Parents of children with congenital heart disease

There can be financial implications for parents when their child has a congenital heart defect which needs treatment. Loss of income and the additional costs incurred from time spent with their child for hospital appointments, or when they are in hospital for operations, can be an additional strain for some parents.

Various government and charitable funds exist to support parents when a child is in hospital and when parents are caring for their child at home (see below). Here parents we interviewed explain the financial impact of their child's illness and the support available.

Several parents had not at first been aware what support was available or whom they should contact to find out about possible help. They advised parents to talk to the Cardiac Liaison Officer at the hospital, their health visitor or to contact the social work department.

When a child is in intensive care, accommodation for the parents should be funded by the hospital. Some parents who also had to travel a distance to the specialist hospital had their travel expenses reimbursed. However several parents mentioned that meals and telephone calls had been quite expensive, particularly if their child had spent several weeks or months in hospital.

One couple had needed to arrange reliable care for their child at home while they were both at work, which they said had been expensive.

Another couple who had spent a long time in hospital with their daughter said there were lots of bills to return to when they came home, and advised parents to ask for help if they found themselves in a similar situation.

They describe some of the help available and advise others to ask for help if they need it.

They describe some of the help available and advise others to ask for help if they need it.

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Mother' Well, the problem, sorry, the problem we had is that because she was in hospital for quite a while there's, the money that you get through is just unbelievable. You get through a lot of money, your partner's not working, I couldn't go back to work anyway so finances are stretched and you find little snippets of things like there's you could have had, had like a social grant, '25 from the hospital which is like an emergency fund. We didn't know that was available to us the first time. Which would have just helped with buying something to eat in the restaurant and things like that or for my mum to get a taxi to pick [our son] my son up and things like that. And then there's like other, there's charities that you can apply to for help at home which we didn't know about. And, they're, they're out there but you've got to look for them yourself. I mean I've recently applied to a couple of charities - I mean you feel as though you're begging - but we've found we, that the year had been a struggle, haven't we, financially.   

I mean my mum and dad have sort of given us money for holidays and things like that but you know it's like they give you money for extra bedding if, because my daughter was very sickly and chesty with all her coughs and everything. And there's like a charity that gives you money for bedding and gives you money to go out and have days out, you know, they even bought us a tumble dryer which has been a godsend, you know, it's been brilliant. Things like that.

Father' And they give like I say they give you money for holidays and, and things like that because I suppose, they, this, the, once you sort of get used to earning so much as well and, and then all of a sudden, you see, because in my job I do a lot of sort of overtime so, your wage goes up and then when that stops because you're not at work, and although you don't think about money, you don't because it's not important, it's only when you sort of get home

Mother' Yeah

Father' And you sort of sitting and you're thinking, 'Oh look this bill', you know and...

Mother' Which one do I pay first.

Father' Which one do I pay first. Then you realise how much you have been hit. You don't, to be honest, you don't actually think about it in hospital. It's not an issue, it really isn't. It's when you come home and you've been home maybe a week or two and then you realise 'Hang on a minute, I need help here'. And there's, there's like, like my wife said, there's, there's people out there, there's charities and there's things out there that can help you that, that parents should know about and one way of finding out is to, is just to ask, ask whether it be the, the liaison sister. If she don't, she don't know she will find somebody who does.

Mother' Or like your social worker or you can actually get recommended for like holidays and things through your Health Visitor or the cardiac liaison sister or, you know, there's places that'll, that have caravans and, I mean, we've just applied for one that have got a caravan in Devon. So I know fortunately we are hopefully going to go abroad next year but you know, at least we'll be able to hopefully make use of the caravan and, and things like that. But, you know, it is there it's just knowing where to go.

Father' And you will need help.

Several parents had been able to claim Disability Living Allowance, which they had found a big help. One mother had also been able to claim Carer's Allowance, which she said had helped to relieve any financial burden.

They were able to claim Disability Living Allowance and Carer's Allowance which had relieved any...

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They were able to claim Disability Living Allowance and Carer's Allowance which had relieved any...

