Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Trevor McCartney, CEO of the NI Hospice and the Children's Hospice; Dr Clare White, consultant in palliative medicine; David Graham, paediatric palliative care network; and Professor Max Watson from Hospice UK. All four of you are very welcome. I hope that we did not rush you through your coffee. We will go straight to this important session. Thank you very much for sending in your opening remarks. I will hand over to you. Is there anything that you would like to add before we go straight to questions?

Mr Trevor McCartney (Northern Ireland Hospice): Will we go through the opening statements to begin with?

The Chairperson (Mr McGuigan): Yes.

Mr McCartney: Chair, Deputy Chair and members, thank you for the opportunity to return to the Committee and provide further evidence following your inquiry into access to palliative care services. I begin by properly thanking the Committee for the seriousness, persistence and continued support that it has shown throughout this work. The inquiry did so much more than produce another report: it gave patients, families, clinicians and hospices a voice. It kept a long-neglected issue firmly in public and political view, and your continued scrutiny matters now more than ever, because the real risk is that acceptance of recommendations is mistaken for delivery of change.

I appear today alongside clinical colleagues who will speak with authority about the clinical evidence, the economic evidence and the human reality of caring for people and families at the end of life. Dr Clare White will set out the clinical and economic case for specialist palliative care, including the potential impact on hospital deaths, bed days and costs in Northern Ireland. Professor Max Watson will speak to the wider clinical evidence and the human impact in a way that I know will be memorable. I will focus on the system issues: funding, commissioning, accountability, implementation, children's hospice care, the hospice role in the future model of care, and the practical steps now required.

All 27 recommendations from the inquiry are now accepted or partially accepted. That matters. It reflects the strength of the Committee's work and is a clear recognition that change is needed. However, recognition on paper is not the same as change in practice. That gap between acceptance and delivery is now the central issue. Warm words do not keep beds open, they do not sustain community specialist teams, they do not fund care for children with life-limiting and life-threatening conditions, and they do not provide the sustainable commissioning base that enables hospices to plan reliably for patients and families. Against that backdrop, we welcome the additional £1·6 million announced for hospices: £1·1 million for adult hospices and £500,000 for the Children's Hospice. It is important and it should help manage immediate risks to services. We hope that that commitment will be honoured quickly in practice, and not become caught up in the kind of process delay that has often characterised progress in palliative care. This is emergency funding in its truest sense. It is one-off, nonrecurrent support provided against a backdrop of chronic underfunding. It buys time. It does not create sustainability.

Emergency funding was needed because hospices have long been funded through a comparator that is fundamentally flawed. A general medical bed benchmark is not an appropriate proxy for the actual cost of delivering commissioned specialist palliative care. Specialist palliative care is not simply a bed; it is consultant-led, multidisciplinary and complex. It includes symptom control, psychosocial and spiritual support, bereavement support, family support, discharge facilitation, community outreach and crisis prevention. That is what hospices are commissioned to provide, and a benchmark that does not reflect that reality will always understate the true cost of care. I therefore welcome the Minister's commitment to review the old comparator and for officials to work with the independent hospice sector on a new approach. That process must be transparent, independently reviewable and grounded in the actual cost of delivery. It must also be linked, over time, to real inflationary pressures. It should never again be possible for a benchmark that affects the independent hospice sector to be applied without everyone being able to understand how it was calculated, what assumptions sit behind it and whether it can be audited. During the inquiry, even senior officials struggled to explain how the existing benchmark was calculated. That lack of transparency is deeply worrying.

The position for children's palliative care is even more concerning. Northern Ireland has only one children's hospice. It is a regional service with no alternative provider, yet, because of funding constraints, it is operating only six of 10 available beds. Statutory funding covers only 38% of costs, with the balance being dependent on charitable income and philanthropy. Children in Northern Ireland receive fewer nights of care than comparable benchmarks elsewhere in the UK and Ireland: around five to six nights, compared with 12 to 14 anywhere else. A business case was submitted for a seventh bed, following engagement with officials, but there is still no outcome from that and still no recurrent funding. The £500,000 emergency allocation for the Children's Hospice is welcome but does not answer the central question. What is the sustainable funding model for Northern Ireland's only children's hospice? Nor does it answer the question of why children here who have life-limiting and life-threatening conditions should receive only around half the care that they would receive elsewhere in the UK or Ireland when there are four empty beds that could so easily be commissioned.

This is not just a hospice issue; it is a whole-system issue. Clare will set out the economic case in detail, so I will not repeat those figures, but the Committee's report clearly showed the imbalance. In 2022, the estimated healthcare expenditure for people in their last year of life was around £350 million. Of that, 56% — approximately £195 million — was spent on emergency admissions. That is £195 million on palliative patients in emergency admissions. By comparison, hospices received only £14 million, which is 4% of that. That is not a balanced system. Too much resource is flowing into crisis and too little into prevention, planning and support in the community. Palliative care is not a charitable extra or a soft add-on to the health service; it is an evidence-based intervention that improves outcomes for patients and families and reduces avoidable pressure on acute services.

Underfunding palliative care is not a saving. It is a false economy. That is why the recommendation for a regional independent clinical lead for palliative care is so important. It should be treated as an immediate priority. A clinical lead is not an administrative nicety; it is the foundation for defining what care is required across Northern Ireland, what "good" looks like, how generalist and specialist services connect, and how care delivered by trusts and the independent hospice sector works seamlessly around the patient. Without that clinical leadership, we risk the continuation of fragmented planning, inconsistent pathways and unclear accountability.

I will also address the baseline scoping exercise from a system and data perspective. Clare will speak to the clinical question of what scoping must achieve if it is to improve patient care. My concern is more basic. The Department's updates show that the statutory data that is currently available is not strong enough to carry the weight that is now being placed on it. The issue is not simply that the data is untidy. Across the statutory system, patients are not being consistently recognised, defined, coded and recorded as palliative. A GP register may tell us that a practice has a palliative care register, but it does not provide the patient profile needed to understand complexity, need, activity or outcomes. District nursing, as great a job as it does, is a core part of palliative care in the community, yet the relevant data is not currently available in a form that allows it to be properly analysed. Even within community specialist palliative care, information is not directly comparable across contracts, because the services have been commissioned and, therefore, reported differently. That is not a small data gap. It is a structural weakness in the evidence base. No matter which statutory dataset we look at — trusts, GPs or district nursing — patients are not being effectively and reliably recorded as palliative in the way that is needed to plan services. Without a significant change in approach, we risk building the next palliative care strategy on data that does not reliably identify who needs palliative care, what they need, what care they currently receive or where the gaps actually are. Using such a flawed foundation would be a fool's errand.

By contrast, the most robust and reliable data appears to sit in the independent hospice sector, because hospices are already recording the patients whom they serve, the activity they deliver and the complexity of that care. That data should not sit in the margins of the exercise. It should be central to the Department's understanding of need, cost and future commissioning. Confidence in Encompass reporting is also limited. In practice, the move to Encompass has made some of the required data less available rather than more available. The risk register for the baseline work is a sea of red. We cannot allow a flawed data exercise to become the next reason for delay.

