Robert

Age at interview: 21

Age at diagnosis: 20

Brief Outline:

Robert was diagnosed in 2015 aged 20 but it didn’t come as a shock because his brother and a cousin also have type 1 diabetes. He participated in a Patient Education Programme similar to DAFNE. This course provided important information and advice on how to balance exercises with insulin and carbohydrates for effective management. Robert was also thrilled to learn more about the different types of technologies available to help manage the condition like glucose scans and those that are being planned for the future. Participants to the course set up a Facebook group and continue sharing tips and experiences about their condition. Robert is on Lantus and Novorapid.

Background:

Robert lives at home with his parents and sibling. He is currently doing an apprenticeship and plans to go to university to study mechanical engineering at degree level.

More about me...

Robert’s older brother and his cousin have type 1 diabetes so, when he developed an unquenched thirst his parents checked his blood sugar levels and finding it to be high,  and took him to hospital for further tests. Robert was twenty when he was diagnosed with type 1 diabetes. Following his diagnosis, he had to rethink one of his life projects as he couldn’t join the Territorial Army Reserves on a part-time basis. His career plans, however, have not changed and he is currently doing an apprenticeship and he wants to go to university to study mechanical engineering at degree level.

Robert describes as ‘exceptional’ the nurses and dieticians he saw in hospital at the time of his diagnosis because they took the time to explain type1 diabetes, its treatment and management with care and reassurance. Robert also feels that his diabetes health team has taken excellent care of him. He explains that these days he mostly sees his diabetes nurse and dietician and occasionally he catches up with the consultant as there are no medical concerns or problems with his management of the condition. After diagnosis, it took a few months to find the right dose of insulin, but injecting has never bothered him. He is on Lantus and Novorapid. 

Robert tests his blood sugar levels frequently. He drives one hour each way to work and knows that the Driver and Vehicle Licensing Agency (DVLA) recommended blood sugar level must be 5 before driving. So his daily routine includes checking his blood sugars before and after breakfast; before leaving home for work and before driving back home from work. He knows the importance of avoiding having a hypo while driving. But he finds finger pricking bothersome and hopes the DVLA recognises soon the glucose monitoring meters already available. He added: ‘just being able to swipe and get your blood sugar as opposed to pricking your finger every time would be huge for me’. 

One year after diagnosis, Robert was invited by his diabetes team to take part in a patient education programme - similar to DAFNE. He found it useful for several reasons. The programme went into more detail about carbohydrate counting; it provided advice about exercise, on how to correct the insulin doses depending on the types of exercise routine, and what people need to eat more of, when exercising. The course provided him a clear understanding about balancing exercises with insulin and carbohydrates. The course also offered the chance to meet and shared experiences with other people diagnosed with type 1 diabetes. After the course finished, the participants created a closed Facebook group and kept in touch and continue posting and sharing tips and experiences. The course also provides valuable advice and information on carbohydrate counting apps for mobile phones. He describes it as ‘brilliant’. He bought one and says that it’s the ‘best £2.50 I ever spent’. Robert was also thrilled to learn more about the different types of technologies available to help manage the condition like glucose scans and those that are being planned for the future. He feels that rapid progress is taking place that will help improve the management of type1 diabetes. 

Robert talks about his experience of living with type 1 diabetes quite openly, but feels that there is still much misconception about type 1 which generally is confused with type 2 diabetes. Robert’s friends and work colleagues have been really supportive and Robert has made the point of explaining a few of them what to do if he is having a hypo or a medical emergency.

When it comes to drinking alcohol, Robert follows the advice given by his dietician, which is basically to snacks at the end of the night to make sure his sugar levels don’t go low in the middle of the night. He tends to stick to beer and doesn’t have drinks with high sugar contents.

Robert arrived at A&E and had to wait two days for confirmation of his diagnosis. He was very impressed with the care he received while in hospital.

We went to A&E and I got. Well it was a bit of a wait. I think it was about, after my initial blood sugar test probably about 2 hours until I saw a doctor again. They did a ketones test, a blood sugar test and my blood sugar was still like 25. And then they admitted me to the ward for the weekend. Well at that point I was told it was just to go see a nurse to get my insulin but it turned out that it was the full weekend I was in the ward which was delightful. 

