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Mirella

Age at interview: 36
Brief Outline: When Mirella’s was about 12 months old he started to develop croup and suffered from a series of colds. He was eventually diagnosed with asthma and has experienced several episodes of flu-like illness since.
Background: Mirella lives with her 2 sons, aged 6 and 3 years, and her husband. She works part-time as a HR professional. Ethnic background: White European.

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When Mirella’s son was about 12 months old he started to develop croup and suffered from a series of colds. This escalated to chest infections and wheeziness which resulted in several hospitalisations. He was eventually diagnosed with asthma. 

Mirella explains that she often finds it quite difficult to tell whether her son is suffering from flu or flu-like illness or just a cold, as his breathing is often laboured by colds. She said that a key indicator for her is his temperature and that her son’s condition deteriorates quite rapidly when he has a flu-like illness. As soon as Mirella notices signs of flu or flu-like illness in her son, she will up his inhalers and monitor him closely. She describes how over the years she has developed a ‘gut instinct’ and tries to manage symptoms at home before taking him to hospital. She explains that she has very good relationships with her GP and the hospital, which has been extremely helpful. Her long standing relationship with her GP means that he knows the children’s ill states well. 

Mirella initially found the flu episodes quite upsetting and stressful but has developed a relaxed and methodical approach when Ben becomes unwell, in that she knows “it gets worse before it gets better”. She says that although you get used to managing flu episodes, every episode is different.  She describes how the last episode had been more severe than previous ones. After a visit to the GP, she had been managing his symptoms with antibiotics and inhalers at home. She had monitored him throughout the night but had been unsure whether she should take him to hospital. In the morning, she contacted the out of hours GP who recommended she take him to hospital. He was suffering from laboured breathing, a temperature and his ribs were ‘going in’. He was also very quiet, which was unusual for him as he is usually fairly active even when unwell. Mirella explains that they have had many stressful episodes but they have always managed.  As the last episode was unusually bad Mirella is a bit more concerned about future episodes.  

Mirella tries to keep life as normal as possible for her son but will keep him at home if she knows that there are illnesses going around at school or amongst friends. She has a good relationship with her son’s school, which provides her with confidence that his condition is being monitored and managed appropriately. She and her partner have found it challenging to manage their work around their son’s illness. She has had to use up her annual leave to take care of him, which has meant she has had to take unpaid leave for holidays. As Mirella’s family lived abroad, she has found the support from her friends invaluable.
 

Mirella gives her son the maximum dose of asthma medicines she can give him at home and if he is still struggling to breathe, she goes to the hospital.

Mirella gives her son the maximum dose of asthma medicines she can give him at home and if he is still struggling to breathe, she goes to the hospital.

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I think it’s monitoring the symptoms and, and obviously you know if they pull their ribs in and, and, and you can see from here in the throat and, and with their stomach. My son often when he’s really bad you know starts shifting shoulders every time he’s breathing in. It is, it’s just I don’t know I guess it, it is still looking at the symptoms and you know you own child quite well, and I did also buy a little oxygen monitor, the sort of Sats meter, ‘cos we always you get discharged from hospital if, if the oxygen levels are certain amount or above, so then for me that’s good indication that if I can look after him with the inhalers at home and the oxygen levels are high enough then I’m more relaxed and confident to stay home. And obviously if we put the maximum dosage of medication I’ve been told I can give home and it’s still, he’s struggling then obviously I would then go to hospital, that’s for peace of mind for me whether it’s the right or wrong thing to do I don’t know. But it, I like to work from, I know the facts and then I decide where I go from, and so far it’s been working quite well and my consultant was quite happy with it. 
 

Mirella rang 111 when her son was not getting any better and they sent an ambulance to take him to hospital.

Mirella rang 111 when her son was not getting any better and they sent an ambulance to take him to hospital.