The continuing absence of a palliative care strategy has been a major weakness. The Living Matters, Dying Matters strategy is over a decade out of date. The Committee has recommended a new regional strategy, and that must now be delivered at pace, with the independent hospice sector around that table from the start. We welcome the commitment to establish a dedicated palliative care policy function in the Department. That is long overdue. However, it must have sufficient authority, resources and clinical leadership to deliver change, not simply coordinate further discussions. In the absence of any completed regional strategy from elsewhere, the Hospice Alliance has commissioned a detailed piece of work setting out how palliative care need could be met across Northern Ireland. We intend to launch that report around Palliative Care Week in September or shortly afterwards. So far, we have received comprehensive political and professional support for the approach. This is not intended to cut across departmental work. It is intended to make a constructive, evidence-based contribution where no alternative regional plan currently exists. We would welcome the Committee's support for that work when it is complete, and we intend to share the first drafts with the Committee as they develop.

Finally, I will touch on the neighbourhood model. Hospices are already the very definition of neighbourhood care. We deliver care in communities, in people's homes, in hospice beds and alongside families at their moment of greatest vulnerability. We help avoid inappropriate hospital admission and support earlier discharge. We are exactly the kind of partner that the neighbourhood model says that it wants, but the funding structures remain unclear. It is not yet clear how the new integrated neighbourhood teams model will secure funding, how that funding will be strategically applied or how independent providers such as hospices will be commissioned within that model. If hospices are central to neighbourhood care in principle, they must be central to its funding and planning in practice.

Chair, in closing, our intention is constructive. We want to work with the Minister, the Department, the strategic planning and performance group (SPPG), trust colleagues and the Committee for the benefit of patients and families and for the benefit of the wider health service. We all exist for one purpose and one purpose alone: our patients. However, the time for general acceptance has passed. What is now needed is clear delivery; a transparent, cost-based funding model; a recurrent solution for all adult and children hospice services; the urgent appointment of an independent clinical lead; a properly resourced policy unit; and a strategy that turns the Committee's recommendations into measurable change. Patients and families do not get a second chance at end-of-life care. The system should not get another chance to delay.

Professor Max Watson (Hospice UK): Chair and members of the Committee, thank you again for the opportunity to come before you. First, I acknowledge the 10,000 people who have died since your recommendations were given to the Department, amongst whom were 2,000 patients who died in that time without being able to access palliative care, and their families.

I have been a doctor for 42 years, most of that time in palliative care in this country, around the world, in clinical, academic, teaching, research and publication, and in advocacy work with Hospice UK. I currently hold posts in the Western Health and Social Care Trust, clinically; in RQIA, with Project Echo; in Bangalore, in teaching; and in Princess Alice Hospice in Esher. Like Trevor, I begin by expressing thanks to the Committee for the seriousness, time and energy with which it has engaged in this work. Your 27 recommendations reflect the evidence that you gathered and your clear commitment to trying to improve care for some of the most vulnerable people in your constituencies. I also acknowledge the tone of engagement that has emerged from recent discussions with the Department of Health. In meetings and conversations with the Chief Medical Officer, the Chief Nursing Officer, the Chief Pharmaceutical Officer, Jim Wilkinson, Gearoid Cassidy and other senior officials, there has been welcome willingness to engage, acknowledgement that current services are not sufficient for present or future need, and an expressed desire to work in partnership with providers and the voluntary sector.

It is important to recognise genuine goodwill when it is shown. However, goodwill is not implementation, and, for many of us who have spent our professional lives working in palliative care, there is an unavoidable sense of déjà vu. We have heard many, many warm words before. The challenge is not that we lack for warm words: the challenge is that we struggle to see warm words converted into sustained improvement. The Department's response contains much that is welcome, with so much acceptance of your recommendations, yet the response stops short of telling us precisely when implementation might happen and what will actually be new. Using software analysis, I found that 60% of the Minister's response was cut and pasted from other departmental documents. We risk drifting back into the glacial processes in which the Department is so invested: processes that are open to being interpreted as procrastination until purdah falls, a new Health Minister is appointed and a new Health Committee removes the imminent pressure. With fiscal uncertainty, it is easy to understand why that cautious approach has become the default position. However, I believe that both you and the Minister want more, and thousands of patients and families need more. They need more action.

Your focus today is on recommendation 6. In the Department's response, many of the recommendations are effectively referred back to this baseline scoping exercise. That really concerns me, and not because scoping is unimportant. Robust assessment of need is essential if we are to address inequity and deliver services properly, as Trevor has said. However, there is a difference between using evidence to guide action and using evidence-gathering to substitute for action. The Committee is aware that the scoping exercise has already been subject to repeated delay. Timings have shifted. Completion dates have moved. Significant questions hang in the air about whether two essential remaining and, as yet, uncommenced phases of the scoping process can be completed within the available capacity and resource. It has become a Sisyphean cycle of endless processing, which could take so long that, by the time that it is completed, it will need to be repeated. The scoping also takes no account of Encompass and the terabytes of data that we now have on palliative care delivery across our health system: data that, with good management, could provide a real-time assessment and dashboard of what is currently really happening in palliative care in the acute sector at the moment. That would give us the opportunity to monitor change and improvement in real time. We need the leadership and courage to move from asking what the problem is to deciding what we are going to do about it, based on good enough evidence rather than waiting for the perfect evidence. While we continue to scope, review and consult, the demographic reality continues to change rapidly, but care delivery falls ever further behind. Demand is not waiting for the completion of another scoping exercise: it is already here.

The most important development since the Committee submitted its recommendations is scientific. The economic modelling for palliative care has been changed by a body of work recently published, as Clare will highlight to you. The evidence now demonstrates that palliative care improves outcomes for patients while simultaneously reducing costs across the whole system. Is the Committee aware of any other economically viable intervention that has the proven evidence of reducing the number of ambulances that are waiting outside our A&E departments and the pressure on our acute hospital beds? The evidence is there. I want to be optimistic. We can achieve much, and most, through collaboration and building working relationships that deliver real change for patients and their families.

I also ask the Committee to think beyond this mandate. I speak here from personal experience. When I began this palliative advocacy work, I had a full head of hair. The greatest risk facing us is frustration, exhaustion and giving up because it is such a slow process. The risk is that recommendations are accepted but not funded, timelines are extended, elections intervene, priorities change and attention moves elsewhere. Before the end of the month, your focus will rightly pivot to Muckamore and urology. However, the care of thousands of people who are approaching the end of life will still need to be sustainably improved.

Having spent many sleepless, disturbed nights since the publication of the Department's report, I seek the Committee's indulgence to finish with a poem that captures those long hours of angst.

The Chairperson (Mr McGuigan): Thank you.

Dr Clare White (Northern Ireland Hospice): Good afternoon, Chair, Deputy Chair and members. Thank you for inviting me back to the Committee. I have been a consultant in palliative medicine, working between the Northern Ireland Hospice and the Mater Hospital since 2010. I have worked in palliative care since 2004.

I thank the Committee for its 'Report on Access to Palliative Care Services' and for the work, time and attention that went into it. Those of us who work in palliative care felt genuinely listened to. We felt that the Committee had understood what we do, why it matters and why the current arrangements are not good enough for our patients and their families. The report was thoughtful and practical, and, if implemented, it would significantly improve palliative and end-of-life care across Northern Ireland. We welcome the fact that the Minister accepted many of the recommendations and the recent one-off £1·6 million emergency funding for hospices, but we remain deeply concerned that there are not yet the recurrent funding, delivery plan or implementation structure needed to turn the Committee's report into real change for our patients.

