Official Report: Minutes of Evidence

The Chairperson (Ms Kimmins): I welcome Gearóid Cassidy, director of primary care; Roger Kennedy, programme director of the community care directorate; and Ryan Wilson, director of secondary care. We probably have about 30 minutes, because our last session ran over unexpectedly. The session will be covered by Hansard. Do you want to make a few opening remarks?

Mr Gearóid Cassidy (Department of Health): We will keep the opening remarks brief and try to get to questions as quickly as possible.

The Chairperson (Ms Kimmins): Thank you, Gearóid.

Mr Cassidy: Good afternoon, everyone, and thanks for the opportunity to brief you today on palliative care. We are aware of your ongoing inquiry into adult and children's services, and policies on both sides — adult and children's services — are represented here. I am Gearóid Cassidy, director of primary care in the Department, and I have policy responsibility for adult palliative care and hospice services. I am joined by Roger Kennedy from the community care directorate of the strategic planning and performance group (SPPG). Roger has responsibility for the commissioning of specialist adult palliative care and hospice services. My colleague Ryan is director of secondary care, and he has policy responsibility for children's palliative care and hospice services. Ryan will make a few remarks separately. Members should have received a paper from us in advance of today's session, which provides an overview of palliative care for adults and for children and young people.

Adult palliative care is based on a holistic approach that incorporates the management of physical symptoms, the provision of emotional, spiritual, social and psychological support to the person and support for families and carers. Palliative care may be appropriate for a number of years. A person may have extended periods of being well and then move in and out of palliative care services as their needs change. Most palliative care is generalist and is provided by core health teams in primary and community settings, hospital units and wards. When a person has unresolved complex symptoms and more demanding care needs that require additional expertise and cannot be managed by the core teams, that care will be provided by specialist services, including inpatient, hospice and specialist palliative care units as well as specialist community teams. The Palliative Care in Partnership programme provides regional direction for palliative and end-of-life care for adults in Northern Ireland, supporting the further development of palliative and end-of-life care.

The Department recognises that as the population increases, with more people living longer and with more complex conditions, the demand and need for palliative care will continue to grow. It is important, therefore, that the Department ensures that palliative care services are planned and designed to meet demand and need. On 19 December, Mr Nesbitt met with representatives from Hospice UK and Hospice Alliance Northern Ireland. At that meeting, the Minister advised that we would be undertaking a scoping exercise this year to look at the status of palliative care in Northern Ireland and assess palliative care needs to help to identify gaps and potential opportunities. The outcome of that exercise will inform the planning and commissioning of adult palliative services across the region, including specialist services in hospices. We will be engaging with stakeholders, including the hospices, as part of that scoping exercise, including on the design of the scope. It is very early days on that piece.

We are happy to explore adult services with you in more detail and take any questions that you may have. In the meantime, I hand over to Ryan, who will give you an overview of the children's side.

Mr Ryan Wilson (Department of Health): Thank you, Gearóid , and thank you, Chair and members.

Likewise, in relation to palliative and end-of-life care for children, the Department's policy is broadly to facilitate regional collaboration to ensure that those services are planned and delivered to meet the growing demand and increasing complexity of needs. There are some important differences to note ahead of our discussion. For children, palliative care begins when a life-limiting or life-threatening condition is diagnosed. That may be during pregnancy, at birth or later in childhood. It continues throughout the child's life and death. While many will, sadly, pass away during the first year of life, palliative care can be delivered over extended periods, sometimes longer than 20 years. Palliative care focuses on several aspects of enhancing a child's life and supporting their family. That includes the management of symptoms and the provision of short breaks, end-of-life care and bereavement care.

When we talk about children's palliative care, we are, in general, talking about the care from the age of nought up to 19. The total number of children with a life-limiting or life-threatening condition in any year varies and is difficult to quantify, but it was estimated as being 2,100 in 2020. There is assumed growth of around 2% per year, so the current estimate is that there are 2,300 affected children within the age band of nought to 19. Of those, a large proportion — on average, 45% to 50% — are aged under one year, and there are, sadly, around 150 deaths per year.

