A-Z

Flu or Flu-like illness in chronically ill or disabled children

Work and finances

Managing to work and keep on top of household finances can be challenging when a child is frequently ill and needs to be cared for at home or in hospital. Phil pointed out that just the petrol costs to get to all the appointments were considerable. Children with a registered disability may be entitled to Disabled Living Allowance (DLA) and many condition specific charities have some funds to support families experiencing hardship.
 

Phil gave up work to care for Liam when he was diagnosed with leukaemia which reduced their monthly household income substantially. Liam has Disabled Living Allowance and they used the internet to find charities and organisations that would give them some

Phil gave up work to care for Liam when he was diagnosed with leukaemia which reduced their monthly household income substantially. Liam has Disabled Living Allowance and they used the internet to find charities and organisations that would give them some

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Janet: The forms. I actually find that I'd filled my own forms in because I've worked…because I'm a worker, we didn’t qualify for anything other than obviously his DLA (Disabled Living Allowance), so we were penalised for a lot of stuff cos we chose to work. They didn’t take into account that he had a lost a grand a month's income. So, I had to literally research… I spent hours on the internet filling out forms. Oh well we might qualify for this to get us through to buy, you know the rent and… while we're waiting for the DLA and that to come, cos we didn’t… it takes about four or five months for that to come and that off-sets the tax credits.

Mm yeah

Phil: So that five month period, how we managed I just… I used to go in with my forms and say, "Well this is what I've found; I've found a Trust in [city] who helped [city] families."

Janet: These are what's going to get us through the next month or two just in petrol costs alone. Cos he reacted to one of the chemo drugs so for every needle he had to have six separate ones; so that was six separate trips at like twenty quid a trip. 

A hundred and forty quid a week so, you know cross that over, what four or five weeks, it's phenomenal.

Yeah

Janet: I had to cover…I had to make sure we had enough money to live off and cover all of that.

Phil: Yeah

Janet: I did it so…

Yeah

Janet: …persistent.

Phil: Yeah, you're the one that…

Janet: I worked all the finances out…

Phil: …researched all that weren't you?

Janet: …and stuff, I do all the research and stressing.
In the UK, employees have the right to time off work to deal with an emergency involving a dependent. If care of a dependent is needed for longer, some employers will require their staff to take annual or unpaid parental leave. Parents are entitled to a total of 18 weeks unpaid parental leave until their child is 18 years old. More information on time off for family and dependents is available at GOV.UK. Daniel’s parents are both teachers. They can take one day paid leave as an emergency. After that they take annual leave or unpaid leave. Some employers may also offer paid or unpaid compassionate leave for emergency situations.
 

Waj works in a factory. Her daughter is registered disabled and her employers are supportive but she feels guilty about staying at home too often.

Waj works in a factory. Her daughter is registered disabled and her employers are supportive but she feels guilty about staying at home too often.

Age at interview: 31
Sex: Female
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For some kids it will last two to three days, for her it lasts for about a week, a week and a half to two weeks. So my life has been two weeks at work or three weeks at work, four weeks back at home. 

So it’s difficult.

Very difficult.

Yeah. And how, where did you work, what did you do?

I work as a production worker in a factory. 

Okay. And how are they with you taking time off to look after your daughter?

Well, because now she’s got disability, so they have to under, they understand, because I’ve been there for quite a long time, eight, nine years I’ve been working. So they are understanding. They are quite understanding. But now it’s come to a point where I feel bad myself that and I keep leaving work while they could get somebody who’s willing to work all those hours. And due to my daughter’s being ill, it’s not fair on them. 

So have you given up work or…?

No, I’m still going to work. I haven’t given up work.

When she’s ill and because you work, who helps you to look after her?

Oh my God. I have to pay extra babysitting out of my own pocket for people to come in the house and look after her. 

Okay, so you-

Like family friends and things like that. I have to pay them money to come and look after her, for me to be able to go to work. 

Okay.

But it’s very hard. Very hard to look after kids who has got disable, let alone having other illnesses on top of it. It’s very stressful as a mother as well as you want to help your child, but you don’t know what to do to help her. 

It also must be quite exhausting. 

It is, because I don’t get any help. I’m by myself.

And also if she’s ill during the night and then-

I wake up by myself if I have to go I have to go by myself, because my husband is not here. 

Are you married or separated.

I am married. And my husband lives in Africa. 

Okay. So, okay. 

