Naomi

Naomi’s daughter was initially diagnosed with asthma when she was 2. She was subsequently diagnosed with Type 1 diabetes when she was 3 and later diagnosed with Coeliac Disease. Her daughter has suffered one episode of flu like illness for which she was hospitalised.

When Naomi’s daughter was 3, she had started to wet the bed and had gone off her food. First, Naomi thought this was probably normal for a toddler and didn’t think anything of it. When away on holiday, her daughter became tired and started to drink a lot. At first they suspected a kidney infection and made an appointment with the GP who then diagnosed her with Type 1 diabetes. It came as a big shock to Naomi as there was no family history of diabetes. Her daughter had also been diagnosed with asthma at the age of 2 and was later diagnosed with Coeliac Disease at age 5. Before the Coeliac’s diagnosis, Naomi’s daughter had been hospitalised frequently due to its interaction with her diabetes which they had not realized at the time. Since, she has been put on a gluten free diet which has helped but due to the nutritional composition of gluten free products, the diet still heavily interacts with her diabetes.

Naomi explained that her daughter’s diabetes is difficult to manage and keep stable as it is hard to predict. Initially, she had not realised the long-term implications and not been given much information about the impact of diabetes. She feels confident now about managing her daughter’s diabetes with her other conditions and explains that she often knows more than some health professionals. Naomi describes how her daughter’s diabetes impacts on many factors, such as her immunity, diet and lifestyle.

Naomi’s daughter has had a severe episode of flu-like illness at the age of 6. During a Christmas break, she wasn’t eating and was sleeping all the time. As this was affecting her blood sugar and insulin levels, Naomi rushed her to A&E. However, all the test results came back clear. By Boxing Day, her daughter’s condition had deteriorated and she started to experience symptoms of diabetic ketoacidosis (pear drop smell, high temperature and vomiting) and was admitted to hospital. Naomi was told her symptoms were caused by the flu and she received good support from the nurses but she said that she had hoped for more information. Naomi had not previously been told that the flu could be more serious for her daughter and felt completely in the dark. She was shocked by the severity of her daughter’s symptoms and that this could have all been down to the flu. Also her daughter’s asthma is aggravated by colds and viruses. Naomi now tends to bypass her GP and go straight to the diabetic consultant and nurses as she felt that there was very little the GP could do.

Naomi explains how managing a child with three chronic conditions is a balancing act. She has invaluable support from her mum as well as family and friends. She has also found help from support groups. Naomi is concerned about her daughter’s move to secondary school as she worries that the school may not notice her early symptoms and support is limited. She feels it is important to be firm with health professionals and not take no for an answer as you know your child best.

During one flu-like illness episode, over Christmas, Naomi went twice to A&E with her daughter. She was not getting better so she telephoned the children’s ward.

Age at interview 39

Gender Female

To even, you know a cough and cold pushes your sugar level up, a sickness and diarrhoea pushes your sugar level down, I don’t understand how that works, but any other infection will push it up. And obviously with diarrhoea your body produces ketones which everybody does anyway, but obviously with a diabetic it’s more serious. So you have to keep your check on that, so you have to just check, test the urine, and that’s what we had at, at Christmas with, she had a flu type virus because the week before Christmas literally her whole school, well even, I think about 18 children in her class had gone down with it, so I was expecting her to get it. And she developed, started it on the 23rd December.

Oh.

Just not eating, and just wanting to sleep all the time, so I did take her to A&E but they didn’t really sort of do anything. They tested, they did a blood gas and she was fine, but then Christmas Eve she still wasn’t very good. I wasn’t happy because she wasn’t eating and her sugar level was high but I couldn’t give her too much insulin because she wasn’t eating so I was trying to, so I think I just needed sort of some support from them but again I didn’t really get it, so she went home again. Christmas Day I didn’t take her but I was looking for DKA which is Diabetic Ketoacidosis so Christmas Day I was in contact with an actual paediatric consultant on the ward, children’s ward, spoke to her and by Boxing Day she had symptoms of DKA. She had the high ketones, she was starting to vomit, she had the high temperature so she got taken back in and they admitted her and that was all down to the, the flu virus. And she’d had the flu jab as well.

And when you said you were in contact throughout this period, Christmas period with the hospital, was that the Children’s Ward?

Yeah.

Or

No it was the children’s ward. And it was the

Were they half full at the time?

They were because when I’d taken her, I think on Christmas Eve, I saw a junior doctor and she was lovely and they did a blood gas, and she was all, she was okay. It wasn’t too, cos there’s a level I can’t remember what it was but she was just under it, but they gave me the phone number and the name and said, You know if you are worried phone you know and speak to them. We will let them know. So the minute I phoned up I just said, This is blah blah blah. This is what, and they were brilliant and the, to be honest the nurses know her anyway. They all know her on the ward,

Right yeah.

Cos there’s you know, there’s only a certain amount so they all know her like the play lead, specialist. There are a few consultants there that we know that just like cover the ward, cos her Diabetic consultant doesn’t, he’s not normally on the ward.

