Debate contribution: Children’s Hospice: Funding

Debate contribution by Mr Mike Nesbitt on 14 October 2024.

MLA

Mr Mike Nesbitt

Party at the time

Ulster Unionist Party

Date

14 October 2024

Type

Debate contribution (made as a minister)

Business

Private Members' Business

Heading

Children’s Hospice: Funding

Assembly identifier

Official Report component 4590277

Read the official Assembly record

Text

Thank you, Madam Principal Deputy Speaker. In recognition of the motion and the amendment, I will state something clearly and up front: if I had a magic wand, the Children's Hospice would have no financial issue today, tomorrow or in the future, no concerns about resources and no shortage of staff and volunteers. That, however, is in an ideal world, which we do not inhabit, so I will start by setting out a number of important facts about the motion. First, statutory funding for almost every aspect of Health and Social Care and, indeed, all public services has not risen in line with demand and inflationary pressures. That is the unfortunate reality of the situation that all our services are currently in, and it is the nature of the challenge that Health and Social Care faces day and daily. There are no easy solutions. Secondly, palliative care for children and adults is a core health and social care service. All our trusts are commissioned and work with other sectors to provide palliative care in a variety of ways, including in hospitals, in the community and at home. The Northern Ireland Children's Hospice is a vital part of that landscape, and I recognise the sustainability issues that it and many other voluntary-sector organisations are facing today. Thirdly, the palliative care services that are currently commissioned through the Northern Ireland Children's Hospice are already funded up to approximately 50% of their cost, and working in partnership with the voluntary and community sector has been very successful across many health and public services, with many successful models built on some degree of charitable fundraising. I therefore suggest that such a model is not to be disposed of, but I do recognise the extremely challenging environment in which the sector is operating.

It is important that the context be understood by Members for the purposes of the debate. I will give way to the Member.

I said "up to approximately 50%". The issue of access to paediatric palliative care for seriously ill children and young people in Northern Ireland is extremely important to me and to the work that is being done in my Department. On that, I will pause to address an issue that Mr Carroll raised. It is wrong and deeply regrettable that parents have to go to Alder Hey for paediatric pathology, but the fact is that it is very difficult to attract consultants into that area of work. Globally, it is being concentrated in specific areas, and, without wishing to raise expectations too high, I believe that the most practical answer will be an all-island solution. I assure the House that those discussions are going on quietly in the background and that, if there is something to report in due course, I will be delighted to report it if it is a positive message.

Yes.

