Supporting the development of palliative care services for children with life-limiting conditions has been a cornerstone of our activities.
It is estimated 3,800 children In Ireland have 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.
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 continue to be developed.
Some of our successes include:
- 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.
- funding 85% of the start-up costs of the Children’s Care Programme which included a team of Children’s Outreach Nurses and Ireland’s only Paediatric Consultant specialising in Children Palliative Care.
- establishing the first ever Hospice Friendly Hospital’s Paediatric Network in 2020. The aim of this network is to share information and best practice learning, offer peer support and self-care to staff aswell as supporting advocacy for improvements in end-of-life care and bereavement services across paediatric hospitals, units and services nationally.
- campaigning for continued investment and development of children’s palliative care. We work with our partners to call on the Government to prioritise the next steps in Children’s Palliative Care programme in successive budgets.
- 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.
- 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.
- co-chairing the National Strategic Advisory Group for Children’s Palliative Care.
- commissioning the ‘Evaluation of the Children’s Palliative Care Programme‘ published in September 2016 which highlighted significant improvements in palliative care for children.
- co-funding the Irish Childhood Bereavement Network. In partnership with TÚSLA, this was founded in 2012 to act as a hub for those working with bereaved children, young people and their families.
- funding a Children’s Oncology Liaison Nurse at Our Lady’s Children’s Hospital for 12 years.