We are conscious that today we may be talking about a sensitive and important issue in terms of numbers and statistics. Unfortunately, that is sometimes the nature of policy briefings, but I would like to say at the outset, on behalf of colleagues and myself, that we recognise that we are talking about individual patients who have complex care needs and families that are impacted for life by the quality of the experience that they have when a loved one is on a palliative or end-of-life pathway. Therefore, patient and family voices are extremely valuable and integral to the delivery of care at the hospital, community and hospice level, and to us as policymakers in the Department.

Children's palliative and end-of-life care is a core Health and Social Care (HSC) service, with the majority of care being provided by the five health and social care trusts in the community, in hospitals and in patients' homes. That is supported by the community and voluntary sector, which provides short breaks and some specialist care through a number of charity organisations. In addition, a paediatric palliative nurse for life-limited children is employed by the Northern Ireland Children's Hospice and is based at the Royal Belfast Hospital for Sick Children.

The current departmental strategy for children's palliative and end-of-life care was published in 2016. That contains 23 objectives that continue to provide the strategic direction to commissioners and providers of those services.

The aim of the strategy is to provide high-quality, safe, sustainable and appropriate palliative and end-of-life care to ensure the best possible outcome for the child and their family. One of the key developments coming out of that strategy has been the establishment of a regional paediatric palliative care network in 2019, and that is the main vehicle for implementing the strategy through regional collaboration across the statutory, community and voluntary sectors. The network is well supported by very dedicated staff from right across the system, with membership including palliative care leads from across the five trusts, allied health and pharmacy leads, as well as Macmillan and the Northern Ireland Children's Hospice. Its main role is to take forward the priority objectives from the strategy to develop and share best practice, and, to date, the key achievements have been the development of antenatal care pathways, rapid discharge plans, an ECHO learning platform in conjunction with the Children's Hospice and the development of links with Republic of Ireland colleagues.

Before I finish, I advise the Committee that, in addition to the briefing paper that you have received for today, the Public Health Agency (PHA) has recently completed a needs assessment in relation to the provision of short breaks for children. That has not been shared with you at this stage because it is going through some final sign-off processes, but the authors at the Public Health Agency have advised me that they will be content to share this later with the Committee as part of this ongoing inquiry. In summary, that needs assessment looks across all of the providers of short breaks and makes recommendations on how that service could be enhanced and provided on a more equitable basis across the region. As Gearóid said, we welcome the opportunity for this initial dialogue with the Committee, and we are happy to answer any questions that you may have at this stage.

The Chairperson (Ms Kimmins): Thank you both for that. On the back of your remarks, Ryan, in relation to children, you will not be surprised to hear that one of the key issues for us, and probably one of the things that prompted us to have this inquiry, is what I see as the disparity in the level of funding provided for the Children's Hospice and adults. I think that it is currently 50:50 for adults and 30% for children. I have had numerous engagements with the Children's Hospice, as have others, and given the increase in need but growing cost pressures, we are seeing the implications of that. That has been well documented. I have raised that with both the previous Minister and the current Minister. There was an agreement dating back to 2004 around the 50:50 funding. Looking at that letter, I am not sure who was the Minister or who was in charge at that time. It was long before my time, but it does not state clearly that that is specific to adult hospice services. Is there any clarity as to why there is that disparity, with children only receiving 30%?

Mr Wilson: I think that it relates to the fact that there are some differences in the nature of the services and the demand for those and how they are provided. There are different aspects of the services that are commissioned from the Children's Hospice. First, it is helpful to think of the overall level of provision across the system, of which the Children's Hospice is a vital and valued part of the landscape. The 30% that you referred to relates to the provision of bed days in inpatient beds for things like respite care and short breaks. The Department funds 30% relative to the cost of those commissioned services, with the remainder being made up by the Children's Hospice. There are other aspects of care that are above 30% and, in some cases, around 50%, so I can provide a bit more detail on that, because it is quite nuanced.

The Chairperson (Ms Kimmins): I do appreciate that, and I think that we probably have had some information on that. From my engagement with the hospice and with families who have used those services — this applies to the adult hospice as well — I know that it is 50:50 or 30:70 of the commissioned services, but all, I think, would argue that that is not the reality of the cost of providing services. That is much higher. For me, such an important aspect of healthcare — palliative care — is something that we should not be expecting people to fundraise for to be able to deliver it. I know that that is not a decision that has been made by anybody around this table — it is a historical issue — but this is to really emphasise that, particularly when we are seeing —. We have all met various cancer research organisations — Cancer Focus, all of those organisations — who are presenting week-on-week figures of increasing numbers, particularly around cancer and other life-limiting and terminal illnesses, that show that this demand is only going one way, yet services are having to cut what they can provide, given the current funding model.

