Lewis

Age at interview: 12

Age at diagnosis: 4

Brief Outline: Lewis was diagnosed age four and initially used insulin pens but they were not helping to achieve good control. He started using an insulin pump when he was six years old. He now has good control and feels that since his diagnosis, he has got all the support and help he needs from his Mum and Dad ‘we learn from each other’s mistakes and we sort of help each other. He describes it as ‘team work’. The family feels that learning about diabetes management is an ongoing process. Lewis, his family and the diabetes specialists have worked together to help Lewis control his diabetes and provide a safe space where he can talk about feelings and emotions. Lewis wants to become a mentor and help others.

Background: Lewis is 12 years old and lives with Mum, Dad, sister and younger brother. He recently started high school. Ethnic background: English.

More about me...

Lewis was diagnosed when he was four years old and he started using insulin pens and carb counting. His Mum and Dad taught him how to carb counting and showed him how to do the injections, but despite his parent’s best efforts and the school’s help it was difficult to stabilise his blood sugar levels. He struggled a bit with the short-acting insulin because it hurt. He also remembers that he felt uncomfortable injecting in front of other children. About eighteen months after diagnosis his care team decided to apply for funding for an insulin pump. He started to wear a continuous glucose monitor (CGM) and the data results supported the case for funding an insulin pump by showing that the insulin pen regimen he was on was not able to stabilise his blood sugar levels. So, two years after diagnosis Lewis went on insulin pump treatment. 

Lewis and his parents were given training on how to use the insulin pump and although he found it a bit daunting at first he feels that it is a lot easier than having to do multiple injections a day. Lewis and his parents feel that overall, the insulin pump has simplified the management of his condition and provided better control, but added that there are still times when he goes high or low for no apparent reason and they have to figure out what’s going on. For Lewis and his parents, the key is to test the blood sugars regularly to avoid problems. Lewis has never had any serious issues with his pump and knows what do if problems arise, such as needing to change a blocked cannula. Lewis’ parents also feel well supported by the company that supplies the pump and know that if there are any problems they will replace the pump within 6 hours.

Lewis uses a CGM provided by his diabetes care team. His parents found out about a low cost DIY receiver. This device uploads the CGM results to mobile phones so Lewis can have a quick glance at his sugar levels and correct them accordingly. His parents are also able to access his CGM data on their own mobiles so, if needed, they are able to provide advice. They use the DIY receiver in combination with the official receiver. Over the years his parents have accumulated a lot of information and knowledge and they feel confident about using the DIY device and feel that the DIY version is more reliable and accurate than the official one. 

Lewis parents explained that before he started using an insulin pump his school life was greatly affected by his condition as he used to be ‘high or ‘low’ a lot. He was often absent from lessons and missed sharing things with other children. Lewis’s parents said that some of the teachers were ‘fantastic’ and wanted to help but others were worried. Once Lewis started using an insulin pump teachers found their task easier.

Lewis feels that since his diagnosis, he has had all the support and help he needs from his Mum and Dad ‘we learn from each other’s mistakes and we sort of help each other. He describes it as ‘team work’. The family feels that learning about diabetes management is an ongoing process. Lewis is sensitive to the need of his siblings and knows that sometimes his sister feels ‘a bit left out’ and his little brother worries about him. The family were given the opportunity to discuss these kinds of issues when they attended family sessions organised by the diabetes clinic.

Lewis attends an adolescent clinic and says that the consultant gives him the opportunity to attend part of the consultation without his parents and to talk about issues that he wouldn’t openly talk to Mum and Dad about. His parents support this idea and feel that the diabetes team is getting him ready for when he grows up and attends consultations on his own. Lewis, his family and the diabetes specialists have worked together to help Lewis control his diabetes and provide a safe space where he can talk about feelings and emotions. Lewis wants to become a mentor and help others.

Lewis says he does a couple of finger prick tests a day but more often when using new CGM sensors. Before the CGM he was doing up to 20 tests a day.

Ok and how do you feel about that, finger testing?