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But the latest one that he’d had you know a cold or, or flu, and also a chest infection and he’d had antibiotics and sort of inhalers and everything. But even despite all the medication and antibiotics he wasn’t getting any better. I’d been sort of looking, assessing him throughout the night, umming and ahhing whether I should go back to the doctors, ‘cos obviously he’d already seen the doctor the previous day. And then in the morning I think it was seven o’clock, six, seven o’clock I then rang to the 111 to try to get an appointment first thing when the after-hours where I live, that’s that particular surgery opens up, and, and then based on how I described of his symptoms they decided that it sounded more urgent, that we needed to go for medical attention straightaway rather than going to see the doctor, and go that way. But it’s, again it’s, it’s very laboured breathing, sort of ribs going in, and, and you can sort of hear it that they are struggling. And you, they just seem quite unwell. My son does poorly very well, so even though when he’s very struggling breathing and he’s very poorly he’s still very active and talkative and quite alert. So it’s really difficult ‘cos sometimes I’ve had the doctor to see him or the ambulance people, and they say, “Oh, oh is this the patient?” And then oh, and then after when they’re doing their sort of paperwork that they need to complete before they are allowed to leave, then they actually realise you know take readings and “Ah, he is really poorly” and we’ve been blue-lighted to hospital. So it’s, it’s very tricky.
 

Nia found it stressful watching her son’s reaction to having the nebuliser mask on his face. Now he is more used to it and it is much easier to manage.

Nia found it stressful watching her son’s reaction to having the nebuliser mask on his face. Now he is more used to it and it is much easier to manage.

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Well the first few times when, when my younger son went to hospital and having the breathing difficulties he is not used to having a mask on his face, or given the nebulisers so he was very distressed and obviously struggling and screaming and being upset and scared, and then me never, I have never been sort of giving him inhalers or nebulisers. So then for me to learn how to do and actually you have to quite strongly restrain them, so sometimes there might have been five of us, five grown-ups to hold him still enough to give him the medication that he needs to be able to breathe. So that’s very, very stressful, when you see your, your child struggling and people pinning him down and then with the time he’s learned this is what happens, if I can’t breathe they put this on, and so he has a more relaxed approach to it then which makes it much easier for me to deal with. 

But yeah, yeah, it is stressful and it’s scary and frightening but again it comes with experience that then when you have to do it all the time you sort of, you know what to do, how to help them  and they learn “Okay, I’ll have this treatment and then I’ll feel better.” So then you just learn, learn the way of being in a hospital if you like.
 

Mirella talks about the facilities that were available for parents when she stayed in hospital with her son.

Mirella talks about the facilities that were available for parents when she stayed in hospital with her son.

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The hospital, with my younger son, so it’s just been the last few years the hospitalisation. Normally we, we have been in a room that has I think six beds, sometimes there isn’t any other children, sometimes there is but there’s your hospital bed and they have this sofa chair that folds up, oh no folds down to a bed, and normally the nurses at some point in the evening they come and pull it out for you. And then in the morning they help you to sort of put it back as a chair, obviously the children get fed and parents don’t. There is a room where you can make teas and coffees and there is a fridge where you can bring your own food and label it. But it is quite tricky actually to just keep yourself going and feed yourself because if you’ve got a very ill child and you are with them you can’t really walk to the hospital canteen to get yourself food. And if you haven’t got a partner or friends who can help you, then it, well obviously you can get a bit hungry. But then I’ll always be offered some toast and then the food my son doesn’t eat, I’ll pinch his dinner [laughs].
 

Mirella says that her son needed to have antibiotics to treat his infection and he would not have got better without it.

Mirella says that her son needed to have antibiotics to treat his infection and he would not have got better without it.

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Well obviously or it’s always you hear that you shouldn’t have too many antibiotics but you sort of sort of build-up resistance. But then again in my opinion if you need them you need them, and, and I don’t think the GP’s would prescribe them just for the sake of it, and, and where we also quite often do this talk, discuss with my GP whether we want to wait a few more days or start the course straight away, I think you know if you need antibiotics and if my children need it then I’m quite happy to give that to them. So yeah no problems having antibiotics prescribed to them, that’s fine. 

And I guess you know, why my older son, different medical issues than to wheeziness, but he for his first two years pretty much had a course of antibiotics every day, not every day, every month. So yeah so he got prescribed pretty much once a month antibiotics. But then I did appreciate that he needed it. So yes he might have built up a bit of a tolerance but then again you know his condition would have not got better without it, so although I was concerned a little bit I still gave the antibiotics to him because obviously they needed it so.
 

Mirella’s GP does not always prescribe antibiotics straight away for her three year old son. But she trusts his judgement because he knows her son well.

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Mirella’s GP does not always prescribe antibiotics straight away for her three year old son. But she trusts his judgement because he knows her son well.

