Developing insulin safety across a system

Emma Kirk
Hi, my name’s Emma Kirk and I’m the Medication Safety Officer Network Lead. I work in the Medicines Use and Safety Team and I’m joined by Claire, an Advanced Specialist Pharmacist who is working on a project on insulin safety with us. Hi, Claire, thanks for being here today.

Claire Davies
Hi, Emma, and thanks for inviting me to chat with you today. I’m hopeful this is going to be a really interesting discussion.

Emma Kirk
So, Claire, can you explain where this sits as part of our insulin safety work?

Claire Davies
Absolutely. So, we felt we couldn’t do a piece of work on diabetes without involving people living with diabetes in our work and having that personal and lived experience perspective.

Emma Kirk
I totally agree. It’s so important. So, what do you want our listeners to get from this podcast?

Claire Davies
So, I really hope it provides insight and informs people on the personal level of insulin safety, for anyone who’s working with someone who has diabetes to think of additional considerations around their care, which we’ll discuss today, such as diabetes diagnosis, insulin devices, faith, hypoglycaemia, and admissions to hospital.

Emma Kirk
Wow, that sounds like so much to cover, but so, so, useful. Where shall we start?

Claire Davies
I think we should start with Abdul, a gentleman living with diabetes, who spoke to me about his diabetes diagnosis.

Emma Kirk
Sounds good to me.

[cut to pre-recorded interview between Claire Davies and Abdul Rais]

Claire Davies
Tell me a little bit about yourself, your diabetes journey, that kind of thing.

Abdul Rais
Yeah, certainly will. I was diagnosed with type 2 diabetes in December 1999.

Claire Davies
OK

Abdul Rais
At that time, I had no idea what diabetes was. I’d just heard from other people who had diabetes said it’s something where you, you’re not allowed to have anything sweet, and that’s as much as I knew. What happened with me was that I started feeling very, very tired and very thirsty, you know, the classic symptoms of diabetes. But during that period, I had visited my GP, I had been to for my eye tests and so on at the opticians. No one picked up anything or questioned me, I was in my late 40s at the time, I think about 47 or so. Nobody picked it up and nobody questioned me about anything, so I was none the wiser. But towards the end of said, well, let’s say beginning of December, I just started feeling so lethargic. And I used to travel a lot in those days. I had a job that involved a lot of driving, so I put it down to well, I’m in my late 40s now and I’ve been doing, you know, like 50-60 thousand miles a year for the past 17 years. So, you know, age creeping up, I had an excuse for everything. Very thirsty, well it’s because a lot of the time I wouldn’t get time to eat, on, you know, the job I was doing for projects I used to be on, I was an IT consultant, so, I want to like, come home and get, you know, my kids were very young then. So, often I would miss my lunch breaks and evening meals and so on, so that, you know I could get home quicker. And so, I’d be, you know, drinking a lot of water, and I thought that’s because of, you know, I’m drinking a lot of water because I’ve got used to being, you know, drinking lots of, being thirsty and therefore obviously I then pass water a lot as well.

Anyway, in December, about middle of December I just developed this sort of pain on the righthand side of my stomach. It wasn’t really bad pain, but it was continuous, niggly. So, I went to the GP, and he thought it was appendicitis and rushed me to the hospital. And it was while I was in hospital that they did the blood tests and came and informed me, or actually asked me if I knew that I have type 2 diabetes. And I said no, I didn’t know that. And the doctor in the hospital, he said to me, said ‘your blood glucose levels are running at 30’. Meant nothing to me, so I said, ‘what does that mean?’, he’s obviously talking about millimoles…

Claire Davies
Yeah

Abdul Rais
…but he said ‘they should be between 5 and 7’, he said. And this is early in the morning, I hadn’t had anything to eat. So, he said they should be between 5 and 7. So I said, ‘oh, OK’. And then he said ‘I’m surprised that you’re actually sitting up. You should be in a coma by now’, he said, ‘you’re very fortunate that you turned up when you did. If you hadn’t been here for another few hours, you probably would have gone into a coma’. Now that really sent shivers down my spine. That’s when it really sort of hit me that, what, you know, how fortunate I was that I got to the hospital, but also that, you know, what a dreadful thing to have!

