Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome the following representatives from the NI Hospice and the Children's Hospice: Trevor McCartney, the chief executive; Brian Henderson, chief finance officer; Gemma Aspinall, director of care and quality governance; and Dr Emma Lundy, consultant in palliative care medicine. You are all very welcome.

Before you start, I thank the hospice team for having the Committee at the hospice in December and February. I was not there in December, but I was in February. It might have been my first visit after taking over as Chair of the Committee. Both visits were very informative for the inquiry. I welcome you to the Committee today in what is Children's Hospice Week 2025.

I will hand over to you to give us a brief statement, and then we will ask questions.

Mr Trevor McCartney (Northern Ireland Hospice): Thank you for having us. Chair and members of the Committee, thank you for the opportunity to speak today and for the time that you have taken to visit our adult and Children's Hospice to see at first hand the work that we do and, most importantly, the patients for whom we care.

I will say a few words, after which my colleagues who have joined me today will speak. Brian Henderson, who is our chief finance officer, will speak to the realities of our current financial situation and the difference that fair funding would make. You will also hear from Dr Emma Lundy, who is one of our palliative medicine consultants in our adult inpatient unit. Emma will describe the nature and impact of our adult hospice inpatient services and the types of patients for whom we care and, in particular, the difference that we make to those patients and their loved ones.

Gemma Aspinall, who is our director of care, will talk about the specialist nature of the care that we provide. Gemma will also cover the services that are provided in our Children's Hospice, which is the only children's hospice in Northern Ireland, as well as our adult community services and the vital role that they play in caring for people in their own homes. We will then welcome any questions that you may have.

Throughout the inquiry, you will have heard many of the facts, figures, system failures and issues facing palliative care, all of which we echo and all of which are absolutely correct. My colleagues will reinforce many of those messages today. However, we also want to talk about our patients in order to help bring out the reality of what palliative patients and their families face and the difference that hospice care can make, whether it is part of an inpatient service, in the community or any combination thereof.

Patients are at the heart of what we do. That is something that we never forget, and we want to ensure that their voice and their needs and those of their loved ones are brought to the Committee. With that in mind, I will give you some brief comments from a patient and from a patient's family that are very representative of the feedback that we receive every single day:

That is an important reality of specialist palliative care. Consultants such as Emma and her colleagues are highly skilled and capable of managing very complex patients.

Our patients are very often discharged back into the community. Many patients have multiple admissions to our inpatient unit to resolve symptoms, and they go home each time. That is a true benefit of a specialist service that is led by specialist consultants and supported by a specialist community team.

There is a quote from a family that sticks with me:

We are the last hospice to give evidence to the inquiry. The truth is that all hospices want exactly the same things: fair and secure multi-year funding; a clear and deliverable strategy that will bring a best practice service model; hospice inclusion in strategic healthcare planning; a region-wide approach to palliative care that reaches everyone who needs the service, regardless of where they live; and a clinical lead with the authority and mandate to drive that forward.

Those are not luxuries, and they are not things that would be nice to do; they are a minimum standard in a compassionate health system. A very eminent physician said something to me recently that really struck me. He said that Northern Ireland is small enough to have one of the best health systems in the world. I believe that that is possible, but it requires focused minds and courage and actions that result in outcomes rather than continual reviews that move our services no further forward. It requires an uncompromising focus on patients and their care.

As the only provider of children's hospice services in Northern Ireland, we will give you insights into how that care is provided, what it costs and what it would mean for our patients and their families if we got the government support that we need to provide the level of care that those families deserve. With that in mind, it may surprise the Committee to know that the recently defined baseline scoping work to understand palliative care need has not yet begun, but it has, at its earliest stage of development, specifically excluded children's services, which causes us great concern.

Hospice care, be it in the community or in our adult or children's inpatient units, is not about people dying. It is about living well, right to the end. We may not be able to add days to life, but we can and do add life to days. Northern Ireland Hospice cares for people physically, emotionally and spiritually, providing vital support to our patients and their families. We do that every single day under growing pressure, with unsustainable funding and a system that still treats us and those for whom we care as optional.

Let me be clear: palliative care is not a luxury but a human right. Right now, too many people in Northern Ireland are dying without the dignity, comfort or support that they need and deserve. We are not asking for special treatment; we are asking for fairness. We are asking for a model of care that recognises hospices as essential partners in the health system, not as afterthoughts or nice-to-haves.

We have worked very hard to make ends meet, and we are so grateful to our local and international philanthropists and the wonderful Northern Ireland public, without whom we would not be here. However, having to rely so heavily on those sources for funding instead of government is a failure that we can no longer afford when everyone deserves compassion in the final stages of their life. This inquiry may be the start of us building something better, but talk will not ease pain. That will come only from meaningful action.

Mr Brian Henderson (Northern Ireland Hospice): Good afternoon, Chair and members of the Committee, and thank you for the opportunity to speak to you today. As the hospice's chief financial officer, I must begin by addressing a critical and growing concern. In 2004, the Department of Health committed to a 50:50 funding model in which statutory funding should meet 50% of the costs of charitable hospice care. Unfortunately, that commitment has not been met in either our adult or children's services for several years. Based on our current forecasts, we estimate that the gap in funding that needs to be met in order to reach that benchmark will amount to approximately £805,000 in the current financial year.

The root of that funding gap is in the Department of Health's initial decision to benchmark hospice funding against the cost of a general medical bed. That is a standard that fails to reflect the complexity of the care that we deliver. General care addresses a broad range of health needs across the population, while specialist palliative care focuses specifically on people with complex, life-limiting conditions and on providing expert symptom management, emotional support and end-of-life care through a multidisciplinary team (MDT). Our hospice provides that high level of specialist care to the overwhelming majority of our inpatients, yet we are funded as though we are delivering generalist support, leading to a deep and growing disconnect between the care that we deliver and the funding that we receive. That shortfall has only increased year-on-year, particularly since the onset of COVID-19, as we have faced extraordinary cost pressures, including rapidly rising salaries, the price of medical supplies and increasing energy costs.

