Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Jim Wilkinson, the deputy secretary of the healthcare and policy group; Gearóid Cassidy, the director of primary care, who has stayed with us; Roger Kennedy, the programme director in the community care directorate; and Ryan Wilson, who is the director of secondary care. Thank you very much for your attendance. You have read our report, and we have received your response. Do you wish to make any opening remarks before we move to questions?

Mr Jim Wilkinson (Department of Health): I will make a few short opening remarks. The context of the earlier discussion covers a lot of what we want to talk about. First, I thank members for the opportunity to attend today to discuss the Department's response. I am the head of the Department's healthcare and policy group. Our policy remit includes adult and children's palliative care, advanced care planning and a number of the areas covered in the report. I am joined by Gearóid, who has the joy of being here on a repeat basis, having attended the first session; Roger Kennedy, programme director in the strategic planning and performance group (SPPG) with responsibility for palliative care; and Ryan Wilson, director of secondary care, which includes responsibility for children's paediatric palliative care. All of my colleagues have been here to brief the Committee as part of its evidence sessions.

I will start by following on from the previous session. The neighbourhood model of health and well-being, as members will be aware, is a key strategic programme for the Department. It is also, we believe, critical in supporting and improving palliative care. I am sure that I will return to that point as part of these discussions.

The timing of today's evidence session is appropriate. As members will, no doubt, be aware, this week is Dying Matters Awareness Week, which is part of a campaign by Hospice UK that aims to encourage openness in talking about death, dying and bereavement. This year, it is focused on the importance of conversations about death and dying. A number of events are being held here, including a death-positive library, which is supported by Compassionate Communities, local trusts and Libraries NI.

The Department recognises how important palliative care is and the difference that it can make to people who are living with life-limiting conditions, as well as the support and reassurance that it offers to families and carers. So does the Committee, and the Minister has recognised the breadth of the Committee's inquiry and welcomed its report. The report sets out an extensive and challenging body of evidence that has been provided by, among others, palliative care providers and those with personal experience of palliative care, including carers. The Committee has made 27 recommendations, a number of which include several elements. Together, those recommendations cover a wide range of areas. The Department has accepted 19 of the report's recommendations in full and partially accepted others. I have no doubt that we will get into a discussion on that.

Our intention now is to move to the implementation of our commitments, and we have made our response to the Committee's report. I stress the importance of implementation and discussion of the evidence. Giving some assurance on governance will be important. As we noted in our response, while we will make every effort to deliver on those commitments, the Department faces challenging financial circumstances and pressures. In light of those, we may need extra time. A lot of the discussion has rightly been about how we prioritise and direct existing resources, rather than how we apply new resources.

As I mentioned and as you have seen in the Department's response, we believe that the implementation of the new neighbourhood system of care has the potential to make a significant difference to palliative care services in Northern Ireland, enabling more people to be cared for in the place that they call "home" and in the community. As a model, it also focuses on prevention. The aim will be to identify earlier those who would benefit from palliative care in order to ensure timely intervention and prevent, as far as possible, inappropriate attendance at hospital EDs, especially for some of those who wish to remain in their home in their final days.

As the Committee heard earlier, the Department launched the policy framework for the neighbourhood model at the end of March. It is just the start of the journey to reform how, where and by whom services are delivered to best serve our local populations on the basis of their specific needs. The Committee will know that the majority of palliative care is generalist, and the Department acknowledges the important role of general practice and district nursing teams, as well as those who work in care homes and domiciliary care, in providing palliative and end-of-life care. The Department also recognises the role of hospices in providing specialist palliative and end-of-life care. Over the course of the inquiry, Committee members visited our local hospices and saw at first hand the value of the work that they do to care for and support people with palliative care needs and those who are important to them.

Over the past four months, I have visited each of the adult hospices, and I have had the opportunity to speak to the hospice representatives about the services that they provide and to hear their views on and expectations of the Committee's report. I also had the chance to hear the experiences of patients, families and carers, and I am grateful to those who spoke to me for sharing their stories. It is clear that, rightly, hospices hold a special place in our local communities. The Department commends the expertise, professionalism and commitment of all those in the palliative care sector and the wider health and social care system who provide care and support for people living with life-limiting conditions. We also recognise the vital role that carers play in supporting family members and loved ones, often in challenging circumstances. As we seek to deliver on the commitments made in our response to the Committee's recommendations, we look forward to working with palliative care providers, people who use palliative care services, families, carers and other stakeholders to transform the services.

