Seán Ó Fearghaíl (Kildare South, Fianna Fail)
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Táim buíoch, mar is gnách, don Cheann Comhairle as ucht an t-ábhar fíor-thábhachtach seo a roghnú inniu. Baineann sé le páistí óga a bhfuil bás luath i ndán dóibh.

There are 1,400 children in Ireland today with life-limiting conditions. About 350 such children die each year and most of these young lives are limited to less than one year. The majority of their parents would, of course, wish to care for their children at home. The policy document on palliative care for children with life-limiting conditions was published in 2010 by the Department of Health. On Monday of this week the Irish Hospice Foundation and the Children's Sunshine Home published a needs assessment for the HSE's Dublin mid-Leinster and Dublin north east areas. This assessment was done to assist with the 2010 document's recommendation that a comprehensive children's palliative care service needs to operate within a co-operative model with close liaison between all stakeholders and relevant service providers. Another key recommendation was to set up a national development committee for children's palliative care.

Respite is naturally a major part of care for many children with life-limiting conditions and their families. With this in mind, the 2010 document recommended that a range of respite services should be developed for children with life-limiting conditions who have palliative care needs. It further recommended that hospice-at-home teams would be developed by the HSE, that inpatient hospice beds specifically for respite should be developed as part of the children's palliative care service and that each HSE administrative area should plan and develop respite facilities for children with life-limiting conditions and their families. One of the priorities identified in the national policy was an audit of existing respite facilities and the Children's Sunshine Home and the Irish Hospice Foundation set out to identify existing services and to assess current and future need within the two administrative areas referred to earlier. The assessment found that the provision of respite care services varies both between the two HSE administrative areas under study and that it is not available in either area to all families with a child with life-limiting illnesses. Limited in-the-home and out-of-home services are provided, often supported by a combination of voluntary and statutory funding. Some services are diagnosis dependent or age dependent, that is, confined to babies or very young children. Families whose children do not have a definitive diagnosis may find access to respite particularly challenging and it is likely that the voluntary sector will continue to be the key service provider. Currently, for example, the Jack and Jill Foundation provides respite services to 126 children in the two areas studied.

The assessment finds that the need for a palliative respite service for children with life-limiting conditions is projected to steadily grow over the period to 2021. It also points out that a range of respite care programmes, developed in a structured and co-ordinated way, will be required to meet the needs of 411 children currently, and up to 478 children by 2021 in the areas studied. Furthermore, it is estimated that the development and operation of the six forms of respite care outlined in the study will require a budget in excess of €10 million per annum, rising to €12 million plus by 2021, assuming a 70-30 ratio between in-the-home and out-of-home respite care. It goes without saying that providing care of this nature to a child with a life-limiting condition at home can be physically and emotionally demanding.

I look forward to the Minister of State's response.

Alex White (Dublin South, Labour)
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I thank Deputy Ó Fearghaíl for raising this issue. He has given a very good account of the issue and the background to this important matter.

In 2010, the Department of Health published Palliative Care for Children with Life-limiting Conditions in Ireland - a National Policy, which provides the foundation and sets out clear direction for the development of an integrated palliative care service for children and their families across all care settings.

Following on from the publication of the policy, the National Development Committee for Children's Palliative Care, NDC, was established by the HSE. The committee is co-chaired by the HSE and the Irish Hospice Foundation and includes a representative from the Department of Health. The committee has overall responsibility for overseeing the implementation of the national policy recommendations. The committee's emphasis on partnership is reflected in its membership comprising statutory, voluntary, professional, and parent involvement.

The NDC agreed that an assessment should be undertaken in HSE south and HSE west to complete the national picture following an earlier exercise in two HSE regions, Dublin north east and Dublin mid-Leinster, which examined respite care for children with life-limiting conditions. The Irish Hospice Foundation and LauraLynn, Ireland's children's hospice, in partnership with the HSE published the report, entitled Respite Services for Children with Life-limiting Conditions and their Families in Ireland - A Needs Assessment, on 4 March 2013. The report provides a national overview of service provision and future respite requirements as part of a palliative care service for children in Ireland.

The report identifies some of the challenges involved in planning for respite care such as difficulties with definitions and terminology; determining the numbers of children who require respite care and the numbers currently availing of services; the extent and location of current service provision; and the perhaps at times unnecessary distinction between disability services and palliative care. As the report highlights, most families prefer to be able to care for their child at home. In order to be able to do so, adequate support systems need to be in place and this includes the availability of a high standard of respite care provided both in the child's home and also out-of-home, in an appropriate residential setting or respite unit. The report provides an indication of what is currently available and what is required at a national level to provide for the respite needs of children and families. The report acknowledges that a significant level of respite support is already being provided but access is inconsistent around the country and can be dependent, as Deputy Ó Fearghaíl pointed out, on diagnosis and-or geographic location.

The report will assist the Department of Health and the NDC in planning for the respite needs of children with life-limiting conditions and is a useful contribution to filling in the gaps in the understanding and knowledge of the way respite services for children are organised. A number of the recommendations in the report are already under consideration by the NDC and the committee has undertaken to examine all of the recommendations through its ongoing programme of work.

My Department will be maintaining a close liaison with the HSE and the NDC in this context.

Seán Ó Fearghaíl (Kildare South, Fianna Fail)
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I thank the Minister of State for being here and for responding to the issue. When we embarked on the course of adapting the working day of the Dáil to include Topical Issues, very strong commitments were given that we would have the responsible Ministers here. I commend the Minister of State on the job he has done in the Department of Health but I have listened for many years to very strong statements being made by the Minister, Deputy Reilly, about palliative care and services for children in need in particular. Nothing in the report and the response given today would give me or any of the hundreds of parents across the country reason to be confident that the Government will be in a position to deliver the required services. I am talking about the critical respite area, which allows parents who are caring for children 24 hours a day, seven days a week, some opportunity to take time out or recharge their batteries before returning to the loving task of caring for a child who will not see adulthood.

The moneys involved and identified in the report are substantial but there is no indication, either from the Minister of State or in the report provided to him, that the Government is prepared to provide any additional funding. We have all engaged with organisations such as LauraLynn and, in particular, the Jack and Jill Foundation, and we know they are absolutely cash-starved. Mr. Jonathan Irwin is in his seventies and is currently quite ill but he is a pioneer, stepping into the role of the State in providing services that would not otherwise be provided for hundreds of children around the country. It behoves all of us in this House to move mountains to ensure that the funding necessary to support these families is found somewhere in an urgent fashion.

Alex White (Dublin South, Labour)
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The Deputy is perhaps being just a little unfair in his comments on the response. The report is very useful and important and I agree with the Deputy in that regard. I indicated to the House earlier that a number of the recommendations were already under consideration by the national development committee, which has undertaken to examine all the recommendations. The report was published three days ago and perhaps it would behove all of us to take a little time to consider the various recommendations.

Nobody can disagree with the general thrust of the Deputy's comments on the importance of maintaining - and, if possible, increasing and enhancing - the level of funding and support, ensuring that services are standardised nationwide. That is one of the issues coming from the report. There are other recommendations which are extremely important and close attention will be paid to them. I have no doubt that the Department and my colleague, the Minister of State, Deputy Kathleen Lynch, will follow through. It is an important addition to the stock of knowledge, information and expertise available in this important area.

I assert again that the Government, the Department of Health and the Minister, in particular, have made every effort to maintain an adequate level of funding for this important area at a time of extremely difficult financial constraint. That has borne fruit.