) There are links in the show notes and links at juiceboxpodcast.com.
Scott Benner (47:52) The podcast episode that you just enjoyed was sponsored by Eversense CGM. (47:57) They make the Eversense three sixty five. (48:00) That thing lasts a whole year. (48:02) One insertion. (48:03) Every year?
Scott Benner (48:04) Come on. (48:05) You probably feel like I'm messing with you, but I'm not. (48:07) Ever since cgm.com/juicebox. (48:12) Check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod five, Loop, Medtronic seven eighty g, Twist, Tandem Control IQ, and much more. (48:25) Each episode will dive into the setup, features, and real world usage tips that can transform your daily type one diabetes management.
Scott Benner (48:32) We cut through the jargon, share personal experiences, and show you how these algorithms can simplify and streamline your care. (48:38) If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juice Box podcast. (48:44) Easiest way, juiceboxpodcast.com, and go up into the menu. (48:48) Click on series, and it'll be right there. (48:59) Hey, kids.
Scott Benner (48:59) Listen up. (49:00) You've made it to the end of the podcast. (49:02) You must have enjoyed it. (49:03) You know what else you might enjoy? (49:04) The private Facebook group for the Juice Box podcast.
Scott Benner (49:08) I know you're thinking, ugh, Facebook, Scott, please. (49:11) But no. (49:11) Beautiful group, wonderful people, a fantastic community. (49:15) Juice Box podcast, type one diabetes on Facebook. (49:18) Of course, if you have type two, are you touched by diabetes in any way?
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