We are happy to respond to questions and go into more detail on our response.

The Chairperson (Mr McGuigan): You have responded to the Committee's report, and it goes without saying that the Committee views this as an extremely important issue. You have visited the hospice, and you will hear nothing from me today that you have not heard already. We will cover a lot of subjects today, and I will try to cover funding and resource. It is important that we consider the outcomes, but, clearly, funding and resource are important.

There is a disparity between the value that the Department puts on beds and the cost of the service provided in a hospice, and there is no agreement on that. It is clear from the information that the Department is, supposedly, paying 50% of the cost, but there is a view that that is not the case, given that the benchmark set by the Department is £824, despite the fact that a bed in Antrim costs £1,150. That is an immediate disparity, and there are different views on whether hospices receive even 50% funding: it is our view that they do not. The Committee's report states that, over a five-year period, we want to see the Department move beyond 50% funding to 100% funding. Am I correct in saying that the Department has said "No" to that recommendation?

Mr Wilkinson: You are right. One of the key challenges facing every hospice that I visited was the sustainability of acute beds, which are the ones that we are talking about. The Department's response states that it wants to move collectively towards a sustainable funding model for hospices. The question of whether that is 100% funding or —.

The Chairperson (Mr McGuigan): Before I make any criticism, I will ask you a couple of questions. Have you done a business case? What is the sustainable funding model? Do you know how much funding 100% of the service would cost the Department?

Mr Wilkinson: I will bring in Roger to talk in a bit more detail. There are two elements to this. The first is putting funding into the system on the basis of the information that we have. The second is using our benchmarking exercise to reach the cost, because it varies across hospices and systems. There is work to be done on determining that benchmark.

The Chairperson (Mr McGuigan): Where is that work?

Mr Wilkinson: I will ask Roger to come in to give some detail on the work that is being taken forward on the needs assessment and benchmarking.

The Chairperson (Mr McGuigan): You have said that work is being done on the resource that needs to be put in to the system. However, your response to the Committee tells us that you will not put in any additional resource.

Mr Wilkinson: There are two elements: one is the additional funding that we are putting in on the basis of the current and existing model; and the other is to look at a more sustainable model. To look at the more sustainable model, we must assess demand and costs and then come up with an agreed approach that ensures that it is sustainable.

We are all agreed on the fact that the hospice system is a critical element of the palliative care system and one that we need to maintain. It is an excellent service, as, I think, the Committee found, in the quality and standards that it provides.

Roger, do you want to say a bit about the work that we are doing and that we plan to do?

Mr Roger Kennedy (Department of Health): Thanks. Chair, I will bring you up to speed on the benchmarking. We did a benchmark review on the 50:50 funding that was paid in February 2026, so the review is fairly recent. It included work with SPPG Finance on the new patient level information and costing system (PLICS) and with Hospice Alliance colleagues. The review resulted in an additional payment of £600,000 being made across all hospices for 2025-26, backdated to 1 April.

The Chairperson (Mr McGuigan): What was that additional payment based on?

Mr Kennedy: It was based on the current numerator, which is the general medical bed.

The Chairperson (Mr McGuigan): That is based on the fact that you do not recognise that you pay more for the Antrim system than the hospice system.

Mr Kennedy: I will pick up on the Antrim system. We looked at the costs, but it is incredibly challenging to compare the two services. In a wider trust environment, some of the costs are fully absorbed, including direct and indirect costs. I am not an accountant, but they are not stand-alone units to compare. For example, it is hard to extract the costs from the cost base on the Antrim site to compare apples with apples.

The Chairperson (Mr McGuigan): Sorry, I will keep interrupting you, because we have limited time and I want to get to the bottom of this. You recognise that what hospices do is specialist care. I understand that you may think that there are difficulties in comparing what hospices get for a bed with what hospitals get, but other methods still show that hospices get less than they should for the specialist care that they provide.

I do not want to boil it down to numbers. As I said, in our view, palliative care has a societal value. We were in Dublin yesterday, and that struck me very clearly. Society puts a value on ensuring that people get the care and attention that they deserve in their last days — that they get to die where and how they want, getting the care that they deserve with their family and loved ones around them. There has to be a societal value to it.

