Work and finances around chronically ill or disabled children with flu or flu-like illness

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

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.

Age at interview 31

Gender Female

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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.

Gender Female

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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.

Gender Female

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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

Age at interview 36

Gender Female

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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.

Age at interview 50

Gender Female

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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

Gender Female

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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.

Age at interview 42

Gender Male

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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.

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.

Age at interview 48

Gender Female

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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

Gender Female

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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.

Age at interview 35

Gender Female

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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.” Lyndsey 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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