Terry Leyden (Fianna Fail) | Oireachtas source

I express my admiration for Senators Mary Ann O'Brien and Jillian van Turnhout who tabled this well formulated motion. They have a brought a new dimension to the Seanad and it is commendable that they tabled a motion of this nature.

I welcome the Minister of State, Deputy Kathleen Lynch.

I also welcome the representatives from the Irish Hospice Foundation and Mr. Jonathan Irwin of the Jack and Jill Children's Foundation, who played such a role in setting up that organisation because of the needs of the time and which has proved to be very satisfactory.

I was particularly struck by the details of the case in Roscommon outlined by Senator Mary Ann O'Brien. She recognised the work of the Brothers of Charity and the organisation County Roscommon Association for People with Special Needs. This is a very important funding organisation that was established some years ago and it invited the Brothers of Charity to take on the running of services in County Roscommon. They have proved to be very successful in that, providing extremely good conditions for their clients over those years. I commend them for their work and hope that Senator Mary Ann O'Brien will be successful in the case she outlined of the four year old boy in County Roscommon who is need of particular care, and not in an institution. I note the hours given by the HSE and the Jack and Jill Children's Foundation, which are welcome, although not adequate in the circumstances.

I am surprised the Government tabled an amendment to the motion; I thought the motion would be put forward as a recommendation. This is not legislation; it is a very good recommendation that outlines in detail the benefits of care in the home provided by families. The amendment patronises the organisation and is not very helpful. The line is that there is nothing that can be done. I appeal to the Minister of State because I am sure she would have the power to allow the motion to be a recommendation to the Government, "that the House calls upon the Minister for Health". It will not compel him or make any difference to the legal situation but it would be more helpful than accepting the amended motion outlining the usual stuff that comes in from the Department.

I was in that Department for a number of years and understand the situation in Hawkins House. It was not the most pleasant ministerial experience I ever had; I was glad to get out of it. I made a case to former Taoiseach Charlie Haughey when he was drawing up a new Government, telling him I wanted to get out of there. He asked me how I knew he would give me any job but I replied I wanted to get out of the Department of Health because it is a very difficult Department, with a crisis a day. The delegation of responsibility is very important and there is a tendency in the Department for the line Minister to take control of everything but there must be a balancing of power because this is a very big Department and there has been a tradition in it of difficulties in this regard. That was certainly highlighted by the Minister of State, Deputy Shortall. When Ministers of State are delegated responsibilities, there should be a clear line of demarcation.

The Fianna Fáil Members see this motion as children's rights in action and it is particularly timely in the context of the current referendum proposal. We support the concept that the State should dedicate money to set up a national programme to provide home nursing care for terminally ill children. Such a measure would be cost effective because it is estimated to be nine times more expensive to keep a child in hospital than at home. That has been clearly outlined in the statement here. It would also be consistent with the Government's own stated policy on caring for people in their own homes.

The sad reality is that approximately 490 children die in Ireland every year and an estimated 1,100 are living with a life-limiting condition. Of the 350 children who die as a result of those conditions, the majority pass away in the first year of life. The main difference between adult and paediatric palliative care is the vast majority of adults are cancer patients while children can be born with a number of congenital diseases and abnormalities that are known as life-limiting conditions. This means the child is not expected to survive to adulthood, with some only surviving for a number of weeks or months after birth. Children with palliative care needs in Ireland receive excellent treatment in paediatric hospitals but an acute setting is not always the most appropriate place for some of these children, as Senator O'Brien outlined from personal experience. She could bring that to the family in Roscommon. They want their child to come home and it is the least that could be offered to them in this regard. It is an experience no parent would ever wish for but the best one in the circumstances.

I appeal again for consensus and that the Minister of State accept the principle in the motion. If there is a vote, however, we will vote against the amendment and for the motion.