Lewis: I still have to finger test sometimes cos this isn’t. Sometimes it can be a bit out like after a new sensor. It can be a bit out because it’s obviously a new sensor and it needs to like warm up and get used to the…

Father: Settle in.

Lewis: Settle in. That’s when I start to test. Apart from that when you’re having a new sensor it’s actually quite accurate isn’t it so you don’t have to test that much.

Father: I’d say you’ve got I mean at the peak of testing it would have done anywhere between 5, 15, 20 times a day. Because obviously you’re used to have a lot of variable glucose levels but now with that looking to the history of his meter it’s probably testing two maybe three times a day if that because we’re comfortable and he’s comfortable that it’s that reliable and accurate to use.

Mother: You are advised to test them if it alerts you as hypo or high so you can base your decisions on those readings. It is advisable. So I suppose we should say that’s the proper way of doing it.

Lewis’s Care Team secured funding for his insulin pump after the continuous glucose monitor showed that his insulin therapy was not working well for him.

Mother: It was different back then though because pumps still weren’t as part… they weren’t as common as they are now.

Father: And even now they are not common really.

Mother: Yeah and we hadn’t even thought. It hadn’t crossed our mind had it and it was only because the team said, “Look we don’t think we are going to get his levels under control with injections.” And we just went with the advice of the healthcare professionals at that. They felt that would be best for Lewis so we agreed with it. We really didn’t give it much thought. We weren’t against pumps but we weren’t, we want a pump.

Father: Didn’t really know that much about the did we?

Mother: No

Lewis: I didn’t even know they existed.

Father: No. 

Lewis: I was only four-six -ish.

Mother: So then they put that blind CGM on Lewis to get some data and it showed that there was no chance of getting any control. His, his bloods just swung from…

Father: Two to 20

Mother: Yeah and there was no pattern, no pattern at all but it meant that his average was always ok because it met in the middle. His A1c so if they were just looking without the CGM if they were just looking at his data for like HbA1c

Father: That would say he was managing well.

Mother: They would have said it was ok.

Ok. 

Mother: So the CGM really helped because they could prove that actually his levels were swinging and there is no pattern. So we couldn’t inject differently.

So we are, after around two years it was decided it was better for him to go on the pump?

Mother: Yeah I think it was about 18 months give or take. Yeh.

Father: I think it was the February it was decided he might they were looking to, wouldn’t they to put him on a line continuous glucose monitor. And it was another 3 or 4 months while funding was arranged. And then it was at the two year mark he went on it then wasn’t it? 

Lewis’ parents talk about the receiver created by and for Type1 diabetes people. They feel that this remote monitoring device is helping them as a family.

Mother: Basically some parents and people with Type 1 are really good with like computer programming. And you are able to connect your sensor instead of using the normal official receiver you can just carry a little box. 

Ok.

Mother: And it will just upload your results to the phone instead

Father: Which can then compare to the watch which

Mother: Yeah which he’s got on his watch but when he’s at school we can see it on our phone. So if he has a problem at school he could ring us if he needed to and then we could see what the pattern is. But it is not an official thing at the moment.

Father: Also it means like because the sensor that he uses is pretty accurate if he didn’t have it, he felt high or low he’s have to be testing his blood sugars a lot more regularly. But obviously with the continuous glucose monitor with it on his watch he can just have a quick glance, see if he’s ok and away he goes. Or if he bleeps high or low he can then take action a bit more discretely because obviously with the fitting in concerns

Mother: Yes on his arm he just does that [action on video]

Father: He can then obviously you know pop a couple of glucose tablets or a few button presses for the, for the correction without messing about and everyone going, “Oh what are you doing?” Because obviously we all want to fit in when we’re young. I mean we still do as adults and you don’t want to be different even though we all are different.

