Call for review of National Children’s Palliative Care Policy

31 Mar
2015

Their has been a call for a review of National Children’s Palliative Care Policy as new figures reveal a three-fold increase in Irish children with a life-limiting condition

  • True prevalence of children living with life-limiting conditions is 3,840, according to new data
  • LauraLynn Children’s Hospice, Our Lady’s Children’s Hospital Crumlin, Jack & Jill Foundation and Irish Hospice Foundation call for review of service delivery priorities for the National Children’s Palliative Care Policy in light of new figures

Tuesday 31 March 2015: New figures reveal that the number of children in Ireland living with life limiting illness is 3,840, almost three times the number previously estimated. The figures which are contained in a letter written on behalf of the HSE National Development Committee for Children’s Palliative Care appears in the latest edition of the Irish Medical Journal (Vol 108 -30 March 2015).

With the true prevalence figures of children living with life-limiting conditions higher than originally thought, professionals in LauraLynn Children’s Hospice, Our Lady’s Children’s Hospital Crumlin, Jack & Jill Foundation and the Irish Hospice Foundation are now calling on a review of recommendations for service provision within the National Children’s Palliative Care Policy.

The Irish Medical Journal letter, which calls for the need to establish accurate prevalence figures for children living with life-limiting conditions, was signed by Dr. Julie Ling,  Dr. Joanne Balfe and Claire Quinn of LauraLynn Children’s Hospice; Dr Maeve O’Reillyi and Dr Mary Devinsii, Departments of iPalliative Care and iiPaediatrics, Our Lady’s Children’s Hospital Crumlin (OLCHC), on behalf of the HSE National Development Committee for Children’s Palliative Care.

The letter states that the realisation of a three-fold increase on original estimates has “significant implications for service provision and workforce planning” in Ireland.  It says, “the national children’s palliative care policy is widely viewed as the blueprint for the future development of children’s palliative care in Ireland. In light of these findings the priorities inherent in this document may need to be reviewed as the implications of this new significant increase in the prevalence of children with life-limiting conditions requires timely consideration by service planners, care providers and policy makers alike.”

Dr. Mary Devins, Ireland’s only Consultant Paediatrician with a Special Interest in Paediatric Palliative Medicine, said, “Children’s palliative care is a new and evolving specialty. In common with other countries internationally, Ireland does not have a national database for children with life-limiting conditions. Figures for the palliative care needs assessment for children in Ireland published in 2005 had been extrapolated from UK prevalence statistics. The UK at that time reported a prevalence rate of 12:10,000 child population1. Applying this ratio to Irish census data the researchers estimated 1,369 children were living with a life-limiting condition in Ireland”. However, recent research published in the UK suggests, as was suspected, that the true prevalence of children living with a life-limiting condition is in fact much higher with a rate of at least 32:10,000 child population and may be as high as 44:10,000. Based on this new UK data, application of the 32:10,000 figure to the most recent population statistics from the CSO 2 suggests that there is likely to be as many as 3,840 children in Ireland living with a life-limiting condition”.

It is clear from both the updated national and international data that the original figure of 1,369 children living with a life-limiting condition is a significant underestimate3. With the emergence of the new estimated prevalence, we must take time to review how best we implement our national policy with these increased figures in mind” added Dr. Devins.

Sharon Foley, CEO Irish Hospice Foundation: “With only one Consultant Paediatrician with a special interest in paediatric palliative medicine in Ireland and only eight Children’s Outreach Nurses, there is a considerable shortage of resources given the true prevalence figures. These nurses act as liaison between hospitals, healthcare professionals and parents, enabling seriously ill children to be cared for at home. Many more nurses are needed as due to regional inequities where you live in Ireland currently dictates whether you can avail of this invaluable service.”.

The full letter entitled, Children with life-limiting conditions: establishing accurate prevalence figures, from Dr. Julie Ling, Dr. Joanne Balfe, Claire Quinn, Dr. Maeve O’Reilly and Dr. Mary Devins was published in the Irish Medical Journal on Monday 30th March and is available to view here.

References 

  1. Association for Children with Life-threatening or terminal Conditions and their families (ACT) and the Royal College of Paediatrics and Child Health (RCPCH) (2003) A guide to the development of children’s palliative care services: Report of the Joint Working Party (2nd Edition), Bristol: ACT  and  London: RCPCH, UK
  2. CSO (Central Statistics Office) (2011)   CSO.ie/Quick Tables.  Accessed 16th June 2014
  3. Department of Health and Children/Irish Hospice Foundation (2005) A Palliative Care Needs Assessment for Children.  Stationery Office: Dublin
  4. Department of Health and Children (2010) Palliative Care for Children with Life-Limiting Conditions in Ireland – A National Policy. Stationery Office: Dublin

Further Information:  Claire Quinn E: claire@lauralynn.ie

< Back to News

Get Involved!

Talk to us at LauraLynn