It’s a very stressful time when she’s sick. During the night I stay up all night with her. So in the morning I can’t go to work. 
Many parents said they felt stressed or guilty about needing to take so much time off work. Michael, had to take long periods of time off work, for others it might be a day or more each week. Ruth says it’s stressful when she has to ring up work frequently to say her child is ill. Mirella feels that sometimes work colleagues don’t understand that her children can be ill so frequently. Michael said his colleagues did understand but there is still the added pressure of managing workloads when he is not there for extended periods of time. Damien said that although his workplace was supportive, he had to frequently cancel meetings at short notice.
 

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.

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.

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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.
Parents could be kept awake on and off all night when a child was ill with flu or flu-like illness and if they did not have the option to work at home, some had to take the following day off work. Grandparents or other family members who lived close by also helped to look after children when they were ill at home or stayed with them in hospital while their parents went to work. Waj’s husband lives in Africa and she has the sole care of her daughter. Sometimes she pays family and friends to look after her daughter so that she can go to work.
 

Judith’s grandparents stayed overnight when she was ill, which helped her parents cope with lack of sleep.

Judith’s grandparents stayed overnight when she was ill, which helped her parents cope with lack of sleep.

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So I'm very fortunate in that my Mum lives forty minutes away, and she is - she's brilliant. And she was - my parents were still based abroad for much of the first seven years, eight, nearly eight years of Judith's life, but my Mum devoted two full years to coming and living with us when the sleep got so bad when she was two, two and a half. And since then, particularly since they've lived back in this country forty minutes away, she comes at least two times a week, to spend the night with Judith so I don't have to get up, and help. And often, so in the weeks that she's been sick the last two years [laugh], I've often had at least my Mum and possibly my Dad too, here for a couple of nights.
Using annual leave 

Parents who often took annual leave to look after their children when they were ill had little paid leave left over to go on holiday. Taking unpaid leave from work had an impact on household finances, especially if their child had stayed in hospital that month.
 

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

Age at interview: 36
Sex: Female
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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.
Some of the parents we spoke to said they took a combination of annual or unpaid leave and carer’s leave to cover days when a child was ill.
 

Georgina works full time as a manager. When Alessio is ill, she takes annual leave or sometimes she can work from home.

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Georgina works full time as a manager. When Alessio is ill, she takes annual leave or sometimes she can work from home.

Age at interview: 50
Sex: Female
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Yeah my annual leave. So I’m always very careful how I use my annual leave.

Okay yes.

But also now I think let’s say he’s required a lot less compared to what he used to be when he was a baby. When he was younger.

Sure.

I’ve now been able now for example like I can actually; sometimes I can work from home when he’s not too bad. And when there is, I can, can still work, do my work on my computer and answer calls, especially when sometimes there’s some urgent things I must be available,

Sure.

Or my boss wouldn’t allow me to do that. So but when he’s, sometimes I just take, when he’s really ill I just take a day off to look after him.
 

Susan and her husband’s employers allow them to build up extra annual leave by working extra hours. They need this for attending appointments as well as for days of illness and school holidays.

Susan and her husband’s employers allow them to build up extra annual leave by working extra hours. They need this for attending appointments as well as for days of illness and school holidays.

Age at interview: 50
Sex: Female
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And when he is unwell, you say that you just sleep in -

We'd sleep in his room with him, yeah.

Okay. And what do you check for, throughout the night?

Well I just check [laugh] that he's breathing, probably.

Temperature?

R:    Yeah, and I check his temperature. And I make sure he's not covered too much, and, you know, we tend to just strip him off, you know? But I'm always worried about him getting too cold, so. I'd always check to make sure he's not too cold, as well.

Okay. So, that must be quite tiring for you as a parent?

Yes. Yes, it is. We do, we both, we both work as well. So I mean we just tend to not take - we wouldn't go into work the next day if we've had to be with him all night, and up with him all night. We do have to take time off work. We take a lot of time off work.

And how does impact on the family? Financially? Do you need -

Financially it's not too bad. It just means that we don't really have any holidays because, you know, most of our time seems to be taken up, most of our time seems to be taken up with appointments. You know? And he has appointments here, and appointments there. And we've had to take a lot of time off. We have all the summer holidays obviously, and all the Easter holidays, and all of those holidays we have to take off as well. So it impacts us not so much financially but socially. You know? Because we can't, we don't go on holidays anywhere, so. You know, so. We just stay here [laughs].

And your employers?

