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Diabetes Discussions: Treatments

Diabetes treatments are varied and can include medication, changes to what you eat, and technology. But with so many treatments available, it can be challenging trying to understand how all these treatments work.  

In this episode, Jack Woodfield from our content and news team is joined by Shivali Modha and Professor Partha Kar. 

Shivali is an accountant who lives in North London. She was diagnosed with type 2 diabetes aged 26, and is now one of our fundraisers and campaigners.

She talks about the shock of her diagnosis and how she struggled with the side effects of her treatments in the first few years. She also discusses her experience of going into remission and the changes she’s encountered in treatments over the past 15 years. 

Partha is a diabetes co-lead at NHS England and a consultant in diabetes and endocrinology at Portsmouth Hospitals NHS Trusts. He discusses the challenges some people face when starting new treatments, and why social inequalities can also play a part in diabetes treatments and outcomes. 

Diabetes Discussions: Treatments transcript

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Episode 6 transcript

Jack [00:00:10]: Welcome to Diabetes Discussions, the brand-new podcast from Diabetes UK. Each episode we'll be talking to you about the realities of diabetes, sometimes known as the hidden condition.  

[00:00:21]: Millions of us live with it. Millions more misunderstand it. We know diabetes can affect everyone differently. It can play a small part in your life or completely consume it. 

[00:00:31]: We'll be sharing personal experiences from those impacted every single day, but who don't let it hold them back.  

[00:00:39]: I'm Jack Woodfield from Diabetes UK and I'll be guiding us through the conversation and sharing my own stories of living with diabetes. Today we'll be talking about treatments.  

Shivali [00:00:51]: If a treatment isn’t working for you, don’t suffer. Nobody needs to suffer from their treatment. The treatment’s supposed to make you feel better. 

Partha [00:00:57]: Everywhere there is an adjustment that's needed. And however it be the medications, the diets, technology, it's something extra which you normally wouldn't have had. 

Jack [00:01:11]: The word treatments can mean a lot of things within diabetes care. It can mean the tablets and medication that you might take, as well as adjustments that you might make to your diet or through being more active. And treatments also include technology like insulin pumps and blood glucose monitors. 

[00:01:26]: Joining me on this episode to discuss the wide spectrum of diabetes treatments are Professor Partha Kar and Shivali Modha. Shivali is an accountant who lives in North London. She's a Diabetes UK member and fundraiser who was diagnosed with type 2 diabetes aged 26 and struggled initially with side effects from insulin and metformin.  

[00:01:45]: And Partha is a diabetes co-lead at NHS England and a consultant in diabetes and endocrinology at Portsmouth Hospitals NHS Trusts. Shivali, Partha, hello and welcome to you both.  

Shivali [00:01:56]: Hi.  

Partha [00:01:57]: Hi. Thank you. Thanks for the invite. 

Jack [00:01:59]: So firstly, Shivali, could you talk us through your diagnosis story and also talk about the medications that you were prescribed following your diagnosis and your reaction to them? 

Shivali [00:02:09]: So, my diabetes diagnosis came as a shock. It came in pregnancy. I was pregnant at the time, and I went to visit my GP for a regular checkup and the nurse there checked my blood sugars and noticed that it was really very high.  

[00:02:26]: The GP immediately referred me to the consultant at High Barnet Hospital, who was the diabetic expert in pregnancy and diabetes. And in terms of my treatments, I was immediately put on insulin to make sure that my blood sugars were in good control for the pregnancy.  

[00:02:42]: Unfortunately, that pregnancy wasn't viable, and I did continue the medication, the insulin, and metformin to preconceive basically to prepare for another baby.  

Jack [00:02:53]: I'm really sorry to hear about that experience. And for anybody listening that's affected by that we’ll be providing a link to the Diabetes UK Helpline in the episode notes.  

[00:03:02]: So, when you were prescribed your medications, how hard was it introducing them in day-to-day life? And how long did it take you eventually to get used to treatments?  

Shivali [00:03:11]: It was heartbreaking because I'm a foodie at heart, so it's not only just treatment through medication. Obviously, there's the lifestyle element of it as well, where I was advised by a nutritionist to look after what I was eating, look at the carb intake, and just generally my life turned over very quickly.  

[00:03:32]: It was a massive shock. The injections weren't something that I particularly liked, I don't think many people do, but I needed to do it because I did quickly become pregnant again, and I knew that this time, if I wasn't careful, I knew what the consequences would be. 

