Children – Palliative Care

Children with Life-Limiting conditions

Some children are born with, or develop, what is termed a ‘life-limiting condition’. This means that they have an incurable illness, often requiring special care, and, at times, they may need palliative care We estimate that there are approximately 4,000 children living with a life limiting illness in Ireland.  Sadly about 350 of these children will die each year.

Children’s palliative care

The palliative 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 The Irish Hospice Foundation has sought to ensure the needs of these children and their families are met.  For the past 10 years we have been working with the HSE and other charities to ensure services are developed.

Our vision

Our vision is that no-one will face death or bereavement without the care and support they need. Over the last 30 years one core aspect of our work is in making sure our precious children are fully supported through a life limiting condition or grief following the death of a significant person in their life.

What we have done to meet the needs of children facing death or bereavement

• Commissioned the 'Evaluation of the Children's Palliative Care Programme' published in September 2016 which highlighted 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 are part of the National Development Committee which is responsible for the implementation  Government’s national policy on children’s palliative care
• We funded 85% of the start-up costs of the Children’s Care Programme which includes 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 fund a night nursing service which helps families keep a loved one in the final stage of illness at home until the end.
• We support bereaved children/teenagers through the Irish Childhood Bereavement Network and through website bereaved.ie and our range of free bereavement literature.

• 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.

The National Development Committee 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. As recommended in the 2009 policy, the National Development Committee (NDC) for Children’s Palliative Care was established by the Health Service Executive in 2010. 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 chair is appointed by the HSE and the co-chair role is rotated – the CEO of the IHF co-chaired for a number of years. A broad range of statutory and voluntary organisations as well as bereaved parents are represented on the committee. Members work together to pool resources, knowledge and expertise. This is to ensure that services and resources are developed in a sustainable way.  The committee can be contacted for advice and information via the Chair; Ms Sheilagh Reaper-Reynolds, National Lead Palliative Care, HSE at sheilagh.reaper-reynolds@hse.ie

NDC Publications:

• Children’s Palliative Care: From policy to practice 2010–2015 April 2016

The National Development Committee for Children’s Palliative Care (NDC) was established by the Health Service Executive in 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.