The issue of the provision of home care packages for children with life-limiting conditions is complex, encompassing those requiring short to medium-term care, those with a disability requiring long-term care and also sick children for whom sadly there is no reasonable hope of a cure.
Palliative Care for Children with Life-limiting Conditions in Ireland – a National Policy, published in 2010, provides the foundation and clear direction for the development of an integrated palliative care service for children and their families across all care settings. Following its publication the national development committee for children's palliative care, NDC, was established by the HSE to oversee the implementation of the national policy. Membership includes statutory, professional, parent and voluntary representatives, including the IHF, LauraLynn and The Jack and Jill Foundation. The NDC has commenced working in partnership with these providers to develop a model for the provision of hospice at home care.
In 2012 the HSE spent approximately €8.58 million on home nursing for children with life-limiting conditions. It is widely acknowledged that this does not capture all relevant expenditure, which is significantly higher. Children with life-limiting conditions, in particular palliative care needs, are prioritised by the HSE. Every effort is made to provide care to the maximum extent possible, including home care for them and their families.
The HSE is committed to proper governance, that care provided is clinically sound and that those providing care are adequately trained. A suitable national programme of continuing professional education has been established in partnership with the HSE, IHF and Crumlin children's hospital. A working group has been established in HSE Dublin mid-Leinster to restructure the financial system so that relevant expenditure is effectively accounted for. This will be replicated across all regions.
Eight children's outreach nurses are in place throughout the country to facilitate a co-ordinated support structure for children and families. They will identify the needs of each child and link families to appropriate local services. The first consultant paediatrician with a special interest in paediatric palliative medicine has been appointed to Crumlin hospital and is available to provide an advisory service to other paediatric and maternity hospitals.