There has been significant improvement in the provision of palliative care for children in Ireland, however these services are not available in all parts of the country and in other parts, they are under major pressure, a new report has found.

The report is based on an evaluation of the Children's Palliative Care Programme (CPCP) - a national policy that was adopted in 2009 with the aim of providing a framework for improving palliative care services for children.

Around 350 children die before their 18th birthday every year in Ireland and an estimated 3,840 children are currently living with a life-limiting condition. This means they have an incurable illness that often requires special care and, at times, palliative care.

Palliative care is specifically aimed at people whose conditions cannot be cured. The goal is to provide the best quality of life in the time they have left, which can be anything from days to years.

According to the report, the CPCP has delivered on some of its key recommendations through three main initiatives:
-The appointment of the country's first consultant paediatrician with a special interest in palliative care
-The appointment of eight outreach nurses to co-ordinate care for children in their own homes
-The development of a paediatric palliative care education and training programme for healthcare staff to improve the capacity of staff who are supporting children with life-limiting illnesses.

An evaluation of these services found that they have improved the quality of life for many children and their families. It also found that there is better co-ordination of services, which allows children to stay in their own homes as much as possible.

Welcoming the report, the Minister for Health, Simon Harris, said that ‘clear progress' has been made in this area. However, he acknowledged that there is ‘always room for improvement and further development'.

Also welcoming the report, Sharon Foley, the CEO of the Irish Hospice Foundation, said that families in this situation can feel very overwhelmed and isolated, so the progress that has been made in this area is positive.

"However we need to acknowledge that there are some parts of the country where parents are still waiting for these services or areas where the existing services are overstretched. The key objectives of the 2009 policy remain valid and we need to move to the next phase of development in children's palliative care and identify clear development priorities for the coming years," she said.

The report makes 20 recommendations for action going forward. To this end, the Department of Health and the HSE will be working together to agree how to proceed so that essential services for children can continue to be developed.

The evaluation of the CPCP was carried out over a two-year period and involved over 100 surveys and face-to-face interviews with affected parents, nurses and paediatricians.