Non-medical costs add up for families, research by Limerick-based charity finds

RESEARCH commissioned by a Limerick-based charity shows families caring for a child with a life-limiting illness are paying up to €11,000 a year in extra non-medical costs.

Commissioned by Cliona’s Foundation, the ‘Too Dear to Visit’ academic report shows how non-medical expenses including accommodation, travel costs, additional childcare and extra household bills can become an enormous financial burden on families.

There are currently around 4,000 children with life-limiting conditions living  across Ireland.

“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,” said Terry Ring whose 15-year-old daughter, Cliona died in December 2006 following an eight-year battle.

The 34-page report, which was published last week, sets out three key recommendations including the establishment of a State-supported grant scheme and the creation of a national database of families caring for children with a life-limiting condition.

Lead author of the report, Professor Charles Normand, Professor of Health Policy and Management at Trinity College Dublin says the report shows that more needs to be done to support families financially.

“It makes no sense to provide good medical treatment and no support for non-medical expenses. These expenses are just as much a part of the cost of their child’s care pathway as the treatment itself. Despite the outstanding efforts of Cliona’s Foundation to support families in dire need, its funds and work fall far short of being able to tackle the scale of demand, which is evident from our work. No charity should be expected to fill this funding gap. There needs to be a proper state funded system and process which families can readily access for exceptional non-medical expenses when they need it,” he said.

According to the report, the total financial burden faced by families across the country is estimated to total several millions of euro each year.

Since 2007, Cliona’s Foundation has distributed almost €700,000 in 29 counties across Ireland to help with non-medical expenses to families caring for a seriously ill child.