HUNDREDS of children with life-limiting conditions and their families have had access to improved palliative care thanks to a national policy adopted seven years ago.
An Evaluation of the Children’s Palliative Care Programme launched by the Health Minister Simon Harris today found new initiatives like outreach nurses are “significantly enhancing” the quality of palliative care being delivered to children with life-limiting conditions across Ireland.
About 350 children die before their 18th birthday every year in Ireland. There are an estimated 3, 840 children in Ireland living with a life-limiting condition. They have an incurable illness that often requires special care and at times may need palliative care.
Palliative Care for Children with Life-Limiting Conditions – A National Policy was published by the Department of Health in 2009 to provide a framework for improving palliative care services for children and families that need them.
The Children’s Palliative Care Programme (CPCP) delivered some of the priority recommendations of this policy through three key initiatives:
- The appointment of Ireland’s first consultant paediatrician with a special interest in palliative medicine.
- Eight outreach nurses were appointed to co-ordinate care for children at home.
- 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.
These initiatives were initially 85 per cent funded by the Irish Hospice Foundation at an overall cost of €2.6 million – under an agreement with the HSE.
The independent evaluation of the CPCP commissioned by the HSE, Department of Health and Children and Irish Hospice Foundation found the new services have:
- Improved quality of life for children and their families.
- Improved co-ordination of services to children with life-limiting conditions so they can be cared for in the home setting as far as possible.
- Led to an improved children’s palliative care sector with increased education on children’s palliative care.
- Increased awareness of children’s palliative care and of the new service in both the public arena and health sector.
Developing Services for the future
Welcoming the launch of the evaluation report, Minister Simon Harris said:
“I am pleased that the outcome of this evaluation has been so positive and that the three elements of the Children’s Palliative Care Programme have been welcomed by parents, front line services and stakeholders. 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. We also need to look at how best to develop these services for the future and in light of the changing palliative care landscape, and this report will be an invaluable guide in that regard.”
Sharon Foley, The Irish Hospice Foundation (IHF) CEO said news that your child will most likely die in infancy or childhood can be overwhelming and parents often find themselves isolated and at a loss.
She said it was heartening to read appreciative comments in the report from so many parents on how the new services provided by the Children’s Palliative Care Programme have made a difference to the lives of their children and their families.
“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,” Ms Foley said.
John Hennessy HSE National Director of Primary Care said, “The report demonstrates the significant progress made on the implementation of key recommendations contained in the 2009 National policy.”
“The Children’s Palliative Care Programme has made an important contribution to ensure that parents are actively involved in decision making about the care for their child. The evidence from the report confirms the success of the Children’s Palliative Care Programme to date in improving the communications, co-ordination and the overall quality of care provided to the sickest children we care for.”
The evaluation makes twenty recommendations for action going forward and the Department of Health will be engaging with the HSE to agree the priorities and the way forward for the continuing development of Children’s Palliative Care services.