We need your help now

Support from readers like you keeps The Journal open.

You are visiting us because we have something you value. Independent, unbiased news that tells the truth. Advertising revenue goes some way to support our mission, but this year it has not been enough.

If you've seen value in our reporting, please contribute what you can, so we can continue to produce accurate and meaningful journalism. For everyone who needs it.


Call for national fund for children with life-limiting conditions

Deputy Denis Naughten said that such a fund could reduce the cost of care per child by €24,000 per year.

A NATIONAL FUND for sick children could save over €24,000 in the cost of care per child each year, a TD has said.

Currently, the Health Service Executive (HSE) spends in excess of €47,000 per year to provide home respite for children with life-limiting conditions.

An estimated 1,400 children are living with life-limiting conditions in Ireland, and about 350 die from such a condition each year.

A new study jointly funded by LauraLynn, Ireland’s Children’s Hospice, and the Irish Hospice Foundation (IHF), Respite Services for Children with Life-limiting Conditions and their Families in Ireland shows that service deficits exist and families face challenges in accessing respite care.

Deputy Denis Naughten said that the report shows that both in-patient and community respite services can be provided for approximately €24,000 per child per annum. He has now called for a national fund to be set up.

The report found that access to respite is often dependent on the geographic location of the child and their diagnosis. It also estimated that up to €7.6m was needed to provide respite care for about 812 children, and €8.62m would be required to cater for 925 children by 2021 – this works out as an average of less than €10,000 per child being invested in respite services.


It suggests a number of key actions:

  • The National Development Committee for Children’s Palliative Care should oversee the development of national standards for the provision of respite care, promote understanding of terminology and examine the feasibility of developing an assessment tool for respite services
  • Each HSE region should set up a regional group to map existing local respite services, identify family needs and plan for future provision
  • Health services should work with regional respite service providers when out-of-the-home respite is needed
  • The education and ongoing support needs of organisations providing respite should be considered
  • A national needs assessment should be repeated in 2017.

The report was welcomed by the Minister for Children and Youth Affairs, Frances Fitzgerald TD.

Dr Ciaran Browne, National Lead for Acute Hospital Services and Palliative Care, HSE, said that the National Development Committee for Children’s Palliative Care will oversee the implementation of the recommendations of this report.

National Fund

Deputy Naughten said that what is needed is to ring-fence the HSE money that is spent on children with a life-limiting condition and centralise this into a single national fund.

He said such a fund would ensure consistency of care for children throughout the country, and would also reduce the administrative burden and cost placed on individual PCCC offices in dealing with urgent and crisis situations as they arise.

In a letter to Health Minister James Reilly, he called on him to establish a national home care budget for children with life-limiting conditions.

Read: Government to launch needs assessment of respite services for children>

Your Voice
Readers Comments
    Submit a report
    Please help us understand how this comment violates our community guidelines.
    Thank you for the feedback
    Your feedback has been sent to our team for review.