So, the first week, well, they put me on insulin immediately, obviously, there’s no way I was going to leave the hospital. They said ‘we’ll worry about your stomach pains afterwards, let’s, you know, stabilise your blood glucose levels’. So, they put me on insulin, and I was on insulin, I think, for two days before, I mean during that period obviously I just wanted to sleep. That’s all I wanted to do, you know. My family would come and visit me, I had no idea who was coming, who was coming. I’d probably open my eyes for a few minutes and I’ll be, you know, back to sleep again. Second day, I think it was maybe third, I can’t remember exactly now, I suddenly felt cold sweat coming and my body was like, my pyjamas were honestly just soaked. And I felt this panic. I couldn’t understand what was going on, got confused and on the side just started shouting, ‘nurse, nurse!’ And I remember the nurse coming over, and she looked at me and she said, ‘oh my God, your sugar levels are 1.7 or 1.9’, or something. And she ran around sort of, as in those days, of course, you know, awareness wasn’t as great as it is nowadays, though we still got a long way to go, but anyway. So, because she panicked and I was already panicking, I just felt that I was, it’s my last moments. I really thought I was going to die. So, I heard another nurse states ‘give him some sugar in milk, give him some milk and give him some sugar’. So, anyway she ran across gave it to me, had that and probably about half an hour or so later, I felt a bit better, a bit more energy. But my heart was like, still pounding, like, you know, it was going to burst open. And that was my first hypo.

Claire Davies
So you had two…..

Abdul Rais
And that….

Claire Davies
Sorry, Abdul. You had two extremes within 48 hours. You had a diagnosis, well you had three extremes: you had a diagnosis, you’re starting insulin therapy, and then the thing we really try to avoid, hypoglycaemia. And I will, I’m gonna let you carry on, of course, with your story, but I just want to ask, how did you feel when you were like, you have this diagnosis and were told you need injectable, you need insulin. What was your understanding of insulin at that point? Was that an overwhelming thought? Was that ok that’s what I’m being asked to do? Was there any awareness for you of crikey this is going to change my life potentially?

Abdul Rais
Well, you know, if there’s one phobia at that time, I had one phobia, I didn’t know anything about the hypo. So, the one phobia I had was that of needles. I absolute, even to see, you know, a syringe or needle I would really, like, pass out. So, when my kids had to have their injections and things, you know, when they were growing up, my wife had to take them because I couldn’t bear to see, you know, the needle going in the skin. So that was, that phobia was already there, but obviously in hospital because they’ve, you know inserted. What do you call it?

Claire Davies
Like a safety needle, yeah.

Abdul Rais
Yeah, so, I didn’t have to worry about, you know, being injected at that point, I didn’t even realise. And I think it was about a week later. But, by the way, my sugar levels, though I had that Hypo then, but they didn’t always stay so low. They were fluctuating because I remember the day I left, my sugar levels were 17 and they said, ‘yeah, you can go home now’. So, they must have fluctuated in between. But I don’t believe I had another hypo, but the fear had stayed with me.

Claire Davies
From that first, from that first moment from that first diagnosis, that fear of this incident could cause me to have this happen, Ok?

Abdul Rais
Yeah. And so, they when I, before I left that week, they said to me, ‘ok so this is what you have to do. We’ll give you some insulin filled injections and you have to inject yourself’. And for me, I mean, in those days, needles were quite long as well, of course, nowadays it’s piece of cake. There were no insulin pens at that time for me, so it had to be that the old, sort of, syringes, you know?

Claire Davies
Yeah.

Abdul Rais
So, I looked at it and I said ‘there’s no way I can do this’. So, the nurse, who is, I suppose Diabetes Specialist Nurse, she said to me, ‘look’, she said, ‘I’ve been doing this job for 30 years and I have never come across a situation where someone doesn’t have some sort of, you know, fear about that needles. But it’s ok’, she said, ‘I’ll teach you how, and you can do it’, and so on. And so she asked me to hold the needle, the sorry, the pen in my hand and, syringe I mean, sorry, and my hands, my whole body was shaking. She said ‘just hold it, don’t do anything with it just hold it’. So, I had it for about half an hour or so. Then she started talking about the things just to try and, you know, calm me down. And then she said, ‘now I just want you to pinch your stomach just below the belly button’, she said, ‘and then just touch the needle. You don’t have to press it, you don’t have to push it’. So, it was like gradual education. I did manage. She said’ as soon as you are able to inject yourself, you can go home. Failing that, you have to have a member of your family or somebody else who will, you know, inject you and you have to do this twice a day’, and I thought nobody’s going to be with me 24/7, so you know just grin and bear it, I just have to do it myself. But for a long time after I came home, I used to like, you know, half an hour or so before the time for me to inject, I used to start shaking and really, really frightened and I get all sweaty and miserable. I didn’t want to talk to anybody, and, you know. I eventually came out of it because once I’ve been given the insulin pens, you know the prefilled ones….

Claire Davies
Yeah. So, the devices have changed, haven’t they? Which have made a…

Abdul Rais
Yes. Yeah.

Claire Davies
…huge difference and I imagine that has made a huge difference to your experience. But you’re not uncommon to have been someone who had to start on syringes. And there are still people out there who use syringes out of choice as well, so that, you know, there’s positives and negatives to both, aren’t they? But for you, that’s probably been a humongous change in terms of, you know, psychologically and safety as well, I guess.

