Speeches

Speech for Minister Andrews at the Launch of Palliative Care for Children with Life Limiting Conditions – A National Policy

I am delighted and honoured to be here today to launch this much-anticipated document ‘Palliative Care for Children with Life Limiting Conditions – A National Policy’.

Introduction

Firstly, I would like to sincerely thank and congratulate the members of the Children’s Palliative Care Working Group for their commitment, hard work and vision in progressing and developing this Policy. I would also like to thank everyone from the wider arena of service providers and users whose contribution has helped in shaping this Policy.

I want to acknowledge the contribution of the Irish Hospice Foundation towards making this policy a reality, by providing initial funding for the key medical staff necessary to get Phase 1 up and running. It is very encouraging to see developments such as this, particularly in palliative care services, where we have a solid bond between the statutory and voluntary sectors.

Palliative care services in Ireland have developed significantly with overall spending on palliative care in 2009 amounting to €79m.

Children’s Palliative Care Policy

Sadly, in Ireland today there are approximately 1,400 children living with a life-limiting condition, and in the region of 490 childhood deaths per year. Of childhood deaths due to life-limiting conditions, the majority occur in the first year of life, with approximately 350 deaths per year. Receiving news that your child has a life-limiting condition is every parent’s nightmare. The worry, fear and sadness must be overwhelming. A family living with the consequences of such news needs to know that services are in place which will enable them as a family to ‘live’ as fully and completely as possible for the time that they have together. This Policy aims to provide these services so that parents and the extended family can completely concentrate on their child’s needs and comfort, confident that the best possible care is available to them through the support of an experienced multi-disciplinary team.

The specific needs of children with life-limiting conditions requiring palliative care were initially highlighted in the ‘Report of the National Advisory Committee on Palliative Care’ published by the Department of Health and Children in 2001. Following on from that report, the “Palliative Care Needs Assessment for Children” was published in 2005 and jointly funded by the Department of Health and Children and the Irish Hospice Foundation.

A key finding of the Children’s Palliative Care Needs Assessment was that the preferred location of caring for a child with a life limiting or life threatening condition is the family home with parents receiving adequate professional support. International experience has shown that there are several different models of palliative care for children. The recommended model for children with life-limiting conditions in Ireland is ‘Hospice at Home’. This Policy supports the ‘Hospice at Home’ model of care whilst working in partnership with parents, families and other carers. Indeed, the ultimate aim of this Policy is to ensure that all children with life-limiting conditions will have the choice and opportunity to be cared for at home surrounded by their loved ones, whilst having coherent support and care provided through a multidisciplinary family-centred approach to their individual care needs.

It will also provide invaluable guidance and support to the professionals and care workers who care for these children and families. The Policy aims to put in place a governance and training framework to enable all these disciplines to provide the best service possible for the time allowed.

The Palliative Care Needs Assessment for Children also found that home was the preferred location as the eventual place of death. Having to plan for the death of a child seems so unnatural but hundreds of parents and families go through this tragic experience every year.

A document recently prepared for healthcare professionals and policy makers (by the EAPC Taskforce for Palliative Care in Children) entitled – “Palliative Care for Infants and Children and Young People – The Facts” informs us that, although palliative care is widely acknowledged as an adult service, in children the recognition and diffusion of dedicated palliative care is still at an early stage and services currently available for children with life limiting conditions and their families can be fragmented and inconsistent.

Regardless of their age, these children suffer all the clinical, psychological, ethical and spiritual aspects of incurable illness and death. However, it must be stressed that children are not ‘small adults,’ and should not be treated so; they have specific developmental, psychological, social and clinical needs that must be addressed.

This policy aims to address these issues and others identified in the Palliative Care Needs Assessment for Children in order to build a responsive service for children and their families and provide a framework within which a seamless service for children with life-limiting conditions and their families can be planned, delivered and accounted for.

Conclusion

It only remains for me to say that the development of services in line with this policy document will ultimately enhance the lives of children and adolescents living with life limiting conditions and that of their families. I believe that this policy will impact positively on the quality of life of these children and their families and that we will, no longer, have families feeling isolated and abandoned but supported and cared for. And that is something of which we should be proud.

I would like once again to congratulate all those involved in the development of this Policy.

Thank you.