I look forward to hearing about the PHA's review of short breaks. It will be interesting reading to see what it has found, given the current status. Is that something the Department is looking at? It is one of the key priorities of our inquiry that we want to look at and drill into, because we have seen, particularly in the last number of weeks, palliative patients sitting in corridors. The Minister described someone he spoke to in one of the emergency departments he visited, who was being treated in a corridor when they would be much better looked after, in my opinion, in the community or a hospice setting, depending on their wishes. I am sure they did not want to sit in a chair. That is why we need to emphasise the importance of these services, and we need to revisit the funding picture, because it is going to get worse if we do not.

Mr Wilson: It is important to distinguish between the different aspects. End-of-life care is one important part of that. Your initial question was about funding for respite care, and those are different parts of the service. There are a number of end-of-life care choices available to families, and maybe the same applies to adults, but some of the care can be provided in the hospital. Many will prefer it to be provided at home, where possible. The Children's Hospice is the only provider of a regional specialist service, which is preferred by some of the families. To be clear, the needs assessment I referred to is about only the short breaks respite part of the care, and it will be of interest to you when it is made available.

There is a hospice-at-home service provided by the Children's Hospice, and that is funded at 50% of the commissioned costs, as is the palliative and limited-life nurse service that I referred to. There is family support, including bereavement support, which is funded at around 41%, and the specialist community team is funded at 43%. The Department has worked and engaged very closely with the Children's Hospice since the Assembly returned around this time last year and the issue came to the fore. There has been close engagement. My commissioning counterparts who look after the children's side, unfortunately, have not been able to be here today, but we can provide more detail if needed on the nature of the engagement. It looks very much at the costs of providing all those aspects of care in the Children's Hospice and what can be done to control those costs.

As we know, there have been huge increases in the cost of generating donated funds by the Children's Hospice and across the charity sector, which is a factor. It is important to be clear that to bring the part of the care that relates to respite and short breaks up to 50% departmental funding is estimated at a cost of £700,000 per year. We know that it would make a difference, but it would not relieve all the financial issues.

The Chairperson (Ms Kimmins): Is that just for children?

Mr Wilson: Yes. It is about what is currently funded on a 30% basis. To bring it to 50% would take around £700,000 per year, which everyone is aware is not available in the Department's budget. It is important to be clear that, as we understand it, that will not completely resolve all the financial issues that the Children's Hospice faces.

The Chairperson (Ms Kimmins): I appreciate that. We have had a very lengthy discussion in the previous session on the budget. However, in the grand scheme of things, £700,000 is not a lot of money for the impact that it would make. Plus, for those children and their families who are not currently able to access services due to the capacity because of the shortfall, they will likely cost a lot more in other parts of the health service to try and plug those gaps. It applies to the broader discussion about palliative care funding and delivery. What we see, where we are able to deliver that really specialised care —. I have spoken to some of the hospices about it, and what they could probably do —. Obviously, they have to cross the t's and dot the i's to ensure every penny is accounted for, which they do. However, if they had the security of a more stable funding model, they could use their fundraising for so much more, which I 100% think would, in turn, alleviate other pressures elsewhere but also, most importantly, provide better outcomes for patients and a better quality of life and all of those things. If they have a more stable funding situation, they will be able to recruit more staff to deliver services. The other pressure that we have seen, given the context of what we have lived through in the last number of years, is that fundraising has become increasingly difficult, and that has probably led to this tipping point where they have realised that this is unsustainable. There is all of that, too.

I have one other question, and I know that others will have questions. I recognise that there are different elements of the different services, but I have concerns that different values — maybe that is not an acceptable term — are being placed on different elements of the services. Essentially, those services have so much value to the people who are on the receiving end, and, as part of this inquiry, I will be interested to learn more about how we reach — 43% is a very specific number — and get to those points. The services are invaluable — that is the only way that I can put it — and we should be doing more to try to bring it to a point where they are secure and can do as much as possible within their expertise. When we talk about everything we talk about in Health — Gearóid and others, you have been here before, and you will know that we have so much potential and so much expertise in our healthcare workforce right across the board that is, essentially, underutilised. However, if we can fund it properly and invest where investment is needed, we could make savings elsewhere. That is where I am coming from.

