The provision of respite care for children with life-limiting conditions often depends on where the family lives rather than on need, according to a report published yesterday.
An estimated €7.6 million a year is required to provide respite care for more than 800 children with life-limiting conditions, according to a national needs assessment launched by the Minister for Children and Youth Affairs, Frances Fitzgerald. This is projected to rise to €8.62 million for 925 children a year by 2021.
Some 1,400 children are living with life-limiting conditions in Ireland and about 350 die each year – the majority in the first year of life. Appropriate respite services are not available to all who need them.
The report found that access depends not only on where the child and family live, but also on other criteria such as the child’s age, diagnosis and prognosis. It notes that “families whose child does not have a definitive diagnosis may find access to respite particularly challenging”. Respite care, both within and outside the home, is recognised as an essential element of a palliative care service, said consultant paediatrician Dr Mary Devins.
It offers parents “time out” from the emotional and physical demands of caring for a child at home. UK research suggests a well-structured respite service reduces hospital admissions.
The report, which looks at respite care in all four Health Service Executive regions, was jointly funded by LauraLynn, Ireland’s Children’s Hospice and the Irish Hospice Foundation, in partnership with the HSE.
The piecemeal nature of respite services and lack of information available means it is unable to put a figure on current funding in this area.
Its recommendations include the development of national standards for the provision of respite care and the setting up of a group in each HSE region to map existing services, identify family needs and plan for the future.