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Well sort of, you might yeah take your child to the GP and then they listen to their chest, or, or throat or whatever it is. And they would say, “Well I would think there is an infection there, but we you know would be happy to wait for a day to see whether it starts clearing without antibiotics.” And then, or then often the GP says, “Well are you happy with this?” And I would say, “Yes.” Because you know and I have been given a prescription, but say “Wait for a day, and if you can’t see any improvement then please do start the course of antibiotics.” And I guess, yeah it’s just you know if they say, if they say you have to have it, then it’s a clear infection of course I will start and then in sort of cases which are not so obvious then we’ll just go on the, the history that they’ve had before and obviously I’m lucky enough that I always pretty much see the same GP who knows my children from birth till now, and obviously he’s seen them very poorly and not so poorly. So even just walking into the doctors surgery he can say, “Oh he’s very poorly this time,” or he might say, “Well actually he looks a lot better than he used to be, when he was this poorly, so are you happy to wait for a day or two? And I’ll give you the prescription anyway and then if, if you feel that he’s getting worse then just start it.” So I think for me particularly is that I’ve got very continuous care with the same doctor, who’s seen them very well and very ill and in between. And that’s why I think I really trust his judgment as well. And go with whatever he recommends really.
 

Mirella avoids her three year old son coming into contact with other children if she knows they have colds. During the winter months she doesn’t take him to indoor play centres.

Mirella avoids her three year old son coming into contact with other children if she knows they have colds. During the winter months she doesn’t take him to indoor play centres.

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No, I mean obviously I would try to avoid if you know, let’s say if he’s been invited to a birthday party and you know that half of them are really bad with the cold or sort of, well cold I guess ‘cos if they had the flu they hopefully wouldn’t bring their children to parties, but I have sometimes decided not to go to a birthday party just to avoid him getting you know a new episode just because I know that his immune system is quite low and he tends to pick these things. Winter time trying to avoid play, play centres, indoor play centres are things where you know that sort of where the germs will sort of yeah, but I still try to live as normal a life as I can, and for him to be able to live as normally as possible, and try not to avoid places. But at the same time sort of, oh it’s autumn now and it’s, you know that it’s getting worse so if you can avoid places that it’s most likely to come in contact with lots of children and potentially people with colds and flu then I’ll stay home.
 

Mirella’s husband sometimes works at night. If her son becomes ill during the middle of the night she has to find someone to look after her other child.

Mirella’s husband sometimes works at night. If her son becomes ill during the middle of the night she has to find someone to look after her other child.

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But balancing with the other children, your work and your home life my husband works in shifts, so then trying to take that in consideration, or say when we need to go to hospital in the middle of the night, I’ve got two children and my husband’s working, I’m home on my own. Then trying to find somebody in the middle of the night to come to your house or you take the child with you, or try to get your husband home. And if it’s emergency you know it can be emotionally quite stressful and stressful in general.
 

Mirella tries to involve her eldest son by asking him to help with looking after his brother.

Mirella tries to involve her eldest son by asking him to help with looking after his brother.

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Do you think that there’s been like an impact on your older son with you having to go to hospital and things like that, and as you said…

Yeah.

…do you take him with you or do you…?

Yeah I mean I’ve, I think you know most of the time has been lucky that either my husband has been on his way home or has been home or been sleeping and I’ve woken him up to go to hospital with the other one. I think the older one sometimes feels a bit left out because obviously the younger one is getting a lot of attention, whether it’s from me or the doctors, or everybody’s fussing over, and when your child is very ill and the other one isn’t although I do try to think of him and sort of get him involved and say well would you help your brother to you know get him a drink or give him a drink or give a cuddle or something. It, yeah they do feel a bit left out. 
 

Mirella feels confident to send her son to nursery if he is starting to have a cold. She informs his keyworker about what to do if he starts wheezing.

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Mirella feels confident to send her son to nursery if he is starting to have a cold. She informs his keyworker about what to do if he starts wheezing.