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The play leader organises things for her daughter to do in her room when she is in hospital and cannot use the play room.

Age at interview 39

Gender Female

All the nurses and the play leader on the ward is just the best. She knows my two daughters sort of quite personally really, she knows their names and, and sort of gets staff and they, when my daughter is feeling better you know she’s feeling better cos she wants to go in the playroom or, and, but if she’s not feeling well they bring stuff to the bed, and there’s games there, there’s DVD’s so when she’s in isolation she gets her own DVD and a telly, and she gets lots of DVD’s to watch and stuff to do.

Sticking and colouring and

And do you stay the whole time with her?

Yeah.

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Naomi sends her younger daughter who has Type 1 diabetes to stay with her Mum if her sister is ill.

Age at interview 39

Gender Female

What about, just out of interest I’ve just thought of this, the swine flu year I don’t know what she would have been? She would have been, that was that four years ago.

Well they thought my oldest had that.

Did she?

And she had to have the course of treatment but no she was fine, the younger one.

Did she have that?

But she actually went to my Mum’s, she went and stayed at my Mum’s while my older one had the treatment cos we didn’t want her to, she was diabetic yes, so we didn’t, well we knew that she could, if it was, I don’t think my older one did have it but

Oh I see.

Yeah.

To be safe.

Yes, anything like that if my older one has anything like that she would go to, the younger one would go to my Mum’s so she’s out of sort of the risk really.

It’s no, I just wouldn’t

Just don’t want her to?

No, just don’t even want to take the risk.

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Naomi’s daughter feels more secure when she’s treated by nurses she’s met before and when there’s an informal atmosphere.

Age at interview 39

Gender Female

I think having the sort of the same nurses really helps. So it’s not someone new. So they all know her and even if you know we’ve been down in A&E, and that happened last time, one of the nurses from the ward came down and she recognised [daughter’s name] voice behind the curtain.

Oh really.

And came to say hallo and, which is so nice. And I think that’s, that familiarity is and it, it’s not formal there. They’re all really nice and they all laugh and joke and they’re gentle as well and they ask her about her life, and you know it’s all things like that really.

She does feel, if she doesn’t know someone she can be a little bit shy and so if she’s quite happy to have her blood tested and people to see her injections if you know her, but if you don’t know her she doesn’t, she doesn’t like it. And she won’t be vocal about something if she doesn’t know you, so that’s, that’s always good that, you know, there’s someone, and so they and they always come to introduce themselves when they change shifts so it would be another one, they’ll come in and say, Hi I’m your nurse for the night. Or, I’m your nurse for today. And more often than not when she’s in for sort of like two or three days she gets more or less a sort of, she will see that same nurse a couple of times. Obviously depending on their shifts but more often than not you do, she’ll see them both for the days and which is good, so that really helps.

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Naomi describes an event which caused her to lose trust in her GP’s ability to treat her daughter (who has Type 1 diabetes). She now phones the hospital for advice or goes to A&E.

Age at interview 39

Gender Female

I did actually phone the GP. I think, I’m not sure if it was Christmas Eve, and he just said, Well I think you need to take her back to the hospital to be re-assessed. They know more than we do. So he just passed the buck. So I actually don’t bother going really to the GP for anything like that. I will go if she’s got you know a sore throat, I’ll get an appointment at the doctors, but if it’s anything, like if she’s got ketones, that’s always an indication not if it’s 1 ketone or something, but if she’s got +3 or +4 I’ll just take her straight to A&E. I might phone the children’s ward first, again with the sickness and diarrhoea I’ll phone the ward and speak to the nurses, and just say, Right shall I bring her in now? Do you think? Or if not I’ll just go straight in. But yeah the GP oh I don’t really, I don’t think they know, they’re general practitioners aren’t they? They don’t really

And do you think that’s because of her underlying conditions?

Yeah they don’t know

Do you find it easy to, well what about the GP then? I mean do they have any role in, in her care?

Not really. There’s,

Do you mean, is there, just minor coughs and that sort of stuff.

Yeah.

That’s it.

Yeah that, yeah that’s really what I would go for. Anything sort of to do with her asthma, I mean because I, where I took her before, took her to the GP because I didn’t really want to go all the way to the hospital for a nebuliser, I knew she needed a nebuliser. Took her to the GP, he gave her, he said, Oh we’ll have to wait till the nurse comes in. Gave her a nebuliser, said, tested, listened to her chest after, said she was perfectly fine. Four hours later she collapses at school.

Right.

Couldn’t breathe. And her Sats were really low. And her sugar level had gone down, she was a 4, I think 4.1. I mean the ambulance was there within four minutes, they were fabulous. I just lost the plot and collapsed. Well I didn’t collapse but I just, I couldn’t, I think I was so scared because it just, and they got her teaching assistant from the class to come up and sit with her cos I was just crying, they didn’t want her to see I was just so scared I think.

Yes, yeah.

So that was yeah that was a bit of a problem. So I just don’t trust the GP really.

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