Mr Wilson: I do not disagree with any of that. The Minister has said that, if he had funding available —. I know that you had a briefing from our finance colleagues just before this session, so you will appreciate the broader picture. If any funding was available, we would like to be in a position to look at how that funding was spent across the piece. The percentages that I have given you are the result of historic decisions and patterns. It has not been determined that 43% is appropriate; that is just an estimation of the current proportion of funding. However, £700,000 would make a massive difference in the whole space of palliative and end-of-life care for children. As I said earlier, the majority of that care is provided by trusts in hospitals and in the community, and the Children's Hospice and other providers are really key partners in all of that and provide some specialist care. The engagement that is taking place with our commissioners, the Children's Hospice and the other providers is looking at all of that in the round and taking account of the needs assessment, which will be available to you soon, and that will hopefully provide a broader picture of all of that so that future decisions can be more evidence-based.

Mr Cassidy: I will come in with two points on the adult side. You have talked about the funding mix on the adult side. That is at 50:50. That is, again, for commissioned services rather than for the cost of delivering those services. On changing the composition of that mix, you will be aware that the Republic of Ireland has moved to 100% provision.

The Chairperson (Ms Kimmins): Yes, that was going to be my next point.

Mr Cassidy: At a high level, the cost of that is estimated at around €18·5 million. That is what they are putting in to support —.

The Chairperson (Ms Kimmins): Is that for adult and children's services, Gearóid?

Mr Cassidy: I think that that is correct, yes.

The Chairperson (Ms Kimmins): If you convert €18·5 million into sterling, that is not a lot of money for what could be delivered.

Mr Cassidy: Well, it is not a lot of money if you have it.

The Chairperson (Ms Kimmins): I am not going to sit here and start making the case for a united Ireland; it speaks for itself.

Mr Cassidy: I am conscious that we are pressed for time, but the other point is on the potential of palliative care and hospices. I agree with a lot of what you said. I mentioned the scoping exercise, and one of the purposes of that is to look at what potential is there for —. We want to do a proper audit of what we have in adult provision, community provision, hospice provision and in trusts. We can see the partial picture, but there is commissioning happening that we are not sighted on because the trusts have their own local arrangements. There is an audit piece within that, and there is also a piece on looking at the potential in, say, hospital attendances, ED attendances or looking at what is presenting with GPs and saying, "Could these patients have benefited from an alternative approach?" It is kind of what you were saying about the weights. We have not yet scoped that work fully, and we will need to engage with the sector to do it properly, but that will give us really good data to base decisions on about where best to invest on the palliative side and wider than that. It may not be in hospices directly. It may be appropriate that there is more investment in community services, or maybe we will work with hospices to build their community offering. It is just not as monolithic a picture as, "It goes to hospices, and they provide beds". It is much more nuanced than that.

The Chairperson (Ms Kimmins): Anything that is delivered should be co-produced anyhow, in conjunction with the hospices. At the end of the day, they are the experts, in my opinion. They know what is best for patients, and they are seeing that every day. That is where it should be coming from. That was the point that I was going to raise. It makes it very difficult, then, when hospices and palliative care services here see what is happening in the South. I was being a bit tongue-in-cheek about the case for a united Ireland: some of the stuff speaks for itself around what you can do when you have the money. As part of our inquiry, we will be visiting St Francis Hospice in the South to see what it does.

Mr Cassidy: The Minister is due to do that as well. It was rescheduled from before Christmas. We have not got a new date, but he has been invited and is going down to see it.

The Chairperson (Ms Kimmins): I will be really keen to see what it is able to do as a result of that funding model in comparison with here. It is a really good place for us to look at. Thank you for that.

Mrs Dillon: Thank you both for your presentations. Liz has covered a lot of the issues that are out there, particularly for those who are providing services. Obviously, the scoping exercise was originally meant to be a comprehensive review of the service, and due to funding it was scaled down or scaled back, or whatever way you want to refer to it, to a scoping exercise. In terms of what is actually done in that scoping exercise, what is the difference going to be as regards what we can see or do or deliver? What are we going to get back when the scoping exercise is done?