Can you explain to me how moving from instant syringes to disposable devices, what difference that made to your life?

Abdul Rais
Yeah, it, with disposable devices, I mean, they were, they were. We’re talking about like… insulin pens today?

Claire Davies
Like a pen, yeah, exactly. Was it, when it happened, was it just, did you, how did you feel when that happened and someone said ‘you don’t need this syringe anymore, look at what we’ve now got’. What was that like? Explain that to me.

Abdul Rais
Yeah. Well, I didn’t know how it would work, but once I, you know, it was amazing that the first time, I’ll never forget, it was like I just held the pen up and the sheer weight of insulin, you know, the cartridge and the needle was much, much smaller. And it, I just, you know, put it on my tummy and it just went in and I was like, I was expecting blood or something – nothing happened. So, you know, whatever amount I had dialled, I injected myself and it was like wow, it was just amazing feeling and now, as I said, it’s a way of life, it’s not a problem for me at all. Plus also because it’s a cartridge, you know that, you know, it’s not, you don’t need to carry a new syringe every time. This in my case, you know, there’s a 300ml in there, of insulin in there and I take about 7mls a day, so it lasts, I know it’ll be there for another fortnight, I can carry it with me wherever I go. So, there’s independence of that as well, you know, to carry a new syringe every time. So, there’s been tremendous, tremendous experience really.

Claire Davies
Yes, and ensuring that the device we give you, I always say the best medicine for someone, and it applies to insulin as well, the best medicine, the best device we give is the device that fits the patients’ lifestyle and works for you.

Abdul Rais
True.

Claire Davies
So, you give a very powerful story of how insulin safety and devices have changed over the years and that’s improved care for you.

[cut to discussion between Claire Davies and Emma Kirk]

Emma Kirk
Wow, that is quite a story and lots of things to pick out from that from Abdul. What are your main take home points from that Claire?

Claire Davies
I think Abdul spoke so eloquently, but he had a really roller coaster journey, didn’t he? Diagnosis, starting insulin, and then hypoglycaemia in a very short space of time. That’s a lot for anyone to take in. Plus, the needles and devices and how far we’ve come and how we give insulin.

Emma Kirk
I agree, and I know from the other people that you’ve spoken to that fear of hypoglycaemia is a very real risk around insulin safety, isn’t it?

Claire Davies
Yeah, absolutely, and it shouldn’t be underestimated. Another person I spoke to was Sarah, who discussed how she’s limited in having insulin due to that hypoglycaemia, and how she feels, and how she’s scared and fearful of that. Shall we hear from her now?

Emma Kirk
Great idea.

[cut to pre-recorded interview between Claire Davies and Sarah Parsons]

Sarah Parsons
So, I’m type 2. I was on insulin from December roughly 2022 through into June 2023 and was actually taken off it because, in hospital, because of major hypos and really complex events. Plus, I also, I suffer with blackouts and seizures. So, if my husband can’t get a blood sugar reading when I was on insulin, it became quite dangerous.

Claire Davies
Yes, of course.

Sarah Parsons
I have instances where my blood sugars, when I’ve come to out of seizures, have been under 4, not dramatically under 4, usually in the 3 to 4 bracket, and it’s been, if I’d have been unconscious for much longer, because my seizures last a couple of hours. And I’m often on my own because of my husband’s job, there’s no way that he can tell if I’m unwell if I can’t say, seizure warnings now, he gets a gobbledygook text message that are usually garbage that he can’t decipher and he knows I’m going into a seizure.

Claire Davies
Seizure, ok.

Sarah Parsons
And because he’s a shift worker and he’s out for 12 hours at a time. So, if I can’t raise the alarm myself to him, he’s got no way to check on me, which is why we were appealing for a sensor so that he could have an app to log in. In the end, the diabetes team in hospital felt the risk was too high. It was the…

Claire Davies
What would make things safer and better for you?

Sarah Parsons
A sensor.

Claire Davies
A sensor, yeah, to enable you to have the therapy, but be able to keep a safe…

Sarah Parsons
Yeah.

Claire Davies
..monitor on what happens so you could have the drug safely.

Sarah Parsons
Because, yeah, my fasting bloods, and I’m on a massive quantity of gliclazide and, which is going up this week, and a massive quantity, full quantity of metformin. So, now, I, they still won’t need to put in insulin because there’s nothing else they can give me because I have pancreatitis from gallstones that’s not treatable, like, because of my comorbidities, I can’t have the surgery. So, it’s really, really complex. The Gastro team are pulling their hair out, the diabetes team walked away from it and said, we said no insulin, we don’t want to know. DSN [Diabetes Specialist Nurse], who is amazing at my surgery and her supervisor are just bouncing backwards and forwards between departments. No-one knows what they can give me, but they’re saying you need to be on insulin, but no-one will help my poor diabetes nurse to get it all sorted out.

