Ruth

Ruth’s daughter was diagnosed with asthma at 18 months. It’s triggered by colds and viruses and she has been ill with a flu-like illness several times. Ruth and her husband have learnt to manage the episodes through close monitoring of the symptoms, increasing her medication and hospitalizing her when necessary.

When Ruth’s daughter was 18 months old, she suffered from a number of respiratory illnesses which were initially thought to be chest infections. Ruth explains that asthma can be difficult to diagnose in young children as some tests can only be done reliably after a certain age. Also, her daughter’s attacks manifest unlike classic asthma attacks as she does not get wheezy until she is already quite unwell. Some of the early signs of her asthma include a cough and her laughter and speech becoming noticeably different.

When Ruth’s daughter had her first episode of a flu-like illness, Ruth and her partner had no idea what was wrong and rushed their daughter to hospital. She was hospitalised in the High Dependency Unit for a few days. This first experience was the kick off to it all’. Ruth explains that they were not given much support or information at discharge. Her daughter was not given any medication and told she’d had a post viral wheeze. Initially, the attacks were very frequent and Ruth’s daughter was diagnosed with asthma at 18 months and was primarily given a blue inhaler. Later, she was given a brown preventative inhaler, Montelukast and Prednisolone.

Ruth’s daughter’s asthma is aggravated by colds and flu viruses and she has suffered from several episodes of influenza-like illness. Ruth and her husband have learnt to observe her symptoms closely and know how to recognize the flash point at which they know it’s more serious than just a cold. When their daughter gets ill with the flu, they manage her illness at home as much as possible, by upping her medications, monitoring her blood oxygen levels and keeping a close eye on her breathing especially in sleep. Increasing the air humidity in the house can also help her. The family also liaises with their GP surgery during an illness episode. With time and experience, Ruth’s family has learnt to manage and at times prevent her daughter’s asthma attacks.

Initially, Ruth was unaware of her daughter’s increased vulnerability to colds and flu. She found that doctors often gave conflicting advice and that over time you just have to learn to trust your judgment. They found the individually tailored Asthma UK action plan invaluable, especially during a crisis. Her daughter is seen regularly at the paediatric respiratory clinic in the hospital and has a wonderful asthma nurse for an extra level of support.

Ruth describes that they don’t particularly avoid things in their everyday life as they don’t want to limit their daughter. They also want to help her develop a healthy immune system. Ruth is concerned about her daughter’s nursery environment as they don’t always notice her early symptoms and she can deteriorate quickly. Her daughter’s asthma has had a large impact on work. Ruth has a very supportive employer and tries to split the time off work with her partner. Ruth says asthma is not always taken seriously enough and she encourages people to trust that, ultimately, that they know their child best.

When her daughter’s breathing becomes laboured Ruth refers to her daughter’s personal asthma action plan, which was written by her GP and asthma nurse.

Gender Female

What I should really have said actually is one of the things that really helps us with this little routine is the personal Asthma Action Plan.

Okay

that Asthma UK, I should have said that earlier.

Yeah.

Because that gives us, when you’re, when you’re panicking a little bit, even when you know what you’re doing, you know, when you’re panicking a little bit and you’re just like, Oh God she’s getting bad, [Ooh] and you’re kind of, you know, having that kind of conversation between yourselves about what to do next. We’ll often get that out cos it’s got the zones of you know, and it’s

How is that, could you just explain what it is?

So it has, so the Asthma Action Plan is specific to your child, that you agree with the GP or Asthma nurse. And basically for the symptoms that your child has you kind of work out a sort of green, you know a zone 1 no asthma symptoms, everything is fine. Zone 2 things are worsening, blue inhaler is being used more often. You’ve upped the brown inhaler, it ups you know that kind of and you know then you’re up to sort of three Asthma emergency, you know you’re giving prednisolone, monitoring whether that’s working, and at that point if she’s not then you, you’re going to hospital.

And although you know we know it like the back of our hands, we often get that out because it’s something tangible to kind of go, Right, she’s doing that but not that and we should do you know, so it’s, it’s quite useful to have a sort of plan to really look at. In a sort of

Yeah

specific sort of way.

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Her employers are brilliant but Ruth says no-one does the work when she is not there so it can be very stressful when her daughter is ill. Her work is more flexible than her husband’s so she usually takes the time off.

Gender Female

But what does inevitably happen is then when she does get ill, it has a massive impact on certainly my work, who take the strain a lot in terms of you know the amount of time I’ve had to take off of work, is you know massive. She’ll always come first so you know that’s what has to happen. But that’s very stressful I find, you know because, although they’re very, they’re really lovely about it, you know no-one does the work for me when I’m not there. I also have quite a lot of time-specific work to do, like I’m put in, I’m putting in funding applications for people in, it’s part of my job and you can’t, you know that’s really stressful cos you know someone’s got an application that’s got to go in tomorrow, and my daughter has an asthma attack overnight and I don’t turn up, that’s not you know, that’s not good is it? So that’s very difficult.

