Denis Naughten (Roscommon-South Leitrim, Independent)
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1064. To ask the Minister for Health the total spend in the past 12 month period in each primary community and continuing care area on home nursing care for children with life-limiting conditions; the number of children who availed of the service in each area; and if he will make a statement on the matter. [45905/13]

Kathleen Lynch (Cork North Central, Labour)
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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 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. "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 (HSE). The Committee is chaired by the HSE and has overall responsibility for overseeing the implementation of the national policy. The Committee's membership includes statutory, voluntary, professional and parent representatives. The Irish Hospice Foundation (IHF), LauraLynn's Children's Hospice and the Jack & Jill Foundation are members.

In 2012, HSE regions spent approximately €8.58 million on home nursing for children with life-limiting conditions. However, it is widely acknowledged that because of how the financial system is set up, this figure did not capture all relevant expenditure and that the total spend was significantly higher. It is also acknowledged that children with life-limiting conditions, and particularly children with palliative care needs are prioritised within HSE regions. Every effort is made to care for these children to the maximum extent possible, including home care for the children and their families.

The HSE is committed to ensuring that proper governance arrangements are in place, 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, to restructure the financial recording and reporting system, so that expenditure on home care for these children is properly accounted for. It is intended that this approach will be replicated across all four regions. In addition to this, the NDC has commenced working on the development of a model for the provision of Hospice at Home care. This is being carried out in partnership with current voluntary providers such as the IHF, Laura Lynn's Children's Hospice and the Jack & Jill Foundation.

One of the national policy recommendations was the employment of eight Children's Outreach Nurses, whose responsibilities include the facilitation of a co-ordinated support structure for children with life-limiting conditions and their families. The Nurses identify the needs of each child and ensure that families are appropriately linked in to local services. All eight nurses are now in place and are located in Drogheda, Limerick, Waterford, Temple Street and Crumlin in Dublin and in Mullingar, Cork and Galway.

The first Consultant Paediatrician with Special Interest in Paediatric Palliative Medicine has also been appointed to Crumlin Hospital. This Consultant is available to provide an advisory service to other paediatric and maternity hospitals.

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 partnership with the HSE, IHF and Crumlin Children's Hospital. I have arranged for the specific issues raised in the Deputy's question to be referred to the HSE for investigation and a direct reply to the Deputy.