[00:03:48]: I needed to be keeping my blood sugars at the lowest that I could safely without going to hypos. In terms of life, I realized quickly that there's more than just the lifestyle side or the medical side. Again, things like letting insurance know with my driving, even my life insurance policy, things like that. 

[00:04:09]: Like things that you don't think about immediately, even though I was familiar with diabetes, having seen it in the family. In terms of taking insulin, I think that the only reason I was able to kind of get over that hurdle was because I knew that the reward was going to be really big at the end, otherwise I’m not sure. 

[00:04:27]: I think it would've taken me longer to process that. Being told you're going straight on injections and you know, there's no time for you to just do lifestyle changes like other people are told when they're diagnosed with type 2 diabetes.   

Jack [00:04:39]: It sounds like you made some really significant changes and it really profoundly changed your way of living. Partha, how common is it for people living with diabetes, whether they've been newly diagnosed or they've had diabetes for several years to find it challenging with new treatments, whether it's medication or dietary changes, whether it's because of side effects or alternatively any other reasons for this? 

Partha [00:05:00]: I think, you know, Shivali's probably sort of nailed it because it's suddenly it's, you know, you hear about it all the time around you. I think when it affects you, it's one of those things which is quite difficult to take on board, whatever your type of diabetes, because you're fundamentally changing a lot of stuff that you would do naturally or normally. 

[00:05:18]: And yes, of course there's a narrative and quite rightly people say you want to live your normal life with everything, but it's not normal. And I think in the sense that you- you are having to make adjustments, if you've got type two, you've got type one, you're having to make constant adjustments, you know? 

[00:05:33]: And then you know you wanna plan for a pregnancy, yeah- everywhere there is an adjustment that's needed. And however it be the medications, the diets, technology, it's something extra which you normally wouldn't have had. Right?  

[00:05:45]: So, uh, I think, you know, it's under-recognized how big a thing it is when you're given the diagnosis and to be, for that matter, any diagnosis, you know. And of course, you know, quite understandably there is a lot of focus on when people get a diagnosis of cancer, you know, and the- the huge impact of that.  

[00:06:02]: Now, I wouldn't put diabetes in the same category or the bracket, but straight away you're thinking, what about the problems with my feet, about my eyes? You know, am I gonna die young? What about my children? These things come into your mind very straight away. So, it's under-recognized how much of an impact it does have. 

Jack [00:06:19]: You spoke about the adjustments that people have to make, and we know a lot of people with diabetes can end up switching treatments for all sorts of reasons, and this is particularly, you know, relating to medication. 

[00:06:29]: But what are some of the reasons why people might switch between treatments? For anybody listening to this that's perhaps been prescribed something new recently and isn't completely sure of why this is the case.  

Partha [00:06:39]: Yeah, I mean I think there are many reasons for it. I mean, reason one is the clinician concerned has felt that the medication that was there was not doing its job to the extent, so you feel like something else is needed. 

[00:06:50]: There could also be something beyond your diabetes. There could be simply supply issues. That drug is not available, so what do you do, right? And lots of people are going through that right now at the moment.  

Shivali [00:07:00]: Me too.  

Partha [00:07:01]: Yeah, with, uh, glucagon-like peptides because it's being sold in the private market. So that's an unintended change. So, change doesn't always happen because there's a clinical need to it. Sometimes there's a system which is making you change.  

[00:07:14]: That becomes even more frustrating because, you know, in one way if a clinician says, look, you know, we need to add something in or take something off because it's not quite working, you can understand that because, okay, well I want to do the best for myself as well. 

[00:07:27]: I suspect when it becomes like, well actually we run out of this drug and you're sitting in a first world country and you're going like, what does that mean? What do you mean you've run out of a drug? So that's quite frustrating, understandably so.  

Jack [00:07:38]: Shivali, you've got your hand raised and you said ‘me too’ when Partha was speaking there. So, what's your experience with, is it supply chain issues?  

Shivali [00:07:45]: I've had a week. I tell you, I've called every pharmacy in my area numerous times and I cannot get hold of my current treatment. I'm currently on the Ozempic semaglutide and it's impossible. I know I can buy it if I Google it and it's extortionate. 

