Ms Sinead Moran:

Accessing home-care packages is a significant issue for families going home. It is becoming more of an issue because the funding is not there. Unfortunately, it is not down to the people in the HSE because if they could they would give the money tomorrow. We have serious issues with medical cards, especially for children, specifically for end-of-life care going home. If the parents of a child with Edwards' syndrome wish to take the child home, they must go and register the child's birth in the registration office, one parent if they are married and both if they are not married, to access a PPS number before the child receives a medical card to access whatever medication the child needs at home. That must change specifically for those children because sometimes they are only around for 24 to 36 hours and to ask the parent to leave that child and go and do that is unheard of and unfair.

Regarding 24-hour care we are lucky because we get referrals from Crumlin or Temple Street hospitals. From Crumlin it would be from the palliative care team but it is often from the outreach nurses who are in place, and there are eight of them locally. A referral will come to Jack and Jill about a child whom they wish to send home and who requires nursing care. Recently Ms Thomas and I received a call for a little girl on a Thursday whom the parents wished to take home that day. The outreach nurse, Ms Thomas and I met the parents with the palliative care team in the hospital that day and planned what we would do about getting the family home. They went home that evening at 7 p.m. The following morning they wanted a nurse in the home and there was a nurse in the home the following morning.

It is about co-ordinating all that between us. The outreach nurse would have linked with the public health nurse, GPs and all those services. She co-ordinates all of us to come together to get these children home. We all met in the house on the Friday morning to plan what would happen for the weekend. This is the issue. We had a nurse organised for the weekend but by the weekend nobody was around. I was on-call for the weekend. The home care team in that area does not cover weekends. Unfortunately, the outreach nurses do not cover weekends. The GP had an on-call service. I did one weekend and Ms Thomas did the following weekend.

It is for those parents to have that expert at the end of the phone. It is about giving funding back to these home-care teams because they are the experts in the area, giving advice to parents on symptom management, etc. If an issue arose over the weekend I would ring the GP to guide and advise. We all work together. We meet the outreach nurses regularly, approximately once a month, to discuss the children we have, the cases and how things are going. For active palliative care for children going home we meet regularly and work out who is doing what. People do not want five or six people coming in on one day. One might go on a Monday, I might go on a Tuesday. It is about what parents need. We decide between us how it works.

One of our people recently cared for a palliative baby in Wexford and she spent much of her time in the home doing hands-on, out of hours care because, unfortunately, they did not get a nurse for that night and that child got into crisis that evening at 10:30 p.m. She stayed in the house until 6 a.m. the following day until the child died peacefully at home. That is the sort of work we do on top of everything else. I have been called out at 12.30 a.m. and that is not ideal. We cannot continue that. There are only 11 of us so we must examine getting qualified paediatric nurses in the home on top of palliative care consultants and outreach nurses. They have made such a difference to our lives over the years.

I have phoned Dr. O'Reilly from a family's home seeking help and advice and it is wonderful to have those experts, because they are the experts. It is also about training ourselves up to that expert level and having the opportunity for other nurses to avail of that and be educated and trained in palliative care and end of life. Many people still do not understand that word and are afraid of it. They think palliative care must mean the child is going to die now. A child was referred to us and they said she might live eight or nine days but she survived for three years and died on Christmas Day. The trajectories of these conditions are very diverse.

We all very much work together as a team. We meet with LauraLynn every six months. We discuss our cases and the services we both provide to try and see how we can all work together to best meet the parents' needs. We and the outreach nurses go around all the disability services, St. Michael's House, the Central Remedial Clinic, CRC, Enable Ireland and St. John of God, and we sit together with the social workers and nurses and discuss the cases and figure it out between us. We are all very much working together as a team to meet the families' needs as best we can.