Claire Davies
And do it in a safe, a way that makes you feel safe as well…

Sarah Parsons
Yeah.

Claire Davies
…which is so important.

Sarah Parsons
I even live in sheltered housing, so it’s not a case of I’m out in the community. I’m actually in specialist housing, that I’ve been placed in by adult social care with my husband in what they call an extra care complex. So, there’s carers in-house and everything who, and the district nurses are in and out of here every day doing insulin jabs for two or three other flats. So, there’s resources there but because of my age, and the fact that I’m fairly with it, they don’t want to know.

[cut to discussion between Claire Davies and Emma Kirk]

Emma Kirk
That’s another very strong story from Sarah. As healthcare professionals who work with people living with diabetes, Claire, what can we learn from that?

Claire Davies
I think this really spoke to me and should speak to us about holistic individualised care and looking beyond just medicines to what will be best for someone for their treatment. When Sarah spoke, she also discussed having an in-hospital experience of hypoglycaemia, which has clearly been very distressing for her.

Emma Kirk
You’re absolutely right. And what we do need to do is ensure that the care we give is individualised. Are there any other elements of insulin safety this applies to?

Claire Davies
One consideration for insulin safety is around faith, and fasting, and Ramadan. Abdul spoke with me about this. Having diabetes can be challenging enough and this adds another element of complexity. Let’s listen to that part of my conversation with him now.

[cut to pre-recorded interview between Claire Davies and Abdul Rais]

Claire Davies
And I want to ask something: you mentioned things about mosques, and faith, and things like that. How do you find, because you’ve obviously got a very good link into some of those excellent communities, people manage their diabetes and the safety of insulin around things like Ramadan, for example? Does that ever come up in your conversations? Is that something people struggle with and, you know, I’ve got friends at work who, you know, will fast and I think how on Earth do you manage this, let alone when we add the potential complications of insulin and diabetes on top of that, and how we improve people’s understanding of that.

Abdul Rais
Yeah. Well, I, funny enough, I actually did an interview, I was telling you about, on the radio, it was to do with Ramadan and diabetes. And this is what I do around January, February time or, you know, a couple of months before.

Claire Davies
Because it’s because it’s coming, yeah.

Abdul Rais
Ramadan, yeah. To say to people that if you intend fasting, here’s what the signs that you’ve got to lookout for, you’ve got to think about dehydration, you’ve got to think about hypos and hypers, you know, and there are options, there are alternatives to, you know, if you’re not fasting. For me, for example, I don’t fast and I’m quite open about it. It’s because my religion allows me that option…

Claire Davies
Yeah, you can have medical exemption, yeah.

Abdul Rais
…you know that if I’m unable to fast and, you know, I can’t risk. Yeah, I can’t risk, you know, fasting and then ending up with more complications. So, I suggest to people that, you know, that they should go and speak to their surgery, they should speak to their Imam or Scholar, whoever they’re following. But make sure that they understand diabetes, because, generally, if you, because when you know have diabetes you don’t look any different to anybody else, you know a normal person. So often it does happen that people do, in the South Asian community, because I’ve had a lot to do with that, they tend to trivialise diabetes, really, really, you know like, ‘oh, well, everybody has it, so what?’, you know, and ‘God has, you know, set a date for my death I can’t avoid that, why should I, you know, worry?’, you know. So, I always say to them, ‘God has set a date, but the point is, how do you want to die between now and then? With, you know, limbs amputated, and blindness, and dialysis, or do you want to sort of like, stay healthy by following what you’re supposed to, to look after your body, you know. So, sometimes my talk is quite, like, hard hitting, but I know the community as well, and I know it probably won’t offend them.

[cut to discussion between Claire Davies and Emma Kirk]

Emma Kirk
This is just one example of the different considerations of insulin at different times in people’s lives, isn’t it? And how this can change?

Claire Davies
Absolutely, Emma, and you’re right. And it can change and it does change. And there are other considerations and that is just one example. One’s admission to hospital or admission to a care setting, which I know is something that people living with diabetes are really conscious of in case things don’t go as smoothly as they should.

Emma Kirk
You spoke with Charlie about that, didn’t you? Let’s hear his story now.

[cut to pre-recorded interview between Claire Davies and Charlie Churchill]

Charlie Churchill
Ok, I had diabetes since 1989 and you can do the maths.

Claire Davies
Ok.

Charlie Churchill
I went onto insulin in 2005 having been…

Claire Davies
Ok.