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Age at interview: 7

Sex: Male

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No we were very fortunate that I didn't, I didn't need to go back to work after I'd had Thomas. My husband was able to support us quite adequate, adequately. So, no, we didn't have any financial problems. Also I was helped by, at the time we had a social worker. She was there, she was there to support families of children with special needs and disabilities and she suggested that I might like to apply for a Disability Living Allowance for Thomas. Which hadn't occurred to me but she helped me out with the dreadful forms that you have to fill out and so I applied and I was granted Disability Living Allowance for him, which I did find helpful.

After which she said to me that I should also try to claim for Carers' Allowance, which I did and I was able to claim that as well. So that relieved, that relieved any financial burden that we may have had.  I found it useful because we were having to make frequent trips to the hospital which of course is petrol and my husband did have to take time off work at which time he was doing contract work so obviously only getting paid for, for the hours that he worked. Also when you stay in hospital you do end up spending a lot of money' phone calls, food, it can become quite expensive no matter how much you can, you try to keep it under control. So yes that was, I found that, I found that useful.

Several charities provide support to parents. One couple had received money to buy extra bedding and a tumble dryer and funding for a holiday (see Interview 06). Another couple had also received funding for a holiday.

They received financial help from the Family Trust Fund for expenses at the hospital and for a...

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Age at interview: 3

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My husband, he was working nights and he handed in his notice and said that, you know, he couldn't, he couldn't carry on because we was like up and down the hospital and, and that. And luckily his, his boss turned round and said that he could work part time instead of, you know, going, handing in his notice basically. So that sort of cut his hours right down, which was good for us. So he's like, he was there, you know, to come to the hospital and we felt it a bit on the money side at first. But then, you know, you just deal with it, so.

Did you find, was there any, was there any government allowances that help with this?

When we first, first found out my Health Visitor at the time said there's a family trust fund, I think it is who come out and they can help with like travelling to the hospital and, you know expenses that way, so she got in touch with them and somebody come round and he said we'd get help for travelling to the hospital as well as the food and accommodation and also they gave us money for a holiday as well and also Disability Living Allowance. They said we could get that as well so, which we got that for the first sort of couple of years which was a big, big help at the time.
 

One couple in Scotland who were both full time carers for their son had been able to claim Carer's Allowance. They had also received other financial support to care for their son at home and they advised other parents to contact the social work department to find out what help was available.

Describe the various help they received to care for their son at home.

Describe the various help they received to care for their son at home.

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Age at interview: 5

Sex: Male

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Father' I mean there's Carers' Premium, there's Disability Living Allowance, there's all these, and we didn't have a clue 'cos nobody had actually explained that until we, we got [our son] home and the house that we stayed in there was only a coal fire down the stairs, there was no heat up the stairs whatsoever and we know with heart patients they need to keep warm. So we applied to the Council and they weren't very forthcoming, they says we'd have to wait seven years to get a move and they wouldn't do nothing to get the, the heat put in. So then we went through our local councillor and then the social work department got involved and before we knew it, we'd got central heating put in. And as soon as that was put in we got moved to another house with central heating, downstairs bedrooms, things like that, you know, we got everything.

Mother' Hmm. But it wasn't until we'd actually tried to get the heating for him that we found out about all the help that you can get which in a way I feel is wrong because people are not forthcoming with things like that and a lot of people don't know. We didn't know. We didn't know that all the help we could get until the social worker had been in touch with us about the heating system and she asked 'Are you getting this? Are you getting that?' And we didn't have a clue.

Father' We said 'No'.

Can you tell me about the help you can get in case other parents don't know?

Mother' Basically a lot of help you can get is with money. Obviously you can get Disability Allowance for your child. If you're actually in the house caring for them you get Carers' Premium. You can apply for a number of things which helps a great deal. I mean, you can also, it depends on what kind, type of disability they actually, the child will get Mobility as well which then allows you if you can drive to get a car, to be able to take them places. So you do, you can get a lot of help but I would say to people that do start off like us the minute they find out that there is something wrong after the child is born even, go to the social work department [Father' Yeah] and ask them about all the help that they get because that is the people that will tell them.

A family who lived on one of the UK Islands received funding from the government for flights and taxis to travel to and from the hospital in England for their child and a parent. However they had to fund any additional flights for the child's father or brother. The hospital also gave the family cash when her son had to be air ambulanced to England for emergency surgery. She had also received a home testing machine, donated by a charity, (see Children’s Heart Federation) so that she could check her son's INR (the length of time it takes for blood to clot) level at home.