Government spend per child could be slashed - Naughten

Denis Naughten TD, Member of the Dáil Health Committee, has reiterated his call for the establishment of a national fund for children with a life limiting condition, following the airing of a documentary on RTÉ1 “No Time to Die” which looks at paediatric palliative care through the eyes of four families, offering a rare insight into the realities of life caring for a dying child.

“What is really frustrating is the fact that not only would a national fund provide a much improved service to families throughout the country with a sick child, but it would also slash the cost of care by up to 80%” said Denis Naughten.

“Currently the HSE spends over €47,000 per year on the provision of home respite for children with a life limiting condition. However, based on a recent study published by the LauraLynn Foundation and the Irish Hospice Foundation, both inpatient and community respite services can be provided for less than €10,000 per child per annum”.

“An estimated 1,400 children are living with life-limiting conditions in Ireland and about 350 children die from a life-limiting condition each year, the majority in the first year of life. As well as reducing hospital admissions and improving the delivery of services, a well-structured respite service most importantly supports parents and their sick children at a very vulnerable time in their lives,” stated Denis Naughten.

“In the first instance, what is needed is to ring-fence the HSE money that is spent on children with a life-limiting condition and to centralise this into a single national fund. This would ensure a consistency of care for children throughout the country, drive efficiency with regard to the delivery of services by ensuring that the most efficient form of service can be provided to children with similar needs and furthermore, such a system would ensure that the most appropriate equipment is made available”.

“A single national fund would also reduce the administrative burden and cost placed on individual PCCC offices in dealing with urgent and crisis situations as they arise and ensure that health professionals spend more time in the provision of front line services”.

“To date funding of care services for children with life-limiting conditions has seen large variation in the level of support depending on the historic policy in each PCCC/Health Board area”.

“Consequently, groups working in this area currently report massive inconsistencies between regions, both in terms of the funding available and manner in which applications are assessed. A national budget would not only address these issues but would also be in keeping with the Programme for Government’s commitment to a personal budget model ‘so that people with disabilities or their families have the flexibility to make choices that suit their needs best’.

“A proposal to centralise these funds in order to deliver for sick children and their families has already been put to Minister Reilly, with the support of both the LauraLynn & Jack & Jill Foundations,” concluded Denis Naughten.