Dr. Maeve O'Reilly:

I thank the Chairman and all the members of the committee for the invitation to speak today. My background is in adult palliative medicine but as part of my post, 12 years ago I was asked to set up the first children's palliative care service, which I did in Crumlin. That was in response to the National Advisory Committee report recommendations that children were not like adults and needed to be addressed separately.

It is fair to say the death of a child is probably one of the greatest tragedies that can befall any family and consequences on parents, remaining siblings and the extended family can be profound. For families living with a child with a life-limiting illness, there are significant challenges on a daily basis; these are not just physical but they are emotional, psychological, financial and spiritual. At its core, children's palliative care relieves suffering for a child and improves quality of life for the child, whatever length of time he or she has. It is a focus on living rather than dying. As part of what we do we try to support families with the challenges they face daily, facilitating them in helping to make decisions, which can be difficult throughout a child's illness. We insist on co-ordination between services, hospitals and the community. End of life care for these children is just a part, albeit an important part, of what we do.

Language is important as we are talking about children with life-limiting illness. By this we mean children born with or who acquire an illness where they are unlikely to live beyond childhood or into early adulthood. Hundreds of those illnesses have been identified, ranging from incurable cancers to severe brain injury. They have in common the need for palliative care, and such care needs will fluctuate throughout an illness. Many children will be fine for much of the time and would be managed with generous palliative care by GPs and public health nurses. At times they will become unwell and need level 2 palliative care, which comes from paediatricians or local hospitals. Some of these children would need specialist palliative care services, and it is estimated that approximately one in five children with a life-limiting illness at any one time would benefit from specialist palliative care if it were available. We would like a comprehensive responsive service, which should have a broad range and depth of skills available to children to meet their needs.

It is important to understand that children are not mini-adults. In the past few weeks the committee has heard about adult palliative care and that is not directly applicable to all children. For a start there are fewer deaths, at approximately 370 life-limited deaths per year, and children often have very rare conditions, which makes care challenging for the people looking after them on the ground. Importantly, these children can live for many years, unlike adult counterparts, and they often experience episodes of deterioration. Some would say these children die several times before they reach end-of-life care, and services need to be able to respond to that intensity of need when it happens. Another big difference is that children are continuously developing physically, emotionally and cognitively, so a child who develops an illness at two would have very different needs from the same child when he or she comes to die at eight or nine. The services must be able to meet those needs.

Much work has been done and a policy outlines what we should be doing and how it should be done, along with the timeframe. That should be the blueprint for the development of services. In a nutshell, we must recognise that when we are planning our services, we cannot look at the number of deaths, as that does not reflect need. We must consider the number of children living with life-limiting illnesses, and we now know that previous estimates are a significant underestimate, with at least three times that number living with life-limiting illnesses. We need a database, which is not currently in place, although it is being worked on. Without knowing the numbers of children and where they are, it is very difficult to plan services, and we must consider how they overlap with disability services.

Human resources are key and one cannot have a specialist service without people trained to deliver care. The current outreach nurse posts and consultant - one paediatrician working full time in the country - are being 85% funded by the Irish Hospice Foundation over a five-year period. That is not sustainable in the long term and the positions must be State-funded. The service must also be expanded, as the recommendation in the report of one consultant and eight outreach nurses is only a start rather than the defining number. In the UK the recommendation is for one paediatrician in the area for every four adult physicians. We have 34 adult physicians and only one paediatrician, so we are already under-resourced in that regard. We see the need on a daily basis, with children from other children's hospitals being referred that we cannot reach. We need more consultants and outreach nurses, and must also further develop the team at Crumlin. This does not have to require much money, as staff already looking after these children can be upskilled in order to bring expertise to a desired level.

Children with life-limiting illnesses by and large wish to be cared for at home, although it is not always possible or desirable. It is what most families want but there is still inequity in the services delivered to children. Children with cancer have a more easily accessible service than that available to children with non-cancer diagnoses. We need to be able to ramp up support to those families with non-cancer diagnoses in order to help them care for the child through to end of life. We must give the families real choices, as for some of our families, home is not the desired option, and that is no fault of their own. They need a real choice of either hospital or hospice if available and if that is where they want a child's end of life care to happen. We must acknowledge that we are still heavily dependent on the voluntary sector to deliver care and we must work in collaboration to deliver a seamless service. We are working in that regard but the effort is ongoing.

Nelson Mandela stated that there can be no keener revelation of a society's soul than the way in which it treats its children. We have done much and a lot has been achieved but there is much left to do. If we focus on the Department of Health policy and stick to the guidelines and recommendations in it, we will improve the position for all our young patients and families.