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’st teach like carb counting do they? It’s like these have got carbs in these haven’st, 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’st 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’sd already been diagnosed 6 years by then and carb counting by himself for a couple of years it’s like well. He wasn’st 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: 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’st 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’st 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’st 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’st it?

Mother: You want to be a peer mentor don’st 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’st 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’sll be on the one telling that, the people will be on the receiving end sort of. So I’sll be like helping out whereas before I was doing the activities whereas I’sll be helping organise the activities and give advice to other people, that sort of stuff.

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’sve 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’st 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’sre still learning like every day something else.

Father: You’sre always learning.

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’sll 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’st 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’sre 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’sve 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’sll let us talk about what our day has been like and everything.

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’sve decided it’s not user error and there’s something that, it’s something they can’st 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’sre on multiple daily injections you’sre pretty much on your own aren’st you.

Mother: Yeah.

Father: And at weekends when the, your healthcare professionals are at home and whatnot and you can’st get hold of anybody for support if you are having some sort of pump issue the companies do offer for 24/7 support so.

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’st 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’sve 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’st feel as left out cos they’sd 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.

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’st 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’sre young. I mean we still do as adults and you don’st 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’st have to worry

Mother: we don’st keep looking because then uit’s an invasion of his privacy but if you were to ring us to say

Father: I’sve got a problem.

Mother: I’sve 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’sre high, you’sre low. You’sre high, you’sre low.

Lewis: No, but when it gets a bit too high that’s when you start to text me if I don’st do anything.

Father: We will if you’sre 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’st 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.

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’st like to tell you and they tell you so I won’st have to say it face to face.

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

Father: Helps prepare doesn’st it as well for that eventual period of time where mum and dad won’st 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’sll be seeing your regular team one visit then that’s it. It’s almost over and you’sre 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’st go with what their opinions are they listen to you and go, What’s been happening? So that they can’st 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.

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’sre 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’sre doing any other sort of exercise

Mother: Yes Lewis PE at school [laugh].

Ooops.

Lewis: I keep the pump in there, I don’st 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’sve 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’st 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’st. Go for the sweeter option.

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

Lewis: I still have to finger test sometimes cos this isn’st. 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’sre having a new sensor it’s actually quite accurate isn’st it so you don’st have to test that much.

Father: I’sd say you’sve got I mean at the peak of testing it would have done anywhere between 5, 15, 20 times a day. Because obviously you’sre 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’sre 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.

Mother: It was different back then though because pumps still weren’st as part they weren’st as common as they are now.

Father: And even now they are not common really.

Mother: Yeah and we hadn’st even thought. It hadn’st crossed our mind had it and it was only because the team said, Look we don’st 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’st give it much thought. We weren’st against pumps but we weren’st, we want a pump.

Father: Didn’st really know that much about the did we?

Mother: No

Lewis: I didn’st 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’st 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’st 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’st it?