What other challenges does the hospice face? In addition to the well-documented cost pressures arising from inflation, we have faced a significant increase in employer costs due to national policy changes. The rise in the national living wage by 6·74%, combined with the increase in the employers' National Insurance rate and the reduction of the employment allowance threshold to £5,000, has resulted in an estimated additional cost burden of approximately half a million pounds across our organisation. Against that, we received total interim uplifts in statutory funding of just £196,000. While that funding is very welcome, the disparity further widens our funding deficit, undermines the sustainability of our model and leaves us struggling to find an additional £304,000, despite our statutory partners relying on us to deliver complex end-of-life care in the community.

We rely heavily on fundraising from the public to cover the gap between statutory funding and the full cost of our charitable activities. That shortfall has become increasingly difficult to bridge in recent years. According to the Consumer Council's household expenditure tracker, at the end of 2024, the lowest-income households had less than £53 a week in discretionary income after essentials, which is an 18% fall since the first quarter of 2021. Even modest price increases in food, utilities and transport costs significantly impact on household budgets and reduce people's ability to make charitable donations.

In spite of those challenges and in order to remain operational, we have responded proactively. Over the past two years, we have achieved record highs in both voluntary fundraising and retail trading from our hospice shops through a clear strategy of income diversification and organisational growth. To their immense credit, the fundraising and retail teams have performed remarkably despite the immense pressures that are on household disposable incomes during the ongoing cost-of-living crisis, achieving just over £10million in income last year combined. It is also worth noting that our fundraising and retail teams consistently outperform Hospice UK benchmarks for return on investment and profit per shop. However, even after surpassing all previous income benchmarks, we still recorded an overall deficit. That underscores a hard truth, which is that specialist palliative care cannot be sustained through charitable income alone.

Last year, the public gifted £2·72 million to NI Hospice through legacies, which are donations that people leave to us in their will. Those accounted for approximately 14% of our total income. While those donations are very welcome and ultimately reflect the high regard in which the public hold our services, their timing is unpredictable and therefore cannot be relied upon year-on-year to fund our largest ongoing cost, which is our staff salaries.

Are those pressures unique to Northern Ireland Hospice, or are they part of a larger trend? As a member of Hospice UK, we submit detailed financial performance reports on a quarterly basis and receive sector-wide benchmarking data in return. Those reports highlight the fact that the hospice sector as a whole has suffered collective operating deficits over the past two financial years — the only deficits in over 20 years of Hospice UK collating the data, and therefore the worst results on record. The report also noted that the largest pressure across the sector was pay, with payroll costs increasing by 9% last year. When combined with a 10% increase in the previous year, that shows that the hospice sector has seen a wage bill rise by almost 20% in two years. The data indicates the stark reality that the situation is rapidly deteriorating for all UK hospices.

I will now talk about statutory contracts. One of the key challenges that we face with our statutory contracts is the lack of standardisation across the health and social care trusts. The inconsistency results in variable contract terms, funding levels and reporting requirements, which complicates planning, service delivery and financial sustainability. A more uniform contractual framework would help us to ensure that there is equitable support for hospice services across Northern Ireland and enable more efficient resource allocation.

What would our ideal statutory contract look like? It would have five components: first, multi-year contract awards to support strategic and workforce planning; secondly, service-specific KPIs to reflect actual delivery and quality outcomes; thirdly, full 50:50 statutory funding to meet the Department of Health's original commitment; fourthly, indexation to the NHS Agenda for Change pay framework to ensure pay parity and financial sustainability; and lastly, a mechanism that is defined for over-performance to account for unanticipated increases in service demand. You will ask, "Are those components practical and achievable?". The answer is yes. We have achieved four of the five components with our patient-focused and forward-thinking partner, the Northern Health and Social Care Trust.

After reviewing the contract at the end of 2023-24, new KPIs were agreed across the three service areas; the contract was increased by 25·6% to bring it up to 50:50 funding of our charitable costs; and contract duration was increased to five years, linked to Agenda for Change uplifts, with the 5·5% being paid to the hospice in the same month as it was paid to NHS staff in March 2025, allowing us to pay our staff in line with the NHS.

The simple truth is that we cannot continue to bridge a structural funding gap of this scale indefinitely while maintaining current service levels, so I ask the Committee to consider the following actions. First, the current gap to 50:50 for all hospices should be addressed, so for us, that would mean providing funding of £805,000. Secondly, it is recommended that the cost base of each hospice bed be assessed on the basis of the kind of care that is provided — in our case, that is specialist palliative care — to arrive at a service specification that would then be used as a benchmark for calculating funding, initially at 50:50 with a gradual increase to 100% over time, as is the case in the Republic of Ireland. Thirdly, it is recommended that statutory contracts be standardised across the various trusts to include at least the five aforementioned key components.

Without a fundamental shift in the funding model to one that aligns statutory contributions with the true cost of specialist care, we risk the erosion of a service that is essential to our communities and invaluable to the patients and families whom we serve. We welcome the inquiry as a vital step towards creating a more sustainable and equitable model for palliative care in Northern Ireland.

Dr Emma Lundy (Northern Ireland Hospice): Thank you, Chair and members of the Committee. You will have heard lots of people who attended the Committee before me define specialist palliative care. I will not do that again. For me, it is the same as referring to any specialist service. When the generalists have done everything that they can for a patient but it is not working, they refer the patient to the specialist in that area. It is the same for general surgery, cardiology, respiratory and renal etc.