[00:08:02]: But, I cannot get it from my pharmacy and my doctor I can't get hold of for a few weeks. So, it's a real struggle. Um, I think the other side of it is also things like side effects. Before I went onto semaglutide, I was on another injection, which was a once weekly treatment, but with that I had really bad side effects where the injection site would flare up into like golf ball sized kind of bumps on my tummy.  

[00:08:29]: So, I think that's the other thing, that not every medication is gonna suit you, and not every combination of medication will suit you. You know, over the 15 years where I’ve dealt with my diabetes, I’ve gone from remission to being on insulin treatment to being back on tablets but what I have noticed in terms of the treatment, is that there have been developments and changes in those 15 years.  

[00:08:54]: When I started, it was very much insulin, metformin, but the combinations have progressed and changed. But this supply thing, you know, in my mind, is a little bit outrageous because I should be able to get what I medically need without fighting with the kind of commercial interest of that medication. So, a little frustration. 

Jack [00:09:14]: Yeah, of course and I'm sorry to hear about those side effects. And we do know with regards to specifically Ozempic, which you mentioned that there are issues with shortages, and we actually have a piece on our website which people can go to for advice on Ozempic. And yeah, we know that this is causing an issue for people living with diabetes who are taking this medication.  

[00:09:32]: Shivali, just returning to your journey, so you went into remission from type two in 2018, and for those listening who are unaware of what remission means in this context, this is defined as having an HbA1C below 48mmol/mol, or 6.5% for at least three months without diabetes medication. 

[00:09:49]: So, could you talk us through your remission story as well as the key challenges along the way, and also, how has your journey progressed since 2018?  

Shivali [00:09:57]: So, prior to 2018, I had an awakening where I really became interested in my health and, you know, improving my quality of life because I'd reached the stage where I felt I couldn't do very much with my children. 

[00:10:13]: I was on insulin. I was thinking about them and a future where I wouldn't be there, a genuine fear because it just felt like there was never any good health story. It was always a negative one. I was always going to the doctors and it was my eye or my- something had gone wrong. There was always a complication, and at that stage I joined a very well-known slimming club, which helped me to come down from my sixteen stone to a really lovely nine and a half stone in a healthy kind of way, which I didn't think I could do.  

[00:10:47]: So, still eating my vegetarian diet. I tweaked it a little because it's quite high on fruit, which can be quite sugary. So, my tweaked version of it meant that I was eating some fruit, but not so much. And as my weight came down, my blood sugar started to come down also. Initially I thought, no, this is a bit too good to be true. It can't simply be that me losing weight is having this impact purely based on diet. We had another tragedy that year and I ended up taking up running as well. 

[00:11:19]: So, combined with the healthy diet and the running and the weight loss, I did achieve remission. The absolute impossible in my mind. I didn't even know it was a thing. I didn't know it could happen. I knew definitely that diabetes would still be there in the background for me, and it would be something I'd always have to take care of and think about. 

[00:11:41]: Remission doesn't mean it's gone, it's over, it's finished. It just means that for the moment it's stable and I can live a normal-ish life without being on my diabetic medication, but I need to be alert. I can't just pretend like I'm everybody else and it's not a concern.  

Jack [00:12:00]: So, your story, I think just shows how everyone's journey can have so many ups and downs, and I know this is the case for myself with type one diabetes it’s so unpredictable from one day, the next, from one year to the next.  

[00:12:13]: Partha, with pertinence to Shivali's story and the changes that she made, I'm interested to know from your side about diets as a treatment. So, we know from research studies that dietary changes can have major benefits for some people living with type two diabetes. 

[00:12:27]: So, when might a GP or a healthcare team recommend dietary changes to someone either alongside medication or not? And could you tell us more about the benefits that can come from making changes for anybody with any type of diabetes?  

Partha [00:12:39]: So, I mean, dietary, uh, advice pretty much comes to the beginning of the treatment and continues throughout. The only problem with diet is trying to find out what's the best diet, and I always have a very simple view of diets, which is the best diet in the world is the one you can tolerate, sustain, and afford.  

[00:12:56]: It’s very easy for clinicians to sort of give you an idea as to what’s the best diet and people are swayed by national guidelines, their own views, what they've read, you know, which is where the eternal debate's gone about low carb, low calories, Mediterranean, this, that, everything.  

[00:13:12]: But I think people forget, they give their advice from a position of relative privilege. Let's not forget that. And it's easy for me to say, you know, why don't you have avocado and you know, this in the morning every day? And uh, I think a lot of people sitting around listening to this in different parts of the country, you know, who are struggling to put food on the table, are going like, hmm, well, what are you talking about? So, I think people need to be cognizant of giving advice that fits in with everybody, and we know that. 