Mr Cassidy: It is to be developed, but, at a high level, the idea is that it will have two major components. One is an audit, or a survey or landscape review, of what the picture is now in terms of what is being provided across all the sectors, in hospices and in the community. I should clarify that this is on the specialist side, because it is impossible to disaggregate the general side, and that is where a lot of the care actually happens. It is to get a proper sense of what is being delivered, what we are commissioning and what the trusts are commissioning, and what the hospices are providing that is not commissioned by either of us. It is to get a proper sense of the current landscape. Then we will look at the opportunities for alternative modes of care delivery. We will look at where patients could have care delivered. Could patients who did not avail themselves of palliative care because they were seen in an ED benefit from a palliative approach? What would that look like, and what does that mean from a service delivery point of view? The difference is that when we previously talked about a review of adult services, we had got into the scoping of that early, before we had to put it to one side. One of the major focuses of that was to look specifically at the funding model — the 50% model. There were technical things around the comparators that were used for calculating what 50% actually is, and the cost base of that. Formerly, that stuff would have been in the scope of the review, but it is not currently in the scope of this scoping exercise. If you want to think about it as a precursor to further development, be that policy development or strategic development, it is a necessary piece of work to understand what the current reality is and what the opportunities will be, looking forward.

Mr Roger Kennedy (Department of Health): The scoping work allows us to baseline and understand what is out there. It allows us to understand where the services exist and the geography of that, which is important as well when it comes to access, for example. It allows us to understand skill mix and whole-time equivalents in the workforce. That is an important step to better understanding the gaps or otherwise in our current service provision across all providers.

Mrs Dillon: I absolutely agree, and that is appreciated. When can we expect to see what comes out of that? I am assuming — I hope, not wrongly — that we will get access to that as a Committee, given the fact that we are doing an inquiry and you are doing a scoping exercise.

Mr Cassidy: The Committee will absolutely be sighted on it. We are looking to get initial engagement and drafting work done in the next few weeks. At a high level, maybe three to six months for the work. I do not know at this point. It depends, really, on what is in there.

Mrs Dillon: That is fair enough.

Mr Cassidy: I do not know if that will work with the timing of your inquiry, but certainly we will be providing the Committee with any of the outworkings of that as it is ready.

Mrs Dillon: I appreciate that. We absolutely need it, regardless of the timing of the inquiry. We want to get that, and if anything is coming up as a particular issue, we do not need to wait until the end of the scoping exercise. If there is a specific issue, please let us know, because it will be important for the inquiry that we carrying out.

Mr Cassidy: I am sure that we will be invited back in the course of the inquiry so, if we have any findings, we can bring it at that point.

Mrs Dillon: I would say so.

Mr Cassidy: There will be an opportunity to do that.

Mrs Dillon: It is really important, and we need to get an understanding of what is out there. I just want to make the point — I make it every time we talk about this issue — that, as well as the Department understanding what is out there as a baseline, everybody needs to understand what is out there. GPs in particular, because they are generally the first point of contact and the person you will contact most about issues with your health, need to understand what is available to them to refer people to. I have said before that — it is not the right word, but it is about being more joined-up and understanding who does what in the palliative care sphere. Particularly when families are trying to deal with it themselves, they need to understand who does what — what the Marie Curie nurses do, what the GP does, what the district nurse does, what Macmillan does and what your specific consultant does. So it is who is responsible for what; we need to find a way. I have spoken before to the cancer charities, because they have a collective now, which is really good. Palliative care goes much wider than cancer. We need to make that point, because there are many people who do not have cancer who rely on palliative care. It is important that we have as much of a joined-up approach and an understanding of what is available to everybody. The scoping exercise that you are doing will probably feed into that, so that is important.

I do not want to take up any more time, because I know that other members want in and we are short on time. Thank you very much. I appreciate the presentation.

Mrs Dodds: Just a couple of questions. First, I want to say that Alan Robinson and I had a great visit to the Northern Ireland Hospice. It is an exceptional place, and it was very humbling to be there. I also had a really lovely morning when I attended the Southern Area Hospice memory event just before Christmas. It was wonderful to see hospices not just look after those who are ill but look after families for a long time afterwards. We need to give people credit for the enormous effort that is put into palliative care from those sectors.