Palliative care must be seen as a core part of the NHS. We are told that the NHS is "from cradle to grave", yet it often excludes the grave. Palliative care can no longer be treated as something that is sustained by coffee mornings, fun runs and the generosity of local people. Charitable support is important, but it should not be the foundation on which essential healthcare depends. In my 22 years of working in palliative care, I have seen services develop organically and opportunistically, often because committed clinicians saw a need and tried to meet it. That dedication has achieved a great deal but is not a substitute for strategic planning. Without proper oversight, services have grown unevenly; provision is not balanced, access is not equitable; and funding has too often been ad hoc. The investment in and expansion of palliative care services has lagged behind other medical specialties that have benefited from clear strategic plans and funded implementation. For example, oncology services in Northern Ireland have seen major investment, including in the North West Cancer Centre; growth in specialist staffing and training; and a comprehensive cancer strategy. That investment is essential and should be welcomed, but the question is this: why has palliative care not been given the same strategic priority, when it supports patients with advanced illness across every trust area?

The moral case for palliative care is clear, as it has been for many years: to care for people who are some of our most vulnerable; to reduce their suffering; and to allow them to die peacefully and with comfort and dignity. Recent evidence now makes the economic case much clearer as well. Although less than 1% of the population dies annually, people in Northern Ireland who are in the last year of life account for an estimated 10% to 30% of health and social care resources, much of which is driven by acute hospital admissions. We know that most people with serious illness would prefer to be at home if the right support were available, yet many repeatedly attend hospital in the last months of life, and hospital remains the most common place of death in Northern Ireland. Cochrane reviews and other meta-analysed trial evidence have found that both home- and hospital-based specialist palliative care increases the odds of dying in your own home and improves quality of life, but, until now, we have had no evidence of whether that was cost effective. Since the Committee published its report, however, we have that evidence.

Recent health economic modelling in England shows that specialist palliative care improves outcomes for patients while reducing costs across the wider healthcare system. Access to home-based specialist palliative care was associated with a reduction in cost of about £7,908 per person who dies, while improving their quality of life. Access to hospital-based specialist palliative care reduced costs by around £6,480 per person who dies, also while improving their quality of life. The increased costs associated with people being at home were more than offset by the money saved through their reduced time in hospital. The same modelling estimated that, in England, specialist palliative care supports more than 20,000 people a year to die outside hospital, saving approximately 1·5 million hospital bed days and reducing health system expenditure by approximately £817 million annually.

That evidence is directly relatable to Northern Ireland. Our structures for home- and hospital- based specialist palliative care are comparable enough to allow us to estimate the scale of the potential benefit here. While there are limitations to the study, extrapolating the data to Northern Ireland, using our population size of 1·93 million as a basis, finds that access to home-based palliative care should lead to 579 fewer deaths in hospital and 33,860 fewer hospital bed days, with a lowering of NHS costs by approximately £18 million per annum; and that access to hospital-based palliative care should lead to 132 fewer deaths in hospital and 16,645 fewer hospital bed days, with a lowering of NHS costs by approximately £9·6 million per annum. If those two figures are combined, it gives Northern Ireland an estimated 711 fewer deaths in hospital per year, over 50,000 fewer bed days utilised, and a potential saving of over £27 million, just by funding specialist palliative care appropriately at home and in hospital. To put that in context, 50,000 bed days is 137 beds not being occupied each day, which is the approximate equivalent of the entire Mater Hospital capacity. That is not a marginal issue; it is system-level capacity from investing in specialist palliative care in hospitals and the community.

All of that is even before we fully account for the impact of specialist inpatient hospice beds, which care for the most complex palliative care patients. Those are people who otherwise may be at home with uncontrolled symptoms, or in emergency departments and acute wards for prolonged periods of time because the right specialist support is not available. Specialist hospice beds improve quality of life, manage complex symptoms, support families and help people to live as well as possible until they die. Hospice services across Northern Ireland already provide extensive care. In 2024-25, hospices delivered approximately 43,000 specialist nurse and doctor home visits, 14,000 outpatient appointments and 19,000 inpatient bed days. Those services are not peripheral; they are already helping to prevent avoidable hospital attendance, support earlier discharge, manage complex symptoms and provide care that the wider system would otherwise struggle to deliver. Further health economic modelling is needed to clarify the impact of specialist inpatient beds, as that was not included in the aforementioned study.

We also need to recognise the scale of unmet need. Estimates suggest that around 3,000 of the approximately 11,300 people in Northern Ireland who die each year with palliative care needs do not access palliative care services. That means that roughly one quarter of those who would benefit from palliative care at the end of life are not receiving it. Ensuring that those people are identified and get access to palliative care when they need it will result in better care, as well as the more effective use of healthcare resources.

Specialist palliative care saves money by supporting people earlier; managing symptoms better; preventing avoidable crisis attendance at emergency departments; reducing unnecessary hospital and care home admissions; supporting faster discharges; and helping patients and their families to make informed decisions about what care is appropriate and where that care should happen. In hospitals, specialist palliative care helps teams to recognise when illness is advanced, avoid burdensome investigations or treatments that will not benefit the patient, manage distressing symptoms and support discharge planning. In the community, specialist palliative care helps people to remain at home when that is their wish, gives families confidence and provides rapid clinical support when needs change.

There are already practical models in Northern Ireland that show what could be done. The Belfast palliative care hub responds rapidly to changing patient need and can help to avoid crisis hospital attendances by same-day intervention at home by a specialist nurse or consultant. Specialist palliative care input into emergency departments, such as the model in Antrim Area Hospital, can help people to return home quickly where possible, and, where admission cannot be avoided, expedite symptom control and reduce length of stay, hence saving money. Expanding services from five days to seven days, and ultimately ensuring 24/7 support, would make a major difference to patients, their families and the wider system. Palliative care should be understood as not only compassionate care but excellent value care. Indeed, it is one of the most credible ways in which to support the neighbourhood model, which is about moving care closer to home.

I will talk briefly about recommendation 6 of the Committee report, which Trevor has already covered in more detail. We need to know what services are available, how they are funded and what is needed, based on Northern Ireland demographics and patient preferences. However, for any scoping exercise to be relevant, it must have an outcome.

The current scoping exercise has demonstrated how much palliative care has been neglected over decades, as it cannot access reliable data and is just a narrow-lens snapshot at one point in time. If not matched to population need, the scoping exercise is very limited in its relevance to developing services. Patient and service needs cannot be based just on extrapolated population data; the situation is much more nuanced than that. In hospitals, a cancer centre will likely have a much higher level of specialist palliative care input need than a district general hospital. In the community, geographical distance is important to determine the ability of specialist nurses to visit patients in their own homes or for less-well patients to travel to clinics. Older people with hearing and visual impairments are likely to take more time than people without communication barriers. There are many variables that scoping must consider to make it of value when it comes to developing services that meet patient need.

Over the years, clinicians and managers have invested huge time in working groups, reviews and reports in the hope that they would improve patient care. Too often, those documents have not led to meaningful implementation. That is demoralising for the people involved, but, more importantly, it is a missed opportunity for patients and their families. The Committee's inquiry has created a real opportunity. The Department's response, the emergency funding and the new economic evidence all point in the same direction: palliative care must now move from the margins to the centre of healthcare planning. My ask to the Committee is therefore simple. Please keep pressing for the recommendations to be funded, implemented and measured. Please ensure that specialist palliative care is treated as a core part of the health service, not as a charitable extra. Please keep asking the practical questions. What will be delivered? Who is responsible? When will it happen? How will patients and families know that care has improved?