Unlike those specialities, we do not perform life-saving surgery. We do not do procedures that improve the way that your heart works or give you dialysis that is life-saving for you. Let us face it, we talk a lot about death and dying. On a night out, when someone asks me what my work is, it is a real conversation stopper. In all seriousness, however, that reflects the attitude to death and dying in Northern Ireland. We think that if we do not talk about it, it might never happen, but it happens to everyone.

Not every person who is dying will need our help, but we need to be able to reach those who do. We are made to feel like a luxury specialty instead of an essential one, and it feels as though we are constantly fighting for recognition and funding. As sad as it is, I sometimes think that people understand our true value only when they have had to access our service for themselves or someone they love. Sadly, that might be when they or someone they love needs us and we are not there.

Everyone is entitled to high-quality palliative and end-of-life care. People do not need to suffer with unbearable symptoms. People do not need to die badly, agitated and in distress, but, when we cannot reach them, sadly, that is what can and does happen. We constantly have a waiting list for our inpatient unit, which means that there are always people who are suffering while they wait for our beds. Sadly, some of those patients will die before a bed ever becomes available.

Our inpatients cannot receive the specialist care that they need anywhere else, exactly the same as patients in an intensive care unit or coronary care. Just because it is not life-saving treatment does not mean that it is of lesser value. I know that I am biased, but the good news is that we provide excellent specialist palliative care in the Northern Ireland Hospice. For me, it is a blessing to be able to walk out of my place of work every day and be immensely proud of the care that we provide. Please help us to deliver that care to the people who need us the most.

In the bigger picture of healthcare in NI, specialist palliative care has a significant role to play in the strategy of right patient, right place, right time. We can help to prevent hospital admissions and expedite patients' discharge from hospital by providing specialist palliative care for patients in their home. We can transfer patients with specialist needs from acute hospitals to our inpatient unit, thus helping to free up acute hospital beds.

We have 18 beds, and we fall victim to the same issues as hospitals. We struggle to get the social care support for our patients who are ready to be discharged from hospice, and, as a result, our beds do not become available in a timely fashion for those patients who need them most. That also has implications for respecting a patient's preferred place of care and death. It is dreadful to tell a family that we cannot get the social support that they need in order to get their loved one home to die in their own home. Not granting that one final wish lives with families forever. Can we get the same access to care packages, step-down beds and nursing home beds as the trusts so that we can have the right patients in our beds at the right time?

I will leave you with a few examples of the type of patient for whom we care. Some patients are so sore that they cannot sit down, and they scream in agony if they try. Patients who have severe symptoms and are dying who have young children. Patients who have tumours eroding their face; they cannot speak, eat or breathe normally and they have severe pain. Patients who have severe symptoms and who have a history of alcohol or drug misuse. Patients who have been in prison and have been compassionately released or transferred to us for end-of-life care. Patients who have severe symptoms and are dying who have come through the legacy of the Troubles and have severe psychological distress. My last question to you is this: where else can those patients get the level of care that they need and deserve?

Ms Gemma Aspinall (Northern Ireland Hospice): Thank you for prioritising palliative care and for the opportunity to contribute today.

We have a lot to be proud of. At the Northern Ireland Hospice, we do what we do incredibly well. However, it is not enough, and we want to do more for more people. In order to do that, we need fair and sustainable funding, based on need and service delivery cost. At an individual nation level, Northern Ireland is projected to have the largest proportional increase in need for palliative care, rising by 32% between 2023 and 2048. That places the largest change in demand on the services that are necessary to deliver the high-quality, compassionate care that is needed and that everyone who requires it deserves. It is a demand on services that are highly fragmented, which is a symptom of complicated commissioning, regional variation, the lack of a regional service specification and an absence of fair and equitable funding.

In facing that challenge, we would all like to hear that we have a head start in the marathon that is required to deliver the services that are needed across the region. In reality, if we were to ask those nations to step forward if they have an up-to-date palliative care strategy, a legal right to access palliative care, fair and sustainable funding for hospice services and clear service specifications to inform commissioning and service delivery, we would find ourselves firmly stuck on the start line. We are an outlier, lagging behind the rest of the UK and the Republic of Ireland. We should aim to be at least equal with them, if not the best. Furthermore, hospices are under greater pressure than ever before to find ways in which to do more with less.

I will now talk a little about our adult community services. More than 95% of our adult hospice services are delivered outside of our hospice buildings. Most people for whom we care want to remain at home, in the comfort of familiar surroundings and in the presence of their loved ones. Last year, we helped over 1,500 patients to fulfil their wish of dying at home, supported by our specialist community nursing team and in partnership with GPs, district nursing, family members and carers and our hospice at home team. Every person who is cared for needs and deserves high-level support and care to achieve that in comfort and with dignity.

Our hospice community nurses are more than healthcare professionals. They are a lifeline. They step into people's homes during the hardest days of their life. Their care and responsiveness helps to prevent and manage crisis and eases health service pressures elsewhere by avoiding unnecessary hospital admissions, visits to emergency departments and calls to the Ambulance Service. For context, if one person were to spend their final days in hospital, a conservative cost estimate is approximately £566 per bed night. That is based on a very old benchmark figure. For three nights, that equates to just under £1,700. For all people who are supported by our teams in the community at the end of life, that is comparable to a saving of over £2·5 million for the acute health and social care system. Using similar methodology, we find that 5,406 bed nights occupied in our specialist adult inpatient unit represents a cost saving of over £3 million.

Our children's hospice is the only provider of children's hospice services in Northern Ireland. It offers comprehensive paediatric palliative care that supports not only the child but their entire family physically, emotionally, spiritually and socially. Every child for whom we care is unique, and our goal is to enhance their quality of life by creating opportunities for meaningful moments and ensuring that they receive the right care at the right time and in the right place.

