Some children with life-limiting conditions in Ireland have difficulty accessing respite services because of where they live, a new report has revealed.

According to the Irish Hospice Foundation, which published the report, an estimated 1,400 children are living with a life-limiting condition in Ireland and some 350 die every year, most in their first year of life.

The aim of respite care in such cases is to provide the child's carers - usually the family - with some time out, either to get some rest or to deal with other family issues, such as childcare and household chores.

"Frequently, parents are exhausted but desperately want to keep going. Respite care gives them strength and is an essential element of children's palliative care," the report noted.

In 2010, the Department of Health launched a national policy on palliative care for children with life-limiting conditions. It recommended the development of a range of respite service. This latest report aims to provide ‘a national overview of the current provision of and future need for respite care' for affected families.

The report notes that respite services for children with life-limiting conditions are expected to grow steadily between now and 2021.

"Families' respite care needs are dynamic, changing over time. Service plans and delivery must therefore be flexible and responsive, and respite care should be made available both within the family home and outside of it, for example in a children's hospice or respite unit," the report said.

However it found that while respite services are provided in all four HSE regions, access is often dependent on where exactly the child lives and their diagnosis.

The report states that a range of respite care programmes will be required to meet the needs of children over the coming years. It estimates that this will require a budget of €7.6 million per year currently, rising to €8.6 million per year by 2021.

The report makes a number of recommendations to ensure that all children who need it can access appropriate respite services. These include:
-The establishment of a regional group in each HSE region to map existing local respite services, identify family needs and plan for future provision
-Health services should work with regional respite services when out-of-hours respite is required
-A national needs assessment should be repeated in 2017.

According to Sharon Foley, CEO of the Hospice Foundation, the recommendations on regional groups is key.

"Many resources already exist in the regions to meet needs, but regional planning is required to develop these services strategically so as to meet the needs of all children requiring respite," she explained.

The report, Respite Services for Children with Life-Limiting Conditions and their Families in Ireland. A National Needs Assessment, was commissioned by the Hospice Foundation and LauraLynn, Ireland's Children's Hospice.

Commenting on the findings, LauraLynn CEO, Philomena Dunne, said that she hopes the 2017 needs assessment will ‘identify tangible improvements'.

"That is four years away, but we simply cannot wait until that deadline is upon us because the fact is these children simply don't have the time to wait four years for these proposals to be implemented," she added.