Dr. Maeve O'Reilly:

With regard to the question on staffing levels, as I stated in my presentation, one cannot have specialist services without specialists. Palliative care is delivered across several levels. First, there is the generalist-GP-public health nurse level. It is also delivered in hospitals among paediatricians which is often adequate for many children. One in five life-limited children should have access to a specialist service.

We have one paediatrician appointed in May 2011 and her funding, provided by the Irish Hospice Foundation, is for five years. There is no guarantee this will be taken over by the State after it expires. Simply, the State must take it over because this arrangement cannot go on indefinitely. The Irish Hospice Foundation has pump-primed many of our posts, including some of our Crumlin posts which were eventually taken over by the HSE. Funding for this area must be ring-fenced.

One consultant is not enough. We get referrals from Temple Street which has a large cohort of life-limited children. With its neurosurgical unit, it would have many children with brain tumours. For those children who are very ill and not receiving chemotherapy, there are no palliative care sessions for them there. We try to work around this to see them on a grace-and-favour basis but that is not good enough. There should be at least a second full-time paediatrician in Dublin. We do not have the numbers nationally to have paediatricians everywhere. That is not practical or realistic but there are ways around it.

For example, a community paediatrician would see many life-limited children as part of their practice and do palliative care daily. We could employ a paediatrician with four sessions in palliative medicine who could work around the country. It would be a hub and spoke model with Dublin as the hub, where the bulk of children come through, and then the spoke, specialist services around the country.

Consultants play a key role in setting up and supporting the service, as well as providing clinical leadership, research and education and other multiple roles. An outreach nurse is usually based locally because the children in question want to be at home. There is one based in each of the eight regions now. Again, five of the eight are funded by the Irish Hospice Foundation, three by the HSE. They have been coming in on a phased basis. The last were appointed just several weeks ago. These nurses make a difference on the ground for parents. I have no doubt that children are able to stay at home because of these nurses. They are providing emotional support, practical assistance, symptom control and so forth for families at home. Very importantly, they are acting as a key worker helping families to navigate the system as Jack and Jill does. For example, many of the children we would have referred would have severe brain injuries. They would need input from neurology, dietetics, ophthalmology and neonatology. The nurse would help the parents of a child in such circumstances, say in Kerry, to contact the specialist units in Crumlin. This makes a real difference on the ground.

It was never intended just to have eight nurses. That figure was meant to be a start but it is not sustainable in the long term to have one nurse serving such a large area. It can be an emotionally draining experience as it can be very isolated. Accordingly, it is structured in such a way that their governance structure is within the local paediatric unit and a paediatrician in each region acts as their champion and support to them.

We need more consultants and outreach nurses. The Department of Health policy report stated that because the only team in the country is in Crumlin, it must be expanded and enhanced. It is multidisciplinary teamwork. At the moment we have one and a half specialist nurses working with us, funded by the HSE. There are two specialists, myself and Dr. Marie Twomey, but we are adult-trained so we are not ideal. The full-time paediatrician is Dr. Mary Devins.

When someone goes on leave, we are not allowed to replace them. We have a nurse going on maternity leave now, so we will be down a post for the guts of nine months. That will impact on the service we deliver on the ground. If we want to upskill staff, they have to be released. However, we cannot release nurses from the wards because there is no one to take over from them. Even though we are offering opportunities for upskilling, it is not really there unless they can do it in their own time.

We need to have a commitment from the HSE that it will fund the existing consultant post and quickly appoint a second to help support this service. We also believe in innovative models such as having a special-interest consultant around the country to reach children more locally. That can happen in time, however, because we need to get Dublin sorted first where the bulk of the children in question pass through. Our own team at Crumlin needs to be expanded and that is where we need to focus our resources at the moment.