So I spent Friday night giving blood samples left, right and centre. And then for the rest of the two, all day, well all night Friday night, all day Saturday and all day Sunday until I saw the dietician on Monday. It was blood sugar tests every hour all the way through the night. Blood pressure tests about every two hours and every single time they tested my blood sugar they’d check the drip I was on because I was on intravenous insulin and fluids to bring my blood sugar down. So they were checking that they were on the right ratio of fluids, salts and sugars being put into my system. So it was a lot to take in all of a sudden when you’re, you didn’t feel too bad just dehydrated and tired. And all of a sudden you’re in hospital on a massive drip. The nurses are looking at you in a funny way going, “Are you alright?” And I’m like, “Yeah I’ve just got used to it.” But yeah it was, it was a long, long two days.

And then they went through what were the implications and I never really had like a sudden dawning moment of what it was because it was. I suppose because of my age as a 20-year-old it’s a bit easier to take than someone who is 8, 9, 10 something like that. [background chatter] So I didn’t really have that dawning moment which was very lucky. It sort of just. You got used to it in a way of, difficult sort of to describe is you, you’re there. You see day to day living, you sort of get used to little bits of it at a time. It’s a bit overwhelming when they give you all your insulin, your blood tester, your, tell you you’ve got to come in every six months for check-ups. You’ve got to come in to get your repeat prescriptions and tell you everything you’ve got to do. It’s a bit of a massive overload of realising how much you’ve got to keep on top of but I never felt out of control. I was like alright we can do this and tried to be quite level-headed.

So you went to, so because you were in hospital they were able to provide you with all the information and your kits and everything?

So, yes, so I would take my hat off to the [Hospital] because the nurses through the shift they were amazing. Don’t know how they keep going through the middle of the night. But then the dieticians themselves they were ex-, exceptional. Took, took a lot of time to explain what diabetes was, the issues that they are trying to resolve by giving me insulin and how insulin works. They gave me an option. They said, “Look if you don’t want to go straight on to the full dose of insulin we can put you on like an interim stage to build you up slowly. And then, yeah they were, they were very good. And they gave me my blood tester there and then, explained how to use it and yeah it was. It were very good. How they did it. I were very impressed.

Robert feels that the emphasis should be on the development of aids and devices to help people manage their Type1 diabetes and not just on finding a cure.

But I am very much along the lines of I think devices are the way forward in easier management. Like if you could get this device where you stamp it on your arm and scan and is funded by the NHS how wonderful would that be, not having to prick your fingers in every day, just have this on. This lasts for three days, wipe it, get your blood sugar. Then if the DVLA recognise that then that means you wouldn’t need a blood tester. 

And I think the future of diabetes is all about small and discrete devices and maybe even like developing a closed loop system where you’ve got blood sugar management and your insulin dosing all in one. Because I think that would be fantastic and that would be absolutely brilliant. So I am very much device focused. I think the future is in devices. But obviously I get frustrated when everything seems to be all about developing a cure and finding the best way to implant new cells into the body.

Robert describes the course as ‘brilliant’. He now understands why and how to deal with diabetes problems and knows more about the range of apps and devices available.

It was a year after my diagnosis so about March this year I did Diabetes Training Course which I think is nationally DAFNE but my local one was called something different. It was called, [Name] I think it was but it’s the, it’s based on the same course. And that was really good because they took more time just going into more detail about your carb count and about what they recommend if you’re doing general exercise or if on one day you’re doing a really heavy amount of exercise how to correct your insulin doses or what you need to eat more of. For example just generally balancing exercise with insulin and carbs. It was really good in what they did on the training course. But then equally you’re in a room with about 5 or 6 other diabetics and just being able to sort of compare what each other’s do and so see what works for them, what might work for me or what works well for me I could pass knowledge on to someone else.

Ok did you feel more confident after that? 

Yeah It gave me a lot more knowledge. So for example I find the time that if I go low it will be mid-morning but I wouldn’t have known that. Before I did the training course I wouldn’t have known that your body reacts differently to insulin at different times of the day. So I know about, some people can be more sensitive in the morning and less sensitive in the evening which I believe is sort of how I am, less sensitive to insulin in the morning. And that is saying because the majority of my hypos if I ever have any will be mid-morning. So it, it was good to learn about, about that and therefore how you compensate it by using less insulin in the morning and more in the evening or afternoons for example. 