[00:13:39]: So, I think to your question, dietary advice generally tends to centre around, you know, eat in moderation, do your exercise, you know, keep an eye on what you're having. Now, some school of thought would say, that's complete nonsense. You should just not touch any carbs, et cetera, et cetera. It takes me back to the point which I always said about sustainability, right? 

[00:13:57]: You might have the drive and the motivation to do so. Other people may have five different other problems on their plates. And that motivation may not- that does not make them a lesser motivated individual. They just have other priorities and other issues in life you don't have. So, I think the diet question will be forever there. 

[00:14:17]: I always say to people, uh, you know, I think most people, if I'm very honest, know what a healthy diet is, even though we all know, right? What a healthy diet, you've gotta be living under a rock, not know a healthy diet. And the majority of people do try. The problem is society, the poverty, deprivation, life’s pressures stops you from doing it always. 

[00:14:38]: So I have- I've got a lot of sympathy and empathy for people who struggle with their diet. I, you know, I can do a diet anytime I want, I just can't sustain it, right? So that's a different debate. So yeah, I think it's- it's a fundamental cornerstone of anybody's life, and if you're diabetes, whatever, be your type, it's always going to be there. 

[00:14:59]: Eat healthily, do it in moderation. Look at the portion size, you know, and exercise as much as you can, and that's standard routine advice for everybody.  

Jack [00:15:08]: The cost-of-living crisis certainly doesn't help at the moment, and the pressures facing households and families trying to feed multiple people.  

Partha [00:15:16]: And there's your problem. So unless we tackle that, you know, we are, all we are trying to do is give the rich and the ones who can afford all the choices in life of, you know, here is some avocado and here is some, you know, Greek salad and all that, which is great, but a lot of our people who are struggling at the sharp edge of it can't afford that. 

Jack [00:15:33]: Yeah, I think it's really interesting point on the financial challenges. And I wonder in all this how significant emotional wellbeing is when it comes to making changes. And you touched on this in your answer as well, when it comes to making any changes, whether you're prescribed new medication or you are looking to change your diet or become more active. 

[00:15:49]: And I can speak a little to this myself. So, I have type one and every summer I go through this where my insulin tends to work faster when it- particularly when it's really hot as well. And so, I've spoken to my healthcare team about this over the years, and I tend to lower my basal or background insulin in the morning and the nighttime. 

[00:16:03]: And I normally find that my quick acting or bolus insulin works quicker too. And so, I have a real fear of exercising in the summer. And so I manage this, you know, every year. And when it comes to walking the dog, it can be like, you know, I'll check my sugars and they're eight on the Libre and there's no sign of going low. 

[00:16:17]: But then 15 minutes into the walk, I'll check it, I'll be four and you know, it's a fear that I kind of carry and I manage, but I wonder how important is it for healthcare teams when they're with people living with diabetes to discuss fears that they might have of making changes and also to discuss their emotional wellbeing and just see how they're doing. 

Partha [00:16:35]: So, the reality is that we would love to, I think most people don't have the time to do so. I mean, that's the honest truth. Um, so have a look at the King's Fund report on the state of the NHS compared to all other countries. And uh, the one thing that stands out is staff timing and the staff, full stop. So, uh, you know, trying to get, uh, hold of a GP or clinician, uh, specialist, it's just difficult. 

[00:16:59]: It's not because everybody’s just chilling at home, it's because they're struggling. And in the time you get, as most patients will tell you, you've got only what? Five, ten minutes, to squeeze in everything you want to and even then they're like, well, actually more than one problem, I don't really have a time to go into your second problem. 

[00:17:15]: So, once you got past your, here's my sugars and what do I do about it? Your appointment time is done. So, the emotional wellbeing thing- what used to be very good, specialist nurse colleagues and practice nurse colleagues used to be really, really good at that thing cause doctors used to do very much the in-out, you know, here's the intervention. 

[00:17:33]: And nurses used to be really, really good. But nurses now are really scrunched for time and resource and there's not enough nurses. And that's where the key thing is starting to slip in my view. So emotional wellbeing, I think most of it ends up coming from peer supports and communities in the end, rather than, uh, clinicians, which is a fundamental shift over the last five years, ten years, I would say. 