I know that the Member wants to hear an announcement. I also want to hear an announcement, but there is a process to go through. It is not just down to me and my Department, and I would like the Member perhaps to be a bit more realistic and accept that those quiet conversations are the only way in which to start on a path to success. I was recently invited to visit the Children's Hospice. I have accepted the invitation as I want to see and acknowledge at first hand the exceptional work that it undertakes in supporting children who have life-limiting conditions and their families. The Children's Hospice is a local charity providing specialist respite, palliative and end-of-life care to children and young people living with life-limiting and life-threatening illnesses. It is the only children's hospice in Northern Ireland, as we know, and it provides care and support to children from across the region. The needs of life-limited children are often complex and require the collaboration of a range of professionals to be met. Children's palliative care services are largely provided by the health and social care trusts in hospitals and community settings. Alongside that, there are services that are provided by the hospice. The 'Strategy for Children's Palliative and End-of-Life Care 2016-2026' was published in 2016. It was developed in consultation with all relevant stakeholders across the sector, in Northern Ireland and beyond, to ensure that it was a comprehensive document. The strategy includes 23 ambitious objectives that cover the full range of issues in paediatric palliative care, from diagnosis of a palliative or life-limiting condition to bereavement support for families of children who have passed away. Although the strategy was published in 2016, associated funding to support the implementation of the strategy was not secured until 2019 with transformation funding. As a result of that funding, the regional paediatric palliative care network was established. That network is shared by a palliative clinical care lead. The health and social care trusts, under the direction of their palliative care lead, hold trust-wide multidisciplinary team meetings to consider cases within their trust. Regional meetings are held between local and regional specialists to ensure that high-quality care can be provided for children, irrespective of where they live in Northern Ireland. The network is made up of key clinical and nursing leads from each health and social care trust, as well as the Northern Ireland Children's Hospice. The network also includes representatives from Together for Short Lives. That UK-wide charity's aim is for children and young people with life-limiting and life-threatening conditions, and their families, to have as fulfilling lives as possible and the best care at the end of life. The network works closely together in two main areas. First, it identifies the key priorities for delivering in line with the strategy and puts measures in place to deliver the same. Secondly, the network acts as a vehicle for the region to identify areas of best practice and share clinical opinions on specific cases. To date, the network has developed antenatal care pathways, rapid discharge plans and advanced care plans, and agreed pathways for pain relief amongst other things. The network is also working on other key issues, including provision of 24/7 end-of-life care and examining how to best develop closer ties with colleagues in the Republic of Ireland. To support the delivery of paediatric palliative care, each health and social care trust has a paediatric consultant clinical lead. Those consultants work collaboratively across the health and social care trusts to lead paediatric palliative care in their trusts, ensuring that best practice is shared with colleagues in other trusts and, indeed, regionally. A regional paediatric palliative care consultant, who is based at the Royal Belfast Hospital for Sick Children, works across the region to assist children and clinicians to ensure optimum care for children. The consultant also acts in a leadership role across paediatric palliative care in Northern Ireland. Mr Gaston raised the issue of a strategy. There are many strategies in the Department of Health. One that I am particularly focused on is the mental health strategy. I have campaigned for good mental health all of my time in this Building. We have a mental health strategy, but, if you speak to the mental health champion, she will tell you that she has about one eighth of the budget required. The Department has about one eighth of the budget required to deliver this year's action plan rolling out from that strategy. I am not in the business of raising false expectations by promising a new strategy when I know there will not be the funding to make it happen. Funding for a paediatric and life-limited nurse was made available by my Department. The nurse works in the Northern Ireland Children's Hospice and has a crucial role in delivering care for children right across Northern Ireland. The role was developed as a result of a need that was identified by clinicians and others involved in paediatric palliative care in Northern Ireland. Almost £195,000 has been made available annually for the provision of paediatric palliative care in Northern Ireland. That sits alongside £1·7 million for the Northern Ireland Hospice. As has been noted, my predecessor, Robin Swann, took steps in February of this year to stabilise the annual funding allocation to the Children's Hospice within the resources available at that time. I agree with Mr Kingston that the objective, as he said in his opening remarks, is to stabilise the Children's Hospice. My Department has service level agreements in place with the Children's Hospice for the delivery of agreed commissioned services. This year, my Department has provided funding of £1·7 million to commission the Children's Hospice to deliver bed nights in Horizon House, an inpatient unit that offers supported short breaks; a specialist community team, including a 24-hour on-call service; family support services, including bereavement support; the palliative and life-limited service, with nurses available to facilitate the transfer of children from hospital to non-hospital settings, which could be their home or the Northern Ireland Children's Hospice for step-down or step-up care or, where appropriate, end-of-life care; and the hospice at home service, which provides practical nursing care, support and short breaks to children in their home or community. I understand that the Children's Hospice has faced financial sustainability issues that, it has advised my Department, are linked to increased operational costs and fundraising challenges. To move towards sustainability and a reduction in operational costs, the Children's Hospice advised staff of the need to reconfigure services to reduce the number of beds at weekends to manage costs related to special duty payments. I reiterate that there has been no reduction in recurrent core funding for services that are provided by the Northern Ireland Children's Hospice. With regard to fundraising challenges, the hospice, like all charities that fundraise, has encountered an increase in the costs of doing so. The Children's Hospice has advised that the annual cost of generating fundraising income has more than doubled, from £1·2 million to £2·6 million. The Children's Hospice anticipates that this year's operational costs will be in the region of £5·062 million. It has advised my Department that, to maintain financial stability, it requires an additional £860,000 or thereabouts that would need to be linked to future pay awards in order to ensure sustainability. Over the past number of months, my Department has engaged with the hospice to understand the operational costs of running the hospice, the cost of the services that my Department commissions and the extent of increased operational and fundraising costs. While I recognise the challenging financial context in which all hospices currently operate, I am conscious that many other health and social care and voluntary and community providers are grappling with their budgets. Finally, on the issue of budgets, Mr Kingston said that the Department has to:

"step up and provide the quantum"

required by the Northern Ireland Children's Hospice. He also said that the current financial settlement is simply not sustainable. I tend to agree with him, but those statements could also be made about the budget of the Department of Health, and I could say that it is time for MLAs to step up and provide the quantum required by the Department and that the current financial settlement is simply not sustainable. The irony klaxon in the Department has sounded long and hard to those remarks. I do not say that because I think that we can go on delivering health and social care by simply demanding more money, which is the way that we currently deliver it. We have to reform. Professor Bengoa sat down last week with the First Minister, the deputy First Minister, the Minister of Agriculture, Environment and Rural Affairs and me; Ministers representing the four parties of the Executive. He made it clear that, if we do not reform, eventually — by about 2040 — the Department of Health will need the entire Budget — 100% — which will leave no money for education, roads and schools.

We cannot go on like that. It is my duty to bring forward the reforms that have been needed for so long, and I am determined to do so.

Finally, Órlaithí Flynn said that it is important to have the debate because, in doing so, we send a message to society that we care and that it is an important issue for us. I do care. I care, but I do not have the magic wand. All that I can promise Members is that I will do what I can as soon as I can.

2,081 words. Text as published by the Northern Ireland Assembly.

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