We have a chance to improve care for patients and families across Northern Ireland while reducing pressure on hospitals and supporting the wider health service. The moral case is clear. The clinical case is clear. The economic case is now clear as well.

The Chairperson (Mr McGuigan): Thank you very much, all of you. That was very impassioned and very useful. I think that it is the first time, in my role as Chair, that I have heard a poem. English literature was not my greatest subject at school, but my old teacher would have been very impressed by that.

I want to start my contribution by assuring you, because —.

Dr David Graham (Paediatric Palliative Care Network): Do you mind if I say a few words?

The Chairperson (Mr McGuigan): Apologies. I thought that we were finished. Sorry.

Dr Graham: I will not be long.

Chair and Committee members, thank you for the invitation to come along and for the opportunity to give an update. I thank you for your report and its recommendations. I am here as the lead for the paediatric palliative care network and as someone who works week in, week out and day after day in Northern Ireland with children and young people with life-limiting conditions and palliative care needs, and their families. Your 'Report on Access to Palliative Care Services' sets out a credible, evidence-based road map for change. For children and young people, it is not a "nice to have"; it is the difference between a system that supports families to live as well as possible and one that leaves them navigating crisis alone. My concern is that, if your recommendations are not fully implemented, the gaps that you have exposed will not reduce but become more entrenched.

The first issue is place of care and place of death. Families repeatedly told your inquiry that they wanted their child to be cared for and, when the time comes, to die in the location of their choice, which is usually at home or in the Children's Hospice. However, because of limited 24/7 community nursing, patchy out-of-hours medical support and constrained hospice capacity, too many children still receive end-of-life care in settings that are not what they wished for and that, at times, are less than ideal. I draw your attention to the 'Built to Last?' report that Together for Short Lives released last year. It showed that, in Northern Ireland, only one health and social care trust even partially meets the standard for 24/7 end-of-life care at home for children, and that families effectively face a postcode lottery when it comes to access to specialist support. If your recommendations on community services, hospice funding and regional standards are not delivered, we will continue to see children spend their last days not in the place of their choice, which could lead to families carrying preventable trauma into bereavement.

Secondly, in relation to the specialist palliative care workforce, children's palliative care is not simply scaled-down adult palliative care. It requires specialist skills in symptom control for complex conditions; communication with children at different developmental stages; and support for patients, their parents and their siblings through very long illness trajectories. The 'Built to Last?' report describes significant workforce shortages across the UK and an urgent need to expand training posts in paediatric palliative medicine and community children's nursing. That report warns of a workforce in crisis. In Northern Ireland, we have a small number of exceptionally committed clinicians and nurses who are thinly spread. At present, there is no fully developed tertiary-level consultant post in paediatric palliative care to provide leadership in complex case support and regional coordination. Without implementing your recommendations on an all-age palliative care clinical lead and building specialist teams, we will not be able to recruit, train and retain the workforce that children and families need. Developing and properly resourcing a tertiary-level paediatric palliative care consultant role that is linked to the regional network and the Children's Hospice would be a tangible step towards changing that reality. I welcome the acceptance of the need for a regional palliative care lead, but I emphasise that it is very important that, when it comes to that role, children and young people's care is not diluted amongst the adult world.

Thirdly, on funding and sustainability, Trevor covered the hospice funding issue, but the Department's recent one-off allocation of £500,000 to the Children's Hospice is welcome. However, without the nonrecurrent funding that you recommended, it will not allow services to plan, staff safely or expand respite, outreach and other potential services. If your proposals for a staged move to full sustainable funding are not followed through, we risk bed closures, reduced respite and the loss of highly skilled staff to other parts of the system.

Transition represents a critical pressure point. That problem will become more evident in Northern Ireland, as reports show. The Together for Short Lives transition pathway sets out the need for multi-agency planning, involving health and social care, education and hospice services, well before transfer, so that young people move into adult care with continuity, rather than fall off cliff edges. Research on transition in paediatric palliative care stresses that poorly managed transition is associated with gaps in care, emergency admissions and distress for young people and their families. Your recommendation for a regional framework and commissioning model that covers young people as they move into adult services is therefore not an optional extra; it is essential to prevent avoidable crises when families are already under enormous strain.

I will touch on the important question of legislation. The Department has argued that the existing general duty to commission health and social care is sufficient for palliative care and that no specific legislation is needed. International experience suggests otherwise. For example, Canada passed its framework on palliative care in 2017. That framework made training, data and equitable access explicit national priorities. The Canadian Government's 2023 progress report shows that, since 2017, more Canadians have received palliative care and died at home with support and hospice capacity has grown. The lesson from Canada is not that one thing can solve everything — it does not, and Canada still has gaps — but that legislation has created a clearer national direction; a duty to report publicly on progress; and a platform for investment in training, data and community-based care. For a small jurisdiction such as Northern Ireland, targeted palliative care legislation, such as your report envisages, could do the same and turn warm words into enforceable duties, especially for children and young people, whose needs can otherwise be sidelined.

I emphasise that the implementation of your recommendations is not simply about avoiding harm but about building a system for children that is genuinely built to last. Specialist paediatric palliative care, led by a tertiary-level consultant and a stable multidisciplinary workforce and backed by sustainable hospice funding, 24/7 community support, transition planning and clear statutory duties, will allow more children to live as well as possible for as long as possible and, when the time comes, to receive care and die in a location of their choice with dignity and support.

If we fail to implement what you have set out, families will continue to be asked to carry an intolerable share of the burden, and scarce resources will continue to be spent on unavoidable emergency care instead of on planned, community-based hospice care that we know works. I urge the Committee to maintain strong scrutiny of the Department's response; to press for a clear, costed implementation plan with timelines; and to keep children and young people at the forefront of that discussion.

The Chairperson (Mr McGuigan): Thank you very much. I will try again to give some assurance. When the Committee exhaustively took evidence through its inquiry process, we said that we hoped that our inquiry report would not let you down. I give you the assurance that, now that we have completed our inquiry, we do not intend to let that rest until its recommendations are implemented: we will do whatever we can. I give a commitment, as Chair of the Committee, that our inquiry report will be extremely high up the agenda for the remainder of the mandate. At the end of the mandate, each Committee will set out a legacy report to hand over to the next Committee. I assure you that this issue will be handed over to whoever is elected and whoever is on the next Health Committee to, hopefully, take forward to ensure that. That will be the Committee's legacy.

Your poem was about the Minister's legacy, and I share all your concerns. When we last took evidence from departmental officials, I got the sense that the Department intended to put the issue on the long finger — or to procrastinate, to use your word — and delay until after an election. I hope that, when we took that evidence from officials, we gave the Department the impression that we will not accept that. Your visit today is evidence that we will not accept that. It is not for a Sinn Féin MLA to give a UUP Minister advice, although the UUP probably needs somebody to give it advice at this minute in time, but I have always believed that this is a legacy for this Health Minister, who is not going to stand again. I sent the message, through the Committee, that this issue has cross-party support. Nobody from any political party will argue with the Health Minister if he elevates and promotes the 27 recommendations that the Committee has given to him. He will have the full support of the Committee and of the political parties of members of this Committee. To do that would be a good legacy for any Health Minister, over and above the fact that it is just the right thing to do.

