Mary Ann O'Brien (Independent) | Oireachtas source

I welcome the Minister of State to the House and thank Senators O'Donnell and Norris for tabling this motion. I am naturally going to focus on the sad story of end-of-life care for young children because I represent the Jack and Jill Foundation, which was set up in 1997 to provide specialist care to children with life-limiting conditions. It is a nationwide service serving the Twenty-six Counties. We have a very simple model with eleven wonderful specialist paediatric liaison nurses who come to the maternity unit or the home of the family with the sick child. They help source nurses in the area to get to know and liaise with the family, to care for the child, and to help the parents and the other children cope with the situation at home.

Previous speakers have said that 80% of adults want to die at home, but sadly, 76% do not die at home. Parents have the exact same wish for their children. In most cases they want their children to die at home, although in some cases parents do not feel they can cope with that. I am very proud of the wonderful mummy who built the LauraLynn Hospice in South Dublin. There is also the Irish Hospice Foundation. I hope that in the spirit of good governance these three charities will begin to collaborate. They each have different strengths and different ways of working. We could gather our collective knowledge and experiences and develop good strategy and practice. This is an area of increasing learning and continual striving for excellence. Those parents need commitment, love, dignity and control to create the relationship within the family between the baby or the little girl or boy and the other siblings, to make it as happy and special a time as it can possibly be.

The Jack and Jill Foundation does not have a waiting list. Nursing care can be provided within 24 hours. We do not care if it is Saturday night or Sunday morning. We are a small organisation but we stretch all over the country. We create a relationship with the family, staying with it for a year or more after the child or baby dies. We run bereavement counselling once a year. We try to bring together all the parents who have lost children because, while we might think we are experts in counselling them, they counsel each other just by sharing.

We have raised over €50 million, of which the Minister of State has very kindly given us just under €5 million. We need a lot more money. We need to ring-fence money so that people with children who are going to die can have 24-hour nursing care in their homes. We are funding four Jack and Jill liaison nurses to undertake a master's level qualification in children and young people's palliative and complex care at Coventry University. All of the nurses need that education. We have to bring ourselves to the next level.

It may sound strange to bring up medical cards, but we must roll out the red carpet for these children, not red tape. Our nurses spend a lot of time on the phone with the HSE and the public servants fighting on behalf of these children and their parents, trying to get a medical card for someone who is checking a child out of hospital, who might have a month or six months to live. I leave that thought with the Minister of State.