At Horizon House, which is our children's inpatient unit, in the past year, 233 children were cared for during supported short stays and, unimaginably, 10 children were admitted for end-of-life care. It may shock you to hear, but that 10-bed unit has never been able to operate at full capacity owing to insufficient funding. With the right funding support, stepping up from the six beds that we can currently afford to operate to a full 10 beds would make a world of difference to the children and families whom we care for, increasing access to and the length of supported short breaks and ensuring that we can respond to end-of-life care and social emergency care without impacting on the planned supported short breaks for the children.

Currently, we can offer, on average, less than half the number of days that the children's hospice in Dublin can offer to each child per year. As a nation, we fall short when benchmarking our paediatric palliative care provision against others'. To help address that, the Regional Paediatric Palliative Care Network (RPPCN) needs allocated resources in order to make improvements and for the future-recruited palliative care consultant to lead a regionalised approach, alongside other disciplines, to provide one clear model of care across the region.

In the past year, we have supported 16 antenatal mothers whose babies had been diagnosed with life-limiting or life-threatening conditions, while our Hospice at Home team provided over 6,000 hours of home-based nursing care to 52 children. Parents tell us that that service is invaluable in helping them balance day-to-day life around their child's complex needs, thus providing them with the support that allows them to spend time with each other and their other children and helping reduce the potential impact of adverse childhood experiences.

In the regional hospital for sick children, our palliative and life-limited service (PALLS) nurse offers crucial support to families during the most challenging conversations, such as breaking bad news, conversations about advance care planning and conversations about making decisions about where to receive care. We know that a child's illness affects the whole family, and our family support team provides emotional, practical and social support to the family circle, including siblings and grandparents. For those grieving the unimaginable loss of a child, our specialised bereavement support is there to offer comfort and guidance. The Horizons bereavement project, now in its fourth year, is reliant on non-recurrent funding. It has provided bereavement support to families who have experienced the sudden and often traumatic death of a child, thus helping them find solace and strength as they process their grief. The truth is that, across our children's and adults' hospices, we offer vital services that people hope never to need, but it is crucial that we be there for them in times of need.

Our asks are that we put a stop to the inertia; that we stop repeating reviews and issuing recommendations that are not underpinned by mandated actions and appropriate funding; that there be action taken now, and a commitment made to take ongoing action, to sustain, deliver and further develop the delivery of palliative care to all those who need it in Northern Ireland; that we fully fund hospice care for adults and children, recognising its crucial role in palliative and end-of-life care delivery within the wider health and social care system; that there be a clear regional service specification for palliative care services and specialist palliative care services, including seven-day service provision and out-of-hours services; that there be closer integration of palliative care across health and social care settings to ensure timely and effective care and to avoid duplication; that, through that, everyone, across the full lifespan of Northern Ireland, can access equitable, high-quality palliative and end-of-life care, no matter whom they are or where they live and regardless of the cause of their condition; that we give the people of Northern Ireland, and the services that deliver palliative care for them, a fair start in the race in order to achieve the very best for all the people who need that care at their most vulnerable time; and that we take this chance to get it right. Thank you.

The Chairperson (Mr McGuigan): Thank you, all of you. I should put on record that my mother was a patient in the NI Hospice over 20 years ago before coming home to die. I therefore personally understand the great work that you do.

I will move straight to questions. Having fair, secure, multi-year funding sounds eminently sensible. There was a lot of detail in your presentations. In 2004, there was an agreement whereby hospices were to get 50:50 funding. You say that that is not happening and that, at the minute, you are probably £805,000 short.

Mr McCartney: Yes.

The Chairperson (Mr McGuigan): Following on from that — I am trying to get this right in my head — you also say that you get funded almost to the level of the cost of what the Department equates to a hospital bed in a general services hospital, as opposed to the level of the obviously increased cost that you incur from providing specialist services.

What is the difference in cost between a hospital bed and a palliative care bed in a hospice?

Mr McCartney: You are right. To give you a little bit of background, in 2004, there was an agreement made. It was a ministerial direction, and the phrase used was:

That was not based on a benchmark but rather was supposed to be an assessment of each hospice's funding structure, because every organisation is different, and 50% of that was to be paid. In 2018, a review was done, and the decision was made to benchmark that 50% against the cost of a general medical bed at the time. We were getting paid 50% of that, but that does not come close to meeting 50% of our costs. The reality is that I have 18 beds in an adult inpatient unit and six beds in a children's unit. I therefore do not have a large volume of beds over which to spread that overhead. The NHS, even against that benchmark, has thousands of beds over which to spread that overhead. The 50% commitment was therefore never going to be met. It was never going to happen. As each year has ticked by, small uplifts have been given, but they do not close the gap. Rather, they widen it, because they are not in line with inflation.

We have seen a brilliant example from the Northern Trust. It reviewed our contract. Why did it do that? It did so because it is very forward-thinking and knows that the area has one of the largest ageing populations in Northern Ireland. It knew that it needed to manage the services in a way that would become sustainable. As Brian said, first, the trust linked cost increases to the 50%, so it actually pays 50% of the cost. Where costs increased, it linked them to pay rises in the NHS, so they are linked to Agenda for Change. That stops the jaws widening. The trust has based that on ensuring that it gets the service that it has paid for, which is a sound business approach to a very difficult situation. Where there is over-performance, we can have conversations about that, but that money is the same as what all other trusts will get, because they get it from the strategic planning and performance group (SPPG). My question becomes this: if we know that that is the way forward, and we have seen examples of why that is the case, why it works and why it can work, why cannot all funding be that?

The final point that I will make is that that is the 50% argument, but the reality is, as Brian talked about already, that, with the cost increases across the UK and various other things, the benchmarks that we get at the minute, even against the 50%, will not be enough in the long term. We therefore need to move towards having a more capable funding model that goes far beyond 50%.