They're, they are pretty understanding. They've been great. Obviously when you run out of annual leave, you run out of annual leave. But, you know, they allow us to build up extra time by doing extra hours in work. You know, they've been great.

So it's flexible?

Very flexible, yeah.

Okay.

For both of us.
Flexible and part-time working

Flexible working arrangements and supportive employers were vital in enabling parents to manage work commitments and to “take the pressure off” at times when their children were ill. Some parents said it helped being able to work from home, or be able to work their own hours.
 

Damien works at a University and he is able work at home whenever he needs to, but it is difficult cancelling meetings when Matias is ill. Quite often he catches up with his work in the evening once Matias is asleep.

Damien works at a University and he is able work at home whenever he needs to, but it is difficult cancelling meetings when Matias is ill. Quite often he catches up with his work in the evening once Matias is asleep.

Age at interview: 42
Sex: Male
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And what about in terms of during a sort of episode of illness in terms of practicalities you’re his primary carer, you know, how do you manage, everything whole thing?

Oh right yes that’s, yes that is difficult or that can be difficult very, I mean thankfully I’m in a position where I can work at home readily.

Oh good.

And also it’s not just working at home really it’s also like, you know, hours of the day are not, you know, it’s not like I need to work at home between nine and five.

Yes.

I can do whatever I, you know, as long as the, you know it means it’s done so, you know, Matias, if I have to do four hours between 8 and 12 in the night after Matias has gone to sleep I’ll do it because it just needs to be done. So that on that basis that’s very beneficial, it’s still problematic though obviously like I have a lot of meetings so, you know, you think oh gosh, you know, I mean I've had to cancel meetings quite readily because of Matias being ill and that is difficult. And his mother who comes round she’s a nurse so it’s very difficult for her to get time off to care for him which is understandable, you know, and it is easier for me so she, she does three long days so that’s beneficial in itself because that means she can do more days a week as well so, you know can look after him but. Yeah I mean essentially I’m thankful in the fact that I determine my own workload essentially so that really helps and when I do it, that really, really helps and, you know, in another situation where I would be stuck in an office nine to five that’s very I think it’s very difficult for parents.
 

Working for her sister gives her the flexibility to go in later in the morning when her daughter is ill. She is aware of other parents who have had to give up work, or go part-time.

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Working for her sister gives her the flexibility to go in later in the morning when her daughter is ill. She is aware of other parents who have had to give up work, or go part-time.

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But I was going to say that, that’s good, something, I’m lucky enough that the job that I, my day to day job I work for my sister and her partner in an office, and obviously this is her niece and she is incredibly understanding.

Yeah.

And so should I not go into work I usually, the office is open from 10 till 6 and I go in 11.30 every day. And they are very kind and let me do that. I work till, I don’t take a lunch break, if I can get away, you know I’ll go and get a sandwich but I tend to just sit at my desk and work through it, but the amount of Mums I know that are on the forum, I don’t know them but through this, there is an enormous amount of people who have had to either go part-time or give up work. And then with young, because the children are young, so young with the diabetes and I realise that I, we are actually very lucky that I work for my sister so there is an invested interest for her, you know. And because in most other jobs I'm sure a lot of employers would say to me, “If you can’t make the hours you’re going to have to go.”
Parents (mainly women) who worked part-time, or were able to work flexible hours, found that this helped when their children were ill. Sharon works part time in administration. She is able to juggle her working hours or work from home when Henry is ill.
 

Maria can work from home when her daughter is ill so she can look after Jade but still keep on top of her work.

Maria can work from home when her daughter is ill so she can look after Jade but still keep on top of her work.

Age at interview: 48
Sex: Female
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And so that she could be near me, I could work in the next door room. I could see her, she could see me.

Yeah.

And she didn’t have to walk up and down the stairs. So we found somewhere nice and comfy for her, she’d got a TV and she can just turn it on and off when she liked, or not have it on at all, just sleep and rest. And I could keep a very close eye on her and still function and do my, some of my job. Because that’s the other stress is when you’ve got to be off work,  you know, to keep the money coming in.

Yeah. Yeah.

And not get behind, and sort of the job that I do I am the only person who does my job. So if I’m not there it doesn’t, nothing happens.

So I, you know it’s always a constant thing that I, you know I need to be on top of it. So that means if I can look after Jade and still dabble with my job, okay I’m not functioning at the highest level I could be, but I’m still in there,  and it takes the pressure off me.

