Paschal Mooney (Fianna Fail) | Oireachtas source

This is a difficult motion to debate. The sensitivities surrounding it are such that anybody who contributes must be aware of the human suffering and heart-break behind it. I suggest it not only applies to those parents with terminally ill children but to any parent, such as myself, who has a special needs child. It is an area where such parents do not want to go.

I am disappointed the Government has tabled an amendment to the motion which so comprehensively challenges of the original motion. Were I a Senator on the Government side I would probably be defending an amendment to the motion because that is the way the system works. Motions such as this are an opportunity for the Government to set out its stall, which is what it has done. However, this takes away to a large extent from the reasons the motion was tabled. The amendment is disappointing, not alone in terms of the manner in which it is worded but in that it does not offer much hope.

The Minister of State, Deputy Lynch, and I are old friends. I have great respect and admiration for what she is doing. In trying to get some context on this issue, I came across the executive summary, which is based on the 2010 report, which refers to the report of the national advisory committee on palliative care published in 2001. This highlighted the need for a review of children's palliative care services. A palliative care needs assessment for childrenwas undertaken and the results published in 2005. The findings of the needs assessment in Ireland were consistent with those undertaken in other countries.

I then undertook a search for anything the Government had said on this issue during the past 12 to 18 months and came across a parliamentary question tabled by Deputy Pádraig Mac Lochlainn and responded to by the Minister of State, Deputy Lynch, in June this year. The response of the Minister of State was exactly as I have just outlined. It offered nothing else. I cannot find anything else that indicates what the Government has done so far in terms of the recommendations made. I understand that the Minister of State, Deputy Lynch, as in the case of all Ministers, did not write the reply. However, the reply goes on to state in the second paragraph that the policy recommends that there should be hospital based specialist palliative care teams led by a consultant paediatrician with a special interest in palliative care and that palliative care services should move to the new paediatric hospital. It further states that primary care services need to be developed, including the provision of a consultant paediatrician with a special interest in palliative care, outreach nursing posts, therapy posts, hospice in the home and respite care, both at home and away from home, in each of the HSE regions and that these developments would be in line with primary care network developments.

In order to plan and develop services, data collection is required and it is envisaged that the Health Service Executive will collect information on children living with and dying from life-limiting conditions. Has the data collection process been undertaken? It would not cost anything and it would be helpful. There are figures on the approximate number of children but the executive summary in the report calls for a data collection process. Perhaps the Minister of State has a view on this issue.

I will cherry-pick some of the many recommendations in the report. A key point is that there should be locally-based children's palliative care support available at the network level. Each HSE area should develop a plan for respite facilities for children with life-limiting conditions and their families. I could not see anything to do with children on the HSE website. Maybe I was looking in the wrong place. It only referred to palliative care provision but did not specify the unique nature and needs of children with life-limiting diseases and their families. I could not find it on the website, although the Minister may respond by saying it is there. Is the HSE developing a plan for respite facilities? Is there any co-ordination in the area?

Another recommendation is that all relevant hospital and community staff should be facilitated to partake in education and training on children's palliative care. Is that being undertaken? It is in-house training and does not cost anything. Another recommendation is that all health care professionals working in palliative care should have the opportunity to engage in research. Is that happening? Is research being undertaken? It should not cost too much under current structures.

The final recommendation I will address is one to ensure that palliative care conforms to best practice, and that protocols and standards in respect of palliative care for children should be developed and should be overseen by the national development committee for children's palliative care. The national development committee could provide a national forum for the cohesive, integrated development of children's palliative care services and would address the regional administrative area variations in service provision to children with life-limiting conditions and their families. The ad hocapproach has been referred to by other speakers. Is there any progress on the provision and establishment of a national development committee for children's palliative care?