This is really the beginning of a journey for me in understanding the legal basis on which we provide palliative care and also the way that it is provided. When did the strategy on adult palliative care run out?

Mr Cassidy: I think it was 2014.

Mr Kennedy: It was 2010 to 2015.

Mrs Dodds: It is now 2025, so we are 15 years without a strategy on palliative care. Is that right?

Mr Kennedy: Yes.

Mrs Dodds: That is quite shocking, to be honest. That is quite shocking. That is why we are where we are, because we do not have a road map, a destination or a goal. That is shocking.

I probably have dozens of questions, but I will only ask a couple. Do not worry, Chair; I am only going to ask a couple. You are now doing a scoping strategy to figure out who does what and where etc. Again, it is welcome that you are doing it, but it actually is quite shocking that the Department of Health should have to do that with no strategy in place. A key question from me: my understanding is that in England and Wales there is a legal requirement on trusts to commission palliative care services, but that there is no legal requirement in Northern Ireland. Is that correct?

Mr Cassidy: Yes. The Health and Care Act 2022 brought in that legal requirement for integrated care boards (ICBs) to commission palliative care services.

Mrs Dodds: But there is no legal requirement in Northern Ireland?

Mr Cassidy: No. Well, we commission services, so if there was not a —.

Mrs Dodds: No, that is different. Is there a legal requirement to commission services in Northern Ireland?

Mr Cassidy: Rather than misspeak, I will come back to you on that point of detail, but —.

Mrs Dodds: I think that that is fundamental for the Committee to understand. If there is no legal requirement to commission palliative care services, that is why they are patchy, to be honest. That is why we have the situation that we have.

Mr Cassidy: I will come back with confirmation of that. I think we will clarify as well the legal basis for all commissioning, not just for palliative services, because I am not sure that there is a legal requirement around palliative care services.

Mr Wilson: I will add a general, broad point. Maybe it is helpful just to say that the Department has a broader statutory duty to provide — I do not know whether it uses the word "commission" — health services that are in line with the needs of the population. That goes back to the Health and Personal Social Services (Northern Ireland) Order 1972, which was updated by the 1998 Health and Social Care Act, I think. Therefore, it is a more general power. I am not aware that there is a specific one in relation to —.

Mrs Dodds: That is a general power, but I am specifically asking about the commissioning of palliative care beds, and there is no legal requirement in Northern Ireland for that. If that is the case, that is a brilliant starting point for the Committee in the inquiry. I did not know that until I started to look into it, and I was astounded by that fact. If we do not have a legal requirement to commission beds, does that lead us to a situation where now we only 40% fund — I am just using general terms — care for people who are at their most vulnerable and most frail, and for their families? Does it all flow from the fact that we do not legally commission beds?

Mr Cassidy: As I said, I will come back with clarification on that legal point. Without having the answer here, I do not want to misspeak on the subject.

Mrs Dodds: OK. I think it really important that we do that. Are we the only part of the United Kingdom and Ireland without a palliative care strategy?

Mr Cassidy: We are. There is no strategy in place. That is not that uncommon. I do not say that it is a good outcome, but it is not all that uncommon. Certainly, palliative care is not unique in that sense. There are structures set up as a result of the previous strategy that have been giving strategic oversight to palliative care developments and service delivery developments. Therefore, it is not the case that no strategic direction has been given. The palliative care in partnership programme board, which is a very collaborative group with all the key sectors in it, is giving that strategic oversight. You will have seen their work plan among the papers that are provided. A broad programme of work is under way on the strategic development of that service.

Mrs Dodds: Well, credit to the current Minister for starting the work. I give him absolute credit for that. However, I am quite astounded that we are where we are. Do we have a clinical lead for palliative care in Northern Ireland?

Mr Kennedy: The palliative care in partnership network is co-chaired by the director of nursing in the PHA and the director of community care within the strategic planning and performance group —.

Mrs Dodds: Those are generalist positions, though. Do we have one specifically for palliative care?

Mr Kennedy: We have input from some of our palliative care medical consultants who sit on the partnership as well and who sit on our subgroups and advise us on our actions, yes.

Mr Wilson: Just to add to that, in relation to the children aspect of the service, I mentioned the regional paediatric palliative care network. There is a clinical lead within each trust. There is also a post for a regional clinical lead.

