Seán Ó Fearghaíl (Kildare South, Fianna Fail) | Oireachtas source

Táim buíoch, mar is gnách, don Cheann Comhairle as ucht an t-ábhar fíor-thábhachtach seo a roghnú inniu. Baineann sé le páistí óga a bhfuil bás luath i ndán dóibh.

There are 1,400 children in Ireland today with life-limiting conditions. About 350 such children die each year and most of these young lives are limited to less than one year. The majority of their parents would, of course, wish to care for their children at home. The policy document on palliative care for children with life-limiting conditions was published in 2010 by the Department of Health. On Monday of this week the Irish Hospice Foundation and the Children's Sunshine Home published a needs assessment for the HSE's Dublin mid-Leinster and Dublin north east areas. This assessment was done to assist with the 2010 document's recommendation that a comprehensive children's palliative care service needs to operate within a co-operative model with close liaison between all stakeholders and relevant service providers. Another key recommendation was to set up a national development committee for children's palliative care.

Respite is naturally a major part of care for many children with life-limiting conditions and their families. With this in mind, the 2010 document recommended that a range of respite services should be developed for children with life-limiting conditions who have palliative care needs. It further recommended that hospice-at-home teams would be developed by the HSE, that inpatient hospice beds specifically for respite should be developed as part of the children's palliative care service and that each HSE administrative area should plan and develop respite facilities for children with life-limiting conditions and their families. One of the priorities identified in the national policy was an audit of existing respite facilities and the Children's Sunshine Home and the Irish Hospice Foundation set out to identify existing services and to assess current and future need within the two administrative areas referred to earlier. The assessment found that the provision of respite care services varies both between the two HSE administrative areas under study and that it is not available in either area to all families with a child with life-limiting illnesses. Limited in-the-home and out-of-home services are provided, often supported by a combination of voluntary and statutory funding. Some services are diagnosis dependent or age dependent, that is, confined to babies or very young children. Families whose children do not have a definitive diagnosis may find access to respite particularly challenging and it is likely that the voluntary sector will continue to be the key service provider. Currently, for example, the Jack and Jill Foundation provides respite services to 126 children in the two areas studied.

The assessment finds that the need for a palliative respite service for children with life-limiting conditions is projected to steadily grow over the period to 2021. It also points out that a range of respite care programmes, developed in a structured and co-ordinated way, will be required to meet the needs of 411 children currently, and up to 478 children by 2021 in the areas studied. Furthermore, it is estimated that the development and operation of the six forms of respite care outlined in the study will require a budget in excess of €10 million per annum, rising to €12 million plus by 2021, assuming a 70-30 ratio between in-the-home and out-of-home respite care. It goes without saying that providing care of this nature to a child with a life-limiting condition at home can be physically and emotionally demanding.

I look forward to the Minister of State's response.

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