Children’s Palliative Care Programme a big support for terminally-ill children

Hundreds of terminally ill children in Ireland have had their lives greatly improved by a new palliative care programme.

The Children’s Palliative Care Programme (CPCP), which included outreach nurses and training programmes, was adopted seven years ago and its impact has just been evaluated.

Lucy Greene lives with her family in Co Clare. They lost two babies, Darragh and Ronan, due to a rare disorder. Darragh died in 2008, when he was aged almost six months, and Ms Greene said there seemed to be “very little help available” to them at the time.

She made regular trips to the emergency department with her son to access medical help, as his condition deteriorated.

However, when her son Ronan was born in December 2012 with a similar neurological disorder, the family was able to access the CPCP and had a trained outreach nurse.

“Because Ronan was being properly cared for by the team, he was much more comfortable,” said Ms Greene. He died less than three months after his birth.

As of December 2015, the children’s outreach nurses service was providing help to 267 children with life-limiting conditions in Ireland. This figure stands against the statistic that about 350 children die before their 18th birthday in Ireland every year. An evaluation of the programme found the quality of life for the children had improved.

Health Minister Simon Harris launched the report yesterday, saying: “Naturally there is always room for improvement and further development, but this report is clear evidence of the progress that has been made and the real difference the introduction of these services has made to children and their families.”

Sharon Foley, CEO of the Irish Hospice Foundation (IHF), said more work needed to be done in the area. “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,” she said.