Michael Lowry (Tipperary, Independent)
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It has taken the heart-breaking case of a seven-year-old boy to bring the need for paediatric palliative care in the south-east region into focus. Last week, I raised the circumstances surrounding the wish of this little boy to return home, as well as his family's efforts to bring him home from hospital to receive end-of-life care. His parents wanted their little man to be in the familiar surroundings of his home, to be with his two brothers and to have precious time surrounded by those he loves and with those who love and cherish him.

Last January, in response to parliamentary question from Deputy Cullinane, HSE south east community healthcare officials wrote “there are a range of services available to support children with palliative care needs ... in the HSE SE region”. The fact is that when this family reached out to avail of that proposed service, they were told that it is not available to them. The reason they were given is that these services are not in place in the area in which they live. They were told that such a vital service has not been available in south Tipperary since 2017. In that same response to which I refer, HSE south east outlined in impressive terms what a paediatric palliative care service provides. The letter refers to primary and social care that is tailored to meet the specific needs of each child. It also refers to a model of care for children having been developed to support children with life-limiting conditions in their own homes. It emphasised that the South/South West Hospital Group and the south east community healthcare group had supported the recruitment of staff to fill additional posts, including a paediatrician with an interest in palliative care, and an expanded outreach nursing service.

Can the Minister of State explain where this service was when it was needed? No family should be forced to publicly plead for palliative care for their child. I would like to know why this happened. I want an honest and straightforward explanation. More important is what the family needs at this time, namely, a solid guarantee that what happened to it will never happen to any other family. Glorified descriptions of what a paediatric palliative care service should provide is cold comfort to families who cannot get that care for their children when it is needed. This is care that a seriously ill child needs and is entitled to receive, regardless of their Eircode postcode.

This courageous little lad is now at home and is receiving the medical and supportive care that he requires. My contention and that of the family is that no parent should have to fight the system to obtain end-of-life care for their child. This little lad received the best possible medical, and eventually palliative, care during his lengthy stays at Children's Health Ireland in Crumlin and in the paediatric ward of Tipperary University Hospital. It is only now, at the most crucial point on his journey, that the system has failed him. Why was a palliative care service not available to this child in the area in which he lives? What is the current situation with paediatric palliative services across the south east, including in south Tipperary? Can the Minister of State say with certainty that every family who is in need of such a service will have it available to them in the future?

Mary Butler (Waterford, Fianna Fail)
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I want to thank the Deputy for raising this important issue. I want to thank him for the work he did to advocate for that family. As the Deputy said, his parents wanted to bring their little man home. If the Deputy had not raised the issue here, that might not have happened. That little man is at home tonight with the comfort of his parents and his two brothers, I am thankful that it is happening. Why did this happen? I cannot tell the Deputy that, but it should not have happened. At this most difficult time in their lives, nobody should have to be fighting for that care.

If one speaks to any older person about where they want to age, they will say that they want to age well at home. It is no different for a younger person. I was aware that the Deputy had raised this matter last week and I have followed it. I come from the same area as Deputy Lowry, more or less. Waterford and Tipperary are covered by community health organisation 5.

Across 2021 and 2022, funding has been allocated for the recruitment of 12 and a half additional whole-time equivalents to enhance the provision of children's palliative care services across acute and community settings. These include additional posts for six and a half clinical nurse co-ordinators for children with life-limiting conditions, four consultant paediatricians with a special interest in palliative medicine, one paediatrician in palliative medicine and one clinical nurse specialist. These posts will support the provision of specialist palliative care to children as close to home as possible. That is the point, namely, it must be as close to home as possible. In addition, since 2021, €1.5 million in annual funding has been provided to support the services provided by the LauraLynn children's hospice. including in-patient symptom control, respite, end-of-life and bereavement care.

More recently, through budget 2023, an allocation of €3.7 million will be provided for new measures in palliative care. The new measures will enhance the provision of adult and children's specialist palliative care services throughout the country and will include funding to support bereavement services for parents and families who have experienced the death of a child, as well as increased funding for LauraLynn children's hospice.

The specialist palliative care team for children is based in Children's Health Ireland in Crumlin and works in close liaison with medical teams providing care to children in need of palliative care throughout the country. With regard to children's palliative care provision in the south Tipperary and south-east area, which the Deputy specifically mentioned, there are two clinical nurse co-ordinators for children with life-limiting conditions in the south east who support the provision of safe care in the home. When children are at end of life, they and their families deserve the best possible care and it is vital that such care is available when needed either in their home or in a hospital setting. The family needs to have the choice and decide as to whether it is the hospital or home setting, working with their consultant. Primary care services in south-east community healthcare, in conjunction with south-south-west hospital group, work to ensure a care plan based on patient need is in place.

A sustainable, long-term solution for the provision of paediatric palliative care services in the south east is under development and the south-east community healthcare organisation is actively working with Children's Health Ireland to progress the required supports in line with the model of care for children with life-limiting conditions. The Department and the HSE will continue to progress developments for children's palliative care services in Ireland, working towards the highest possible quality of end-of-life care and support for children with life-limiting illnesses throughout the country.

Michael Lowry (Tipperary, Independent)
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The most important line, from our perspective in the south east and south Tipperary, in the Minister of State's response is, "a sustainable, long-term solution for the provision of paediatric palliative care services in the south east is under development". Will the Minister of State explain what that means? What is the timescale involved? When can we expect to have a wide-ranging full palliative care service available to the people of south Tipperary? We were told in 2020 it had progressed and now we find ourselves, at the end of the year 2022, still talking about developing the services. Will the Minister of State, please, put a timeline on it?

I will put on the record that this family's ordeal brought forth the best in people while also highlighting, as the Minister of State admits, the glaring gaps in what is a vital service provision. My concern and that of the family involved here is that the trauma inflicted on this family can never be allowed to happen to another family. It can and will happen if the services are not put in place. If we, as elected representatives of the people, cannot ensure the needs of terminally ill children are fully provided for, none of us deserves to sit in this House. It requires urgent attention. I know the Minister of State empathises with the problem and I ask her to make sure these services are brought on stream as quickly as possible.

Mary Butler (Waterford, Fianna Fail)
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Palliative care is a core component of healthcare provision in Ireland. We have to make sure it is available to every child and adult when they need it, whether it is at home or in hospital. We do not think often enough about it until we hear the story of a young child whose parents were heartbroken because they did not have the opportunity to bring their little man home. The Deputy said he was told in 2020 the service had progressed. The specialist palliative care team in Children's Health Ireland works in close liaison with medical teams providing care to children throughout the country. In the south east of the country, two clinical nurse co-ordinators for children with life-limiting conditions support the provision of safe care for children in the home. A care plan is put in place once the referral is received from pediatric community palliative care.

The HSE is working to develop a robust long-term solution for the provision of pediatric palliative care services in the south east and to progress the required supports. No timeframe is provided here but I will give the Deputy my guarantee that I will keep on top of this. It does not matter whether it is the south east, the north west or anywhere else, any child who is at end of life and for whom the parents and consultant agree he or she can come home for his or her last days of life should be able to get the support needed. It is hard to believe we are even having the conversation. I give the Deputy a commitment to keep on top of it. I thank him for raising this very important topic.