That is currently vacant, as of the past few months. It is a specialist post, so we are not clear about when that will be filled, unfortunately. However, each trust has its own dedicated clinical lead who leads the staff within that trust. They have received funding that allows them to dedicate one programmed activity — half a day a week, on average — to their contribution to the regional networking collaboration. That is how a lot of our clinical networks operate.

I know that all those members of staff go way over and above what they are commissioned to do and would do much more than one programmed activity, so that is an area where, if there was more investment, a huge difference could be made to increase the input that those leading clinicians have to providing regional collaboration through the network.

Mrs Dodds: Finally — well, not finally, because I am passionate about this aspect of care. A compassionate society should help people when they are at their most vulnerable. I genuinely believe that.

With regard to funding, you are probably not the right people to ask this. Sorry, first, when will your scoping exercise finish? Secondly, do you know whether, in the funding allocation being looked at for next year, there will be something to cover the increase in National Insurance for services in hospices?

Mr Cassidy: On the first point, we are looking to get the initial scoping work done in the next few weeks. The size and shape of the scoping exercise will determine how long it will take. In my mind, I am thinking three to six months, but it will depend on the final shape of the scope. However, we will keep the Committee advised on that as it develops.

The National Insurance increase presents a serious challenge, not just for the hospice sector but for wider family health services. We are not expecting additional funding for that. Our Minister has written to the Finance Minister to flag his concerns about that, and the Finance Minister, in turn, raised it with the Treasury. We will wait to see the final outcome of the Budget. The issue has been raised as a pressure and has been identified as something that will need attention.

Miss McAllister: Some of my questions, which were about the gaps, have been answered already. I will have more questions when we hear from and visit more hospices and at-home palliative care providers. It is important that we hear from them because they, no doubt, will have questions for us, too.

In the meantime, following on from some questions that Linda asked, you provided a briefing, and I have read a lot about it. The public do not get to see the briefings that we get, which is sometimes why we ask questions that are already somewhat answered in our briefings. What are the options here in Northern Ireland that are 100% funded through the NHS for palliative care for children?

Mr Wilson: I said in my opening remarks that the majority of care for children and young people is provided by the five health and social care trusts, so all of that is funded. I am not in a position to give you a clear cost for that because there are multidisciplinary —

Miss McAllister: Not costs, just what is in hospital care and at-home care.

Mr Wilson: All of the care that is led by trusts. The teams are based in trusts. There is a mixture of hospital-based care, which is management of symptoms, right through to more serious end-of-life care provision. Sometimes, it is appropriate for that to take place in hospital; sometimes, there is the ability to do that in the home. There is funding for critical care nursing, which is integral to the network and the delivery of services as well, and the nurses work in hospital and in the community and in patients' homes. It is a real tapestry of services. It would be an exercise to try to cost that out, but everything that is trust-led is 100% funded by the Department or out of the public purse.

In addition, there is the enhanced level of care and support by community and voluntary sector organisations, including the Children's Hospice, which deliver core parts of the service but added-value aspects of services as well, and to different degrees.

In addition to the Children's Hospice, you will see, when we are in a position to share the short breaks needs assessment, that there are other local providers that provide that in each of the five trust areas. Those are utilised to different degrees. The paper also shows that there are issues of access and equity in the distribution of those children across the five trust areas. Some of those trusts use the Belfast services more, or use their own local services more. We need to understand better what the drivers of that are. Sometimes, it is individual choice.

To go back to your question, there are trust-led services that are 100% funded by the Department.

Miss McAllister: What services for adults are 100% funded by —?

Mr Kennedy: I will pick that up. The trusts' specialist palliative care services that currently exist are 100% funded. That is not to forget the range of general palliative care services that sit across —

Miss McAllister: In layman's terms, is it in-hospital care, at-home care or both?

Mr Kennedy: It is a combination of both in the trust services.

Mr Cassidy: As was said in the opening remarks, the majority of palliative care is delivered in general services, so it is through your GP or your community nursing team. You cannot disaggregate the palliative element of that funding, but what is delivered as a general service is 100% funded. The hospice delivers stuff through a 50:50 model.