We used it [remote monitoring box] in combination with the official receivers and in actual fairness the unofficial homemade DIY version was better than the official version and far more reliable and accurate. So we, we stick with that and it works. And

Mother: And it really helps as a family when he’s not with us

Father: Yeah

Mother: Because we can see…

Lewis: Don’t have to worry

Mother: …we don’t keep looking because then uit’s an invasion of his privacy but if you were to ring us to say…

Father: I’ve got a problem.

Mother: I’ve got a problem.” Then we can look at it, you know.

Father: And go “Right looks like so and so is going on. What we need to do is this.” And you do it. Because we never really text you or bother you do we saying, “You’re high, you’re low. You’re high, you’re low.”

Lewis: No, but when it gets a bit too high that’s when you start to text me if I don’t do anything.

Father: We will if you’re really, really high.

Lewis: But not that much, yeah.

Mother: Night time is really good as well because before we used to have to set our alarm and come down and just check in the night. Now we don’t have to because that facility will alarm if there is a problem. So we only get woken up if there is a problem as opposed to being woken up all the time. So it’s really helped in that respect.

Father: His healthcare team know. I mean the first time Lewis went with this particular version his consultant called in a few others saying, “Come and look at this. Come and look”. He was like, “This is amazing. This is brilliant. This is.” And I was like, you know, this is what parents have done. It also pushes the big pharmaceutical companies to push their own.

Mother: Yeah. They could do this.

Father: Their own designs.

Mother: If they chose to though you know.

Lewis and his parents explain how the adolescent clinic is preparing him for when he is older and start attending consultation on his own.

Mother: They do everything so. He goes, he’s in the adolescent. They split it up to paediatrics and adolescent. So he is in the adolescent clinic. And so they try and encourage for say Lewis to go in by himself with the consultant first and then as he gets older that will, that time alone will become more and more. We go in as well but we give him the opportunity first.

Lewis: What they do as well is they also give me the opportunity to tell many things that I wouldn’t like to tell you and they tell you so I won’t have to say it face to face.

Mother: Exactly yeah you’ve got to get used to going to these yeah

Father: Helps prepare doesn’t it as well for that eventual period of time where mum and dad won’t be coming at all and, you know That day will come so obviously they spend a good few years at the clinic he goes preparing children and young people for that event. Which I think is good because I mean there’s a lot of clinics around the country where you’ll be seeing your regular team one visit then that’s it. It’s almost over and you’re off into the scary world of adult clinics.

Yeah.

Father: I think it’s a fantastic idea to make transitional arrangements.

And do you feel that they are interested in you not just in your diabetes and how you are managing.

Lewis: Yeah they are, they sort of bond with you a bit at the sort of like have a joke around and get to know you a bit before they start talking about diabetes and even when they do talk about diabetes they actually listen to you. They don’t go with what their opinions are they listen to you and go, “What’s been happening?” So that they can’t just judge off the graphs. They see what you are feeling as well which your opinion would help which I think is a good thing.

Lewis and his parents explain that the pump can be programmed to deal with specific needs like setting it on a temporary reduction mode when exercising.

And who does the setting of the pump?

Lewis: We do by you can customise it to how, like what you need off for it. And then once you set it, it’s set so you can have different basal ratios. You can have more insulin at a certain time of day so that if you figure out that your bloods go higher at a certain time of the day you can add a bit more insulin to that ratio that sort of day and then it will bring it down. Then if you’re going too low you can higher, lower the insulin so that it tries to keep it stable for a day.

Ok and what about when you have to, when you do PE at school or if you’re doing any other sort of exercise

Mother: Yes Lewis PE at school [laugh].

Ooops.

Lewis: I keep the pump in there, I don’t take it off. This sort of pump is waterproof so I can go swimming in it as well.

Father: What should you be doing with your insulin?

Mother: Realistically you’ve gone round the topic.

Father: Changed the subject.

Lewis: [laugh] I should be putting myself on a temporary reduction which slows the insulin so that I don’t go low for a BA. But what I can also do is have something at, like we have these love hearts. I have a few of those before lessons so that the insulin combats sort of half and halves. It’s a half goes towards the love hearts so it should keep me stable but I really should put myself on a temporary reduction but I don’t. Go for the sweeter option.