Jack [00:17:57]: That's really interesting. And how significant are those groups that, um, healthcare teams might recommend?  

Partha [00:18:02]: Oh, huge. I always say one thing, you know, uh, you know, we spend so much time on talking about, you know, complications, but the reality is that they're all linked with quality of life. They all are, right. 

[00:18:12]: You improve people's quality of life, things get better. I mean, it's not even rocket science. We talk about, for example, non-invasive glucose monitoring. It's got nothing to do with data. It's just a better quality of life, so people feel better. People are not pricking their fingers, so their diabetes got better. 

[00:18:25]: This isn't at all rocket science. So, to your question, is it important? It's vitally important if you're in a better frame of mind. You can focus on your medications, your diets, your life, et cetera. If you're not, you can't. But unfortunately, I think we see diabetes and not just diabetes, medicine by nature. 

[00:18:42]: There's a very physical thing and there's a dissociation between the physical and the mental aspect, which is a big, big problem. And thereby nobody sees it as a chronic disease, which has got, you know, physical and mental aspects of it. So, you have a conversation about your HbA1c and what you would change and your next medication, then it's done till the next 12 months. So yeah, that's a big, big problem.  

Shivali [00:19:02]: In my experience, clinicians have been absolutely phenomenal at every stage of my journey, and I don't think that I could have progressed as I have if it wasn't for their expertise and support. I think sometimes what I find interesting is that clinicians are more willing to help if they see that you are making an effort also. 

[00:19:23]: In your journey, are you having a hands-on approach? And I've never felt that kind of disconnect on a mental level. But also, groups like Diabetes UK, I’ve always found really supportive, whether it’s logging on online, having a look at a forum because I’m not sure about something and finding a wealth of information or attending local and regional events where you meet people and have conversations about your diabetes and how it affects you and all that kind of emotional support is really, truly out there in those forms as well. 

Jack [00:19:56]: I really appreciate, and I'm really happy that you could find some comfort there. And we love that the forum brings people together and it provides that community for people looking for just support and answers that- hopefully they do get it from their healthcare team, but if they don't, we're really happy that we know that's a place where they can find that.  

[00:20:12]: So, what I'd like to talk about next is a little bit towards the future. Patha, so we're seeing all sorts of new treatment developments for diabetes across technology such as hybrid closed loop systems, as well as new drugs. So, this month the government announced a two-year pilot trial to roll out Wegovy, a brand name for the weight loss drug, semaglutide, which Shivali, you've mentioned with Ozempic earlier. 

[00:20:33]: And these developments are all hopefully helping to create a world where diabetes can do no harm for the next generation. So how excited are you for the future of diabetes treatments?  

Partha [00:20:45]: Depends to- I mean if you're talking about this country, I mean, or globally. I think if you'd look at this country, we have been relatively fortunate, I would say, in diabetes care to have access to all the drugs that's available out there. Though don't forget that the Wegovy trial that you've just mentioned, we just don't have enough Wegovy because everybody's using it in the private market, right? 

[00:21:06]: So, there is that. Closed loops potentially can be really exciting and if all the plans go to play, so that's still to come. So, I think there is a huge opportunity and there is a lot of focus continuing to be on diabetes, which is great right? So, I think that's good. I think, globally, it's a different picture because I think the gaps are gonna continue to widen. 

[00:21:26]: And what I say to every single charity and policymaker and conference organizer is that it's all very well to talk about the science and the academic publications. But if it's not getting to people uniformly, uh, the science is only as good as a piece of paper or a line on your CV, right?. So, I think that's quite an important message, which I want to pass on to all academics and everybody who does research. 

[00:21:47]: Your research is not worth anything if it doesn't get into people's lives. That's an important point. So, am I excited about diabetes care? Yeah, of course. You know, I think there is, in the UK there is a host of really switched on leadership in the clinical community, which is good. Very strong charities like yourselves, Diabetes UK, and also other partner organisations like JDRF et cetera. 

[00:22:08]: And there is a very strong patient voice. I think that's a really good tripartite combo, which works really well. And uh, so, you know, I work in the national team in a policy role and we have been blessed with that support to sort of, you know, get the funding that's needed and do all that sort of stuff so- but that doesn't happen without this sort of community behind us.  

Jack [00:22:29]: You speak about the worldwide challenges, and I wonder how significant inequality is in the UK as well, because we've done research into this and we know that people with inequality and facing really tough conditions can find it much harder to live with diabetes. 