Miss McAllister: That sounds as though people are choosing to use the hospice services that exist in Northern Ireland because — you used the words "enhanced level of care" — hospices offer the core parts, but they also offer an enhanced level. This is not to speak negatively about any of the people who provide services, but that sounds as though there is a better level of care, more care or additional care. Has there been an assessment of whether enhanced or standard has a better outcome for the patient? Should the enhanced actually be the core?

Mr Wilson: To clarify, when I said "enhanced", I mean relative to what is provided as the baseline by the health and social care system. It is delivered in partnership. I think that some service users of the Children's Hospice and, probably, adult hospices would describe their experience there as being five star or the equivalent to a hotel stay. That is what they are intended to provide. That is not to detract from what is provided by our trusts; that is an excellent, high level of care and provision as well. When I say "enhanced", I did not mean "better", I meant "in addition to".

Miss McAllister: I am struggling. There is a difference between what is the baseline and what is provided by the charities. They rely a lot on their funding. I have visited some of our hospices, most recently the Children's Hospice. Patients and families speak very highly of it. We will, hopefully, meet more people who experience the trust-led palliative care, but I already see evidence that services operated by charities are, essentially, better, which is just not how it should be. It should not be the case that the standard is a baseline in the trust, but if you go to a hospice, it will be better, and you will be more comfortable. Will the gaps that you are talking about assessing look at why it is?

Mr Wilson: Apologies, but it is important to distinguish, again, between the short break respite provision that hospices provide at an excellent, high standard, which, by its nature, is outside of hospital and outside of the patient's home, so it is intended to be a break.

Miss McAllister: I understand —

Mr Wilson: There is an element of choice in that regard for families as well. If they have had short breaks through their life, that might, when they get to the end-of-life stage of care, be their preferred destination. Many — probably the majority — would prefer, if possible, to have that end-of-life care at home, which is delivered also to an excellent standard by very dedicated staff. That could be enhanced with more investment, of course. I am not trying to imply that there is a differential in standard or quality. What I am describing is an overall landscape of care. The strategy is there, and the network is intended to make the best of that. It is suitable for very individualised care needs. The choice is there for parents. I am not sure whether I have —.

Miss McAllister: I am talking about children and adults, to be fair. In your assessment of the gaps, it is important to look at why one is picking up and another is missing out. Why is the charitable sector able to deliver enhanced provision in a way that looks different, and not just in how it is funding costs? It seems to be a different level of care from what is offered by trusts through the NHS.

Mr Cassidy: As a Department, we do not have visibility of the elements of hospice provision that we do not fund. That is correct and appropriate. We commission what we commission, and we ensure that what we have commissioned is delivered. Hospices have some discretion to use the funds that they have raised through other means to best effect. They can, perhaps, be more agile in responding to the needs of individual patients because they have that flexibility. Is that the territory that you are talking about?

Miss McAllister: Yes, it is worth exploring that and hearing more about the flexibility and ability to be agile in how you spend to meet individual need. To me, palliative care, whether it is supplied by a charity or trust, should be about specific individual needs.

Mr Cassidy: We commission to deliver specific outcomes with the specific, limited funding that we have available. That is our responsibility. It is what we make sure and what we performance manage — that is the wrong term; we give accountability, with the hospices and other providers, for that.

Mr Kennedy: I come at it with a slightly different lens insomuch that I am assured that, especially with palliative care provision, there is a high quality of provision in both the statutory and voluntary sectors. It is important to say that. Wearing a planning lens on this, the important challenge for us — maybe this goes back to Diane's point about the funding — is whether we have enough in-patient beds to meet the specialist care needs of our population and that, through the needs assessment and that baseline piece of work, we have beds in the right places for our population to access that specialist care provision when it is required. Maybe I am coming at it from a slightly different angle.

Miss McAllister: I understand that. Maybe I am being misunderstood: it is not about the quality but the enhancement: the add-ons, extras and additional things that you have the ability to offer. We can explore that further when we have it in front of us. Do you have a time frame? No. I think that that question was asked already.

Mr Cassidy: For the scoping piece? At high level, it is six months, but we will keep you posted on that.

The Chairperson (Ms Kimmins): Thank you for coming. As you said, Gearóid, we will probably have further engagement throughout the inquiry. We look forward to hearing more from the scoping exercise as well. I appreciate your time today. Thank you.

Mr Cassidy: Absolutely, and I will come back to you on your point about the legal basis for commissioning, Mrs Dodds.