'Postcode lottery' for respite care
Terminally ill children in need of respite care are sometimes subject to a postcode lottery when it comes to accessing the service, a new report has found.
Children's Minister Frances Fitzgerald has called for the Health Service Executive (HSE) to set up regional groups to identify which parts of the country are poorly resourced.
"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," Ms Fitzgerald said. The minister has urged that recommendations in the report be implemented.
"I welcome the collaboration between the voluntary sector and the HSE in producing this report which sets out very clear steps that need to be taken in developing a responsive, child friendly and flexible respite service for children with life-limiting conditions," she said.
The report found that access to respite care often depends on where the child lives and their diagnosis, meaning some families face tough challenges in accessing it.
The study - entitled Respite Services for Children with Life-Limiting Conditions and their Families in Ireland - estimated that around 7.6 million euro a year is needed to care for about 812 children.
There are approximately 1,400 children in Ireland living with a terminal condition and about 350 such youngsters are likely to die each year. The report estimated that around 8.62 million euro would be required to care for 925 children by 202 - on average less than 10,000 euro per child being invested in respite services.
Children's Hospice LauraLynn and the Irish Hospice Foundation jointly funded the study, which made a string of recommendations.
It suggested that the National Development Committee for Children's Palliative Care should develop a set of national standards for respite services and consider developing a way to assess patients' needs for such care.
It also recommended the establishment of regional groups to map existing local services, to identify family needs to plan for future provision. The report called for another assessment of the nation's needs to be carried out in 2017.