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Yeah I mean obviously is if normally everything sort of sort of kicks off pretty quickly, when they get a cold or flu so I go, yeah by their symptoms. Obviously both the nursery and school they are very supportive. They know about his condition and we’ve talked through so they’ve got an inhaler, over there. So sometimes if he’s not really bad but he’s wheezy, wheezing when he has gone to nursery or now to school, I can then ask them would you please give him you know two puffs of the inhaler every two to three hours and if it looks like that he needs more could you give me a call. So obviously I wouldn’t take him to nursery if he’s really ill with the infection and having a temperature, but if you’ve got a mild cold and he starts getting wheezy and he’s happy and playing and eating then I would still let him to have a go and then just to sort of, working together quite closely with the keyworker at school, or in the nursery we’ve set sort of certain parameters that if this happens please call me. So that the decision making still is with me whether he should be there or not. But yeah again it’s comes to your sort of good relationship with the care provider.

Has that worked well?

Yes, yeah. Yeah. Yeah I mean he’s just started school, literally three days ago so that’s a new environment, so I don’t know how it’s going to work over there, but in the nursery where he went from one year old until now, he’s three, it’s sort of been you know with the key workers and you have the meeting and sort of have to review the treatment plan if you like.

Yes but it’s, I guess it’s just, you know the keyworker that he’s got is brilliant but then I’d have to say that when he, she’s not in I might feel a bit anxious to leave him there because I’m not sure that the whole pool of the nursery nurses that are there, they might not be so aware of, of his situation or what has been agreed. So I guess then if I take him in and the keyworker is not there I might then ring and check or even say, “Well actually I think I’ll keep him home,” but again that comes to the good relationship with the people you sort of, who cares for your children really.

And just to follow up on that ‘cos he’s just started school?

Yes.

How did you approach, have you approached this yet with the school?

Yeah I mean we had the before the summer holidays, we had settling in sessions, we went there for two hours so he would sit down with the key, again they’ve given key workers ‘cos it’s still the nursery class.

Pre-school

At school, yeah. So I explained that this is his condition, what he’s got and, given inhalers and the spacer and everything, but I think probably him being there now and things starting to settle and the flu season kicking in, I think I will probably have to make an appointment just to sort of discuss it through and again sort of agree on some sort of plan, what to do and, but he would, he goes to the nursery in the morning, and the nursery drops him to school. So again then I would probably discuss with the nursery that if, at the point that they are walking him to school if they are not sure then they would ring me and then we go from there.
 

Mirella’s husband works shifts and can look after the children Monday-Wednesday if they are ill. She took unpaid leave to visit her family in Finland because she had used all of her annual leave to look after her children

Mirella’s husband works shifts and can look after the children Monday-Wednesday if they are ill. She took unpaid leave to visit her family in Finland because she had used all of her annual leave to look after her children

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Yeah when, when the children are ill I use my annual leave.

Right.

To look after, obviously I don’t, we don’t get any paid leave to look after the children. Obviously if we’re half the way through a day there’s an emergency and you have to attend, you can go home and, and that’s fine, but the following day you either take unpaid leave or annual leave. What we’ve done that yeah I use my annual leave to be home with, with them which means then that I haven’t got annual leave actually, to go on holiday. So there’s been a few years now we haven’t had enough days left for holiday. So this year, for yeah there was financial impact as well that I have wanted to go to see my family in [Country] where I’m from and I had to take unpaid leave to be able to go there because I didn’t have any holiday left. So then I guess that makes your life even harder that although I’m not off from work anymore than my colleagues but then it seems like when you quite regularly have to take time off that you are not there, but they are using the same amount of days than they do, they just take it as a holiday. I take them to look after ill children. Yeah. It’s a bit of a juggle. Sometimes it’s, I’m lucky that my husband works in shifts so he might be home on, you know, Monday/Tuesday/Wednesday anyway, so he can look after the children when they are ill, which he does a lot. So he’s, we share  and then  he’s taken annual leave from work to look after the children and his employer gives him a few days a year to look after children when they’re poorly. Whereas mine doesn’t so but overall then we’ll just have to juggle.
 

Mirella says parents also need a pat on the shoulder sometimes.

Mirella says parents also need a pat on the shoulder sometimes.

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Just listen to the parents and also, although they are not medically trained, but because they know your children, know their children you know it’s a good indicator. So no, I think just to provide care in a way that it support, a little bit, you know, a pat on the shoulder or, or just asking how are you and how are you coping. Just a little thing, nothing to do with medicine, but just kind of acknowledging their presence and their worries, and just a little support and then the parents will I think work better with you as well.

A bit of human?

Mm. The human touch yeah definitely yeah. Yeah.
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