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 calling on a review of recommendations for service provision within the National Children’s Palliative Care Policy.
In a letter written on behalf of the HSE National Development Committee for Children’s Palliative Care and published in the Irish Medical Journal earlier this year, it was stated that the realisation of a three-fold increase on original estimates has “significant implications for service provision and workforce planning” in Ireland.
It was further stated in the letter that 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 population. 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 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 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 underestimate. 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, signed by Dr. Julie Ling, Dr. Joanne Balfe and Claire Quinn of LauraLynn Children’s Hospice; Dr Maeve O’Reilly and Dr Mary Devins, Departments of Palliative Care and Paediatrics, Our Lady’s Children’s Hospital Crumlin (OLCHC), on behalf of the HSE National Development Committee for Children’s Palliative Care can be viewed here.
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