Ireland: Growing need for respite care for children with life-limiting conditions

Categories: Policy.

The national report into respite services for children with life-limiting conditions has been launched, highlighting that deficits exist in families’ access to respite care. It found that access was often dependant on the geographical location of the child, and their diagnosis.

It is estimated that in Ireland 1,400 children are living with life-limiting conditions, and that 350 of those will die each year, the majority in the first year of life. It is estimated that €7.6m is currently needed to provide respite care for about 812 children and that €8.62m would be required to care for the 925 children needing care by 2021. This is an average of less than €10,000 per child needed to be invested into respite services

It recommended that a number of key actions should be taken:

  • the National Development Committee for Children’s Palliative Care should oversee the development of national standards for the provision of respite care, promote understanding of terminology and examine the feasibility of developing an assessment tool for respite services
  • each Health Service Executive (HSE) region should set up a regional group to map existing local respite services, identify family needs and plan for future provision
  • health services should work with regional respite service providers when out-of-the-home respite is needed
  • the education and ongoing support needs of organisations providing respite should be considered
  • a national needs assessment should be repeated in 2017.

Frances Fitzgerald, the Minister for Children and Youth Affairs who launched the report, stated: “Under our 2010 national policy on palliative care for children with life-limiting conditions, respite care is recognised as an essential element of a comprehensive palliative care service. I welcome the collaboration between the voluntary sector and the HSE in producing this report which sets out very clear steps that need to be taken in developing a responsive, child friendly and flexible respite service for children with life-limiting conditions. The government will be interested in seeing progress being made in implementing the recommendations in this report.”

The report, Respite Services for Children with Life-Limiting Conditions and their Families in Ireland, can be downloaded from the Irish Hospice Foundation website. The report was funded by the Irish Hospice Foundation (IHF) and LauraLynn, Ireland’s Children’s Hospice.