The Chairperson (Mr McGuigan): As a citizen of the Northern Trust, I am delighted to hear that. It is great when we hear people who have come to give evidence be able to pinpoint where something has been done well. We are very interested in all healthcare, but, in this inquiry, we are particularly interested in health inequalities. In order to tackle health inequalities, it is very important that funding inequalities be tackled as well.

Again, I am trying to get this right in my head. You are saying that the funding is supposed to be 50:50. When you describe the scenario and how we got to this point — I am trying to choose my words very carefully so that I do not insult anybody — it almost seems as though it is a case of a business trying to save money rather than worrying about patient outcomes, as one would expect the Department of Health to be.

Mr McCartney: I think that the situation was twofold. It was a very easy way in which to put in place a measure that some may regard as being defensible. I regard it as being indefensible. From a governance perspective, perhaps it was an easier solution, but, in reality, first, it bears no resemblance to the agreement that was in place. That agreement is therefore not being honoured. Secondly, it does not meet the cost base of any hospice in Northern Ireland. The result is that every hospice is showing deficits.

The Chairperson (Mr McGuigan): OK. The evidence that you have presented to us has been very good. I could carry on this conversation for a long time, but I will move on. What is the impact of excluding children's services from the scoping exercise going to be?

Mr McCartney: We were recently invited to a meeting with the SPPG to talk about the baseline scoping exercise. As you will be aware, that exercise was committed to a long time ago. It was supposed to commence six months ago, but, clearly, it has not started. We were shown some slides. The conversation was about the extent to which that work would be de-scoped to the available data — even then, some of the data is not available — in order to get something moving. When I saw on one of the slides that children's services had been de-scoped, I was appalled. The need for children's services in Northern Ireland is growing, not reducing, so to see that they had been de-scoped was a surprise.

I wrote to the Children's Commissioner's office to ask whether it was aware that children's services had been de-scoped. It replied in a timely manner — we received its reply yesterday — that it was aware and that it was trying to find resources to look at the situation. That does not help, however, because, if a big piece of work to look at palliative care in Northern Ireland is happening, children's services should be part of that.

The Chairperson (Mr McGuigan): I could not agree more.

Gemma, you talked about 24-hour services, which is a significant issue that has been raised time and again, particularly by loved ones who have tried to access such services. If we were to have 24/7 services across the board, how could hospices provide assistance?

Ms Aspinall: It is a big omission that we provide services only five days a week, when we know that they are much-needed. At the moment, the funding certainly does not support seven-day out-of-hours service provision. Should the funding be there, we would be able to be there to provide the same response. We could respond to changing symptom needs, help people be managed and cared for at home and provide timely and responsive care so that they do not end up picking up the phone to call the Northern Ireland Ambulance Service (NIAS). We do not present at the emergency department, but delivering that service requires the appropriate workforce.

The Palliative Care in Partnership (PCIP) programme is leading a work stream on scoping seven-day service provision for specialist palliative care nursing. It is imperative that any recommendations on that model specify the resource that is required to deliver it. I have a concern about the potential for a recommendation to stretch the existing service and workforce more thinly in order to provide that model. It would be extremely remiss if that were done.

We could be there to respond when people need us, rather than switching off face-to-face service provision at 5.00 pm on a Friday and not resuming until Monday. At the moment, when somebody needs something out of hours, generalist service providers respond, which is amazing. If there is 24/7 district nursing in an area — that is not available in all areas of Northern Ireland — it is excellent that there can be a physical response. We would like to know, however, that those who require specialist support and more complex symptom management will get the right person, in the right place, at the right time, which means having a specialist nurse in the person's home when that is needed.

The Chairperson (Mr McGuigan): Thank you. I will not ask you a question, Emma, but I underlined a number of very important points that you made in your presentation. I will now bring in other members.

Mrs Dodds: Trevor, I will go back to the issue of children's services being excluded from the scoping exercise. The Committee has asked about it numerous times. We asked the Royal College of General Practitioners (RCGP) whether it had been asked about the scoping exercise. It said no. You have been to a meeting with the SPPG about it, but you tell us that the scoping exercise has not started. Frankly, I find that appalling. At the beginning of our inquiry into access to palliative care services, we received a presentation from a senior official in the Department of Health, who talked about a scoping exercise.

We are now six or eight months down the line, and that has not started. It is appalling that the Department does not know the extent of the palliative care services that are out there, but it is equally appalling that it has not started the scoping exercise. I am astounded, although I suppose that I should not be.

I want to know two things, both of which are really important. We will discuss the issue in Committee, but I hope that we will write to the Department in the strongest possible terms to say that it is unimaginable that children's hospice services are not to be included. What is the impact of their not being included?

Mr McCartney: The impact of their not being included is that there will be no definition of the scale and scope of need, and it is therefore unlikely that anything will ever land on an individual's desk in the SPPG or anywhere else to say, "Here is something that you need to deal with".

Taking palliative care generally. The most recent palliative care strategy that was in place in Northern Ireland was in 2010. That was 'Living Matters: Dying Matters', which ran until 2015. There was then a commitment in 'New Decade, New Approach', which became action 13, to produce a strategy. It was assumed that that would happen, but it did not. There was then a reference in the Department of Health's annual accounts two or perhaps three years ago to there being a lack of resources to do that but that the Department would get on to it. After that, it literally disappeared. Adults' and children's palliative care has therefore not received the attention that is needed, because the regional strategies have not been done. They are not in place. Key to any strategy is the data, the information and the insights that will lead to actions that can be taken forward and for which appropriate funding can be sought. That is the reality of where we are at, and of where we have been for nearly a decade.

