Ms Julie Ling:

I thank the committee for the opportunity to come here to speak on behalf of LauraLynn children's hospice.

It is reassuring that Dr. O'Reilly and I have very similar notes on what we are going to say this morning. That reflects the fact that we are a cohesive group. We know what is going on in children's palliative care and we know what needs to be done. The final point she made about being cohesive and working together is the way to get things done. There is a lot of goodwill and work between voluntary and statutory bodies to provide the best care for children. Unfortunately, that does not seem to be getting out there.

I am new in LauraLynn and before that I worked in research with children with life-limiting conditions. When talking to their parents it becomes very clear that we do not meet their needs. Most parents have to live with huge uncertainty. As Dr. O’Reilly mentioned, many of them have seen their child die not just once but twice and maybe ten or 15 times. Children need the same level of end-of-life care whether they die or not, and when they eventually die the parents are then left bereft and cannot believe their child has finally died. Children’s palliative care is very different from adult palliative care. We must talk more broadly than just about end-of-life care; we must talk about palliative care. I respectfully urge the committee to refocus on palliative care.

Home is the location of choice for parents for care and for the death of their child. One might wonder about the purpose of LauraLynn’s children’s hospice. Some families cannot care for their child at home and if they do they often need respite and support. That is the bit that is different from adult palliative care. The parents are often young and have other children. They need to have support in the community and to be able to have time to themselves to do things we all take for granted, such as going to Tesco and having their hair done. Those parents do not get that time. They are the primary carers, most frequently the mother. Often in these hard economic times the mother has given up work to look after her child full-time, so economics comes into play. As home is the location of choice LauraLynn Children’s Hospice is listening to what is being said. We have an inpatient unit with eight beds which was built solely from fund-raising. It cost a total of €5.5 million and it costs €2.4 million to run every year. Unlike our counterparts in adult palliative care, we receive no State funding. We provide respite care and end-of-life care, symptom control and transitional care from hospital in order to get people home. We are also looking at providing LauraLynn At Home, a hospice-at-home service that will reach out into the community and will complement the work of our colleagues at the Jack & Jill Children’s Foundation and the HSE services that exist. We hope to pilot the service next year.

We also recognise that there are simply not enough qualified staff. If we were given €5 million tomorrow, there are not enough people there with the skills to provide care. We need to grow our own - we must develop staff and put people in places to get experience. As so few children die, we need to look at ways to improve the skills of staff in caring for children. It is a very specific area of care. We have developed an education and research department and we provide courses for parents and health care professionals in experiential learning. There is a diploma in Galway to which LauraLynn Children’s Hospice has links. The way forward is to collaborate and for all of us to pull together to provide the care.

One of the recommendations of the report was to set up a national development committee. Dr. O’Reilly has brought a copy of the report with her. It is a really good blueprint for the future. If we all stick to that and work together we could have a really good palliative care service for children. The key message is that we need to work together. We need to look at end-of-life care as only one component of children’s palliative care. We need to respond to parents’ needs and develop services to meet their needs. We need to have a cohesive approach. I reiterate that the LauraLynn Children’s Hospice receives no State funding.