It is estimated 3,800 children in Ireland have a life-limiting illness. The end-of-life care needs of children differ from those of adults. A child may be diagnosed with an incurable illness as a baby, but may live into late adolescence or beyond. Their physical, emotional, social and educational needs will change as they grow. Many children with life-limiting illness have disabilities of different kinds, and their needs can vary greatly.
Supporting the development of palliative care services for children with life-limiting conditions has been a cornerstone of our activities. For over a decade, we have been working in partnership with the HSE and other organisations to ensure services are developed.
Over the past ten years, we have had some key achievements:
- We commissioned the ‘Evaluation of the Children’s Palliative Care Programme’. Published in September 2016, it highlights significant improvements in palliative care for children.
- We drove the first nationwide study on the end-of-life care needs of children, with the Department of Health & Children, resulting in the development of government policy on children’s palliative care.
- We funded 85% of the start-up costs of the Children’s Hospice Homecare Programme which included a team of Children’s Outreach Nurses and Ireland’s only Paediatric Consultant specialising in Children Palliative Care.
- We funded a Children’s Oncology Liaison Nurse at Our Lady’s Children’s Hospital for 12 years.
- Together with Laura Lynn, Ireland’s Children’s Hospice, we undertook two assessments of the respite needs of children with life-limiting conditions initially in the North-East and Midlands (2011), followed by a national respite needs assessment published in March 2013.
- Funding a night nursing service which helps families keep a loved one in the final stage of illness at home until the end. Here, you can find out more about Nurses for Night Care.
Key areas of work which we are currently involved in include:
The National Strategic Advisory Group for Children’s Palliative Care
In 2009, the Department of Health published a national policy for children’s palliative care in Ireland. This policy set out the vision and framework for the development of services for children with a life-limiting condition and their families.
The National Development Committee for Children’s Palliative Care was established by the HSE in 2010. The NDC oversees the implementation of the recommendations contained within government policy on children’s palliative care through collaborative action.
The purpose of this committee is:
- to oversee the implementation of national policy recommendations.
- To demonstrate leadership by working strategically to improve children’s palliative care services.
The National Development Committee is now the National Strategic Advisory Group for Children’s Palliative Care which is a collaborative advisory group. Irish Hospice Foundation have sat on this Advisory Group since the beginning. The chairs are appointed by the HSE and the co-chair role is rotated, in the past Irish Hospice Foundation have chaired this group. A broad range of statutory and voluntary organisations as well as bereaved parents are represented on the advisory group.
Hospice Friendly Hospital’s Paediatric Network
Our Hospice Friendly Hospitals Programme (HFH) in partnership with the HSE is working to ensure end-of-life, palliative and bereavement care are central to the everyday business of hospitals.
The HFH Programme coordinates national networks to promote quality improvements in end-of-life care. The aim of this network is to share information and best practice learning, offer peer support and self-care to staff and support advocacy for improvements in end-of-life care and bereavement services across paediatric hospitals, units and services nationally.
We aim for this to be a collaborative network and we hope to partner with paediatric hospitals, units and service providers on future networks.
Irish Childhood Bereavement
Collectively, the network shares a vision that all children and young people, together with the adults in their lives, can easily access a choice of high quality local and national information, guidance and support to enable them to manage the impact of death on their lives.