Mrs Dodds: Thank you for that. Back whenever — I cannot remember when — the Minister announced that there would be an additional £13 million every year for additional respite beds. You potentially have 10 respite beds but are able to fund and use only six of them.

Mr McCartney: Yes.

Mrs Dodds: I know, from personal experience and from families with whom I have been involved, how important those beds are for children who have a life-limiting condition or who need care and respite. With the announcement of that £13 million, were you ever approached and asked to consider opening more respite beds? What is the level of need? Do you have any data or figures that can be provided to the Committee?

Mr McCartney: Yes.

Mrs Dodds: How many more respite beds are needed? What difference would having more respite beds make to a child's life and the wider family?

Mr McCartney: I will describe it to you this way. Gemma will know more about this. The benchmark is that we should be able to provide at least 10 to 12 days' respite care per child every year. With only six beds, we can provide only five days. The result is that children arrive with us in huge people carriers with myriad pieces of equipment, and, after they unpack, they are there for only two days before they have to leave again. You have seen that, Diane, because you have supported some of our families. That is not an acceptable level of service. If we were to get up to 10 beds, we could provide 10 to 12 nights' respite care.

Another issue for Northern Ireland is that our geography is quite rural. A lot of the children therefore come from far away. As you know, we used to have a seventh bed, but it was cut. It was reserved for children who had to travel for more than an hour to get there. That rurality is why we need the number of beds to be increased.

Ms Aspinall: We supply supported short breaks for children. I have to be clear that increasing bed capacity does not provide care for more children. We receive referrals and accept those that are relevant to our service. We look after every child whom it is appropriate that we look after. That ensures that they have longer stays and a higher number of stays across the year, and we even get that little step closer to achieving for them what other nations provide by way of supported short-break provision. Parents describe it as a lifeline. It really is, because it allows their child to do some simple day-to-day activities and spend time with other children. That is so valuable.

The impact of having more respite beds would therefore be a longer stay and more days across the breadth of the year. As I said, however, we average of six days — sometimes just below six days — across the year. The visit down South was inspiring, uplifting and deflating in equal measure, because to hear that, on the same island, 15 nights can be offered is extremely sad when we can offer much less. It goes back to what I said at the beginning. What we do, we do incredibly well, but we need to be able to do more for children and families.

Mr McCartney: Diane, I omitted to answer your question, so I will do so now. No, we have not been approached in any way about any of the funding that was announced.

Mrs Dodds: That is really important to hear. It is tragic, and it is a shocking omission on the part of the Department. I wrote to the Minister about that, and I got a letter back that said that one trust has expressed some interest. If those really vulnerable children and their families are not a priority, I fail to see who is a priority. The matter is worth pursuing, because it is hugely important.

I hear what you are saying about contracts and funding. All your suggestions are really helpful and very important. The issues with employers' National Insurance and equity in the provision of services for people with palliative care needs have been reiterated.

This is my final question. In light of the fact that, tomorrow, there will be a really significant vote in Parliament, what is the hospice's view on the assisted dying Bill?

Mr McCartney: A week or two ago, we finished developing our position with our board. It is very simple: in the Northern Ireland Hospice, our charitable objects do not include assisted dying. It is not something that we do.

Mrs Dodds: Finally, thank you so much. I enjoyed and was enlightened by both my visit to the hospice. The hospice movement across Northern Ireland is significant and important. I omitted to say that I was also there yesterday when the Southern Area Hospice became Evora Hospice Care. I wish that hospice all the best. I thank you for everything.

Mrs Dillon: Some of my points have already been raised. The scoping exercise cannot wait until our inquiry report is done and its recommendations made, so we need to ask now why children's services are being left out. I am having to raise the issue time and time again, even for services other than palliative care, but palliative care and the support that —.

The Chairperson (Mr McGuigan): I should mention that we will have the SPPG with us next week, so we will be asking it about that.

Mrs Dillon: Across the piece, I am really frustrated about the provision of children's services. You talked about children being given a diagnosis post birth and their coming to you. You are probably all that they have. That has been my experience from talking to families. When a child is diagnosed with any condition, there is little to nothing available for them. We now have pre-teen or teenage boys who have DMD — Duchenne muscular dystrophy — and there are no counselling services for them or their families. There are gaps in children's services right across the piece, but it is really frustrating to hear that, in the scoping work that is being done, which is an opportunity to look at what is there and what is not there and what can we do better, they have been completely left out. We need to find out why.

Most of my other questions have been answered. We appreciate what you do. There are consequences of not getting access to services that people do not understand. We have been through it as a family and in a wider family context. I watched a programme last night about a case in England: the wife of an 80-year-old man — they had a severely disabled son — had died. He had contacted the hospice, but it had had no bed and had not been able to help. She died of natural causes. He was arrested for potential murder, but he had done nothing; she had died of natural causes. However, he then attempted to take his own life and the life of his son. His view was, "There were no services to help my wife or to help us". She had asked him to do what he did. She had said, "Nobody will look after our son when we die". He was arrested and went to jail for attempting to take his son's life. That is what happens when families do not get support. We talk about what happens, but we always miss those stories.

Finally, the lived experience of the people whom we met last week highlighted to me the difference between the families and individuals who got palliative care and those who did not, particularly with pain management, which was the big issue. For that reason alone, the Committee needs to focus on palliative care, and we are doing the right thing in having this inquiry.

Mr Donnelly: Thank you for your presentations. They have given us a comprehensive view of the amazing services and the amazing work that you do. Most of us will be aware of that. Taking the opportunity to visit your hospices was really moving: seeing such a calm, quiet, peaceful and welcoming atmosphere and talking to some of your patients and families and hearing their appreciation of what was on offer despite the harrowing circumstances. What you do changes people's lives and is incredibly powerful. Thank you for that.