Lewis’s parents say that insulin pump manufacturers provide a good and reliable service.

Mother: To be fair the current companies are pretty good. They will let…

Father: The customer service is amazing.

Mother: They will replace your pump within 6 hours if there is an issue.

Ok

Lewis: It takes a lot of talking down the phone though.

Mother: Yeah you have to go through a lot of like checking that it’s not just user error. But when, when yeah…

Father: The troubleshoot in support is fantastic.

Mother: Yeah is really good and then when they’ve decided it’s not user error and there’s something that, it’s something they can’t potentially solve over the phone they will send you a replacement pump by courier within 6 hours.

Father: It’s actually

Ok that’s good.

Father: It’s another good thing will be the pump companies that you do get that extra level of support because obviously if you’re on multiple daily injections you’re pretty much on your own aren’t you.

Mother: Yeah.

Father: And at weekends when the, your healthcare professionals are at home and whatnot and you can’t get hold of anybody for support if you are having some sort of pump issue the companies do offer for 24/7 support so. 

Lewis’ father talks about an online forum for younger teenagers and Lewis feels that an online space for siblings of those with diabetes is also a good idea.

Father: An online forum for people your age so you can chat together, talk together but obviously then with that adult supervision and keeping out anything that shouldn’t really be there which I think is a good idea. Because you do need filters in life really. So and obviously you know it’s difficult for us as adults to filter out all the rubbish that we see never mind say young impressionable children and young people.

Lewis: I think brothers and sisters as well they I think it would be good for them to talk to other people who’ve got older brothers or sisters with diabetes to talk so they know how to manage it. Like I know my sister especially she sometimes feels a bit left out because I might get most of the attention because of my diabetes. Whereas if she had somebody or my brother, somebody to talk to other children they can connect that was so they wouldn’t feel as left out cos they’d have other boys and girls whose brothers or sisters have got diabetes then without being left out they can talk to other people as well. So it’s not like just me talking to other people with diabetes they can talk to other people with brothers or sisters with diabetes which I think would be good.

Lewis’ parents feel that the locally organised training session was appropriate for newly diagnosed children but not for Lewis who is already self-managing his diabetes.

Is there anything available for the under 18s when it comes to?

Mother: Not officially. I think there was a trial going on somewhere in the country for making like the likes of DAFNE for under 18s but it’s not a national thing and it’s not. No. It’s just your individual teams that give the parents the support and some teams offer a bit more nutrition more awareness. It’s a. They don’t teach like carb counting do they? It’s like these have got carbs in these haven’t, sort of an education sort of basic on nut-, you know, there the eat well plate sort of.

Father: He did go to one session at one of his old hospitals but it was a bit too basic for his age. So they are trying to have the sort of a carb counting session for a wide range of children and it, it was. The age range was too spread.

Mother: No it wasn’t the age range. It maybe needed to be grouped into length of diagnosis.

Father: [mmm] Possibly.

Mother: Perhaps.

Father: I think there were some children there that had only recently been diagnosed as well. So for them it would have been fantastic because it was a good introduction but for Lewis who’d already been diagnosed 6 years by then and carb counting by himself for a couple of years it’s like well. He wasn’t really learning anything new there. In fact he was hel-, I suppose on the other hand he was providing peer support to the other children cos he was helping them, showing them, you know, this is, this is the way. This is how you do this.

Lewis talks about a peer led session organised by the psychology team at his diabetes clinic. Lewis wants to be a peer mentor.

Lewis: Well there was a thing I went to in [city] as well am I allowed to mention it do you reckon?

 

Yes you can mention that.

 

Lewis: Tree of Life which that was a lot of help as well cos that

 

Mother: That’s your psychological support isn’t it?

 

Lewis: Yeah and had to get over the bumps that you and hurdles that you need to over to succeed.

 

Mother: It’s that everyone goes through what you go through. It’s a shared, you know. Everyone does the same thing. You have to grow up with it.

