The establishment of a national coordinated fund for sick children with a life-limiting condition would allow terminally ill children to leave hospital for Christmas which, in some cases, will be their last chance to have a Christmas surrounded by family in their own home, says Denis Naughten TD.
“Not only would such a national fund save money and deliver a better service for sick children with a life-limiting condition but it would also release paediatric beds for children awaiting admission to hospital,” stated Denis Naughten.
“What is really frustrating is the fact that children will be forced to remain in hospital this Christmas, possibly their only Christmas, because the local HSE budget has been exhausted for the current year.
“3 years ago I presented proposals to the Department of Health on where the monies could be found to establish a single national fund for the estimated 1,400 children living with life-limiting conditions but we are still no further on today.”
Through parliamentary questions the HSE revealed that in 2015 the various Primary, Continuing and Community Care offices throughout the country will spend €13.8m on the home care of children with life-limiting conditions at an average cost of €57,154 per child.
However, Denis Naughten believes that despite this spend the needs of children and families are simply not being met.
“The service is being smothered by internal health politics leaving the likes of LauraLynn Children’s Hospice and Jack and Jill picking up the slack – an intervention which prevents these 1,400 children from having to spend their limited lives in hospital,” he explained.
“Every year about 350 children with a life-limiting condition die and a 2013 study by LauraLynn, Ireland’s Children’s Hospice, and the Irish Hospice Foundation (IHF), estimated that up to €7.6m was needed to provide respite care for about 812 children – an average of less than €10,000 per child being required to support sick children.”
At present if a parent wishes to care for their child at home they are dependent on the funding drawn from the overall budget of their local Primary, Continuing, and Community Care (PCCC) office.
“Instead of this piecemeal approach, if the HSE established a national home care budget for children with life-limiting conditions it would improve the service available to sick children and do so well within budget. This would be achieved by segregating the funding currently being provided by individual PCCCs and diverting it directly to a single national officer within the HSE who would have responsibility for its disbursement,” stated Denis Naughten.
“Amongst other benefits this proposal would ensure consistency of care for children throughout the country, drive efficiency, ensure that health professionals spend more time in the provision of front line services rather than being tied up with an advocacy role on behalf of an individual child, release expensive acute paediatric beds (costing €147k p/a), and ensure that children will not be forced to spend their remaining days in hospital because the local PCCC has exhausted its budget.
“This is just one example of where the failure by the HSE and Department of Health to actively manage its funds is leading to a reduced service at a far greater cost to the vulnerable who rely on it. And sadly, such non-management is not isolated,” concluded Denis Naughten.