How do you manage that with your, with your workplace or your line manager?

Well they’re brilliant. Like I work for a university and so they are brilliant. Partly they have to be but partly because they’re nice people and they are, you know, but at the same time it’s really difficult for them. You know I mean they, I feel really sorry for them in a way cos they just have to be alright about it, even if it impacts on quite, them quite badly and no matter how nice they are about it I still get very stressed, you know about it. I’m already stressed because I’m worried about [daughter’s name] but I also you know, there’s just that level of work stress that you can’t let go of sort of thing, you know, so every time she gets a little sniffle or a cough you know it’s really like, Oh no. You know I mean it, it is anyway for her but then so as soon as I got on maternity leave it’s been a lot more relaxed in that sense. We’ve only had the one side of the stress to deal with.

Yes.

And it seems so silly to worry about work stresses when you’ve got something as this but inevitably it’s always gonna, it is going to worry you. My husband’s work isn’t quite so good at letting him have the time. He will take it if necessary, if I really can’t or you know whatever, but again it’s the work, it’s the one of you that works with a company that has the, a really good policy and it’s that company that then suffers because

And what do you do? Do you sort of take time off sick, do you take unpaid leave? Do you do work from home or?

A combination of all of the above, to whatever works best at the time. Yeah.

Have you had to take off sort of more extended periods? Do you?

No but I have had to sort of take off you know a couple of days one week and then three days the next week and then you know like so it’s, not, not in a chunk as such but extended in terms of like it keeps impacting on

Yeah

My workplace, sort of thing, over time. You know.

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Ruth keeps in contact with the GP and the hospital if her daughter’s symptoms are getting worse to get advice about when to go to the hospital.

Gender Female

I should say that what we do, also do is really keep in touch with our local GP practice when these attacks are happening. And sometimes the out of hours service as well so they, they know what’s happening as well. We’ll often sort of ring up during the day for advice if you see what I mean

Oh okay.

so that they know it’s going on. You know just for a bit of back up for us but and also just to, yeah like make them aware that it’s happening and that you know we may need to be getting down to the hospital soon and to just get advice as to, sometimes when to go. Like the GP practice are often very keen to keep a child out of hospital. The hospital are often a little bit more, Come a bit earlier. Then, you know, and we’re somewhere in between, if you see what I mean, so we just kind of keep in touch with everybody just to make sure

Okay

that it’s not just us sort of, if that makes sense?

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Ruth says she and her husband worry less than they used to when their daughter is admitted to hospital with breathing problems.

Gender Female

And how have you sort of felt, how kind of, when she’s on the ward do you, how do you feel as parents during those times?

Pretty worried, I mean certainly in the beginning we, we’re more, we know where everything is now and we know, we know now when to worry and when not to if you see what I mean. So we know what’s good [baby noise] and what’s bad and stuff so I suppose we worry less

Yeah.

Yeah I don’t, I, you know we just keep our eye on the saturations, that’s the big thing.

Do you stay on the ward?

Yeah, yeah. There’s

How is that facilitated? When, so how?

There’s like a sofa bed type thing.

Is it in the room or?

She’ll be on a ward, in her room, it’s in the ward on, on, next to her, like she wouldn’t

She has her own room?

Yeah, yeah, no, no. Well she’ll be in ward with say two, two other children.

Yeah.

Normally. And next to each bed

Yeah

Is either like a sofa-y type thing that sort of turns into a bed of sorts or a kind of put you up little bed which is actually better and more comfortable than the, so yeah either me or my husband, normally me, my husband when I was pregnant, would stay with her on there.

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Talking to an Asthma UK nurse helped Ruth when she was worried about her daughter’s symptoms.

Gender Female

And the couple of times I’ve rang the Asthma UK nurses, and they are brilliant like you know. A couple of times where it’s just at that point where you kind of think, I’m fine, I’m fine. Everything’s fine. And then suddenly you just don’t feel fine anymore and you’ve got questions and you can’t get an appointment quick enough and you don’t know, you know and they’ve been really good and really helpful. It’s nice to just talk to somebody who’s just, it’s happened twice I think.

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When her daughter, who has asthma, was a bit younger, Ruth tended to pack a bag ready to go to hospital every time she got a cold

Gender Female

So yeah no one really sleeps and it’s really stressful, it makes you feel sick when she’s, you know when she’s like this because you, we’ve seen, you know we’ve seen how bad it can get and you know we’re always, I mean one of the sad things, I do remember going to see our asthma nurse and saying I don’t think normal people pack a bag for hospital when their kids have a cold, you know like cos when she starts getting bad, quite often we’ll do that, we’ll have a bag ready. Not so much this last year but certainly the year before we did, like you know, so and I don’t think that’s entirely normal. You know so, but yeah so they’re the sort of little things that you do just to try and make it easier, you know and , but no, yeah no one’s sleeping.

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