A report on childhood palliative services has called for more support for families providing hospice care in the home.
A palliative care needs assessment for children, launched yesterday by Minister for Health Mary Harney, found that although parents would prefer their terminally ill child to die at home, most such children die in hospital.
It also found there was inequity in the delivery of palliative care services to children with life-limiting conditions, such as congenital abnormalities.
Of the 366 children with such conditions who died in 2001, only 22 per cent died at home. However, 67 per cent of the 24 children who died of cancer in the same year died in their own home.
The report, based on the findings of a study conducted by a UCD research team, was undertaken jointly by the Department of Health and the Irish Hospice Foundation.
It found that the services to support care in the home were thought to be inadequate by many of the families surveyed and it called for a liaison worker for each child who would provide a link between the family and service-providers.
Among the problems experienced by families accessing palliative care in the home were poor communication from healthcare workers, inadequate availability of physiotherapy or occupational therapy and unavailability of adequate pain relief and symptom control at home.
The report recommended that specialist paediatric palliative care posts, homecare support initiatives and community-based care be developed as a matter of priority.
Ms Harney said that the report represented the first step in the development of a nationwide cohesive and equitable palliative care service for children and adolescents.
"We hope to implement the recommendations of this assessment over time," she said. "We need more qualified staff; there are relatively few in this area. The midlands don't have any palliative care expertise."
Asked whether she would be seeking to appoint a palliative care consultant in the midlands, she said the department supplied the funding and it was a matter for the Health Service Executive to appoint services.
She also said that if the voluntary sector could provide a service, the State's role was to act as a partner and support that.
Eugene Murray, chief executive of the Irish Hospice Foundation, said that being cared for at home diminished feelings of fear, isolation and helplessness for children, while it enabled parents to feel they had done all they possibly could for their child.
"But the burden of care takes a heavy toll, and parents are struggling to provide care with limited access to services and equipment and hidden financial costs," he said.