When the Committee asks the Minister difficult questions, he continually says, "Tell us what your priorities are". We have told him that this is a priority for us, and we want him to action the priority that we have given him. We think that it is appropriate that the service is funded by the public purse as opposed to people having to fundraise to ensure that their loved ones get the last days that they deserve. Given that we have done that and have given the Department a number of recommendations, it shocks me that you have come back today, months later — we gave you additional time — unable to say, "Here's how much it will cost this year, next year and the following year over the five years" so that we can have a better conversation about the money. After all that time, you have basically come to say, as the Minister does and does very well, "Yes, I agree with you, but I do not have the money". So, right back at you and the Minister today: tell us how much money it will cost.

Mr Wilkinson: I will bring in Gearóid, but, first, I will break down the recommendation. There are three elements to it that we have been looking at. The first, as Roger described, is about how we get immediate money into the system. The way that we have done that is to use the existing benchmarking, and that has put in the additional £600,000. The second element is about whether we have the right benchmark. We have agreed, working with the system, that we need to review the benchmark bed.

The Chairperson (Mr McGuigan): You are going to look at that.

Mr Wilkinson: That needs to be looked at. The Antrim system is not necessarily the initial one that we will look at, because there are different costs in it.

The third element is to ask what a sustainable funding model is for the hospice. Is it 100% funding, as recommended by the Committee, or is there an approach that recognises the value of the hospice's independence and fundraising and looks at what a sustainable bed cost is?

Those are the three elements. The first is the £600,000; the second is reaching an agreement on the costing of the beds that we have; and the third is the progression that would take us towards making that sustainable.

The Chairperson (Mr McGuigan): The Committee has done a lot of engagement, including with the hospices, and our recommendation is 100% funding. We are not asking for something that does not happen elsewhere. We visited St Francis Hospice twice. It is funded at 100% and is allowed its independence to provide additional services through fundraising. It is the same in Scotland and Wales, so we are not asking for something out of the ordinary. It is about putting societal value on people's end-of-life care.

Mr Wilkinson: I fully understand the Committee's recommendation. I will bring Gearóid in to say more about that.

Mr Gearóid Cassidy (Department of Health): I will build on what has been said. We welcome the report and the Committee's focus on the area. In your question to Roger about whether it is a specialist service, you were, I think, getting at the comparator: a specialist bed versus a general medical bed. That was reviewed most recently in 2019 — keep me right on that — and, at that point, it was felt that a general bed was the appropriate comparator. As Jim said, we will look at that again and make sure that that remains the case.

Mr Donnelly: It is not.

Mr Cassidy: That is what was done; we will look at it again to see whether it remains appropriate. It is important to say that a general medical bed will have some specialist input in hospital costings, because it is not as black and white as saying that it is exclusively one or the other. We will look at that.

Given the previous session on the neighbourhood model, there is a point to be made about how the hospice specifically will be involved in integrated neighbourhood teams (INTs) and how hospices will avail themselves of or get involved in the 2% shift. We covered how we can make sure that they are represented in the wider discussions on that. INTs will look at patient need, and, where a bed in a hospice is most appropriate to meet that, we will definitely need to see funding flow towards it. However, community-based models for palliative care are really important and are under-served. The hospice can be involved in providing that in the community; the service is not just a bed-based one. I accept that that is a key area of focus for the Committee.

The Chairperson (Mr McGuigan): There is more to it than just the hospice and the acute service. Are you saying, Gearóid, that palliative care in a hospice is not an acute service? That is what I took from what you said.

Mr Cassidy: No. I am saying that the comparator that is used for the 50:50 model is a general medical bed in a hospital. That is how we cost what is funded in a hospice versus in a hospital. When that was last reviewed, it was still felt to be an appropriate comparator. I am not making a judgement about the service; I am just setting out the mechanics of how it is costed.

The Chairperson (Mr McGuigan): There is more to it than the inpatient service provided by a hospice; there is the community service. One of the things that we learned — I presume that Danny will elaborate on this — was the value of a small number of community-based nurses and the number of people whom they were able to care for. That service needs to be expanded, and, if the neighbourhood model is a method of doing that, that is well and good.

I will finish on this point, but, hopefully, I will get the chance to come back in later. It is disappointing that, although you have agreed with some of the recommendations, there is no plan and that you have said today, "We will come back with more work". There needs to be a real sense of urgency about this. It is important work for the Committee, and we want to see real, tangible progress before the end of the mandate. We want to see the figures that we have talked about come to us quickly.

