Parents can spend up to a third of income on children with life-limiting conditions

Non-medical costs borne by parents caring for children with life-limiting conditions can top €10,000 annually and place many people who are already in a “dark place” with a huge financial burden, a new report suggests.

The report published on Wednesday by Cliona's Foundation – a charity which provides financial assistance directly to parents of children with complex care needs – highlights the extent of the costs faced by those caring for around 4,000 children living with life-limiting conditions.

It suggests non-medical expenses including overnight accommodation, travel costs, additional childcare and extra household bills can become “an enormous financial burden on families already under immense emotional stress”.

Post-tax income

It says many families spend between €10,000 and €11,000 each year which can represent as much as a third of their post-tax income.

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"This report exposes the punitive financial burden on families caring for a seriously ill child," said the report's author Charles Normand, Professor of Health Policy and Management at Trinity College Dublin (TCD).

“Very often parents will have to take on a caring role for their child, resulting in a loss of employment and income, significantly impacting their finances, while simultaneously trying to meet unforeseen outgoings such as travel to hospital appointments, hospital parking, overnight accommodation and other non-care related expenses,” he continued.

He said it made “no sense to provide good medical treatment and no support for non-medical expenses” which he pointed out were “just as much a part of the cost of their child’s care pathway as the treatment itself”.

Non-medical expenses

Prof Normand called for a properly funded State support system and processes which families could readily access for exceptional non-medical expenses when they need it.

"Our report highlights the scale of the problem and the need for State support for these vulnerable families through the creation of a special grant system to help families with exceptional non-medical expenses," said Terry Ring, the co-founder of Cliona's Foundation.

He suggested that it underlined “how State support is often inadequate, slow to respond, poorly targeted on the needs of these families and can be difficult to access.

“Non-medical expenses can be astronomical, as we know from first-hand experience, which is why we set up Cliona’s Foundation, to help provide grants to alleviate some of this considerable financial stress. Because when you’re already in a deep and dark place with a sick child, the last thing you want to worry about is money.”