Parents of children with congenital heart disease

Financial concerns

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.

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.

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.

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.

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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.

See GOV.UK website for further information on benefits.

Last reviewed December 2014.

Last updated December 2014.

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