Yeah, at the same time.

At the same time. And then you know then I can be there for Jade and sit with her and have a chat to her and make sure she’s okay. So those sorts of things.

Yeah.

Help and I’m sure that must improve the person’s ability to get over things if they’re not stressed themselves, or worrying what everyone else is up to and you know, so yeah I think that’s one thing that we managed to do to keep her comfortable and recuperate.
 

Clare works part time as a nurse. She takes annual leave, unpaid leave or carer’s leave when El is ill and off school, but it is difficult to manage.

Clare works part time as a nurse. She takes annual leave, unpaid leave or carer’s leave when El is ill and off school, but it is difficult to manage.

Age at interview: 44
Sex: Female
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Do you have to take time off work sometimes?

Yeah, yeah, yeah.

Ok. And does it have any impact? I mean you taking time off work?

Well it does. Me and my husband try and share it between us. Well, I don’t work fulltime which does help but yes it is difficult because you don’t want to send them back to school when they’re not well but, you know.

Well obviously you can take carer’s leave if it’s like very unplanned but obviously if it’s going on for like a week then you would have to either take annual leave or unpaid leave yeah.
Couples who both work have to make decisions about whose work to prioritise when the child is unwell. Sometimes this decision is made because of the nature of the work, current commitments and also how accommodating the workplace is. Ruth works in a University, which is a flexible employer, while her husband would need to take annual leave, so she usually takes the time off. 

Nia and her husband are teachers. She felt annoyed sometimes that because she worked part time she was the one who took the time off to look after their son, rather than her husband who worked full time. People’s careers and future income and benefits are affected by such decisions. 

Self-employment 

A few people were able to consider becoming self-employed so that they could manage their work commitments around their children’s needs. When Kwame went to school Hyacinth started to work for herself, making things to sell. She says it gives her the flexibility look after Kwame when he is ill. Adam is a taxi driver and although his finances are affected when he is not working, it gives him the flexibility to look after his son when he needs to.
 

Rebecca and her husband run their own business. Having people to work for them helps them to manage the practical day to day commitments when their son is ill.

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Rebecca and her husband run their own business. Having people to work for them helps them to manage the practical day to day commitments when their son is ill.

Age at interview: 35
Sex: Female
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Well because we run our own business, so and my side of it is more sort of it’s, to cut a long story short I find properties and investments so I can do that as and when you know but if I have a couple of days where I’m not doing that it’s not all going to come crashing down around us so luckily I can sort of jig things around.

So do you think working for yourself, having your own business, is that with your partner? With your husband?

Yes, yeah.

Do you think it’s easier or harder to manage this sort of life episodes, like completely like you know difficulties in life,

Easier because we can be more flexible. You know certain things have to be done at the right time every month so it can sometimes be tough on my husband if something comes, you know if he gets poorly around this time when he’s got deadlines to meet, certain documents have to be filled in and sent in at certain times but  most, you know it is, we are lucky that we can work from home, fit around the children so, which is why we’ve chosen you know this business and what we do, so.

Oh really.

Yeah.

Oh so it’s a deliberate choice

It’s a lifestyle business so that we can do it in, when we need to do it and work around the children. So…

Oh okay.

…luckily you know that does work quite well.

But that was already before he was ill?

Yes. 

What about financial impact? Does it have a financial implication if you have to take time off  or is it not to that extent?

Not really, again for the same reasons and that the way it’s working, we’re not sort of paid hourly or anything like that,

Yeah.

It’s just,

Yeah.

It’s, and on-going sort of thing so,

You don’t have to close shop or…

No and we’ve got sort of a lettings manager and people that work for us, they just go and do their, the actual sort of the practical hands on side of it, we’ve got the people that do that for us and so they don’t need us to be there.
Being a homemaker or taking a career break 

Families are usually dependent on two incomes to manage but in some families, one parent had taken a career break or the family were able to manage with one parent not working. This had helped them to manage the care of their child during times of illness. 

Sometimes one parent had stopped working when their child was diagnosed with a long term medical condition. Phil is now at home full time, which helps with looking after Liam when he is ill. Louise gave up a successful career in publishing when her son was diagnosed with Type 1 diabetes. Harriet gave up work when Alfie was diagnosed with leukaemia. Sarah says the benefit of not working is, “I haven't had to worry about the whole calling in to work side of things.” Lyndey doesn’t know how she would manage working at this stage in her children’s life when they are ill so often.
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