 

Tell me a little bit more about that.

 

Lewis: The Tree of Life.

 

Yeah was it a course, it was a weekend event?

 

Lewis: It’s basically [clicks] only a few get picked isn’t it, like a few that have been chosen. Basic-, what it is, is it’s this big. It’s like a group that sit round in a circle and share what their experience has been, diabetes has been. And we do this thing called The tree of Fruits which is basically a big tree and we take it in turns to write different fruits about people like the good things, good personality things that they have in common which help, helps them to be a lot more confident. And also what you think life is like with diabetes and the Tree like the family tree and what, whose helped most and that sort of stuff and who you can turn to.

 

Ok

 

Lewis: It was really good.

 

And who organised this?

 

Mother: It was the psychology team and then they had two peer mentors they called them which were the older teams that were just about to transition into like, like older clinics. So they were there to support the younger ones.

 

Ok

 

Mother: It was good wasn’t it for you? I may have your tree somewhere in the back.

 

It was an event, a one-off event?

 

Lewis: It happens about once a year, every year doesn’t it?

 

Mother: You want to be a peer mentor don’t you so.

 

Lewis: Yeah

 

Mother: He’s going to be a peer mentor. It just takes them, next year it will be the training won’t it?

 

So you will go for training for that one?

 

Lewis: Yeah.

 

Ok and what will that mean? Will you be talking to young people your age or younger?

 

Lewis: It will be exactly the same except I’ll be on the one telling that, the people will be on the receiving end sort of. So I’ll be like helping out whereas before I was doing the activities whereas I’ll be helping organise the activities and give advice to other people, that sort of stuff.

Lewis describes his diagnosis as a ‘shock’ for everyone and feels that managing diabetes is an ongoing ‘team’ effort.

Lewis: I think for all of us it was definitely a shock at first and thinking of the idea of living it my whole life and having to do my injections, my pump is probably really daunting. So it, the fact it takes you a while to get over the fact that right, I’ve got it I have to deal with it. There is nothing I can do. I mean I was only small then so I was thinking, the doctors will fix it, the doctors will fix it. And soon it started to occur to me that they weren’t going to fix it. So I’m just going to have to step up and sort it because nobody else is going to do it. So that’s when I start m-. My mum and dad started to teach me how to carb count and how to inject. I mean I was still unsure what to do but they were trying their best to help me as well. So we sort of like we learn from each others mistakes and we sort of help each other. So like if my mum or dad forgets then I can remind them. And if I forget something they can remind me. So it’s sort of like a team work, team work to keep yourself like team work to learn everything but sort of half, half team work, half con-, like yourselves.

Mother: We’re still learning like every day something else.

Father: You’re always learning.

Lewis’ younger sister felt ‘jealous’ when he went to meet the Queen and finds it tiring when the family conversation is all about diabetes.

How does it make you feel? What do you find difficult or sometimes annoying. I mean any kind of feelings that you, you might have.

Lewis’s sister: Sometimes like when Lewis is really ... high he’ll go all silly and it makes me laugh and everything. But then it I try my hardest cos I know that it, it’s not his fault. Like cos he’s the one who has to deal with it and that but like he has to, when he be silly like we have to try not to laugh because we know that it’s not his fault and he can’t control that. And like he makes. Sometimes it makes me feel like [whispers] well when like bef-, Lewis gets opportunities to meet the Queen and that. I feel a bit jealous of him but like at the same time I’m proud because he’s got that opportunity to meet the Queen and things like this, things like this makes me jealous but I’m also happy for him because he gets these all sorts of nice opportunities for himself and that.

Well I normally think that a lot because they’re always talking about diabetes and canulas and insulin and everything. And I just like want to talk about the day and then let them talk about diabetes afterwards. It’s like cos it makes me feel a bit left out but like not left out at the same time because they talk about the day after they’ve talked about all this diabetic stuff for like it makes me feel better instead of them just carrying on with this set conversation and everything. And they’ll let us talk about what our day has been like and everything.