Mr Wilkinson: I acknowledge what you say, and I reiterate that it is an important area for the Department as well. Maybe we will come to governance and how we will take some of it forward. It is important to establish the position on the recommendations and then to give them impetus with a detailed implementation plan. We discussed the immediate issue of hospice care as a high-cost area — it is right to do so, given what you said, and, when I am at each hospice, that is the first part of the discussion — but we swiftly moved on to the other areas that the Committee identified, including workforce, collaborative working, making the best of community services, providing consistency and working collectively.

As I said, I would break down the first part into three questions. First, how do we get additional investment? Roger mentioned revaluing for 2025-26. Secondly, is it time to look at it again? If it was done in 2019, then 2026 is the time to review the bed comparator. Thirdly, what is the progression rate? What makes it sustainable? Is it the 50:50 model on a different bed comparator? Is it an increase in percentages? We need to work through that, and we will certainly work through it with the hospice providers.

The Chairperson (Mr McGuigan): We want to see that trajectory of 100% over the five years, and then we can have a discussion about how we pay for it.

Mr Wilkinson: We can certainly work out a trajectory and what we need to do to reach 100%. As I said, for sustainability in the system, we have to take into account value for money and what costs provide. Whilst we can provide the figures and that will be part of any modelling, the recommendation or the response to that is a different matter.

The Chairperson (Mr McGuigan): Value for money is important; patient outcomes and the societal value are equally important.

Mr Wilkinson: They are.

Mrs Dodds: I read the Department's response, and, like many people in the room, I was hugely disappointed. From your answers to the Chair, I get a sense of déjà vu. We have all talked about the funding. Is it the cost of a general medical bed? Is it a specialist bed? You went away to do some work on that. You have come back today and said that you need to do some more work on it. We are just going round in circles. For people looking in on this, it is disappointing, because all our family members will, at that stage of their life, require support in one way or another.

The Department's attitude to this is extremely disappointing. I have said this before, and I know that it is a bit out there, but we would never consider giving birth and then leaving the funding of the baby's care to charitable donations. We seem happy to do that with those who are at the end of their life. You may think that I am being a little harsh — you are all very nice people — but that is a disappointing response. The hospice movement is one of the great movements, but hospices on their own cannot carry the burden as they have been. If nothing else comes out of this meeting today, I want that to be made absolutely clear.

The Chair asked you about funding. I do not think that I got an answer to whether you know the cost of a hospice bed or anything else. Maybe I am being a bit obtuse and have not thought about it enough, but, from what you have said so far, I do not get an answer to that. I take it that you are now going to do more work on it. However, we have been going round this for a year — more, actually. The Committee has spent hours taking evidence on the subject, which is incredibly important to everyone, yet you are going to do more work on it. Sorry for the rant, but I am a bit angry at how this has been responded to.

Taking in the previous conversation with the permanent secretary and looking at your recommendations, it seems to me that 2% from the trusts for a neighbourhood model of care will have to stretch to do an amazing number of things. How have you included the hospice movement — I will speak of the movement as opposed to individual hospices — in the discussions about the neighbourhood model of care? How will they access that? How will you ensure that there is a standardised amount for hospices and that there is a fair distribution of the 2%?

How will that work? How are people involved? If I asked the people in the Public Gallery how they have been involved so far, what would they tell me?

Mr Wilkinson: First, I want to be clear: we are in no way dismissive of any of the recommendations and fully agree with what you said about looking at funding. I was trying to explain the approach, specifically looking at the cost of bed-based hospice care, especially palliative care. There are three questions still to be addressed there. First, what is the bed comparator? Yes, we have information provided by hospices. We have looked at benchmark information. Gearóid described how, the previous time that it was like that, the evidence took us towards a general medical bed. That has —.

Mrs Dodds: Jim, how long does it take to resolve that? We discussed it in one of our very first meetings on hospice care. The recommendation from us is not a surprise or a shock. You knew that it was coming.

Mr Wilkinson: I agree. Yes.

Mrs Dodds: How long does it take to resolve it? It is — what? — 18 months since we started the inquiry.

Mr Wilkinson: Roger and his teams look at the comparator. Their first focus this year was to look at how they can increase the actual benchmark costs to put some money in the system. That is how they described the £600,000. I agree that we need to look urgently at reaching an agreement on revising, reviewing and determining the appropriate benchmark bed. Then there is a separate exercise to articulate how much it would cost to move to 100% and whether a 100% movement is the direction that we are taking.