Any other information that has helped you manage?

So, the one that the, they gave the information about. I already had this knowledge but they gave information. It was carbs counting apps for your phone or books. Well books are a bit hard to carry around in day-to-day but an app for your phone is brilliant. I downloaded one. It was, I always refer to it as the best £2.50 I ever spent. Because I have [phhh] almost lived by the app and whatever I eat I’ll go straight on there. Look for it and, and find what I’ve eaten straight away. And it’s got to the point where you’re sort of. You’re so used to looking for things you sort of know roughly what each meal is going to be and you don’t need to use it as much anymore. You only use it for obscure things but yeah I live by this carb counting app. It’s absolutely brilliant just being able to have it on your phone and just swipe down, that’s what I want and compare portion size of what you’re eating. It’s absolutely brilliant.

Is there anything that you think is missing from the course something that you would think that would help?

[Sigh] So It was a 3-day course and I think they were very comprehensive on it. As I said, it wasn’t the DAFNE. It was a sister version of the DAFNE. But yeah I’d say it was brilliant. I wouldn’t say there’s much more they could fit in if anything. So it was good.

Did you have any expectations about the course before you went?

I wasn’t 100% sure what to expect. So I went with a pretty open mind and but then I thought it was a really good course afterwards. So it was well worth going on.

Would you recommend the course to others?

Oh definitely, definitely well worth going on. Just, even if you only pick up one or two things or a lot of people there had tried out a new blood glucose meter and took that home with them. And I know one guy got a much better meter than he did have and he absolutely loves it now. He was well happy with it. So yeah I’d say it’s definitely worth it.

Robert feels that the course provided him with information about new technologies and treatments and it gave him the chance to share his experience with others.

So the course was three days long. It wasn’t just about carbohydrate counting. It was about as I was saying earlier about all the different technologies that are available to help manage diabetes, about linking in with other people with diabetes and about all the different types of insulin. But obviously one of the major parts was carb counting. And they gave you different ways of counting portions. So if you are cooking a meal you can weigh it, X amount of rice that you are eating or you can weigh X amount of a curry sauce that you’ve eaten and then calculate the carbs that are in it based on either your carbs and cal book or app or the label on the back of products which are generally speaking really good. So they give you very clear, this many carbohydrates in the, per portion size or per 100 gms. That sort of take you through how you work that but, but for me the most powerful tool was an application on your phone, you type in what food you are having: lasagne for example. You see a picture and you compare the picture portion size on your phone to your plate and you think, that one. And then it tells exactly what carbohydrates are in it. And I found that just an absolute miracle tool. That was brilliant.

There was, there was other good stuff on the course as well that I liked quite a bit actually. And it was looking at alternative insulin treatments, what different insulins have different effects and different types of pump therapy, the type of devices where you can put a, put it onto your arm and scan it and all the different technologies that are out there as well what’s coming up. So it was really good to see what is currently available and what we think will be available in the future because that sort of shows that the leaps and bounds that they are making but equally there was a lady on our course who was, who had been diabetic for 56 years. So it was good to have her in the room because she sort of said, “This is how I used to do it when I was a kid.” And it showed the massive leaps and bounds that diabetes technology has made in that time. And it is good to see that from there where we are looking to go forward. So that was really good. I thought that was fantastic.

Robert is a member of a closed Facebook group and post sometimes but he is more active in a committee that reviews type1 diabetes projects.

Do you have a Facebook group?

Yeah so we’ve got a Facebook group where we all link in. It’s been a bit dormant for a while but we probably should get it up, and get it up and running again but if we ever have any issues then we’ll put post on there and we chat about stuff or even if we just see a funny diabetes-related picture we’ll just post it and have a laugh together. But like for example I used it because I just had a hypo in the middle of the night. I woke up and corrected it and got something to eat. So good sign that I’ve got hypo awareness. But yeah sort of felt like death the next day. I just felt horrible.