[00:22:47]: And I wonder how significant is that when it comes to treatments as well and talking to these people maybe about treatments. 

Partha [00:22:53]: So, I think the pandemic probably shone a light as to what's happening. I mean, I'll be very, very honest, you know, the, the colour of your skin matters in this country. There's no question about it. 

[00:23:02]: You know, people really struggle with the concept of the NHS, with the jewel in the crown of this country. Uh, or can it possibly be racist from that point of view? The answer is yes. The police force is, the fire brigade is. Today they've said, uh, the England Cricket Board is, so why will the NHS be exempt? 

[00:23:18]: They're all part of the same society. Uh, so, and you see that in every single data set that's out there, and also deprivation matters. So, it's also very elitist, you know, so there are the same issues there, and that you can see the gaps based on deprivation gaps, based on ethnicity that are there. I think the positive thing about that is that people are aware of it and lots of people are working to close it. 

[00:23:38]: That's the good thing. There are still will be segments of people who feel this is nonsense and you don't need to worry about it. But hey listen, you know, if it's not affecting you, then it's not a problem right? For the people who get affected, it's a problem. So, uh- and I think it's the role of all of us in a fair society to say, if the NHS is supposed to be equal to all, then it's gotta be equal to all, irrespective of what you earn and what the colour of your skin is. 

[00:23:59]: So, the NHS has got issues. But I would say the good thing is that there is a much wider acceptance of those issues than there was probably five years ago. People will talk about it and I suspect that's probably first part of the journey and now the data needs to reflect all the hard work people are putting in. And that's important going forwards.  

Jack [00:24:18]: Absolutely huge. Yeah. Hugely important points. Shivali, I wanted to ask you as well, the changes that you've made, and you have made in the last recent years, have been so profound. And how important is having your family on board and a wider support network for this? 

[00:24:34]: Because I know having the support of my wife throughout the years has made adapting to certain treatments much easier and just having someone to share that information with. So how important was that for you, not just at the beginning of your journey, but all the way through up until now?  

Shivali [00:24:48]: So of course, family and peer support is very, very important, but for me, culturally at the very beginning of my journey, it wasn't something that is acceptable. 

[00:25:00]: Um, I'm South Asian by background and, um, I often joke that you'll see wives following their husbands making sure they've eaten and taken their insulin, but you'll never see a woman at an event taking her insulin or looking after her blood sugars. Uh, however, there'd be a massive queue at the toilets because every woman's about to go in the toilet to get her injection. 

[00:25:22]: You know, it's kind of an inside joke. Um, but what I found in the years that I've been diabetic is that that stigma is slowly deteriorating, um and I like to feel I'm doing a little bit to help with that. I'm involved in various projects where I represent the South Asian voice and deal with these digital inequalities and things like that that Partha just mentioned as well. 

[00:25:45]: I feel like the familial support and community support has come after I've raised my voice. I've raised my voice to say, this is my condition. I am an Asian woman with diabetes and I'm not gonna hide in a toilet to take my injection, and it's not my fault because there's a lot of blame associated with conditions like type two diabetes where the community sort of says, oh, you know, you are fat, you are big. Maybe it's something you've done. It's your choices.  

[00:26:15]: But having spoken up about my condition, having helped so many people who now approach me and ask me questions, open that dialogue for other young women, I can honestly say that my family has grown, and I'm not only a voice for those people, but also I feel like the support keeps coming in. 

[00:26:34]: It keeps pouring in. People keep messaging me and keep saying, you know, keep on the work that you're doing because having these conversations and dialogues is helping to eradicate some of that stigma, which, you know, well and truly shouldn't be there, but it is.  

[00:26:50]: And by doing that, we're having dialogue and education even for the older generation who will approach me and say, you know, I've been living with this for a very long time and you know, I struggle too. And it's then that I have conversations with people about, you know, have you spoken to your GP or your diabetic team or- and just having those conversations, um, has helped a lot of people and I think something that we mentioned earlier, the future of diabetes, I hope for everybody will be one without stigma and the availability of all treatments, whether that's a Libre, regardless of whether you're type one or type two.  

[00:27:30]: But basically, whatever you need to treat yourself becomes available for you with some education and knowledge of what's available to you, if that makes sense. 

