Accessing respite care for children with life-limiting conditions ‘challenging’

THE level of access to respite care for children with cancer and other life-limiting conditions and their families is being determined by their age, diagnosis, prognosis and where they live, a new report reveals.

While children with cancer could access some respite services, families of children with other conditions, or without a definitive diagnosis, might find accessing respite services particularly challenging.

There are around 1,400 children in Ireland living with life-limiting conditions and about 350 child deaths each year — the majority in the first year of life.

The report, commissioned by the Children’s Sunshine Home and the Irish Hospice Foundation, says a well structured respite service would reduce hospital admissions and allow parents to spend time with their other children.

The report carried out in 11 counties by Prospectus Consulting examined care in two specific areas administered by the Health Service Executive – HSE Dublin North-East and HSE Dublin Mid-Leinster.

While the provision of respite care varied both within and between the two HSE administered areas, appropriate respite care is not available to all families of children with a life-limiting condition.

It says a range of respite care programmes, developed in a structured and coordinated way, will be required to meet the needs of 411 children currently and up to 478 children in the areas studied by 2021.

It is estimated that the development and operation of six forms of respite care both in and outside the home will require a budget of more than €10m per annum, rising to €12m plus by 2021.

Chief executive of Sunshine House, Philomena Dunne, said caring for a child with a life-limiting illness is a huge challenge for parents and siblings.

And, she said, while families had a clear preference for at home respite care, appropriate paediatric palliative care facilities and skilled staff must also be put in place.

“This report is confined to a specific geographic area, but its finding are relevant for the country as a whole,” she said.

IHF chairman, Michael O’Reilly, said the need for respite service for children in Ireland was projected to grow steadily over the next 10 years.

“Healthcare professionals often wish to refer children to respite services, but the appropriate care currently does not exist,” he said.

Mr O’Reilly said the report provides evidence and guidance for policy makers and service providers in developing such a service.