Mary Moran (Labour) | Oireachtas source

I echo Senator Mac Conghail's sentiments. While he was speaking I glanced around the House and it was clear that Senators from all parties were in agreement. All Senators only have the best interests of children at heart, whether they be terminally ill or have a life-threatening condition, or are in the whole of their health. We all agree on that. I echo the sentiments expressed by Senator Mac Conghail and find the situation to which he alluded very unfortunate. I read the motion tabled by the Independent Senators and initially agreed. However, I also agree with Senator Hayden in that we need to look forward.

The HSE must take a more active role in the provision of health and care for children who are terminally ill in order that people do not to have to collect mobile phones and hold coffee mornings for years on end to raise funds.

Like other speakers, I know from personal meetings I have had with the Minister of State, Deputy Lynch, whom I welcome to the House, how much she cares and how good a job she is doing. I do not envy her having to speak against this motion.

I pay tribute to the excellent work done by the Jack and Jill Children's foundation, the Irish Cancer Society and all other groups in terms of their provision down the years of nursing care and support to children with life limiting conditions. It is a fact of life in Ireland today that many families are faced with the awful reality of coming to terms with having a child who is terminally ill. The thought of this is not something anyone, in particular those of us who are parents, would want to countenance. Having to take sick children to accident and emergency departments or hospital can be a traumatic experience for children and parents. A child with a life limiting condition needs and deserves the best possible care we can provide, as do their families. I am glad so many speakers have in their contributions recognised the siblings involved rather than only the children who are ill.

In the "Wizard of Oz", Dorothy was able to get back home to Kansas by clicking together her red shoes and saying, "There's no place like home". When we are sick or upset we all long for our own bed and the familiar surroundings of home. It must surely be an added strain and stress for children and their parents to be in hospital far away from home. Many of us will have experienced the journey of visiting children in hospital far from home and all that brings with it, including having to find additional childminders, having to get time off work and so on. Being able to spend precious time at home with one's terminally ill child in the secure knowledge that all his or her needs are being met is a firm goal for everybody. It is good to know that many children are being looked after by the Jack and Jill Children's Foundation and through a range of services provided by statutory and non-statutory providers.

The Government is committed to the implementation of the policy, palliative care for children with life-limiting conditions, which was launched in 2010 and recognises that there must be an alternative to inpatient care for children who have been appropriately assessed and for whom a detailed care plan has been established, with the input of the children, where appropriate, and their parents. I agree with Senator Mac Conghail, that many interesting debates have taken place in this House since we became Members, on which there have been many views offered. It is important all viewpoints are listened to. The Seanad provides a forum for debate on important issues, which is one of the reasons we need to retain it.

Representatives of the LauraLynn House made a presentation to Joint Committee on Health and Children prior to the summer recess. One of representatives was the mother of a beautiful child who was terminally ill and in LauraLynn House. I spoke with her following that meeting. When I heard at the end of June that the little baby girl had died, I wrote to Sharon, the child's mother. I was delighted to receive a beautiful reply from her last week, which gives some indication of what parents of terminally ill children go through. I am sure she will not mind if I read a little of her letter which states:

Victoria fills every day with positivity. There is always some work to do for fundraising, someone calls or phones. She ensures that each day we have reasons to get out of bed and carry on.

While it is great that Victoria's mother and father continue to fund-raise, I do not believe care of terminally ill children should be dependent on fund-raising all the time. It is important the necessary supports are put in place. The letter goes on to say that LauraLynn House was most definitely sent by the angels to protect and care for Victoria, that she was most peaceful there and so well cared for medically, that she was also loved and that they the parents were also looked after and are still in close contact with the team. It further states that Victoria has been working her magic and fund-raising has been astonishingly successful, which makes them proud, and that they want to be there for LauraLynn as it was there for them.

Victoria was Sharon's only child. The family lived in Donegal. Her husband, who had a farm, had to give up work and sell everything in order for them to travel up and down on a daily basis from Donegal to Dublin to look after Victoria for the few months that they had her. They had to do this because the hospital in Letterkenny was not equipped to cope with Victoria. The parents also had great support from grandparents and so on. If we had in place a structure which ensured all terminally ill children were looked after all the time it would be great.