Mrs Dodds: If we were to come back to you, say, in September, would you have the answers? Given that you have done all the preparatory work, would you have the answers?

Mr Kennedy: We would certainly have the answers to the 100% and what that would look like.

Mrs Dodds: I think that you have given us the answer to the 100%, although you have not estimated what the 100% would cost.

Mr Kennedy: It would be an estimation of what the 100% would look like. We can look at a revised cost comparator, and that may include work with our hospice colleagues. I have had conversations with hospice colleagues about perhaps costing it up around service specification, Diane. That may be the most sensible way forward on estimating staffing per bed etc so that it becomes unequivocal and gives us an opportunity for co-design.

Mrs Dodds: I will move on to discuss with Committee colleagues what we should do with that.

There are two other areas in which I am interested. Well, I am interested in lots of areas, but I will not take up any more time on them. The first is the recommendation that you have completely ruled out: any kind of help to Evora Hospice in the Southern Trust area for capital funding. That particularly interests me, Jim. I might sound like a broken record, but I am not giving up on this. We are throwing tens of millions of pounds in capital money around in the Belfast Trust. As we speak, we are literally paying for water to be flushed down drains — tens of thousands of pounds per month — yet there is no help for a hospice that is in a very outdated building. Goodness, I remember it as the St John of God's children's hospital from many years ago. How on earth is that a sensible way to operate health estates?

Mr Wilkinson: There are two answers to that question. The first is the availability of capital funding. In this period alone, the Department faces significant cuts to its capital budget and has already surpassed it by all bids, so we do not have a mechanism.

The second is about what kind of support the Department can provide. Support can be provided in two ways. The first is a capital grant, which, as I said, we just do not have the resources or funding available for. Secondly, can we work with the system and with providers to provide expert advice and guidance on accessing funding and looking at other funding opportunities? We talked about that in relation to the neighbourhood model and about Marie Curie. I know, from talking to colleagues in Evora, that there may be funding opportunities, but they would like some support from the Department to assess the relative benefits of those opportunities to the hospice.

Mrs Dodds: I am really not sure that that answers my question, but I am sure that someone else will take it up.

Gearóid, when we started the inquiry, you came to the Committee in January or February of last year and said that you were going to do a scoping exercise on the palliative care available across Northern Ireland: I am interested in that. It astounded me that the Department did not know what it was funding or the totality of the care available. Have you completed the scoping exercise? Will the Committee be able to see the scoping exercises? Are there any recommendations from the scoping exercise? Where is the scoping exercise?

Mr Cassidy: Thank you. When I was before the Committee that time, I was optimistic about how quickly the scoping exercise could progress. It is under way. There are three key elements or aims to it. One is on scoping current provision; another is a needs assessment — what the gaps are —.

Mrs Dodds: Sorry, I do not want the Chair to shout at me and tell me that I have run out of time. You say that the scoping exercise is under way: I heard that last February and at another stage during the year. I want to know where it is. When will we see the scoping exercise?

Mr Cassidy: The initial report on the first part of it, which is on current provisions, is due to be with us in June. That work is well advanced, and the report is due very soon.

We have not been able to make progress on needs assessment for a number of reasons, primarily because it ought, by rights, to be led by the Public Health Agency (PHA) but the PHA has not had the capacity to work with us on it. We have made some progress on patient experience. We have data from the National Audit of Care at the End of Life (NACEL), and we are part of a UK-wide bereavement survey by Marie Curie. There has been good progress on strand one and partial progress on strand three, but we have not been able to progress strand two and are actively looking at how we can take that work forward. If we get the report in June, we will update the Committee in the autumn. We are due to report in November, I think. We can cover the scoping exercise as part of that update, or, if the Committee wants an update sooner, we can provide an update specifically on the scoping exercise.

Mrs Dodds: Paediatric palliative care is a particular interest of mine. Little is promised in relation to paediatric palliative care. It is a lifeline for families. We are failing families at a vulnerable time. Some families experience an immediate need for paediatric palliative care, while others will require ongoing care and cannot get it because of funding constraints. Will we be able to make that up in the neighbourhood model? Will the Department compel the trusts in any shape or form to come together to fund regional paediatric palliative care?

Mr Ryan Wilson (Department of Health): The report makes a helpful distinction between adult palliative care and paediatric palliative care. For clarification, are you talking about the respite care support for families during a young person's life or end-of-life?

