Alex White (Dublin South, Labour) | Oireachtas source

I thank Deputy Ó Fearghaíl for raising this issue. He has given a very good account of the issue and the background to this important matter.

In 2010, the Department of Health published Palliative Care for Children with Life-limiting Conditions in Ireland - a National Policy, which provides the foundation and sets out clear direction for the development of an integrated palliative care service for children and their families across all care settings.

Following on from the publication of the policy, the National Development Committee for Children's Palliative Care, NDC, was established by the HSE. The committee is co-chaired by the HSE and the Irish Hospice Foundation and includes a representative from the Department of Health. The committee has overall responsibility for overseeing the implementation of the national policy recommendations. The committee's emphasis on partnership is reflected in its membership comprising statutory, voluntary, professional, and parent involvement.

The NDC agreed that an assessment should be undertaken in HSE south and HSE west to complete the national picture following an earlier exercise in two HSE regions, Dublin north east and Dublin mid-Leinster, which examined respite care for children with life-limiting conditions. The Irish Hospice Foundation and LauraLynn, Ireland's children's hospice, in partnership with the HSE published the report, entitled Respite Services for Children with Life-limiting Conditions and their Families in Ireland - A Needs Assessment, on 4 March 2013. The report provides a national overview of service provision and future respite requirements as part of a palliative care service for children in Ireland.

The report identifies some of the challenges involved in planning for respite care such as difficulties with definitions and terminology; determining the numbers of children who require respite care and the numbers currently availing of services; the extent and location of current service provision; and the perhaps at times unnecessary distinction between disability services and palliative care. As the report highlights, most families prefer to be able to care for their child at home. In order to be able to do so, adequate support systems need to be in place and this includes the availability of a high standard of respite care provided both in the child's home and also out-of-home, in an appropriate residential setting or respite unit. The report provides an indication of what is currently available and what is required at a national level to provide for the respite needs of children and families. The report acknowledges that a significant level of respite support is already being provided but access is inconsistent around the country and can be dependent, as Deputy Ó Fearghaíl pointed out, on diagnosis and-or geographic location.

The report will assist the Department of Health and the NDC in planning for the respite needs of children with life-limiting conditions and is a useful contribution to filling in the gaps in the understanding and knowledge of the way respite services for children are organised. A number of the recommendations in the report are already under consideration by the NDC and the committee has undertaken to examine all of the recommendations through its ongoing programme of work.

My Department will be maintaining a close liaison with the HSE and the NDC in this context.

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