Northern Ireland is a small place, and, when I talk to people on the street, nearly everyone knows someone who has benefited from hospice care. Maybe it is someone in their family, a neighbour or a friend, and there is a lot of appreciation for the services in Northern Ireland. That appreciation is probably reflected in what you said about the increased sales in hospice shops and the increase in donations. The way in which hospices are funded is wrong, and we need to address that, but people really get behind them.

Trevor, you mentioned children's services being excluded from the scoping exercise. As Linda queried, was a reason or rationale given for that?

Mr McCartney: The rationale appears to be that there is insufficient data, time and resources to do a scoping exercise of that breadth and that that is the reality being faced. I understand that there are many challenges and issues in Health, but my view is very simple. I have held it throughout my career, and it is a hospice ethos: if you are going to do something, do it properly. Do it so that the right outcomes and insights develop the right actions that will make a difference. It is worrying that children's services are not included.

On Linda's earlier points about funding, in the past, there was a debate in the Chamber about the funding for the Children's Hospice. The Minister had visited the hospice and spent a lot of time there. He is aware that there are philanthropists who are willing to fund additional beds if the Government will step up to fund the additional 50%. The Minister mentioned that in the debate. The reality is that we know that the need is there right now — that does not require a lot of data — and we know that funding can be made available in other ways. We know that our ask is probably significantly smaller than what is available, and we have international philanthropists who are willing to help. It seems somewhat bizarre that, with all that clear, positive information, we cannot move this forward. The other thing to remember is that it takes time to build up the service. You need clarity on what you are going to do for a number of years in order to recruit, retain and manage the individuals who will staff those beds. Delaying is really not an option.

Mr Donnelly: We spoke before about the 50:50 funding that is available. How much would it cost to bring that up to the full 10-bed funding?

Mr McCartney: Brian is much better placed to answer that.

Mr Henderson: It would cost approximately £1·2 million extra a year to fund 10 beds, but, as Gemma and Trevor said, by increasing our capacity for the stays, we would get an economy of scale. That would take at least 25% off the cost per bed night to run.

Mr Donnelly: That is with the 50:50 funding.

Mr Henderson: That is on the basis of having 50% statutory funding and 50% funded by private donors.

Mr Donnelly: You also mentioned that you already have a deficit of £805,000 this year.

Mr Henderson: That is planned. That is an in-year deficit under statutory funding for 2025-26.

Mr Donnelly: That equates to 0·01% of the healthcare budget. My maths may be a bit shaky, so I will ask the Chair or somebody to check that, but it seems quite small. What happens if you do not get that funding and it is not raised through charitable donations or whatever? Will that impact on your reserves or on your ability to deliver services?

Mr Henderson: Yes. From a sustainability point of view, 2025-26 is year 3 of our five-year strategy. We had planned to break even, but the autumn Budget put a large spanner in the works to the tune of almost £500,000. We have projected a shortfall this year of £386,000, but that is because we have grown our fundraising and retail side to try to offset the absence of 50:50 funding. However, there is a limited amount of runway with that, because, as I mentioned, households have diminishing discretionary incomes. While we are expanding shops, we are trying to offset the diminishing funding from the statutory side. That can last for only so long.

UK Hospice benchmarking shows that our average reserves are sitting at 5·8 months. The UK Hospice benchmarking average was sitting at about nine to 10 months. As I said before, the past two years in UK Hospice benchmarking across the sector have seen two back-to-back deficits for the group. That means that every hospice, as a collective, is eating into its reserves. The benchmark now sits at about seven months. Hospices have lost approximately three months' worth of reserves, because each deficit eats into the reserves. In essence, it eats into your savings. That can be sustained for only a certain period before you become insolvent. The support then no longer exists for all those families.

Mr Donnelly: The clock is ticking, effectively. The reserve is being eaten away.

Mr Henderson: Yes. That is correct.

Mr McCartney: We set a strategy two years ago. That was a really difficult time for us financially, so we had to be clear about what we did. In summation, the strategy is simple: if we do not break even, we have to look at rolling back services, because you cannot do what you cannot afford. That is the reality that we face. That is a devastating place to be in, because, typically, rolling back services to achieve savings to break even tends to be disproportionate to achieving the net benefit, because you will also lose some statutory income and potentially some fundraising income. It can be disproportionate, so that is not where we want to be.

Your point is well made about how small the amount of money is that would make a difference right now and put us on a trajectory whereby we could get a strategy across Northern Ireland that would lead to a sustainable funding model. It certainly is not sustainable now.

Mr Donnelly: Thank you.

My last question is for Gemma. Gemma, you mentioned the seven-day-a-week service. Time and again, we have heard about patients who cannot access anything after 5 pm on a Friday. If it is a bank holiday weekend, you are talking about not accessing anything until Tuesday. It can be quite a long time.

That results in inappropriate admissions to hospitals. The Ambulance Service has to take the patient to A&E, and they end up in a hospital ward. It occurred to me that, if you were able to offer services seven days a week, there would be quantifiable savings. Is that a part of your calculation?

Ms Aspinall: It is very similar. I will go back to the estimated bed-night cost that I used earlier. I stressed that that was an old figure: it was a very conservative estimate. The cost would be higher now. Were you to cost an ED attendance, it would be very similar. It would be easy to calculate that up.

Mr Donnelly: It would include the Ambulance Service.

Ms Aspinall: Yes, the Ambulance Service and ED attendance. The vast majority of ED attendances will convert into admission. It is very difficult to get somebody home instantly if they present in that manner.

One of the things to say is that vast numbers of people are being cared for at home. Despite specialist services not operating seven days a week, people can have their needs met very well by the district nurse key worker and by the out-of-hours GP service. When those needs become more complicated, however, and you need that extra input, that is where our service comes to life. Across the water, the development of seven-day services in England is now commonplace. It is very unusual to have a lack of that provision in such key services.