Mrs Dodds: Both, and transition. I had a difficult case of a young person whom nobody seemed to think was their responsibility. Apparently, they were not old enough for adult services but were too old for children's services.

Mr Wilson: I will respond to the transitions issue first. You will be aware that across children's services — not just the palliative group — any child —.

Mrs Dodds: It becomes incredibly acute when you are told that your young child has a limited amount of time to live. I acknowledge that it varies in different situations, but it is at the acute end.

Mr Wilson: For context, as a wider issue, the transition of any young person who has a life-limiting condition is a priority issue for the child health partnership. Those who are on palliative care for the end-of-life phase of that journey are a particular subset, and I accept that they are extremely complex cases. It has been estimated that there are, on average, seven cases per year that fall into the eligible group who need a managed transition into the equivalent adult services. In some cases, those young people are better off where they are because, although they are at a transitional age, it is accepted that they are in the final year of life, and those children are managed through collaboration between adult and child services. I accept that they are extremely complex cases, but they are part of a wider, ongoing piece of work about how we can better manage and prepare adult services to have the capacity to adequately accept and treat those children. I accept that those who enter the end-of-life phase in that age group are all different, but they are managed primarily by the paediatric palliative care network in conjunction with the appropriate adult services. I do not think that you want to talk about an individual case, but some of those are brought to the Department's attention.

Mrs Dodds: Maybe the Committee could see that piece of work or have sight of the outcomes. You are here to do your job, but palliative care is a serious issue that the Committee has spent hours on, and it is not going away. The questions that we are asking today are not going to go away, and we will keep bringing them back until we make progress on what is one of the most sensitive, difficult issues for families to deal with.

Mr Wilkinson: I fully accept that, and we recognise the work of the Committee. All I can say is that everyone at the table recognises the importance and the critical nature of palliative care. On the recommendations, you will see that a lot of them are limited by finances. However, as we work through that, we will continually make the case for the investment that is required to help deliver a number of the recommendations, but it is about making the case for prioritisation in a constrained environment. We will need to look for opportunities, and the neighbourhood model and accessing new forms of finance offer opportunities to bring in additional investment, but, throughout that, we will continue to make the case for the best use of the resources that we have and for investing to deliver on the recommendations.

Mrs Dodds: Thank you, Chair.

Mr Donnelly: Thank you for coming today. I share some of the frustrations that have already been expressed. We first heard about the scoping exercise in January 2025. At the time, you told us that it would take three to six months. You said that you were "cavalier" at the time. We are now nearly 18 months on, and you have just told us that one element of it should be reported in June. That astounds me, and you cannot give a time frame for the second or third units.

Mr Cassidy: I did not mean to say the word "cavalier"; I meant to say that I was overly optimistic in my initial assessment. I have been back since the January meeting to reflect that we have not made the progress that we had expected to. It has been much slower going than we anticipated. The people who lead the work, especially on key strand 1, are doing a thorough job, but it has not had traction. The three strands are equally important, and we are not going to pretend that one piece is the full puzzle.

Mr Donnelly: I hope you are not being "overly optimistic" today and are being more realistic.

Mr Cassidy: We had that exact conversation the last time I was here.

Mr Donnelly: That was a while ago.

Mr Cassidy: The report on the first strand is due in June —

Mr Donnelly: We look forward to that. Can the Committee see the report in June?

Mr Cassidy: I assume so. I will need to check the format, but if we do not share the report itself, we will share the outputs either via a direct update or as part of our wider update on the progress.

Mr Donnelly: We would be very keen to see the report as soon as possible.

Mr Cassidy: Yes.

Mr Donnelly: I could talk about this all day. It is a huge and vital issue. Certainly, we, as a community, are so invested in it because of the regard in which hospices and palliative care are held in the wider community. Our constituents across Northern Ireland value them and want to see them funded and improved because they know the high level of service that they afford to people who are dying and have terminal illness.

The omission of palliative care services from the initial discussion and development day on the neighbourhood model that we talked about earlier was an error. You described them as being an important part of the model, yet you did not invite them to the development day. That was quite an error. I am glad that you have now rectified that and that you have committed to involving them in future development days and other planning days. However, that shows us the Department's attitude to the sector. I hope that that improves. It seems as though there is a bit of distance there. I hope that that can be improved, because we want the service to be improved.

Mr Cassidy: That was a mistake on our part. Certainly, no slight or disregard was intended. However, we can and should do much better in that space.

Mr Donnelly: I certainly hope that that is the case.