Charlie Churchill
…on metformin and gliclazide, that kind of stuff. Ok, now in 2019, five years ago, six years ago, I had seven nights at Royal Harefield…

Claire Davies
Ok.

Charlie Churchill
…with full board, all-inclusive, with a free trip to the theatre which was for a double heart bypass and an AVR (aortic valve replacement) I’m sure…

Claire Davies
Yeah.

Charlie Churchill
…you’re familiar with all this stuff. And so one of one of the headaches that I was flagging beforehand, I could cope with the operation, is really what what’s gonna happen about managing diabetes. Because at that time, give you a flavour of the doses I was on, what 42 units of Lantus, and I was taking NovoRapid with my meals, whatever it was. Now, if you just get my mindset, ok, I have, all I wanted was to get over my heart problem, ok, because I was a wreck basically, that’s a whole different story altogether. And so, I said, what do I cause here’s my, here’s my stuff, I keep it in in something like this, so I got insulin pens and blah blah blah. And of course, they take that from you, don’t they? They hijack your meds when you go in the hospital. And he says ‘don’t take anything, we’ll manage your diabetes for you’, ok. But it wasn’t the actual anaesthetist in the operating theatre, so this was just an at large conversation, right? So, I don’t take any Lantus that night and I then go and have my operation, you know [makes drilling noise], and all that kind of stuff. And when I came round and I went through, was in intensive care and high dependency and back on the ward, ok. One of the things they discovered, I’m, I mean, I didn’t feel a thing, quite frankly, it was quite a painless, it was uncomfortable, lots of things hanging out of me and goodness knows what, but I was never in any pain. But they had immense trouble managing my blood sugar levels, ok, and it was coming round that, I do have to say, that, that some of the nurses were blaming me for the fact that I must have had a tub of celebrations under me bed, or something like this, and I have spoken to Royal Brompton about this, there’s nothing here that’s telling tales, ok, because I’m a volunteer with them now. But there was a lot of difficulties in bringing it down, it was, you know, cricket score levels, and they had to use something, which I’m sure you’ve heard of, called a sliding scale and [laughs] a very entertaining experience. But the kind of language and difficulties I had was that when I came round right, had something to eat, I can’t remember what it was to eat and they said ‘do you wanna have a dessert?’, I said ‘well, what have you got’ and they went blah blah blah blah blah, and you got a little, these little tiny tubs of ice cream, ok, you know which is nothing, you know, sod all basically, excuse me. I had one of them and then when they look at my blood sugar results, because they’re still cricket scores, they say, ‘what are you doing?’, you know, and stuff like that. And I later came to realise that my body not having 42 units of Lantus is gonna screw up my blood sugars for probably a week, ok. I eventually saw a diabetes nurse who said to me it’s no surprise that you had difficulties with your blood sugars after your surgery cause the white blood cells, ok, are battling hard to cure you to, you know, to deal with the invasive surgery that you’ve had and it will all settle down in time and it’s rather unfortunate that your, you know, your complete time in Harefield which was very successful surgery right, was dominated by the decision not to do any Lantus. Some said, well, you should have perhaps been told to do half your amount or something like that. And sure enough, by the time I got home, which was after, what, on day seven, ok, and I was feeling so much better then, the kind of regular blood sugar levels returned, you know. But the actual stress and anxiety about doing all this stuff and having these conversations really got me down. And having a night with a sliding scale, it really isn’t great fun and having your… Because in those days, of course, I think you probably put a Freestyle Libre on a patient now who has heart treatment, I know that happens in some places. I’ve got one under on myself now. But it was a case in those days of being woken up every hour and having your blood sugars taken, and what is it? Oh, my God, da da da, back to sleep, you know. And I’m eating nothing. Nothing. All I wanted to do was to get it out. But you know, people talk about the food in hospitals and stuff like that. All I wanted to do, I had a what bowl of Rice Krispies, a bowl of soup for lunch time, bowl of soup, bowling for soup – there’s a good band! And a bowl of soup for an evening and that was me done. I wasn’t going hungry. But you know nothing I could do was bringing the blood sugars down until eventually it did when I was feeling a bit better.

And one of the other experiences I had was that because they take away your medication, you’re not self-medicating. People think that that’s what people do, but you don’t, it’s locked up, you know. We, I went in with lots of stuff that’d last me for the week and everything else, and of course it’s all taken away, ‘no we’ll do it all for you’. And then one day, instead of giving me, like, a typical NovoRapid pen with a screw-on needle on it, they had one where the needle pops out when you press it, you’ve come across these things, I’m sure, when you press it against someone’s midriff or somewhere like that, I had one of those, oh my God, it hurts. And I thought I’m really not happy but I just really wanna get out of this place. It’s not, wasn’t unpleasant, don’t get me wrong but managing diabetes whilst I was in there, overshadowed everything else. But eventually, as I say, it settled down and you know the hypos started returning a week or two later, you know, and things were ok. And they said ‘don’t worry about it’. So, the last thing you want to be worried about when you got somewhere like this going on, but the actual experience was it really just overshadowed the whole thing and stressed me out, basically. But that said, if there are things to learn, let’s learn them.

