Pádraig O'Sullivan (Cork North-Central, Fianna Fail)
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We are moving to health now. I think the Minister of State, Deputy O'Sullivan, has covered education and transport this evening and I am not sure what else. Fair play to him. I want to talk about the LauraLynn Foundation. I recently met the chief executive and head of communications in advance of the budget. To give the Minister of State a bit of background, the LauraLynn Foundation was established after the loss of two sisters, Laura and Lynn McKenna, to illnesses in 1999 and 2001. This tragedy inspired their parents, Jane and Brendan McKenna, to found the LauraLynn Hospice, Ireland's first dedicated children's palliative care unit. They had witnessed at first hand the need for specialised home-like support and, of course, palliative care. The work that this hospice does is phenomenal.

When I met the CEO, she acknowledged the recent changes in the programme for Government, where there is a commitment to deliver a new national policy for palliative care for children and to increase funding for children's hospice care. The hospice is asking for these programme for Government commitments to be prioritised urgently in the upcoming budget. Time is precious for these children and their families, as the Minister of State knows. To ensure children have timely access to hospice care, the LauraLynn Foundation urgently needs that funding. Statutory funding has not kept pace with the growth in demand for the service and it will run a deficit of €1.9 million in 2025, rising to €2 million in 2026.

I will give the Minister of State an idea of the demand that the hospice experiences. In 2021, 203 children were receiving palliative care in the hospice.

For 2026 that is predicted to rise to 440. The number of families receiving bereavement care was 119 in 2021. That will more or less double by 2026 to 230. The number of community visits the hospice conducts has risen from 380 in 2021 to a predicted 4,500 in 2026.

There are estimates that 2,000 children in this country require palliative care. As I have just demonstrated, the hospice is providing care for approximately 440. There is clearly an unmet need here. The work it does is phenomenal and needs to be supported by the HSE and the Department of Health in the coming budget. To keep pace with demand, the foundation continues to actively fundraise. I again refer to its pre-budget submission. The amount it fundraised in 2021 was €3.2 million. By 2026 it estimates it has to fundraise €5.7 million. The service this group is providing is clearly increasing. It has increased by 180% since its inception. The demand is clearly there. I understand we are not going to negotiate the budget tonight on the floor of the Dáil. However, I would like the Deputy to take a message back to the Department of Health and the Minister, that of all the budgetary asks she is going to have, this is one of the most worthy.

Christopher O'Sullivan (Cork South-West, Fianna Fail)
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I thank the Deputy for raising this issue. I know the LauraLynn foundation is something he has always advocated for and fought for. I agree with him 100%. The merit and support provided by organisations and foundations like the LauraLynn children's hospice represent unbelievable value for money. The service they provide is incredible. I liken it to Cancer Connect or ARC house, which are organisations we should really be supporting financially.

Children’s palliative care is provided through a shared care approach involving GPs, paediatricians, community specialist palliative care teams, clinical nurse co-ordinators and the Children’s Health Ireland specialist palliative care team. All these teams work collaboratively in caring for the child and their family. A key enabler of this model of care is the remote support provided by the consultants in paediatric palliative medicine at Children’s Health Ireland at Crumlin and Temple Street. The voluntary sector, including organisations such as LauraLynn children’s hospice and the Jack and Jill Foundation, provides essential support to the statutory services with additional in-home nursing and respite supports for families. LauraLynn also provides inpatient hospice care at its eight-bed facility in Leopardstown, south County Dublin, along with a bereavement service.

In 2024, 340 children were supported at home by clinical nurse co-ordinators for children with life-limiting conditions each month. Some 78 children received specialist palliative care in Children’s Health Ireland at Crumlin and Temple Street each month and 49 children were admitted each month to LauraLynn children’s hospice. LauraLynn receives core funding from the Health Service Executive under a section 39 service agreement. Recurring core statutory funding for LauraLynn children’s hospice was allocated for the first time in budget 2021. In 2022, an additional €800,000 was provided in once-off funding. In 2023, €800,000 was provided in additional recurrent funding to LauraLynn, increasing its base funding to €2.3 million per year. In 2025, State funding increased further to €3.3 million, representing over 30% of LauraLynn’s total operating costs. This funding has been used to provide a sustainable financial base to the organisation. It has increased LauraLynn's hospice in the home service across Leinster, Munster and Connacht. LauraLynn’s pre-budget submission request is to be funded to the tune of €5.3 million, or 50% of its total operational costs, in 2026. This request will be considered as part of the overall budgetary and Estimates process.

LauraLynn plays a significant role in the overall delivery of children’s palliative care services nationally. The Department of Health, HSE, and LauraLynn children’s hospice have all worked together to develop children’s palliative care services in accordance with the national children’s palliative care policy. The Department of Health and the HSE are both project sponsors of work currently under way in Trinity College Dublin on enhancing children’s palliative care in Ireland. The Department of Health is also commissioning an evaluation of the 2009 national policy on children’s palliative care. The evaluation will review and assess the implementation of the 2019 children’s palliative care policy and identify the areas of progress along with any gaps which may need to be considered in future policy development. Findings from both these studies will inform evidence-based policy decisions in the development of the national children’s palliative care policy and assist with national service planning.

The Deputy has highlighted what the LauraLynn hospice does. It is an incredible foundation and organisation. It provides a service that can never be replaced, certainly on behalf of the State, to families and children right across Ireland. If there is positivity to be taken from that response, it is that the Deputy has seen how the spending profile has gone year on year. It has increased significantly year on year as per that response. The submission LauraLynn has made this year is being taken seriously and is being considered. I would be pushing with the Minister for Health that it would get all it is asking for, with the hope it would get a significant increase in funding again.

Pádraig O'Sullivan (Cork North-Central, Fianna Fail)
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I thank the Minister of State for acknowledging the great work the hospice does. I should have led by saying I remember that a few years ago, I heavily lobbied the then Minister for public expenditure - I think it was Michael McGrath at the time - about Marymount hospice, which does phenomenal work in Cork. It is now fully funded in the area of staff. An arrangement was done with section 38 and section 39 workers. It is now fully funded as an adult hospice. Going forward, the care delivered by the LauraLynn foundation deserves the same treatment that the Marymount hospice received a number of years ago when that agreement was made. I reiterate that generally, when it comes to illnesses in children, they tend to be rare diseases and conditions. They appear to be more complex. There are effects on siblings and the family, and life must go on while all of this is happening. They must continue to attend school and do the normal day-to-day things we all take for granted. The care they provide is in many ways more acute than other comparatives. I reiterate my call for the funding. It is one of the genuine asks that will be made. I also mention the children's palliative care policy, which the Minister of State referenced in his response. The only thing that gives me concern is that they are on about reviewing the 2009 children's palliative care document. The programme for Government commits to a new care policy, and not a review of an old one. I hope that will be reflected in the Minister's work ahead.

Christopher O'Sullivan (Cork South-West, Fianna Fail)
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We will get clarity on whether it will be a review or a brand-new policy. The Deputy mentioned some good examples. He has been an advocate for all of the organisations he mentioned. We know he has been championing the highlighting of rare diseases, especially among children, over this term and the previous term. I refer again to Cancer Connect. A number of years ago it received no funding from the State, and now it does. He mentioned Marymount, which is now completely funded by the State. All of these are going in the right direction. The current funding for LauraLynn is €3.3 million. The ask is €5.3 million. It is a significant increase, but the amazing comfort, care and attention it gives to families and children who find themselves in these situations is extraordinary. Therefore, any ask should be taken seriously, and the Deputy has put the case well today.