Catherine Murphy (Kildare North, Independent) | Oireachtas source

-----but we all know that the changes will mean nothing if they do not make a serious difference in people's lives, not least in terms of health care. The recent focus on failures in that sector has been on the medical card fiasco, but there are other system failures and they do not all have to do with money.

I wish to highlight the plight of Shay and Finn Guihen, who were born with the rare Pfeiffer syndrome and whose parents, Denise and Dermot, are in the Gallery. I have given the Taoiseach a background note on the case. One year ago, a 24-seven home care package was agreed that enabled the then 18 month old twins to leave Temple Street hospital for home last October. Their care was outsourced to a nursing agency and, from the first week, there were problems. It was hit or miss and resulted in the twins being admitted to the LauraLynn Children's Hospice for eight weeks until a care package could be provided. Five months later, there is still no sight of a care package and the parents have not been included in the process in any meaningful way.

Everyday, this couple faces the joy and sorrow of being these two boys' parents. The joy is found in how their parents have been astonished by their progress - they can see and hear, have normal intelligence, clap their hands, wave and pick out their favourite toys. These little guys have between them survived 21 operations to date. They look different, they have shunts in their brains and their breathing is being aided by tracheostomies. The parents' sorrow stems from the fact that their children's lives will be limited. While there is a limit on the time they live, there should not and must not be a limit on the quality of their lives. It is a nightmare for any parent to face the prospect of losing a child, but Denise and Dermot are facing the prospect of losing both of theirs.

This is a question of the management and control of the home care package. It cannot be hit or miss. There must be continuity of care. This is not an issue of money, but of how the process is managed for these two little kids. Will the Taoiseach intervene to try to get a solution so that they can go home to where they are happiest? Will he undertake to review home care packages? Flexibility is great in some cases, but in others it is not and continuity of care is required in this case. If necessary, a few people could be recruited to provide that service, which is critical to the lives of a small number.

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