This is not difficult to quantify. We record every intervention, such as when we visit somebody at home, whether it be to reduce their pain, make recommendations about changes to medications or advise on the use of syringe drivers. Really, you are there to prevent or de-escalate a crisis. If you are not there when that happens, the only outcome is that somebody else has to pick it up. Ultimately, the patient will end up in a hospital setting.

Let us face it: the system is beyond creaking. I had the misfortune of needing to use the emergency department a number of weeks ago. I worked in an emergency department for nearly five years. It was still a real eye-opener. I could not believe how slowed down the flow is through the system and the significant levels of pressure that the staff are operating under. If there is anything that we can do to help to prevent that happening, we need to do it. That is the system side of it. On the people side of it, when somebody wants to be cared for at home, it is an absolute travesty to think that they might end up in and emergency department where they do not need to be. If we had the right system in place, somebody else could meet their needs. Let us face it: that experience would be entirely different. It is not because anybody sets out to deliver a less than optimum service, but, if you want to be cared for at home, you should be cared for at home.

Mr Donnelly: Absolutely. For somebody with palliative care needs to be brought into an environment that, as you say, is overcrowded, noisy and busy —.

Ms Aspinall: It is overcrowded and busy and potentially distressing in the last days of your life.

Dr Lundy: Moreover, there are times when those people's needs cannot be met. The staff may not have the time or the skills to be able to meet the patient's needs. It is not even that a patient has to go in there and it is a busy and noisy place. If the patient is put in a corridor, the staff cannot get to them. The nurses and doctors are so busy that the patient is just left there. A patient who is in a pain crisis at home and has nowhere else to go but an ED will not get the help that they need there. They are just moving to a different place. An ED is so badly the wrong place for our patients, and it is so unnecessary.

Things fall back to GPs, and we ask them to help to keep patients at home but they cannot do that. They do not have the time to spend with our patients at the weekend or out of hours. They are so busy as well. It is somewhere where we can help. We have the skills and the time. We can keep them at home and help them. That makes such a difference to patients and their families.

Mr Donnelly: Clearly, that space and the growth of that service have huge benefits for patients, their families and the whole system at large. Thank you very much.

Mr Robinson: My question is very similar to Danny's. On our last visit to the Children's Hospice, you very kindly presented to us, Trevor, and you gave us very stark figures: a funding gap to the tune of about £1·2 million. I wanted to ask you how that was addressed and how you intended to address the estimated £805,000 gap in funding. You gave Danny a pretty good response. On the back of that, as Danny said, in the grand scheme of an £8·4 billion Health budget, those figures are just not insurmountable, given the benefits that would flow from that money.

As the Chair said, it is good and positive to hear that the Northern Trust is a friendly and forward-thinking partner of yours. Like the Chair, I live in and represent an area covered by the Northern Trust. However, it begs this question: if it is a friendly and forward-thinking partner, why are the other trusts not? It begs another question: what is their response?

Mr McCartney: We have the same question, Alan, and we have not had an answer to it. We tend to go round and round in the same circles.

You are right, and Emma mentioned it earlier: the reality is that the right patient in the right place at the right time benefits everybody. We live in a world where "corridor nurse" is a job title. Typically, a palliative patient will end up in the corridor and probably not be cared for. Would it not be better to properly assess the need and the demand across all the trusts and properly put in place the funding for all hospices to make sure that we can meet that need? Thereby, we could avoid pain for the patients, put them in the right place of care and give them the right treatment for what is, essentially, an incredibly small amount of money, disproportionately so to the £8 billion or so that is the national Health budget for Northern Ireland. It would be a disproportionately large benefit for a very small amount of money.

Mr Robinson: Thank you very much.

Ms Aspinall: We have seen some small progress. From an adult community services perspective, we have two commissioning partners, of which the Northern Trust is one. Brian talked about all the benefits that we achieved in that rebasing of the contract. It was excellent partnership working, because we were on the same page in trying to provide the best possible specialist palliative care in the community. Our other commissioning partner helped to increase capacity across four of the teams that we deliver. Being able to improve that capacity was a key change. Unfortunately for us, the continued funding shortfall meant that we ultimately end up with another shortfall to fund from a hospice perspective in order to provide that. Although we have a small increase in capacity, we have not had the changes in funding to ultimately support our 50:50 delivery of care.

I have been at Northern Ireland Hospice for seven years. The community teams, the specialist teams, all our in-patient teams and everyone you meet are incredible. However, you feel as though you have been selling hope that whole time. We talk about gathering the data; we demonstrate our impact and outcomes; we turn up at our commissioning meetings; we sell that vision; and we show the impact of the services that we have. I find it incredibly difficult compared with the setting that I worked in across the water. There, if we could show the impact of a service, demonstrate clear patient outcomes and, actually, very cost-effective services, the commissioning changes were relatively quick and, I want to say, easy.

I have spent seven years working through that. It took a long time, but we have seen some good progress, and the Northern Trust changes are very significant. However, it becomes harder to sell that hope when you have people who come to deliver the best possible care every day. There is a huge pressure for us to maintain staff well-being and make sure that we avoid that moral injury. It is very different delivering a service where the outcome of your not arriving is that somebody could die badly. It is very different from the outcome where there may be an extra week, month or year for out-patient services, all of which are impactful. The staff find that very difficult. We need to talk about that, because the ability to retain what we already have gets harder and harder every year that we do not see changes.

The Chairperson (Mr McGuigan): That is a very good point to end on. I thank all of you for the visits, for providing us with evidence during our consultation and for coming before us today and answering our questions. It has been very informative and useful. I say this to all our witnesses: we hope that, when we produce the inquiry report, it does justice to the work that you do and the impact that you have out there. Thank you.

Mr McCartney: Thank you very much for your time.