We heard stark evidence today and over the period of the inquiry. The clinical and economic evidence is clear, yet services remain underfunded and inconsistent. I totally agree that we no longer need to recognise the problem: we have identified the problem and we have identified solutions, so we need to see delivery.

My role, and the role of the Committee, is to scrutinise and interrogate evidence and to ask questions. We did that during the inquiry, and I do not intend to ask you any difficult questions today, but I will cover briefly a couple of things that I believe are important because palliative care is a crucial aspect of our healthcare for people who are at their most vulnerable time. As you outlined, we are currently fundraising to provide that care, and that is an unacceptable situation.

It would be useful if you could set out in simple terms, for the people listening to the Committee, the kind of services that would be in danger without recurrent funding and the kind of services that you can provide for people. I was kind of taken aback by the figures. Sometimes, we need to hear the figures. Max said that 2,000 people have died without receiving palliative care since we produced our inquiry report. That is shocking; it shocked me. We need action before another 2,000 people die without receiving palliative care. We have been clear that we believe that the Department is not funding palliative care and hospices to the extent that they should be funded. Briefly, what services could you provide with more funding? Which of the services that you currently provide could be in danger without recurrent funding?

Mr McCartney: The overall aim of the strategy that we are working on is to have and hold the patient. That means having the kind of services that can hold on to that patient 24/7, 365 days a year. At the minute, we cannot do that, because, in some cases, services are from 9.00 am to 5.00 pm, five days a week. We want to have out-of-hours services and care for patients, and we want to develop community services, but if that requires charitable funding, the simple fact is that there is not enough of it out there. We will not be able to do that by charitable fundraising. We will need a cohesive strategy and plan that is backed with appropriate funding to do that.

As Max and Clare said, one of the biggest issues with unmet need is that sometimes it is not known to us. That is a reality. The infrastructure and the systems do not look at patient journeys to help us understand where and who those patients are and how we access and care for them. The biggest frustration that we all have is that so much can be done that an average health economist looking at it would see the counterfactual, which is that, if those services are not delivered, it is a statement of the obvious to say that the demand will fall back to acute services, where patients will not receive the care that they need, the acute service will be blocked, and flow through the acute service will be impeded.

Professor Watson: When it comes to putting the patient right in the centre, adequate palliative care across our system would allow us to ask the key question: what would you want in the event of coming to the end of life? That way, we would not end up with people defaulting into accident and emergency departments or receiving care that they would not have wanted. Palliative care allows us to be a lot more patient-centred and, by being patient-centred, to relieve not just the system but the distress of families who witness people dying inappropriately in the wrong place at the wrong time with the wrong care.

The Chairperson (Mr McGuigan): I do not want to steal Diane's thunder, but she has often compared one service with the maternity service. Imagine 2,000 children being born without appropriate care: it would be totally unacceptable.

In children's services, six out of the 10 beds in the Children's Hospice are operating. Explain to us what that means for families and whether children who could get care are not getting it because of that funding issue.

Mr McCartney: That is exactly the case. It is an equity issue. Northern Ireland is the only one of the UK regions and the only part of the island of Ireland where you will get only five or six nights' care. Anywhere else, you will get 12 to 14 nights. That is what is expected and what is supposed to be delivered. When you operate only six beds for 300 to 400 families who absolutely need that service, you will never meet the need. That has real consequences for families and children from further away. Once upon a time, we had what we called the one-hour-plus bed, and children from Fermanagh or further away were prioritised going into that bed. The Department closed that. That means less provision, and you end up in situations where, by the time that a family arrives, having decamped to the service, it is nearly time for them to go again, because they have only a few days and they like to spread them out through the year. That is not an acceptable position.

A study was done that clearly showed that every £1 invested in children's hospice services generated £6·43 in economic benefit simply because those families tended to become healthier and more economically active, and less time was lost to work. It was a statement of the obvious, but that seems to have been largely lost. In the Children's Hospice, we have four beds that we could stand up very quickly that would meet that need. We even have the potential for foreign direct investment to help support that, but we are in the situation that we are in because government has not stepped up.

The single biggest frustration that I have is that we have had so many false starts. We have had debate after debate. By the end of March, the Department was supposed to have completed a benchmarking study that would have allowed us to confirm that we were value for money. That would have been the basis for opening the remaining four beds. We were told that that benchmarking piece had not been done, but we were then summoned to a meeting in the Department and shown that it had been done. It showed that we are very good value for money, and we knew that anyway. However, as the can gets kicked down the road, families are still waiting to get into the service, and progress is not made. I made the point in my opening statement that the talking and activity with the illusion of progress needs to stop, and it needs to turn into something that will make a difference for families. It can easily be done because money invested in hospices can be turned around into a service very quickly.

The Chairperson (Mr McGuigan): The Department will be back before the Committee on 3 July. If staff are listening to the session, they need to come prepared to answer our questions on that.

Mrs Dodds: Thank you for the presentation. We are all frustrated. The Department does many things well, but it does process exceptionally well. We are afraid that the process will take over and we will not see outcomes, and that is a big problem. The Chair is right: I often say that we would never allow childbirth to happen without a plan, but we allow people to die without adequate plans, and that is an appalling situation.

David, you mentioned legislation, and I looked at the amendment made by Baroness Finlay in England, which seemed to make hospice and palliative care a core part of the NHS. Is that what is necessary here, or is something wider and deeper needed?

Dr Graham: I am not an expert in the area. I spoke to the consultant who led the campaign for the model that was introduced in Canada, which made major changes to the paediatric palliative care model and drove it forward. People were held much more accountable. I am not sure of the exact nature of the English model. Max might know more about that.

Professor Watson: I worked a little bit with Ilora on that model, and we had high hopes for the Bill when it passed. We thought that it would become compulsory for —.

Mrs Dodds: It would lead to commissioning.

Professor Watson: For commissioning. It seemed that the commissioners were able to fudge it by saying, "We are doing palliative care. We support our GPs and district nurses". The actual benefit of the legislation has been watered down, and it has been very disappointing. A lot of work went into the legislation for exactly the reasons that you raised, and Ilora is well known for highlighting the inequity of having a service for people at the end of their life that is out of sync with the service that is available at other times in their lives.

Mrs Dodds: I have a few specific questions. The Department said that it will start the process of recruiting a clinical lead for palliative care. What is your understanding of the timeline for the process? How long should it take versus how long the Department thinks that it should take? How can the Committee use its influence, particularly on 3 July, to tell the Department that we want it to be delivered? It is the least expensive part, but it could lead to a change. Can you elaborate on that?

Mr McCartney: My latest conversations with the Department mentioned timelines of six months to a year, and that is unreasonable. The post could be recruited for in two to three months. I asked about the delay, and officials mentioned that they were reviewing job descriptions for the post. There are plenty of job descriptions from across the UK and Ireland for exactly that role. When the role operates effectively, it will tell us what good practice looks like and how we can best develop the services to have and hold the patients; without that role, it becomes very difficult. If the Department is setting up a new unit to look after palliative care, it is tantamount to ridiculous that no clinical lead has been in the middle of the process from day 1. Pressure should be applied to the Department to move very quickly on that issue.

Professor Watson: If the Department wanted a job description, it could have one here in an hour from England, Scotland or Wales, which also have clinical leads. It is not a full-time job; it is probably two physician associates (PAs).

