National budget must be ringfenced for paediatric home nursing care programme

Jack & Jill Foundation and Irish Hospice Foundation say national budget must be ringfenced for home nursing care programme for children with life limiting conditions – Leinster House joint briefing Thursday 19th April including experiences from nurses and families.

This afternoon (Thursday 19th April), under the invitation of Senator Mary Ann O’Brien, Sharon Foley, CEO of Irish Hospice Foundation; Jonathan Irwin CEO Jack & Jill; Professor Charles Normand, health economist Trinity College, along with nurses and families are highlighting the negative consequences of having no national paediatric home nursing care budget in Ireland.

At a joint briefing for TD’s and Senators they will outline the challenges, the costs and the benefits of ring fencing money to address the needs of Ireland’s 1,400 children with life-limiting conditions. There are 350 child deaths each year and the majority of parents want to care for their child at home, which is nine times less expensive than hospital care, at €16,422 per annum, compared to €147,365 for hospital care.
(see Trinity Report “No place like home” February 2010)

In a presentation to 40 TDs and Senators, Jonathan Irwin, CEO and Founder of the Jack & Jill Foundation says that, “Having no national paediatric home nursing care budget in Ireland today is causing major challenges as funding is ad hoc and difficult to track while tremendous resources are being spent chasing up scarce resources. There are inconsistent practices between regions, hidden costs to the taxpayer and a greater burden on acute services, as well as greater stresses to parents who want their children at home, but need good support to do so.”

In terms of a suggested way forward, Sharon Foley, CEO of the Irish Hospice Foundation says that “While progress has been made by the HSE to develop hospice services for children, an opportunity exists to further plan to meet the home care needs of children with life limiting conditions as part of HSE reform and the development of new, improved budgeting mechanisms in line with recommendations from the Value for Money report into disability which is due out in May/June 2012. Today, the Jack & Jill Foundation and the Irish Hospice Foundation are calling for a dedicated home care programme for children with life limiting conditions with dedicated services for children that builds on our experience in the field to date. This will require a dedicated budget of course, using existing budget in the health system and the Government can reach budget targets in stages, but we’ve got to start soon. Doing so, will mean better coordination and will save money by keeping children out of expensive acute hospitals, so it is effectively self financing and allows these precious children to be cared for at home and in some cases to die at home. Providing these appropriate supports for families will help during their bereavement journey.”

According to Trinity health economist, Professor Charles Normand the Jack & Jill Foundation already do some of this work, having supported 1,500 children since 1997 with home nursing care, including 155 children who have died at home over the past 4 years. He says, “We’re talking about children with severe disabilities who need strong care plans to support their care needs at home and we need to get this debate going. We can start by calculating illustrative community care budgets based on the average cost of €16,422 of care for a child at home, compared to an annual average cost of €147,365 for hospital care. Our initial calculations suggest that a minimum of €14.5 million should be ringfenced in year one.”

The call to action today is for TDs and Senators to recognize this gap in the health system and to ring fence a budget immediately – within the existing healthcare budget. The Irish Hospice Foundation and the Jack & Jill Foundation argue that children with life limiting conditions, particularly those at the end of their short lives, have a right to the best possible care in their own home and it makes economic sense.

According to Senator Mary Ann O’Brien, “The fact that there is no National Home Care Budget for children is an issue I have raised tirelessly in Leinster House since being appointed to the Senate last May. It has become apparent that the majority of my colleagues are not aware nor believe that today in Ireland in 2012, we have no national paediatric home nursing care budget. In order for progress to be made in this area I arranged the briefing this afternoon to raise awareness and highlight the urgent need for a paediatric home nursing care budget to be rolled out.

“In my mind this is a gap that can be addressed short term by a ring fencing of budget, using existing budget. Longer term, and in line with the National Children’s Policy, we are moving towards a programme of care where the money follows the patient. Right now though we need action on this, as the families of children with life limiting conditions don’t have time to wait around. This unfortunately is something I know from experience.”


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