The quality of life for hundreds of children with life-limiting conditions has been significantly improved through improved access to palliative care, an evaluation study has found.
The evaluation of the children’s palliative care programme found initiatives such as the provision of outreach nurses are “significantly enhancing” the quality of palliative care delivered to children across Ireland.
About 350 children die before their 18th birthday every year in Ireland. There are an estimated 3,840 children living with a life-limiting condition. They have an incurable illness that often requires special care and at times they may need palliative care.
Lucy Greene, from Doonbeg, Co Clare, is in a unique, though unenviable, position to observe the progress made in palliative care for children. Her son Darragh, born with serious neurological abnormalities, died in hospital in April 2008, aged less than six months.
“There was very little help available to us at that time, and it quickly became hard work. We had no line in to the hospital and had to bring him in for treatment through the A&E, where they had no idea how to deal with his seizures.”
Ms Greene had two more sons and then, in December 2012, a fourth son, Ronan, was born with similar neurological malformations.
Consultant paediatrician
In the interim, the Department of Health had published a national policy on palliative care in 2009 to provide a framework for improving services. Under the policy, Ireland’s first consultant paediatrician with a special interest in palliative medicine was appointed, as were eight outreach nurses to co-ordinate care for children at home.
In addition, a paediatric palliative care education and training programme for healthcare staff was developed to improve the capacity of staff supporting children with life-limiting illnesses.
As a result, Ronan’s family had access to a children’s outreach nurse trained in palliative care as their first point of call. They were able to care for him at home, avoiding the stresses of hospital visits. “Because Ronan was being properly cared for by the team he was much more comfortable,” Ms Greene says.
Although he too died before six months, the benefits of palliative care were lasting, she says. “We had such great memories. There was none of the panic we had with our first boy. Ronan was never hungry and his suffering was reduced to a minimum.”
The programme was initially 85 per cent funded by the Irish Hospice Foundation at an overall cost of €2.6 million, under an agreement with the Health Service Executive.
Quality of life
The evaluation found the new services improved quality of life for children and their families, and improved co-ordination of services. It also led to increased education on children’s palliative care and increased awareness of the service.
Minister for Health Simon Harris said he was pleased the outcome of the evaluation had been so positive. "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. We need to look at how best to develop these services for the future and in light of the changing palliative care landscape."
Sharon Foley, chief executive of the Irish Hospice Foundation, said there are still some parts of the country where parents are waiting for services and areas where existing services are overstretched.