Mrs Dodds: OK. Reviewing a job description could mean anything. If there is are things that can be delivered quickly, that seems to me to be one of them. There is no reason why they cannot get on and do that. That is, perhaps, something for us to take up.

I know that I go on a bit about the scoping exercise. That seemed to me to have been announced to the Committee, I do not know when — about a year ago or more. It felt like, "Let's get something that we can talk about to the Committee". That may be harsh, but I believe that that was the value that was put on it. Now, you are saying — I have written it down — that the scoping exercise cannot be delivered. We had a lot of warm words about it being delivered and that part 1 of the exercise, which is to do with existing palliative care, would be delivered and ready for us in a matter of weeks.

Mr Robinson: In June.

Mrs Dodds: In June. Well, we are in June. I wrote down what you said, which was that there was such:

that you could not deliver the scoping exercise. Why on earth are departmental officials wasting their time and ours talking about a scoping exercise for which, you say, there is no data?

Mr McCartney: When you look at the latest developments in there, you see that there was work being done by the Department, with the trusts, to confirm once and for all that the data was not available in the systems. That has just come back to say that it is not available in the systems. No matter what way you look at it, that will not gather the data as defined. I sit on the project board for that, and Liz Cuddy, the CEO of Evora, is the co-chair. We have acknowledged now that there needs to be a reset. We need to pause that and look to the Department to produce something that will deliver an outcome that we can use going forward, because this is not it.

There are three aims. The first aim is to understand the services that are out there and who uses them. The second aim is to identify the population need that would dovetail into that. The third aim is to get the service-user feedback coming back from that. If you look at the risk register, you see that it clearly says that, because aim 1 is, essentially, fatally flawed, aims 2 and 3 cannot progress. If you take those three aims together, they are exactly what is needed to start a strategy. To bring that full circle, if you do not have any of that, you cannot develop a strategy. That will result in delay, and we cannot afford that, so we need an alternative.

I want to make it clear that we want to work constructively with the Department to produce something. We believe that there are ways to do that, which is why we are developing a strategy ourselves. Sometimes, you need to call it and say that it will not work that way; let us find another way.

Mrs Dodds: Just to be clear, before the officials come back, has the Department now called time on it and said, "We do not have the data to finish this. We do not know what is out there because we have not recorded it ever or in a way that is usable for the purposes that we want it for"? Can we take it as read that the officials are not going to come back and tell us any more than that?

Mr McCartney: The Department has agreed to produce a report to confirm those findings and bring those back.

Mrs Dodds: OK. This fascinates me. We have spent a year and a half being told nonsense about a process into which the Department is paying millions of pounds. It should be doing much more, but it is paying millions of pounds into that process. People love the hospice movement and support it — it is one of the great movements of our time — but the Department cannot tell us what it is doing or getting for the money that it spends. Is that the nub of it?

Mr McCartney: If you were looking for an output at this stage, you do not have one. If you were looking for a way forward to produce an output, you do not have that either. We need to reset that. It is not that that could not be done; it could. Max will know a way to potentially achieve things such as that. A clinical lead in place would have ideas about how it could potentially be done, but that was absent.

Mrs Dodds: If we keep on doing that, will we waste more time?

Professor Watson: Of course.

Mrs Dodds: Will it be more process and more talks and more meetings?

Professor Watson: The scoping seemed to have three legs: one to be delivered in June and two other legs that, the Public Health Agency said, it could not deliver on when it last spoke to you. It seems to have been a flawed process, but why do we not turn it on its head and look at where we have data? We did not have data before, but now we have gigabytes of data in Encompass. Let us develop the tools to interrogate that data to provide a snapshot of what is happening in palliative care across hospitals, accident and emergency departments and the Ambulance Service.

I appreciate that that is not the whole system, but it would give us some concrete data, and, if we then implement change, we can see whether that decreases the number of people coming into casualty in the last hours or days of life. We have data now; can we get the skills? Danny, you talked about health economists. We need a health economist's view. While we are latched onto just one year or one cycle, we miss the potential to make strategic change to the whole system by addressing palliative care need.

Mrs Dodds: Chair, if I may ask one more question, I promise that I will move on. Really, it is about funding for the hospice, so £1·6 million is only to plug a hole and keep you there. The last time we talked, Trevor, you said that 25% to 30% of funding for palliative care came from the Department and the rest was delivered through fundraising activities. I think that that is a ratio of £10 million to £12 million versus the other £30-odd million.

Mr McCartney: About £13 million in total —

Mrs Dodds: My maths are not the best.

Mr McCartney: — but the hospice sector is worth about £40 million, so the vast majority of it comes from fundraising, philanthropy, commercial activities such as shops and multiple other things.

Mrs Dodds: You say that that is still not enough. We say that the Department should move towards at least 50% of funding and, ultimately, traverse the gap to make that inescapable funding in the National Health Service. At the same time, that fundraising will provide enormous amounts of extra relief for people in the most vulnerable times of their lives. Given that £1·6 million is just a stopgap and that trusts have to provide at least 2% to a neighbourhood model of working, what conversations are ongoing to tap into at least some of that funding for the wider palliative care movement, which already works significantly in the community? I have forgotten the ratio of hospital patients to community patients. I do not have the figures on that.

Mr McCartney: Most of the care that we provide is in the community. The sector looks after about 30,000 patients a year, but the vast majority of those visits will be out in the community.

Mrs Dodds: What conversations are ongoing around that? I understand that that is not a magic 2%, and it is not a barrel of oil that does not run dry.

Mr McCartney: It is probably not even 2%. The permanent secretary, when he was here last, talked about how that would be implemented. He had a three-year plan: £50 million one year, £100 million the next year and then £150 million. Danny rightly asked how hospices were being included and how that will operate.

That will operate through the new integrated neighbourhood teams (INTs) that are being set up. I think that more than 20 of those are being set up. However, how they will operate, how they will access that funding and how that funding will be deployed have not yet been defined. That is one of the fundamental issues. We hope that that funding will help with the trajectory that the Committee has called out, which is 50% right now on an appropriate benchmark, rather than where it is at this point, and then 10% incrementally each year up to 100%. I do not think that those INTs, as they are being set up at the minute, will have the resources, the authority, the governance structures or the decision-making structures required. We have not seen that yet. That is the challenge. Although the idea and the principle are sound, the execution is not there yet.

Professor Watson: I was really worried when one of the departmental officials whom the Committee questioned was not able to tell you what the cost of a bed in Antrim Area Hospital was. If you are not able to tell someone what the cost of an Antrim Area Hospital bed is, how can you work out what 2% is? It is a blancmange of uncertainty. It will take a huge commitment to move from the acute sector to the neighbourhood model, and you need better than that.

The Chairperson (Mr McGuigan): We have another important presentation to receive. We have until 3.45 pm for this session, and then we will go on to the next presentation.

Mrs Dillon: After the presentations and the conversation, most of my questions are probably for departmental officials.

This point follows on from your most recent answers. Even if there were a good process for getting that 2% from the trusts, most hospice delivery is not trust-specific; it is across the North. I think specifically of the Children's Hospice, but multiple areas of hospice provision, such as care in the home, are not trust-specific. If that is to be done through the trusts, that will add another layer of complication for you. If the trusts were to say, "Well, we'll fund you only for the people from our trust", that would be an administrative nightmare for you; you would have to try to draw down funding and account for every penny. You could say, "We're already under pressure, and now, in order to get money, we'll have to hire more people to do the administration to account for how we get that money". Am I right in saying that?

