In December 2009 the Department of Health published Palliative Care for Children with Life Limiting Conditions: a National Policy. The Policy provides clear direction for the development of an integrated palliative care service for children and their families, across all care settings. It aims to address the deficits identified in a national needs assessment undertaken in 2005. Following the publication of the Policy, the National Development Committee for Children’s Palliative Care (NDC)
was established by the HSE to oversee the implementation of its recommendations. The emphasis on partnership is reflected in the committee membership comprising statutory, voluntary, professional, and parent representation. The Committee is currently co-chaired by the HSE National Lead for Palliative Care and the CEO of LauraLynn Hospice. The Policy contains 31 recommendations under 19 headings and places significant emphasis on supporting families and health care professionals to care for children in their own homes. With regard to perinatal services, the evidence available suggests that the best location of care is within the maternity or paediatric setting.
To support the implementation of the children's palliative care policy, a programme of care for children with life-limiting conditions has been established including the appointment of a Paediatric Consultant with a Special Interest in Palliative Care, based in Crumlin. As well as supporting other paediatricians, the Consultant also provides clinical support and advice to maternity hospitals and neonatologists. The programme also included the appointment of eight Children’s Outreach Nurses (CONs) whose role is to ensure that children being cared for at home by their families have access to co-ordinated and supportive services. The nurses liaise closely with statutory and voluntary service providers including local GPs, PHNs, Disability Services, the Jack and Jill Foundation and LauraLynn etc. A further two nurses are being recruited under the Programme, one in Letterkenny and the other to the Children's Hospital Group. An independent evaluation of the Children's Palliative Care Programme, which will be published shortly, has recommended that the children's outreach nursing service be strengthened, both to meet increased demand and to address geographical inequities in service provision. The Irish Hospice Foundation has also agreed to fund a second Consultant post for a one-year period.
A national programme of structured continuing professional education on caring for children with life-limiting conditions has been developed in partnership with Our Lady's Children's Hospital Crumlin. The programme is provided in locations around the country and is available to all health care staff. An integrated website for parents has been developed through the All Island Institute for Hospice and Palliative Care. A national needs assessment on respite care was undertaken and the report Respite Services for Children with Life-limiting Conditions and their Families in Ireland was published in 2013. The National Development Committee is also making progress on other recommendations including the development of the model of care, the development of a model for ‘Hospice at Home’, clinical and governance protocols, standards and pathways, and bereavement care. The HSE's Primary Care Division provides homecare packages to facilitate children with complex care needs to be cared for at home.
