independent

Sunday 20 April 2014

Families face geographical lottery for respite care for children with terminal illnesses

FAMILIES in need of respite care to help look after a child with a terminal illness face a geographical lottery, a new report revealed today.

Although respite services are provided in all HSE areas the level of support varies and it also depends on the kind of illness the child has.

The report, Respite Services For Children with Life-Limiting Conditions and their Families in Ireland, estimated 1,400 children are living with these illnesses.

Around 350 die from the conditions annually, most of them in the first year of life.

The report was jointly funded by LauraLynn, Ireland’s Children’s Hospice and the Irish Hospice Foundation (IHF), in partnership with the Health Service Executive.

Minister for Children Frances Fitzgerald, who launched the report, said :“Under our 2010 national policy on palliative care for children with life-limiting conditions, respite care is recognised as an essential element of a comprehensive palliative care service.”

Dr Mary Devins, a consultant paediatrician with a special interest in palliative care, said: “Caring for a child with a life-limiting condition at home is 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.”

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