Claire Davies
You’re absolutely right, Charlie, and that’s exactly the point of this project is that so that when we have those instances, we learn from them, we share those stories and we learn as healthcare professionals and as people with diabetes what can be done better for others.

So one of the questions we wanted to ask you was: if we were to use this recording or if we were to speak with you or use another recording, you’ll have a captive audience of people who are interested in helping with people with diabetes who are interested in improving insulin safety, if you could give them a message, what would you give them? What would you tell them would make things better for people like you? What would be your take-home point to us?

Charlie Churchill
The education, right, the understanding, the knowledge of the different people involved wasn’t consistent. If you go through the briefing with the anaesthetist (I still can’t say that well!) who said, ‘don’t take nothing you’ll be fine’. I don’t know if that was a brush-off comment or he actually genuinely meant it. And of course I’m in cloud cuckoo land ‘cause I’m, I just want to have this operation which is quite, it’s a big day. It’s a big day. Ok, so there’s that one and all, there was other people afterwards saying, well, you should have taken, you should have been told to take half or something like that. But the fact that there was 44, 42 units, excuse me, of Lantus insulin not going into my body was going to screw me up for an appreciable length of time. There’s another factor that because I had a little sachet of marmalade with a piece of toast that that was going to send my blood sugar sky rocking to the cricket scores that it was and it was giving me a hard time. I’d just gone through the most awful surgery, I think I just wanted to cheer myself up little bit I seem to remember because I’d been through intensive care and high dependency and I really didn’t know what I was doing. So, there was that aspect to it and there was also this kind of inconsistency amongst the nurses of exactly how to, you know, help me bring it all down and manage it with this awful pen that they had where they shove it at you and the pen, and the needle popped out. I just felt I had lost what, my control because it was all taken away from me. I’m not suggesting I could have managed my diabetes better. It’s just the fact that they say right, ok, well, we’re here is we’re going to take this away from you because you know, we think you’re gonna do something silly with it or whatever, you know, I don’t know. So, you’ve got three things there. I will probably think those three are probably enough. That said, the surgery for what I went in for was perfectly fine, went very, very well and I’m so much better, you know, it’s five years ago now and I’m still thriving.

Claire Davies
But it’s disappointing that, like you say, your diabetes experience overshadowed that. And I think your strongest words there, as you say, you lost your control. And you might have seen it, you might not seen it, but there’s this fabulous statistic from Diabetes UK that say people who have diabetes manage your diabetes for about 8700 and I think it’s 57, but don’t quote me, hours a year and you see a healthcare professional on average for three hours a year. Obviously that year you saw a healthcare professional for longer than that. So, we know that that fluxes and yet those hours you were with us we didn’t quite get it right.

Charlie Churchill
No, no. Well, that’s it. Yeah.

Claire Davies
Whereas and that is disappointing that we couldn’t do that and that exactly one of the threads of our work is how we help empower people and services to help people self-manage their diabetes in hospital. And you’re right, it’s not that you’re gonna know exactly what to do and sometimes we don’t know exactly what to do, but together we should be empowering each other to help support you in those situations. Because you’re right, you have the kit, and you do this every single day.

Charlie Churchill
Yeah.

Claire Davies
We don’t do it every single day. So that’s very, very powerful.

Charlie Churchill
Because I’m so, I’m there thinking that I’m not used to having diabetes levels of this kind of gargantuan level, ok, and I’m baffled. But I’ve also going through and I’ve got things hanging out of me, as you can well imagine and all that sort of stuff as you know, you know what’s going on. And when I say lose control, I’m losing control of the situation, not necessarily about my blood sugar levels, but I’m at odds to do anything about it. And I place my trust in them to not give this any worry.

Claire Davies
If you were to be admitted to hospital, which I’m obviously hoping doesn’t happen or need another operation, something in the future, what would you do differently yourself given the experience you had previously? Would you advocate differently for yourself, do you think?

Charlie Churchill
Well, I probably certainly have. I think my trust has been broken in this aspect. And so, I would behave, I can’t actually think of the things I would say or the things that I would do, but I would be very more, a much more careful, I’m not saying suspicious, that’s the wrong word and I don’t think I’m reaching for the right word at the minute. But I’ll be a little, a whole lot more careful, cagey, are you sure this is desperate, is this definitely what you mean? Is this going to be communicated to so and so, you do realise, like, you know. But you’re in the hands of the people who are on the pitch on the day, aren’t you at the end of the day?