Mr McCartney: Yes, you are. Early on, before this was even an issue, the Committee called out the fact that there are myriad contracts that hospices manage from myriad trusts, the strategic planning and performance group (SPPG) and others for myriad services. We have to be slick in how we operate those to make sure that we comply with the many and varying terms of service. This is a step even beyond that. We do not know how it will work out — it is not clear — but, if there are more than 20 INTs and those become a way in which to commission or define services, does that mean that that contract landscape could get even worse? It could get complicated.

Some trusts are excellent at this. The Northern Health and Social Care Trust, for example, works really well with hospice services. It ensures that it pays 50% and that it is volume-related: the more you do, on the basis of need, the more you will get paid. The funding contracts are also multi-year. However, the Northern Trust is unique in that regard. There is inconsistency in delivery, which I do not see changing any time soon.

Mrs Dillon: I agree with you: it is unique when it comes to the hospice stuff. Unfortunately, because this is not done at departmental level, other areas lose out.

I work with two families. Unfortunately, one of them lost their child this week. You were taking care of that child. The one thing that worked well for them was the hospice. Both families were fighting for all of the other services during their children's last weeks. Those children were not terminally ill; they were receiving palliative care. Neither family expected their child to die, but they spent the last weeks of their children's lives fighting for other services. When it is not done on a departmental basis and is not done across the board for the region, there will be inconsistencies. The Northern Trust is rightly focusing on palliative care and the ability to look after people at the end of their life or when they have complex needs. However, it means that the trust has to sacrifice something else, so it then becomes almost totally reliant on you for what it can provide. Those families are not getting other services. There is a bigger picture in which families are losing out, and that is unacceptable. The way we sit at the minute, what would happen without the hospice? If they had had to fight for the other services, which is likely, they would have had nothing.

Mr McCartney: That is why we have social workers in the Children's Hospice. We see distressed families arriving all the time. I am aware of your examples, and, Diane, you have encountered some as well. Those social workers are worth their weight in gold when it comes to how they help distressed families to navigate an incredibly complex situation. More than once, families have come to me and said, "It was only when we got to the Children's Hospice that we not only got the clinical care but you took all the pain away".

Mrs Dillon: We need to raise with the Department the point that it is not funding the hospice and it is becoming more and more difficult to deliver those other services. The hospice is the only service that some families have. The Department uses that to shore up what it cannot provide, and it is doing that at, let us be honest, a much reduced cost than if it had to provide that itself. As a Committee, rather than as individuals, we need to put that question to the Department. We constantly get this pushback of, "More money, more money, more money". Everything that we have said, everything that you have said today, every answer to our questions, even through Diane's questioning, as well as how the Department currently spends money, tells us that money is being spent in the wrong way. That is money that we would have in the system to do things better. Everything cannot be about more money. We already knew that anyway; we have had enough reports on it. We need to stop accepting "Not enough money" as the answer to everything. It has to be about how we invest what we have and how the Minister and the Department invest what they have.

I will finish on this point. I absolutely cannot believe that it has taken the whole Health Department six to 12 months to come up with a job description. The Chief Constable is responsible for the entire Police Service, and we had to review a job description before that post went out to tender. We had to get an entire board to agree that description, but it did not take anything like that length of time. That is just ridiculous, and we need an answer to that question, Chair. We want an explanation of that. That does not seem sensible to me in any way, shape or fashion.

Ms Flynn: I will make all my points together, Chair, because I know that we are short on time.

First, I go back to the neighbourhood model. I met you previously, and we had a discussion about that. The whole theme and tone of the Minister's response to the inquiry were about the shift to the neighbourhood model. Language is used about how it will include palliative care services and how improved palliative care services will be one of the key priority areas for the new approach. There is also terminology about how the new approach will enable how we now look at our improved palliative care services. There is one short paragraph that states:

What input, influence and involvement do you have in the integrated neighbourhood partnerships, where those decisions are being made, debated and discussed? If there is no active involvement in those localised groups at present, I would question why the whole thrust of the Minister's response was, "We are going to make these improvements via the neighbourhood model".

My second point is about the legislation. The Minister said that the Department will consider the need to legislate to mandate the commissioning of palliative and end-of-life care. Obviously, that would come after the development of the new strategy, and we have just discussed how long that could take without the data. The example of the Health and Social Care (Reform) Act 2009 was mentioned, and he said that the Act should already give protection for key health services to be commissioned. Can we work with anything in the current legislation to ensure that palliative care services are commissioned? If we try to amend legislation to include palliative care, will it make it difficult for every other part of the health service that is not commissioned?

My final question is short. Diane asked about the scoping exercise, and Trevor also mentioned it. Work was under way in the working group, and the Department now accepts that it cannot complete the scoping exercise because there is no data. Did you say that the Department is doing a report to confirm that? I wrote that down but was not sure that I heard it correctly.

Mr McCartney: We have asked the Department, as part of the project team, to be crystal clear: draw a line now, look at what can and cannot be done and determine whether it has a way forward. That is our key, clear ask, because there is no point in flogging a dead horse. It is that simple. We await that report to see what that might look like. Here is the positive in this: at least, when you look at the risk register, you see an admission that it has not gone anywhere and is not likely to go anywhere in its current form. It is, at least, confirmation that there is honesty and integrity in saying, "We are where we are, and we are going to have to do something different". Take that as a positive, but we await the report and what that looks like.

Ms Flynn: Is there a timeline for the report, Trevor?

Mr McCartney: I do not have a timeline yet. The co-chair, Liz Cuddy, has had multiple meetings with the Department to push that on.

Your first point was about the INTs, and Danny asked whether we had been invited to the INT meetings. We had not been at that stage, but we are now. We have representation at the workshops so that we can try to understand the model. We do not have clarity from those yet, but that is working through.

Max is probably better placed to answer the question about legislation. However, trying to get legislation through is always a long burn, and it is complex to make sure that it hits the need that you have described, which is to ensure that palliative care is a right as opposed to something that relies on charitable funding.

Ms Flynn: I am glad that you are going to the INT meetings. I would use the Minister's words in the local groups, if there are terms of reference or whatever.

Mr McCartney: Absolutely.

Ms Flynn: It is in black and white that palliative care is a key priority for the neighbourhood model, so use that to your advantage in those groups.

Mr McCartney: The neighbourhood model is the panacea to almost everything, but that is probably because it is the right thing to do. However, it needs to be done in a structure that leads to an outcome. I am always fascinated by the figures. Danny did a very accurate calculation — he was right to within a hundredth of a percentage point — showing that, to be able to invest in palliative care, we need 0·002% of the Health budget. The improvement that could be made as a result of that 0·002% is remarkable.

Ms Flynn: Thank you.

Professor Watson: We invested a huge number of years in changing the legislation in Westminster, and it has not had the impact that we thought it would have. You could invest a lot of time in changing the legislation. I have detected an increased warmth from the Department, which has come through relationships, the Committee's pressure and a recognition that the finances have changed. There is an opportunity for synergy between the neighbourhood model, palliative care and the queues outside accident and emergency departments and the pressures in the system. The Department cannot keep supporting what we have always done, because it is just not working. Would you bet that there will not be ambulances outside the Royal this Christmas, the following Christmas or the Christmas after that?

