Respite care for seriously ill children is now 'lottery'
FAMILIES of children with terminal conditions face a postcode lottery for respite care, according to a new report.
There are currently around 1,400 children with "life-limiting" conditions and around 350 are dying annually, most of them before they reach their first birthday.
Respite care is a lifeline for such families as it allows them to manage basic routines such as shopping or looking after their other children.
But a new report reveals the availability of care depends on where families live.
'Respite Services for Children with Life-Limiting Conditions and their Families in Ireland' was jointly funded by LauraLynn, Ireland's Children's Hospice, and the Irish Hospice Foundation (IHF), in partnership with the Health Service Executive.
It showed that while some level of service is available in all Health Service Executive (HSE) regions, it can be limited.
The report, launched by Children's Minister Frances Fitzgerald, revealed that in some areas the child's diagnosis influences the kind of service they get.
It estimated that up to €7.6m is currently needed to provide respite care for about 812 children but this will rise to €8.62m by 2021 to care for 925 cases. It means that the average cost per child would be around €10,000.
The report's recommendations include:
• The development of national standards for the provision of respite care.
• Examine if an assessment tool can be drawn up.
• The establishment of a group in each HSE region to map out local needs.
Dr Mary Devins, a paediatrician with a special interest in palliative care, said caring for a child with a life-limiting condition at home was both rewarding and challenging.
"It can be emotionally and physically demanding for the family. Respite is recognised as an essential element of a palliative care service as it offers 'time out' for caregivers who can get some rest, tend to their other children or get basic chores done.
"We must ensure that respite services within and outside the family home are flexible and responsive to the child and family needs."
Dr Ciaran Browne, National Lead for Acute Hospital Services and Palliative Care in the HSE, said the National Development Committee for Children's Palliative Care would oversee the implementation of the recommendations of the report.
LauraLynn chief executive Philomena Dunne described the report as a "hugely welcome blueprint for how we can improve service provision for the children and families in our care".