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 he or she grows. Also, many children with life-limiting illness have disabilities of different kinds, and their needs can vary greatly.
Since our beginnings, we have sought to ensure the needs of these children and their families are met. For over a decade, we have been working in partnership with the HSE and other charities to ensure services are developed.
We are working to understand and meet the needs of children and their families facing end of life and bereavement.
- 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.
- We currently fund a night nursing service which helps families keep a loved one in the final stage of illness at home until the end.
- 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.
A number of other core areas of our work in this area are listed below.
The National Development Committee
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 (NDC) 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. This document highlights the achievements, challenges and future plans for the development of children’s palliative care services in Ireland.
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 NDC is a collaborative committee. The committee chairs are appointed by the HSE and the co-chair role is rotated – our CEO Sharon Foley is currently co-chair. A broad range of statutory and voluntary organisations as well as bereaved parents are represented on the committee.
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.
To mark Bereaved Children’s Awareness Week 2020, our ICBN network hosted a special webinar for the public on Monday 23 November 2020. The theme was ‘Children express grief differently – Help them find their way’. Over 600 people participated in the event.
Hospice Friendly Hospital’s Paediatric Network
Our Hospice Friendly Hospitals Programme (HFH) in partnership with the Health Service Executive. 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.
In 2017, the HSE/ HFH Oversight Group was established to further embed the HFH programme into hospitals nationally and the work of the Oversight group is informed and responsive to the needs identified through these national Networks.
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. Our next Paediatric Network will take place on April 22nd at 11:30 – 1pm.