We have to do something different. We in palliative care, through helping and supporting the neighbourhood model vision, have a lot to give and to share in building those networks, so I just hope that we can be given the opportunity to work within that framework, because it needs to be done in a realistic way, not in 17 little silos. People do not die in silos; they die in homes. Those homes may be in one townland or another or in one trust or another, but those people all need the same thing.

On your question of whether we will run the risk of obscuring other areas if we put finance into palliative care, we are not in the business of building a palliative care empire but of trying to improve end-of-life care, be that for people with heart failure, people with learning disabilities, people from the gay community or people from the immigrant community: it is about improving end-of-life care for all. If that is not being delivered in those areas, it needs to be. If we can help in that, that is great, but it is better that they learn to do it, if you get that. It is not about creating a hyperspecialist service that is doled out in tiny increments: we need cultural change whereby we seriously take on board the needs of those who are at the end of their lives.

Ms Flynn: Thank you.

Mr Donnelly: A few of the questions that I was going to ask have been answered. Thank you for your presentations and particularly for the poem, which was really powerful and absolutely got across how important this is and why we need to do it.

I reiterate the Chair's commitment to this. The Committee has had a focus on this for a long time. We are absolutely committed, and it will not be dropped for the remainder of the mandate. As the Chair said, it will go into a legacy report for the next Committee to pick up. Given the amount of work done, the report and the strength of the recommendations, it will carry on and on.

I have a couple of questions. In the neighbourhood model, the 17 INTs are geographically split between GP Federation footprints across Northern Ireland so that all of Northern Ireland is covered. There have been two workshops already, and I think that you missed —.

Mr McCartney: We missed the first one, but we were at the second one.

Mr Donnelly: You were at the second one.

Mr McCartney: We were, thanks to the Committee.

Mr Donnelly: I believe that there is a third one coming up soon.

Mr McCartney: Yes, there is.

Mr Donnelly: Have you been invited to that?

Mr McCartney: Yes.

Mr Donnelly: I am glad to hear that. You absolutely should have been invited to the first one. I do not know why you were not invited to that. I am glad to hear that that is happening.

The moral and economic cases have been laid out well today. We know why we should do this, but there will also be savings, so it is better for the health service to be doing it. We think that the scoping exercise is not now happening, although we await a report to tell us why it is not happening.

Mr McCartney: We are waiting for a report to tell us what the next steps are, if any.

Mr Donnelly: What would a scoping exercise have told us? Would it have told us anything fundamentally new that was not in our inquiry report?

Mr McCartney: It aimed to clearly define what services were available for what kinds of patients and the throughput in those. The problem that they face is that there is a myriad of systems and processes across a myriad of organisations, so it was almost a 'Mission: Impossible' to get something clear out of that. There are only two ways to fix that. The first is to put something in place now that measures the minimum dataset that you want going forward. That would be a protracted process, but it would still be the right thing to do. The other is to look at other proxy measures that could define the information that you need in different ways. That may be the way that it goes, but we will need to wait and see.

Mr Donnelly: Our report gives us a really good breadth of information on what is happening with palliative care across Northern Ireland, including the need and what is being delivered already.

Mr McCartney: That is the point that Max and Clare were making: there is information out there, but it just needs to be put together in a way that can be used to define what we need to do going forward.

Professor Watson: It is OK to listen to other places. We do not have to do everything ourselves or base everything on our experience or evidence. There is really good evidence out there. If we wait for perfect evidence, we will wait for a long time. We have good enough evidence now to move forward and improve our service.

Mr Donnelly: That sounds good. I hope that the Department will take it on.

I have two final, quick questions. Are you being engaged with about the independent review of the comparator?

Mr McCartney: Yes. That is a minimum requirement.

Mr Donnelly: OK. Good.

Mr McCartney: That is the whole point. There is no point in doing that review separately from us, because we could not then sign up to it. We are where we are because a benchmark that no hospice signed up to came out of nowhere, and we were paid on that basis. No one agreed to it. That can never happen again.

Mr Donnelly: Good. I am glad to hear that.

Professor Watson: May I come back to David on the neighbourhood model? It does not really fit what you are doing as a specialist end-of-life care service for children.

Dr Graham: To be honest, I have little knowledge of how it will work — I need to get up to speed on it — and have not looked in detail at it.

Mr Donnelly: The details are to come for all of us. We have heard about it as an idea, but nobody is clear about how it will function.

What specific indicators should the Committee look for in progressing the recommendations? What do we need to look out for, and what should we ask for?

Mr McCartney: It depends on which recommendation you look at. The first one that I would go to is recommendation 3. It asks what funding structure is maintaining services as they are and what progress has been made. That is predicated on the benchmark.

Mr Donnelly: No problem. Thank you very much.

The Chairperson (Mr McGuigan): Nuala, you have time for one question.

Miss McAllister: I have only one; well, I have more, but, given that I was late and did not hear the presentations, my other questions might have been asked.

I visited the Northern Ireland Hospice and the Children's Hospice a few weeks ago — I met you, Clare — and it was great to see the work that goes on there, but my question is about finances. It is good that some of the gap has been plugged for now, but why, given that £13·1 million was allocated to respite care, has the Children's Hospice not been able to provide that? I have asked the Department why the Children's Hospice was not able to offer respite. Did you contact the Department about that? With an allocation, would you have been able to offer such care? We keep being told that there are no places and that nothing is available. What the Children's Hospice offers is not just for families of children who have autism and learning difficulties; it is for families with children who have complex needs.

Mr McCartney: The £13·1 million did not get as far as the Northern Ireland Children's Hospice. We got some slippage money, as it was described, for paid bed nights in the Children's Hospice, but the payment was at a rate way below the cost of providing the service. We provided as much as we could for that money, but there was nothing that would stand up a service —.

Miss McAllister: Sorry: did the Department not give you enough to cover what it costs, despite having allocated £13·1 million?

Mr McCartney: We were not included in that.

Miss McAllister: The Department has said that there is money left over. Has it come back to you since about that?

Mr McCartney: No. We have gone back to it multiple times. We have a business case with the Department that asks for a seventh bed to be opened. That has been moving through the process, but there is no outcome from it.

Miss McAllister: That is interesting. It is almost as though it is trying to undercut you.

Mr McCartney: Separately, the trusts give us money from their slippage money and ask, "Can you provide beds for that?". We provide as much as we can, because families need it, but, in essence, it just creates a bigger hole in the deficit, so there is a moral dilemma.

Miss McAllister: That is difficult to hear. The Department has said that it was not able to spend all of the £13·1 million, yet here we have someone saying that they would have been able to offer respite beds.

Mr McCartney: We are aware of that, and we have challenged the Department on that, but nothing has been forthcoming.

Miss McAllister: We, as a Committee, will also have to challenge it on that.

Mr McCartney: The £13·1 million is recurrent, so it absolutely could have met the need.

Miss McAllister: Yes. Thank you.

The Chairperson (Mr McGuigan): We will not have to wait too long to take up that point because the Department will be in next week to talk about respite services.

We could talk about this all day, but, unfortunately, the Committee has other business — apologies to the members who did not get in — so I thank you. It is not the last time that we will discuss the matter. OK. Thank you.

Professor Watson: Chair, may we give you details on what we have talked about today?

The Chairperson (Mr McGuigan): Absolutely.

Mr Donnelly: Yes, please.

The Chairperson (Mr McGuigan): If you leave them at the back of the room, we will hand them out.