[cut to discussion between Claire Davies and Emma Kirk]

Claire Davies
I think that’s such a powerful message, isn’t it Emma? And we naturally do consider transfer of care and moving between care settings is a time for potential risk for all medicines and it’s a shame things didn’t go smoother for Charlie but there’s so much we can learn from that now.

Emma Kirk
This is really making me think differently about the personal perspective of insulin and safety, and I think it leads us nicely on to hearing from Toby, another person living with diabetes who has a different insight about using insulin safely when living with visual impairment.

[cut to pre-recorded interview between Claire Davies and Toby Morgan]

Toby Morgan
Well, I’ve been on insulin since December, that pre-mixed, NovoMix 30. So, we can find it be restrictive, even though it’s only twice a day. I’m not one for, like, having lunch really, but I’m finding I’ve got to have, like, something for lunch while I’m on that, and that’s a struggle. But yeah, I mean yeah, that’s nowt to do with like the safety issue or visual impairment, that’s just, like, me. But the challenge I find with the pen is when it comes to turning the dial because the numbers are so small. And I mean, yes, a few people said ‘ah, but Toby, you’ve got clicks, you can listen to the clicks as you turn it’. On reflection, being honest, I think if you’re on something like, say, maybe 5-6 units, then yeah, you can. You know, click 1, 2, 3, 4, 5, that’s, you know, easy enough, I think, so, I’ll give credit to that. But for myself, like, 20 units, twice a day. One, it’s very easily to get distracted like phone calls, or something, or whatever, or you just lose count. Then I’ve gotta be careful that, and make sure that I’m not clicking more clicks than I think I’ve clicked or not clicking enough because I think I’ve clicked more than I have. So, that’s a challenge in that sense, ‘cause, you know, listening to 20 clicks, it’s, you know, it’s, I think anybody’d struggled with that. And…

Claire Davies
And Toby, sorry, how do you manage therefore to ensure the dose you give is the dose you think you should be giving? Do you think you always stay safe with your insulin with that difficulty?

Toby Morgan
Well, I mean, luckily, I’m married and so, kind of, my safety nets like my wife there but it… I mean it’s when she’s been out and I’ve been about to take it and she just come in or something, and you know, saying I’m just taking my insulin and she’s like, on occasions, observed that it’s only a 16 or something, not 20, so, she’s corrected me. But had she not come in when she had, so she had not been there, I’d have been taking less. Thankfully, not more, but, you know, it still could have been the other way around. But I’m glad I didn’t take less. So yeah, so there’s that with the actual pens and I know you mentioned a plastic effigy looks like, the old fashioned kitchen food timers with the big dials and the, I think you said pharmaceutical company did make them and then stopped, and no-one ever was like taking the baton up to continue with that, which is a shame really.

Claire Davies
Yeah, you’re absolutely right. That is exactly what I did mention and it’s you’ve got a different, a different story, haven’t you about how we know, as we talked about, that diabetes can be linked sometimes to visual impairment and how we know there’s complications with visual impairment with diabetes. So, it’s an oversight that we don’t have a device that keeps those people safe to give a drug that we consider high risk. It feels like a gap.

Toby Morgan
Sorry for butting in.

Claire Davies
No, don’t worry.

Toby Morgan
When you consider like diabetes can, some people go on to develop diabetic retinopathy. Now there’s a lot of good treatment, laser treatment, injections, urgh! to treat the retinopathy, but it don’t always work for everybody. So, some people’s vision will gradually reduce even to the point of being, like, registered blind. But you’re absolutely right in that sense that, you know, if diabetes brings on visual impairment for someone then where is their safety mechanism if they’re a patient who’s already on insulin or ends upon insulin, you know, as a result of the diabetes? There’s nothing within the world of diabetes now that acts as like a safety barrier for them.

Claire Davies
And you potentially risk losing some independence as well and some control of being able to do your own insulin if we don’t have the ways to facilitate that, do we? When we spoke the other week, you mentioned as well not just the device, did you? You mentioned I think via e-mail the kind of the peripheral items, so, things like your blood glucose diaries, your needles, your monitors. How do you find that with your visual impairment in terms of keeping your diabetes safe.

Toby Morgan
Well, it’s really good that these companies designed these talking voice blood sugar meters. I’m not brilliant. The only snag is again your testing strips; it’s like I’m finding fault and I’m not. The testing strips, they’re not hugely big, they’re still small. So, when you use your lancet and you’ve, I mean, yeah, you know where you’ve pricked your finger because, you know, you feel it, so you know you’re bleeding there. But then to, like, make sure you get your blob of blood on that little bit of the testing strip, you know, it’s, that’s a very minute thing again, you know. I don’t know how they get around that; invent a massive testing strip, I guess, but that’s probably not gonna happen. But you know it’s, that, you know, that was, like, overlooked I think on the design of talking meters, so that, the challenge is still there. So, you know, I mean I’ve had to go through at least 3 maybe 4 testing strips on occasions because I’ve just not been able to get me blob of blood on the right point on the testing strip which, that kind of wasting testing strips then in that sense, so, yeah.

