Clare women drive new strategy for dying children

TWO County Clare women have played a key role in the development of a new national strategy for supporting terminally-ill children.
Claire O’Dwyer-Quinn, Ballyea, who works as a palliative care nurse specialist at the Milford Care Centre, Limerick and Dr Siobhán Gallagher, an Ennis consultant paediatrician based at the Mid-Western Regional Hospital, Limerick were part of a national working party, which drew up a ground-breaking report, Palliative Care for Children with Life-limiting Conditions in Ireland.
Claire’s daughter, Olivia, died in August 2005 following a neurological illness. It gave her a unique insight into the palliative care needs of children with life-limiting conditions.
Welcoming the publication of the blueprint developed by the Department of Health, Claire pointed out that the majority of children with terminal illnesses end up dying in hospital, even though an assessment of needs undertaken in 2005 revealed most parents wanted their child to die at home.
She said it is the first time there is recognition that children with palliative care needs have very specialist demands, which are different from adults and said this needs to be reflected in health services that are provided.
The report also recommends greater collaboration between services such as the palliative care team at Milford Hospice and the paediatric unit at the Mid-Western Regional Hospital, Limerick.
“Any parent who is told their child has a terminal illness is left trying to cope with the worst news anyone can receive.
“Time is precious and whatever time a child has left should be used to ensure they are as happy as possible in a home environment. This new policy supports the need to provide hospice-type care at home,” she said.
Dr Gallagher said the report provides a national framework for a much better palliative care service, which she hopes will be delivered for parents of children with life-limiting conditions in the Mid-West.
The Irish Hospice Foundation (IHF) has pledged to provide in the region of €2.25 million over the next three to five years to fund the cost of providing eight outreach nurses with specific training for working with children with life-limiting conditions.
The report recommends that a new consultant paediatrician with a special interest in paediatric palliative care should have dedicated rooms in the new paediatric hospital in Dublin, to provide clinical governance and guidance for existing consultant paediatricians, who don’t have any specific training in this area.
Traditionally, palliative care for children focused on children with cancer who got services from an oncology department, in association with adult paediatric care teams.
However, an increasing number of children who have serious neurological or genetic conditions, which limit their life, have to be content with the provision of services on an ad-hoc basis.
It is expected that one outreach nurse will be provided in the Mid-West and this nurse will work beside the local palliative care team.
Meanwhile, the Jack and Jill Children’s Foundation provides direct funding to families of children with brain damage who suffer severe intellectual and physical developmental delay, enabling them to purchase home respite care at a cost of over €3m annually.
Chief executive officer, Jonathan Irwin pointed out it would cost €146,000 a year to keep a child in hospital, compared to just €16,000 in their own home.
“No Clare family will wait more than four or five days without having a nurse from the charity at their doorstep once we are contacted. I think this is the worse thing to happen to any family. It shouldn’t have taken a charity to provide a service that should be provided by the State,” he said.