So I posted on Facebook in this group of us and said, “Look is this normal? Do you guys feel really crap the next day as well?” And they sort of said, “Yeah if you have a hypo, in the middle of the night it takes a full day to get over it at least.” So it’s good to have that and sort of talk to them.

Ok and are you in touch with other support groups or organisations?

So I, [sigh] I’m in touch with Diabetes UK quite a lot because I am, I volunteer for them so I actively seek to join them and it’s on a, an Advisory Panel where they ask people with diabetes Type 1 and Type 2 to give feedback on sort of projects that have been put forward to them requesting funding. So we all get together I think it’s about 3, 4 times a year. We review all the projects. We rank them as like whether we think it’s something that Diabetes UK should fund whether it’s a lower or high priority. And obviously that keeps me really in tune with Diabetes UK quite a lot because they keep sending material to me and I read them and review it. We send it back and we meet up in London and have a big meeting and go through all the projects. So I link in with them quite a lot.

Have you posted in other groups?

Just, just the one closed group. I haven’t really posted in other groups. Just sort of yeah mainly between us if there is any like diabetes related issues we’ll sort of post, I sort of post. And it’s something now, we discuss it there. So we haven’t really been on it much recently. Occasionally it’s not even just for a, issues it’s just to report if we see something funny that’s a misconception of diabetes we’ll post it and have a laugh about it. But it’s just sort of good to stay in touch and know the people there if you ever want to get in touch.

Robert finds it tiresome dealing with people’s misconceptions and lack of information about the differences between type 1 and 2 diabetes.

So one of the things that I think I do find tedious is a lot of the questions people ask and the misconceptions people have about diabetes. That’s, yeah that’s something tedious when, when someone will say. They, they are trying to be nice but they might say, “Oh if you go low do I need to inject you?” And you’re like, “No, just don’t.” And they are just trying to help and there’s these misconceptions everywhere. And so they’ll go, “Do you inject sugar?” [OOOH] Does that mean you can’t eat sweets or does that mean you ate too many sweets when you were a kid?” And then the misconceptions having to explain to everyone you meet the difference between Type 1 and Type 2 diabetes. And explain that actually Type 1 is the hand you’re dealt. You’ve got it now and Type 2 is something that in, not in all cases but in many cases it’s linked with lifestyle. So you, you’ve obviously got that balancing out to the people. As soon as they hear the word, type, diabetes. They assume Type2 and they’ve got all the stigma associated with Type 2. And then you have to explain to them that you’re not Type 2, you’re Type 1 and this is Type 1 and. Yeah, yeah it’s two completely different conditions and I don’t like having to deal with the people assuming that you are Type 2.

Robert found it difficult to accept that because of his diabetes diagnosis he would not be able to join the Territorial Army as he had planned.

What did you find the easiest or the most difficult to get used to at that stage?

So that, one of the, suppose the most difficult it was very annoying for me more than most difficult but I just applied to join the Territorial Army Reserves as a Royal Electrical Mechanical Engineer as an officer. And application was going well and you find out you’re Type 1 diabetic and I had a meeting with an officer on Monday. So I called him up and says, “I won’t be able to make it I’m in hospital. I just found out I’m diabetic.” And he goes, “Ok right we’ll reschedule.” And when we rescheduled he’d found out that I couldn’t join because I was Type 1.

Really?

Yeah and that was a bit of a blow for me because it was something I’d psyched myself up to and were looking forward to. And then get told you couldn’t was a bit of a blow more than anything.

Ok. So it was quite soon after the diagnosis you found out that something that you wanted, 

Yeah

You wanted to do you couldn’t because of diabetes?

Yeah that, that was frustrating to say the least yeah. It was annoying for, to have got so far and so close to getting into something. Then have a massive set back and told, “No you can’t do it. “ And for a condition you feel as though you can manage it very well. But again with time you sort of start get more level-headed and you go, well realistically if you’re in a war zone scenario or in a scenario where you don’t have medical supplies like you do in the UK you sort of understand, hang on a minute some guy who needs insulin is just another thing to have to organise and in a way you could be seen as a liability. And I sort of understood when you think about you understand why. But yeah it was a bit of a blow and a set back at first.