Claire Davies
And then it’s frustrating as well, isn’t it? Because you can’t check your blood sugar and you know you need to because you want to give your insulin and you feel, I don’t know, I don’t put words in your mouth. Do you feel almost restricted by the fact that we haven’t got a medicine that is more available to you to keep you safer?

Toby Morgan
Well, I was actually at the Diabetes Centre yesterday here in Rotherham and I was being completely honest with the DSN, and I was saying that in many ways, like the NovoMix and having to mess around with the blood sugar meter, it, kind of, when you’re visually impaired, it makes you feel like you’re in prison, basically, you know. You know when you have the shot of insulin, when it comes to your blood sugar time, and that’s the equivalent of your exercise in the yard time and, you know, when you’re not doing that, it’s like, you know, you’re trapped behind a door in that sense.

Claire Davies
I think that’s a really powerful metaphor. And then on top of that, you’re in prison and we’ve added on one of the hardest conditions to manage that you have to do every single day. And when we spoke previously as well, you made a very good point about large print booklets and things and…

Toby Morgan
Yeah, yeah, right, right.

Claire Davies
…I don’t know if you want to talk about that. Yeah.

Toby Morgan
When it comes to writing your blood sugar, blood sugars down to keep a record that’s ok, but it’s like, if your patient is visually impaired or becomes visually impaired, and you want them to record their blood sugars down, why give them the standard logbook which are very small squares? I think people who are not visually impaired struggle to, you know, keep all the digits within those squares in the standard books, but it’s like, you know, I mean, I think there are large print logbooks around. Where, I don’t know, but there doesn’t seem to be like an automatic, ‘oh this patient’s visually impaired, therefore, we’ll give them a large print logbook, we’ll not give them a small one because it’s going to be a challenge’. You know, they should, well, they probably do know that. It’s probably down to money and, you know, and putting money into resources. But the point being is, you know, it shouldn’t be like the patient shouldn’t need to ask. It should be like an automatic thing ‘oh this person’s visually impaired therefore I will give them a large print logbook’. Or use a bit of common sense.

Claire Davies
I think you’re right.

Toby Morgan
I mean that might sound offensive to people, but, you know, if the shoe was on the other foot and you’re being given, you know, a book with very small boxes, you know, how would you write an essay and fill an essay in those small, in such a small book? You’d want something that is suitably, measurably correct for what you want, what you’re wanting to do or what you’re being asked to do.

Claire Davies
Absolutely. I think you hit the nail on the head there that we have to treat everyone we care for whatever condition as individuals, don’t we? And I always say that the best medicine for that person is the one that they’re going to take, they’re going to use that is going to be right for their lifestyle.

Toby Morgan
Yeah.

Claire Davies
And the same goes for diabetes, doesn’t it? The best insulin or medication is the one that works for you and that’s, there’s not a one size fits all, especially not with diabetes, there are so many shades of grey. But you’re right, we should be thinking this person has visual impairment or, as you say, any other potential disability seen or unseen, and how we make sure that whatever we do with insulin when we’re talking about safety, for example, keeps you safe and facilitates you to have that. So, it’s powerful that for you, unfortunately, you’ve had a few limitations based on what we have available to you, but we need that insulin to keep you safe. But how we then keep that insulin safe for you also throws up challenges.

If you could give them one message or one take-home message about how we could have made your journey with diabetes and insulin safer, what would it be?

Toby Morgan
I don’t think it’s necessarily about mine. But…

Claire Davies
I almost said or for other people.

Toby Morgan
…My message would be, is think about if he was like one of your loved ones, not necessarily so, but if it’s one of your loved ones. And what would give you reassurance and confidence that the people looking after your loved one are gonna be keeping your loved ones safe and asking them to do things.

[cut to discussion between Claire Davies and Emma Kirk]

Emma Kirk
That was so informative and what a powerful message to end on making us think of our own loved ones really focuses our mind sometimes. The prison metaphor I know I’ll be thinking about over and over again now too.

Claire Davies
I couldn’t agree more, and we have to take a moment to say thank you to all the people living with diabetes and Diabetes UK who engaged with us for this work for their time, their perspective. There are more insulin resources relating to insulin safety available on the SPS website and via the Safer Use of Insulin MSATS page and NHS Futures. We’d really direct you there to carry on your learning and improve incident safety in your care settings.