I want to move on to the comparisons. My first question is about the comparison with the general medical bed. I do not get that — I honestly do not get it. I know the difference between a specialist palliative bed and a general medical bed, and they are completely different things. The level of service that they deliver is completely different. The Committee would be very interested in seeing the figures that you have, or that you are about to have, as soon as you have them, so that we can make that comparison. You mentioned that some of the costs would not be the same because the unit in Antrim is part of a bigger hospital. In my mind, its costs would be lower because it would have access to economies of scale that the hospice would not have. Therefore, it should be cheaper to deliver that service in Antrim. Do you agree?

Mr Wilkinson: I will bring in Roger, who has the detail. For me, there are two issues. I do not want to get completely stuck on beds and sustainable finance. One element of sustainable finance is moving to 100% of the current funding model. I can give you figures on that. We have figures on that; we can cost it out annually. In the context of competing priorities, we will continue to make the case to try to increase funding if we can, because that will go towards making the system sustainable.

The second issue is whether you actually need to change the comparative bed. Is it 50% of a higher-costed bed, or does it actually not matter? If it is 70% of a general bed, is that better than 50% of a comparable bed? Those are two slightly different questions. When it comes to whether it is cheaper to provide it elsewhere, that comes into the value-for-money question on how you fund a palliative care bed. I would not, and could not, critique your analysis that it should be cheaper in a hospital due to economies of scale or the analysis that overheads in a hospital would increase the cost. I would not be able to do it. I know that we have the patient-level information and costing systems (PLICS), which will take us down to a certain level. All I know, from speaking to the teams that have looked at it, is that it is incredibly difficult to do. However, we do need to bottom out the funding piece. We are committed to doing that.

One element of the funding piece is what percentage you pay — it is a 50:50 split — and the second element is whether it is 50% of the cost of a general care bed or 50% of the cost of a specialist bed. In part, I think that the two debates are linked to the same issue: how you get sustainable funding for the hospice. There are two different answers, but they are actually on the same route. We accept the outcome, which is the sustainable funding model for the palliative care beds that are provided, which are essential, and we all have the comparative data about the quality that they provide.

Mr Donnelly: Part of that comparison would be the staff. The staff in the hospices are specialist clinical staff who are trained in palliative care. Are the staff in the unit in Antrim paid at the specialist rate?

Mr Wilkinson: I do not have enough detail about the palliative staff, but Roger might have that information.

Mr Kennedy: If they are specialists, they would be paid at the specialist rate, Danny. That brings us somewhat into the complexity of comparing apples and oranges. On the point that you made about whether, given the economies of scale, the cost of a bed should be cheaper in hospital, I am happy to share with you our workings from Omagh and Antrim, including the 2025-26 general medical bed data on how we got there, which, as you probably well know, we also openly shared with hospice colleagues.

Mr Donnelly: My point was more about pay parity for staff in the hospice sector who are specialist palliative care providers — clinical specialists — and the staff with whom they —

Mr Kennedy: If we are talking about pay rises or Agenda for Change —.

Mr Donnelly: Yes

Mr Kennedy: Traditionally, there is a 50:50 split of the costs of the general medical bed.

Mr Donnelly: So you would consider that —.

Mr Kennedy: We would not pay the full actual cost in that space. It would be based on the 50:50 component being uplifted by Agenda for Change or other cost pressures.

Mr Donnelly: Do you accept that, as an element of pay parity, the specialist care providers in the hospice sector should be paid the same?

Mr Kennedy: Some of that ties back into the fact that, if we were paying 100%, we would be covering 100% of the cost; if we pay 50%, even if we get the bed rate right, there could be a challenge with meeting all their costs. We work with hospice colleagues as a matter of course and routine, however, whether that be —.

Mr Donnelly: Are you suggesting that clinical palliative care specialist providers should be paid less in the hospice than in the NHS?

Mr Kennedy: I am not suggesting that at all.

Mr Donnelly: No. They just want —

Mr Wilkinson: Part of it is the question of whether it is a public service or a non-public service. The employers of clinical specialists in the hospices are the hospices. They are the employers. Roger described how we fund through the 50:50 model. We look annually at the increase in costs — forget about the bed — and pay 50% of that increase. That does not issue any consideration about what people's value is or what the funding should be.

Mr Donnelly: Jim, you mentioned value for money a couple of times. How is value for money being determined, particularly when it comes to the outcomes of palliative care delivery? Are there any health economists in the Department of Health?

