KEY DOCUMENTS

This section of the website contains the main policy documents relating to children’s palliative care in Northern Ireland and the Republic of Ireland.

Republic of Ireland

Palliative Care For Children With Life-Limiting Conditions In Ireland- A National Policy

This policy provides a foundation upon which children’s palliative care services can be developed in Ireland. It is divided into three sections. The first section defines and describes palliative care for children with lifelimiting conditions and draws on national and international developments in this small and highly specialised field of health care. The second section describes services as they are currently provided. The third section gives clear direction for the future development of palliative care for children.

Link to Document: Palliative Care For Children With Life-Limiting Conditions In Ireland- A National Policy

Palliative Care Needs Assessment for Children

This research aims to describe the situation of children with life-limiting illnesses nationwide. The completed work represents a mandate to develop a menu of supports involving many different professionals. It clearly articulates the preference for children to be cared for at home and the range of physical, medical, nursing, psycho-social and practical help required in order for this to happen – including the need for respite care and family support.

Link To Document: Palliative Care Needs Assessment for Children

Respite Services for Children with Life-Limiting Conditions and their Families in Ireland – A National Needs Assessment

The intention of this new report is to provide a national overview of the current provision of and future need for respite care for children with life-limiting conditions. Once again commissioned by what is now LauraLynn, Ireland’s Children’s Hospice (formerly the Children’s Sunshine Home) and the Irish Hospice Foundation, in partnership with the HSE, it seeks to provide a clear overview of national requirements for respite as part of a palliative care service for children in Ireland.

Link To Document: Respite Services for Children with Life-Limiting Conditions and their Families in Ireland – A National Needs Assessment

Northern Ireland

Northern Ireland Antenatal Pathway

The Northern Ireland Regional Paediatric Palliative Care Network (RPPCN) have developed a resource to support families and professionals where a diagnosis of a potentially life limiting, or life-threatening condition has been made at antenatal stage.
The resource will help inform parental decisions and promote effective communication between professionals to  ensure the most effective supports are put in place.

RPPCN Website: https://hscboard.hscni.net/our-work/commissioning/rppcn/

Link To Document: Antenatal Pathway

Integrated Care Pathway for Children with Complex Physical Health Care Needs 

This pathway guides community services in meeting the needs of families, children and young people, aged up to 18 years, who have complex physical healthcare needs. This is defined as: Children (and young people) with complex physical healthcare needs are those who require a range of additional support services beyond the type and amount required by children generally and those usually provided to children with impairments and long-term illnesses.

Link To Document: Integrated Care Pathway for Children with Complex Physical Health Care Needs 

A Review of Children’s Palliative and End of Life Care In Northern Ireland

This document sets out the strategic direction for the palliative and end-of-life care of ill and dying children and young people in the North for the next ten years. It follows public consultation in early 2014 on 18 proposed recommendations aimed at enhancing the existing care and support for children and young people with life-limiting or life-threatening conditions, as well as their families.

Link To Document:  Providing High Quality Palliative Care for Our Children. A Strategy For Children’s Palliative And End-Of-Life Care 2016-26

Getting Home – An Evaluation of the impact, outcomes and added value step down care provided in a children’s hospice setting offers children, families, health and social care providers and commissioners

The report evaluates the impact, outcomes and added value that ‘step down’ care provides to children, families, health and social care providers, and commissioners, in a children’s hospice setting and puts forward six recommendations which centre on the need for a holistic care approach. It ascertains that children who are considered ‘medically stable’ should not remain in an acute hospital setting for any longer than is clinically necessary and explores the potential for children’s hospice’s to provide an alternate setting for care within a ‘step down’ model. 

Link to Document: Getting Home – An Evaluation of the impact, outcomes and added value step down care provided in a children’s hospice setting offers children,families, health and social care providers and commissioners