Report finds Respite not available to all children with Life Limiting Illness

A major report released (13th April 2011) has found that in 11 counties of Ireland, respite care is currently not available to all families of a child with a life-limiting condition.

 Respite Services for Children with Life-Limiting Conditions and their Families.  A Needs Assessment for HSE Dublin/Mid-Leinster and HSE Dublin/North-East found that limited respite services were currently provided with access dependent on factors such as the child’s age, diagnosis, prognosis and where the child lived. 


The need for a palliative respite service for children with life-limiting conditions is projected to steadily grow over the period analysed: 2010-2021.  A range of respite care programmes, developed in a structured and coordinated way, will be required to meet the needs of 411 children currently and up to 478 children in the areas studied by 2021.  


It is estimated that the development and operation of the six forms of respite care outlined in this needs assessment will require a budget in excess of €10m per annum, rising to €12m-plus by 2021.  This assumes a 70:30 radio between in-the-home and out-of-home respite.


Prepared by Prospectus Consulting, the report was commissioned by the Children’s Sunshine Home and the Irish Hospice Foundation (IHF) and involved a broad-ranging advisory group.


The report stated that children with life-limiting conditions were usually cared for at home with their parents as their main carers.  Additional supports, including respite, were provided by statutory and voluntary care providers.  The report found a dearth of information on the provision of respite care.  It was unclear where and how services were accessed or provided. 


Children with cancer were under the care of specialist cancer services and could access some respite services.  But families of children with other conditions or without a definitive diagnosis might find accessing respite services particularly challenging. 


The importance of respite care services was recognised in the Palliative Care for Children with Life-limiting Conditions in Ireland – A National Policy, which was launched by the Department of Health & Children in March last year.  This policy provides the foundation upon which children’s palliative care services should be developed in Ireland.  One of the priorities identified in the national policy was an audit of existing respite facilities.  


Philomena Dunne, CEO of the Children’s Sunshine Home, stated: “Caring for a child with a life-limiting illness is a huge challenge for parents and siblings.  Regular respite provides temporary relief from the daily demands of care-giving and allows parents to spend time with their other children.  Families need the choice of taking up respite care inside and outside the home.  Families have a clear preference for in-the-home respite care.  But appropriate paediatric palliative care facilities and skilled staff must also be put in place as a child’s home is not always the most suitable location for care.  This report is confined to a specific geographic area but its findings are relevant for the country as a whole.” 








IHF Chairman, Michael O’Reilly, stated: “Respite care is an essential element of a comprehensive children’s palliative care service.  This fact is recognised in Ireland and internationally.   The need for respite service for children in Ireland is projected to steadily grow over the next 10 years.  Healthcare professionals often wish to refer children to respite services but the appropriate care currently does not exist.  A range of respite care programmes must be developed and delivered in a structured, flexible and responsive way.  This report provides evidence and guidance for policy makers and service providers in developing such a service.” 


Eugene Murray, CEO of the IHF, said: “A well structured respite service can reduce hospital admissions because additional community supports may prevent a child’s condition from deteriorating to the point where they have to go to hospital.  Many tests and procedures may also be completed as part of a respite programme.  By not developing a community based respite service, we are putting a significant strain on the healthcare system in general and our hospitals in particular. Value for money can be secured by restructuring existing respite provision.  Ultimately, it is in the best interests of the children and families that we offer a child-friendly, locally based and readily accessible service.”


On a national level, an estimated 1,400 children are living with life-limiting conditions in Ireland.  There are about 350 child deaths each year – the majority in the first year of life.


The report was commissioned by the Children’s Sunshine Home and the IHF.  The Children’s Sunshine Home, which will soon complete the building of LauraLynn House, offers support and care for children with life-limiting conditions and their families by providing high quality transitional care, home support, respite, crisis and end-of-life care.   The IHF is a national charity which promotes the hospice philosophy and the development of hospice care in Ireland.


The IHF has committed €2.5 million to the implementation of Palliative Care for Children with Life-limiting Conditions in Ireland – A National Policy.  Dr Mary Devins, Ireland’s first Consultant in Children’s Palliative Care, takes up her post next month.  The IHF will fund the role for the next five years.  It has also agreed that five of eight outreach nurses will be financed by the IHF for three years.  IHF has also funded courses in children’s palliative care for nurses and healthcare professionals.  Since 2007, a total of 1,399 healthcare professionals who care for children with life-limiting conditions and their families have attended the Level A programme (one-day workshop, awareness-raising). A total of 143 registered nurses/midwives have  completed the 42-hour intermediate Level B programme.


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