Seán Ó Fearghaíl (Kildare South, Fianna Fail)
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To ask the Minister for Health the measures he will take to help children with life limiting conditions and their families who are caring for them; and if he will make a statement on the matter. [13871/13]

Seán Ó Fearghaíl (Kildare South, Fianna Fail)
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To ask the Minister for Health if he will introduce a paediatric care package for children with life limiting illnesses; and if he will make a statement on the matter. [13870/13]

Kathleen Lynch (Cork North Central, Labour)
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I propose to take Questions Nos. 85 and 114 together.

The issue of the provision of home care packages for children with life-limiting conditions is complex. This group includes children who may require short to medium term care, children who have a disability and require long-term care and also sick children for whom there is no reasonable hope of a cure and who are expected to die.

The national policy document Palliative Care for Children with Life-limiting Conditions in Ireland – a National Policy (2010) 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 the publication of the policy document the National Development Committee for Children’s Palliative Care (NDC) was established by the Health Service Executive. The committee is co-chaired by the HSE and the Irish Hospice Foundation. 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. Lauralynn and The Jack & Jill Foundation are members.

In October 2012 the HSE regions were asked to indicate the total previous 12 month spend on home nursing care for children with life-limiting conditions. This amounted to €8.58m. However, it is widely acknowledged that due to financial coding issues within the system the total spend is actually significantly higher than this amount. It is also acknowledged that children with life-limiting conditions, and particularly children with palliative care needs, are prioritised within the regions and every effort is made to provide home care packages to these children and their families.

The HSE is aware that a more systematic/coherent approach is needed around the provision of funding for home care packages for children.

It is also concerned that proper governance arrangements are in place to ensure that the care being provided is clinically sound and that those providing the care to this cohort of children are adequately trained. To this end a working group has been established in HSE Dublin Mid-Leinster. The group has identified the total spend on home care packages for children and has implemented a standardised financial coding system. It is intended that this approach will be replicated across all four regions.

In addition to this the National Development Committee has commenced is work on the development of standards for the provision of home and out-of-home respite care. This will be done in partnership with current voluntary providers such as the Jack and Jill Foundation and Lauralynn’s Children’s Hospice.

One of the national policy recommendations was the employment of eight children’s Outreach Nurses. One of the responsibilities of these Nurses is to facilitate a co-ordinated support structure for children with life-limiting conditions and their families. The Nurse will identify the needs of each child and ensure that families are appropriately linked in to local services. Three nurses are in place (Drogheda, Limerick and Waterford); the fourth will take up her post at the end of March (Temple Street); and the remaining four nurses should be in place within 6-8 weeks (Crumlin, Mullingar, Cork and Galway).

The first Consultant Paediatrician with a Special Interest in Paediatric Palliative Medicine has also been appointed to Crumlin Hospital. The support structure for these children and their families includes health care staff across a range of disciplines. Some of these staff require additional training on working with children with life-limiting conditions. In order to address this, a national programme of continuing professional education on caring for children with life-limiting conditions has been established in Crumlin Children’s Hospital.