'People can end up reaching out to charities': Parents call for more help with costs for sick children

The Campbell family regularly makes the almost nine-hour round trip from Donegal to Dublin to attend Rory's hospital visits.

A parent of a child who has spent long periods in hospital has said the added costs to the family mean that sometimes she has to decide between having dinner or having breakfast while he is receiving care.

Claire Campbell said her son Rory spent 10 weeks in hospital just before Christmas and involved a nine-hour round trip to the children’s hospital in Crumlin from their home in Donegal. 

Rory, who turns seven next month, has cerebral palsy and complex medical needs, which often involve one or two hospital admissions a year.

“It’s the cost of accommodation, of filling the car, of feeding yourself,” she said. “But it’s also at a time when our electricity bills are coming in three times the amount they were two years ago.

“People can end up reaching out to charities for help. You feel bad you’re reaching out to them because you think someone else might be in need of it more. But it’s not just us facing these issues. There are lots of families in this situation.” 

Ms Campbell was speaking as Children in Hospital Ireland urged the Government to support families with the non-medical costs of caring for a child in hospital in the upcoming budget.

It wants to see a pilot scheme providing immediate financial assistance, along with a new social protection payment to support families with children who require prolonged or frequent hospital care.

CIH Ireland said research it had conducted suggested three in five parents have had to take on debt to meet the non-medical costs associated with having a child in hospital, with parents spending up to €150 extra a day during their child’s hospitalisation.

Overwhelmed

Parents reported being overwhelmed at the impact of the costs of travel, accommodation, parking, food, laundry, childcare for other children and a potential loss of income due to time away from work.

“We are lucky to have the supports we do,” Ms Campbell said. “I know families who’ve spent six months, nine months in hospital.

There’s so much to take into consideration when a child is in hospital long-term, and it has such an impact on families. The likes of carer’s allowance, domiciliary care. 

"Even when you’re at home it only goes so far. You might be relying on that to pay your electricity bill. Or your rent. Sometimes it’s not enough to meet the needs of a family.” 

In terms of the supports for families, CIH Ireland said we could model a pilot fund to provide supports to families based on a similar initiative in Scotland.

That fund provides financial support for the families of inpatients from birth up to the age of 18 and covers costs such as food, travel and overnight accommodation where necessary. It asked for such a fund to be made available, with an initial €9.5m in funding.

“The strain of having a child in hospital is already overwhelming and the financial costs only exacerbate this stress,” added Children in Hospital Ireland chief executive Anna Gunning.

“A parent's core concern should be with the care of their sick child, not the emotional and financial burdens incurred by the non-medical expenses associated with their child in hospital care.”