[00:27:41]: I know that I've kind of done a loop on our conversation, but I just find it fascinating how, you know, like right now, I think I would really benefit from Libre because my remission has broken, my diabetes has broken again, and I'd love to be able to see what's going on there, but I'm not eligible for a Libre. 

[00:28:01]: I'm hoping in another five years or ten years that technology is much more widely available globally and should be if you need it. I'm not saying every type two diabetic should get it if they don't need it, but I think it should be on a sort of case-by-case situation.  

Jack [00:28:19]: You've made some really interesting points there, and I think the first point I'd like to comment on is just how courageous you've clearly been in trying to make this change and dealing with stigma that you face and also in regards to technology so, episode three, we actually spoke about technology and we spoke about the NICE eligibility criteria.  

[00:28:37]: And we had someone on from Diabetes UK, Sam, who on the day of the episode, had applied for a CGM and the request was in with her nurse, and the day after the episode was recorded, she was actually granted a three-month trial because she demonstrated how active she was in trying to manage her blood sugar levels and understand why her blood sugar levels would sometimes fluctuate for reasons she didn't understand, you know? And, you know, we really hope that trial works out for her. 

[00:29:03]: Just going back to the stigma that Shivali's faced, Partha, how common do you find this is? Is it either, whether it's within South Asian communities or people from outside of South Asian communities, that stigma of a diagnosis and perhaps that reluctance to make certain changes. 

Partha [00:29:19]: So, I think you can give the answer in different parts. I mean, I think type one diabetes, uh, I'll start with that, has got its stigma, but I think there is a lot of work and a lot of patient voice in that space, which has fought against it. So, I think that- there's a constant narrative. People with type one diabetes have got a louder voice, no question. 

[00:29:40]: And that has helped over the last five, six years, I would say. Type two diabetes is a different kettle of fish, uh, because I don't think there's enough public voices, which circles back onto because they're not public voices because of the stigma associated with it. And some of the reason is what you get on things like social media where, you know, behind a keyboard, everybody's a very brave person. 

[00:30:02]: So, you have anonymous accounts posting things about how you are fat and how you shouldn't have eaten cakes and you know, the usual nonsense. You know, however tough you are, that has a bearing on your wellbeing after a certain period of time, right?  

[00:30:15]: So, I think that's why I think charities will have a bigger role and should have a bigger role rather than leaving it to individuals. Type one, as I said, it's a very different kettle of fish because people can turn around and sort of battle it out and go, it has nothing to do with me. But by nature, by saying that, that also shifts a bit of back on the type two going, like as if to say by default, well those guys, you know, all those types though, they got it because they- why don't mix me with them. 

[00:30:39]: So, that happens and that sort of, even though it's not intended, that sort of does add to the stigma because people go, oh yeah, I got that. Yeah, okay, yeah, I got that type one. Of course, it's not your fault, but the type twos, they're all just fat, right? So that narrative keeps building and people are not always aware that that subconsciously feeds. 

[00:30:58]: So, type two, I think people will find it difficult because we're in a very odd world where people, you know, social media has opened up all sorts of portals, right? Racism, sexism, homophobia. People are very open about those things. You know, very brave behind anonymous accounts and having a degree of obesity, uh, comes with a huge stigma, which is linked in to type two diabetes. 

[00:31:18]: So, all of that sort of feeds in the, you know, and you see the media narrative around it. So, there's that. And I think then if you break it down to the South Asian community, I think people need to understand the cultural impacts of that, uh, is big. And I can tell you people don't get married because they don't wanna declare their hand. It's seen as a bad thing.  

[00:31:36]: It's seen as even though, well culturally, we are all prone to having type two diabetes because all our events are linked with, well only sweets really. So, it's a- it's a weird narrative and I think in the South Asian space there is, I would struggle to think of many celebs who have come out and said that they have type two diabetes, while the honest truth is just simply based on data, there has to be, right?  

[00:32:05]: So, in the type one space you have got from Pakistan, you've got Wasim Akram and in the South Asian community recently have had a very famous actor Fawad Khan can coming out and saying, I've got type one diabetes. So suddenly people are looking and they go, okay, alright, then you can be a World Cup winning cricket champion. 

[00:32:20]: But if you then go like, well, what about type two? And you're thinking, hmm, right. Now I'm struggling. So, they're not coming out. And if celebs with all their following are not coming out, you can see how difficult it's for people. You know, for Shivali and others to come out and be the advocate, it takes its toll. 

