Billy Kelleher (Cork North Central, Fianna Fail) | Oireachtas source

I do not know where to start because normally when we speak about the end of life, we speak about people who are older than us. In this case, we are talking about the other end of the scale. Everyone in this room appreciates the considerable work done voluntarily and with the children's hospitals and various specialists in trying to deliver as much care as possible for children at the end of life.

We talk about primary care, community care, care in the home and providing care and medical attention in the least expensive way. I find that it is difficult to obtain home care packages. When the HSE is making decisions on such packages, the child may be in Crumlin, Temple Street or elsewhere and the money may be coming from a local division's budget, thus leading to a reluctance to provide the package.

If the child is in Temple Street Hospital or Crumlin children's hospital, the money for a home care package comes out of a different budget. There is not enough money in the regions or the HSE divisions so it is passed back to the hospitals. That issue must be examined. It is an administrative issue but one which causes great grief to families. In fact, two cases from County Laois have been brought to my attention in recent days, where the children are in a children's hospital in Dublin and the HSE will not provide home care packages for them. The HSE is arguing that it does not have enough money left in the budget for that particular geographic area. The possibility of interlinking hospitals and home care packages on a national basis should be examined. If the aforementioned children were able to go home, it would save the State money. It would cost the HSE less in the long run, as well as freeing up beds in the acute hospitals for other children who badly need them. This is just an observation of mine but I believe we should all pursue this matter with the HSE and the Government.

Palliative care is a specialty whose development is ongoing in this country. Recent years have seen enormous changes in how we view palliative care and how it is provided. In that context, what professional specialties are needed most to deliver high-quality paediatric palliative care in the home setting? Is there a shortage of professionals and is there a shortage of training and education programmes for such professionals?

On the question of medical cards and long-term illness, we have all dealt with cases involving children who have lost or are about to lose a discretionary medical card. When an assessment is made of a child and a consultant confirms that he or she has an end-of-life condition, a medical card should be given until the child dies and not just for a period of time. Families should not be asked to go through a reassessment or reapplication process. The current situation regarding discretionary medical cards is causing huge difficulty and trauma for families.

We alll know that parents go to extraordinary lengths to care for their sick children but some of them are physical and emotional wrecks. In the context of respite care, should a child be cared for at home by professionals or should he or she be taken from the home and cared for elsewhere? In other words, where is the best place to give respite care which will benefit the family most? What would be the ideal system for providing respite care?