Ms Julie Ling:

I was delighted to be asked a question about respite because I have just finished a PhD on it. Speaking to the parents about their respite needs, I noted parents want to care for their child at home. They do not want to send them to an institution. If they do, then they want to go with them which means their other children are at home with no one to care for them. The parents are usually sleep-deprived. It is the mothers providing the majority of this care. Parents want care provided by people they can trust and who can demonstrate they have the skills to provide the same level of care the parents themselves provide. If the HSE were to provide that care, it then goes back to the whole point about having the right nurses, training them and upskilling them.

On the question as to where our nurses are going, they are leaving because there is an embargo on recruitment and they cannot get jobs here. Now we have a shortage of children nurses. Existing staff cannot be released to do study leave. There are about 4,000 children with a life-limiting condition which is a much higher figure than was contained in our initial needs assessment report. Accordingly, there are very few people with a significant amount of skills. We need to work together with nurses from LauraLynn working with nurses from Jack and Jill. We need to have a seamless service while developing all our skills.

That would be really important.

Community health services in Ireland for everybody are rubbish. One cannot get the support one needs. When one talks about it being cheaper to care for people at home, it is not if one does it properly. We constantly compare our children's palliative care services to those in the UK. We look to them for figures and how to provide care. They have paediatric nurses in the community. We have nothing like that and we are constantly filling gaps because we do not have well-developed community services.

I have very frequently heard Professor Charles Normand make the economic argument that home care is cheaper. Sometimes, if one does that very well it is not cheaper, but it is much better for people and keeps them out of acute hospitals. Yesterday I was talking to nurses in Crumlin hospital. They had two children who needed to be discharged but there was no way to get them out. They were in an oncology ward, with queues of people waiting to come to have curative treatment. These are the real, true, gritty issues people need to address and that is not happening. I am off my soapbox now.

We need funding. LauraLynn is no further forward. We are completely funded by voluntary fund-raising and have a great fund-raising department, which the members and everyone in the Gallery will have noticed. We fund-raise very vigorously. If we want to start providing services and care in the community where parents want it, we will continue with our campaign but we hope to get some statutory funding too. We are a very small specialty and we must all work together in line with policy. With support we can get there and have a really brilliant children's palliative care service in this country.