[00:32:36] So, I think that's where I would go back onto the role of charities to sort of fight that stigma very publicly is very important.  

Jack [00:32:44]: I completely agree, and we are doing research into stigma, and actually one of the episodes in this series is going to be dedicated to stigma across all aspects of living with diabetes and we're really excited to have those conversations and to try and build awareness of that.  

[00:32:57]: So, my final question to you both is what advice would you offer to anybody listening to this episode who is struggling with their diabetes plan, whether it's on the emotional wellbeing side of things, or they're really struggling to integrate their new medication into their lives, and Shivali from a practical advice side of things, where would you come from on this? 

Shivali [00:33:15]: I think absolutely speak to your clinician, speak to your teams. They’re available for you and you can be referred to further kind of experts if you need to be and reach out to communities like Diabetes UK and others. There are many, and if not, if you know individuals open those conversations because you never know where you’re gonna find that support that you need. 

[00:33:38]: And if a treatment isn’t working for you, don’t suffer. Nobody needs to suffer from their treatment. The treatment’s supposed to make you feel better. If it’s not doing that, then raise your voice, you know? 

[00:33:49]: Um, and even if it takes a little bit of time to get the treatment that you need, persevere, which is exactly what I'm doing right now, trying to find an alternative. Somebody will help you find an alternative. And. Just persevere. You're entitled to it you know. Do what you need to to get the treatment that you need.  

Jack [00:34:06]: Absolutely. I think that's a really important point. Partha, what would you add to that?  

Partha [00:34:10]: So, I think we are in very, uh, tough times at the moment all around, right? People are still recovering from the pandemic which just had a massive bearing on people's wellbeing, right? And then jobs and everything like that.  

[00:34:22]: And the NHS is also struggling. Uh, so I think I would echo a lot of what Shivali said and I would probably put a bit more onus on peer support and ask people from the community also be to be around to reach out to each other. 

[00:34:35]: So, clinicians, absolutely, who are under pressure because of times and stuff. But I think try and have colleagues and friends who can help you in the sense of not just emotional wellbeing, but with advice and what's available, what, you know, what does guidance say? What are you eligible for? Things like that. 

[00:34:51]: So, and ask why not if, you know, if, if it's there in the NICE document, why can't I have it? What, what's the situation? And I think people need to remember how much of a positive impact that's had for people in the type one diabetes space, right? They've gone around, they've challenged and see where we are right now. 

[00:35:08]: I mean, we are, what in technology and type one, we are probably one of the foremost nations in the world at the moment about our access. But that's happened because the community has gone out and challenged clinicians, challenged commissioners. So, the type two space, very similar thing can be happening. 

[00:35:22]: But it goes back to the point we said about having those voices as well. So, I would say if you're struggling, don't struggle alone. Uh, reach out to charities like Diabetes UK. Try and find peer support groups. And if you're in a place where you're not struggling, do your bit to try and help out somebody else who may be. 

Jack [00:35:39]: I think that's fantastic advice and yeah, I really hope that people listening to this episode hopefully feel empowered if they feel like they want to make changes, they know what they can do and who they can turn to.  

[00:35:50]: And Partha, Shivali, it's been absolutely fantastic talking to you both today. Thank you so much for joining us in the podcast and for sharing your stories and your experiences about diabetes treatments. Thank you so much.  

Shivali [00:36:01]: Thank you, Jack.  

Partha [00:36:02]: Thank you very much. 

Jack [00:36:09]: That's all for this episode of Diabetes Discussions. We hope the conversation has helped you with your own experiences of living with or supporting someone with diabetes.  

[00:36:18]: For more advice and support, search Diabetes UK online, or check out the information and links in the episode notes. Don't forget to hit subscribe, so you never miss an episode. 

[00:36:28]: And if you like what you've heard, please rate and review to help others discover the podcast. Thanks for listening. See you next time. 

More information about this episode 

The views and opinions of the guests are their personal stories and may not reflect the views or advice of Diabetes UK. The content in the podcast is not intended to constitute or be a substitute for professional medical advice, diagnosis, or treatment. It’s important you always speak with your healthcare team for specific medical advice.   

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Shivali Modha

“It's worth remembering that you are so much more than diabetes. I've found it really easy to be overwhelmed by the numbers and think that that is really what defines me, but know that you're made to be so much more than this."
- Shivali, who features in our episode about treatments. 




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