Sick children ‘failed’ over lack of home support

SERIOUSLY ill children are not receiving adequate levels of support and end of life care because of a lack of state funding for the vital service.

A study commissioned by the Jack and Jill Foundation has warned insufficient resources means seriously ill children aged between four and six are unable to access home help and medical support.

According to the “There’s No Place Like Home” study, by Prof Charles Normand and Paul Revill of Trinity College Dublin, 291 children with life-threatening neurological or physical conditions receive vital home nursing care.

However, due to the constraints on the sector, it has warned that hundreds more are not receiving the care they need.

Of the Jack and Jill Foundation’s €3 million budget, just 19% comes from the state, with the remainder provided through private fundraising and recycling old mobile phones.

As a result, the report has called on the HSE to provide an extra €1.97m in funding every year – helping to increase the number of children who can avail of the service and allow those aged between four and six to receive the support. After the age of six, different services become available.

“What makes the Jack and Jill model work is that we start off with the needs of the child and the family and we design the home nursing care model around that,” explained the group’s founder, Jonathan Irwin.

“We’re keen to get into a 50/50 partnership with the HSE in relation to funding Jack and Jill over the next five years which makes financial sense, as well as being the right thing to do and to extend our service to support children up to the age of six.”

The report also noted that caring for a seriously ill child at home is nine times less expensive than providing hospital-based care.

It found that the average annual costs falling on the state to deliver acute hospital care for a severely disabled child are €147,365 per year – almost nine times higher than €16,422 for the home care provision.

Annual direct costs per child for each family are also higher, with average costs of €22,261 for hospital care per year compared to just €2,620 for Jack and Jill provided home care.

The main cost-drivers behind the large difference include family accommodation, parking and food requirements when a child is in hospital.