Press Release

Minister Andrews launches Palliative Care for Children with Life-Limiting Conditions: A National Policy

The Minister for Children and Youth Affairs, Mr. Barry Andrews TD, today launched Palliative Care for Children with Life – Limiting Conditions: A National Policy.

This policy has been developed on foot of the Palliative Care Needs Assessment for Children, which was published in 2005. The care needs assessment was undertaken by a team of researchers from U.C.D. and jointly funded by the Department of Health and Children and the Irish Hospice Foundation. The specific needs of children with life-limiting conditions requiring palliative care had been raised in the report of the National Advisory Committee on Palliative Care published by the Department of Health and Children in 2001. This Policy aims to address the issues identified in the needs assessment 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.

The Irish Hospice Foundation has agreed to seed fund the implementation of the Policy’s key recommendations for a period of 3 to 5 years at a cost of €2.25million. This involves the appointment of Ireland’s first Paediatric Palliative Care Consultant and the appointment of 8 outreach nurses to support the care of children in the home. The HSE is funding 3 of the 8 outreach nurses in the initial stage. Additionally the Irish Hospice Foundation is funding two children’s palliative care education programmes which are managed and co-ordinated by the Centre of Children’s Nurse Education at Our Lady’s Children’s Hospital, Crumlin (OLCHC). These are a Level A one-day awareness programme and a Level B seven-day continuing education programme – Caring for the Child with a Life-Limiting Condition. Both programmes have An Bord Altranais Post Registration Category 1 approval (Feb. 2010).

Speaking at the launch Minister Andrews said: ‘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 sad 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 Minister added that 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.

‘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’ continued Minister Andrews.

‘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’ concluded the Minister.

Mr. Eugene Murray, CEO of the Irish Hospice Foundation (IHF) stated that the Irish Hospice Foundation warmly welcomes the new national policy.

‘Over five years with the agreement of the Department of Health and Children and the HSE, the IHF will raise more than €2.5 million to develop a hospice home care service for children. The IHF will fund Ireland’s first Paediatric Palliative Care Consultant as well as five of eight outreach nurses in the community who will provide support and co-ordinate care to children with life-limiting illnesses at home. We will also continue to organise and fund palliative care training for nurses across a range of specialities’ stated Mr. Murray.

‘A kernel philosophy of the Irish Hospice Foundation is that hospice and palliative care should be available to everyone who requires it. We have a particular interest in the needs of children with life-limiting conditions. We believe all children, regardless of culture, geographical location or age should be able to access appropriate care. We are firmly committed to children’s needs. Through the abundant generosity of our donors we already have been able to support the establishment of the Paediatric Oncology Nursing Liaison Service and have funded Ireland’s first specialist paediatric palliative care nurse at Our Lady’s Children Hospital, Crumlin’ concluded Mr. Murray.

Read the report

In Ireland there are approximately 1400 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 from life-limiting conditions.

The specific needs of children with life-limiting conditions requiring palliative care were 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, an Irish national children’s palliative care needs assessment jointly funded by the Department of Health and Children and the Irish Hospice Foundation was undertaken by a team of researchers from University College Dublin. The “Palliative Care Needs Assessment for Children” was published in 2005.

The needs assessment represented the first step in the development of a nationwide cohesive and equitable palliative care service specifically for children and adolescents. This Policy aims to address the issues identified in the needs assessment 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.

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. Home was also the preferred location as the eventual place of death for their child. International experience has shown that there are several different models of hospice 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 for children with life-limiting conditions in Ireland, which will provide an alternative to inpatient care for children who have been appropriately assessed and for whom a detailed care plan has been established with the input of the child (where appropriate) and their parents.

This Policy provides a foundation upon which children’s palliative care services can be developed in the Republic of Ireland. It is divided into three sections. (1) The first section defines and describes palliative care for children with life-limiting conditions and draws on national and international developments in this small and highly specialised field of health care. (2) The second section describes services as they are currently provided. (3) The third section gives clear direction for the future development of palliative care for children.

Additional Information on the Children’s Palliative Care Education Programmes Funded by the Irish Hospice Foundation.

The Irish Hospice Foundation is funding two children’s palliative care education programmes which are managed and co-ordinated by the Centre of Children’s Nurse Education at Our Lady’s Children’s Hospital, Crumlin (OLCHC). These are a Level A one-day awareness programme and a Level B seven-day continuing education programme – Caring for the Child with a Life-Limiting Condition. Both programmes have An Bord Altranais Post Registration Category 1 approval (Feb. 2010).

The one day Level A awareness programme is open to all healthcare professionals who are occasionally required to provide care for children with life-limiting conditions and their families. Topics addressed include healthcare provision for these children, supporting social and psychological needs, pain and symptom assessment and management, and ethical perspectives. To date over 1,000 nurses and allied health professionals have attended this programme nationally which is delivered five times a year.

The remaining Programme dates for 2010 are:

3rd June – Claregalway Hotel, Galway

7th September – Hotel Kilmore, Cavan

2nd November – Red Cow Moran Hotel, Dublin

The seven day Level B programme is a more in-depth programme for registered nurses and midwives directly involved in caring for children with a life-limiting condition. The aim is to further develop the knowledge, skills and attitudes required to enhance each child’s quality of life through meeting his /her identified needs and to provide supportive palliative care for these children and their families. The programme is delivered four times a year and facilitated in the Centre of Children’s