Mr Wilkinson: There are health economists in the Department of Health.

Mr Donnelly: How many?

Mr Wilkinson: There is one in my group, who has worked through various elements. We have been doing the Hospital at Home element of it.

Mr Donnelly: Are they specifically a health economist?

Mr Wilkinson: They are an economist who is looking at value for money and who has experience of looking at health areas.

Mr Donnelly: Are there any health economists in the Department of Health?

Mr Wilkinson: I am not aware that we have a health economist under the title "health economist", but we have economists.

Mr Donnelly: It is a specific area.

Mr Wilkinson: Oh, it is, I know.

Mr Donnelly: Do you not think that there are any or do you not know?

Mr Wilkinson: Whenever we are doing a particular study and looking for health economists, we usually bring that support in.

Mr Donnelly: OK. Have you done that for palliative care?

Mr Wilkinson: Palliative care in its entirety?

Mr Donnelly: Yes.

Mr Wilkinson: No, we have not. As I said, we are looking at the scoping exercise and breaking down those three elements. I can say, however, that we have not done that for any individual service. As a system and a Department, I appreciate the criticism from the Committee and the fact that there is a definite view that the Department significantly undervalues the hospice and palliative care system. I can say, as many times as possible, that we fully value the service that it provides. We accept the recommendations and are working through implementing them. That will be difficult in financial terms, but that difficulty is not caused by us not valuing or understanding the quality of the work that is provided because we certainly have advice from the Regulation and Quality Improvement Authority's (RQIA) advice on that. It is about working through how we do that. One issue is around governance —.

The Chairperson (Mr McGuigan): In terms of value —.

Mr Wilkinson: — and I might come back to that.

The Chairperson (Mr McGuigan): Sorry to interrupt Danny's questioning. Name another service that the healthcare service provides that it does not fund 100%. You say that you recognise the value. Diane mentioned birth. Is maternity funded at 100%? It is. Every other service in healthcare is funded at 100%. The simple way of ensuring that people understand that value is being recognised is to move towards 100% funding.

Mr Wilkinson: A move towards 100% funding, as we know, is the recommendation. When you talk about every other service being funded, every other service is funded at a commissioned level, but you will be aware — the permanent secretary and the Committee discussed it — that, at the moment, we are estimating a funding deficit this year. I will use a range so that I am not tying it down, but it will be somewhere between £690 million and £800 million. Therefore, as we stand, the Department is facing a fiscal year knowing that it is somewhere between £690 million and £800 million short of what we need to fund the entire system. You ask, "Do you fund all the services?". I am sure that you will hear from every specialist and from maternity services; you will certainly have heard from emergency services; and you will hear from domiciliary care. All of those people will say that they have not received complete funding.

The issue that we are talking about is the methodology that we have for commissioning the hospice sector. We all agree that we will look at that, and the outcome that we all want to achieve is a sustainable funding model.

Mr Donnelly: To go back to the health economists, I am stunned that there is not a health economist in the Department of Health, which gets 52% of the Budget. We do not have a specific health economist — it is a speciality — in the Department to look at outcomes and value for money. You say that you can bring services in when needed. Surely that will be part of the scoping exercise. Will it?

Mr Wilkinson: I am not getting the question here. We have economists in the Department. Therefore, when we are looking at any business case related to any service, we look at outcomes, objectives and value for money, including the value for money that is not about cost. Value for money is also about quality, improvement, outcomes and better delivery, so all those are considered to be part of it. If we need a specialist —

Mr Donnelly: My shock is about not having a specialist health economist. It is a speciality in itself —

Mr Wilkinson: It is.

Mr Donnelly: — and there is nobody in the Department who sits in that role.

The Chairperson (Mr McGuigan): What Danny is saying here, if I can simplify it, is that an economist looks at figures. An economist goes to university and spends however many years there. They look at figures. A health economist is somebody with an additional specialty. They do not just look at the figures: they look at outcomes from a health perspective. I think that we all share Danny's being stunned —.

Mr Wilkinson: Maybe I am doing a disservice to our economists, because our economists will compare the health outcomes that are achieved. When I was speaking to health economists —

Mr Donnelly: I am happy to move on from that.

Mr Wilkinson: — they were actually looking at the economic value of health as opposed to health outcomes.

Mr Donnelly: I am happy to move on from that to the clinical lead, which is recommendation 20. I am glad to see that you have accepted that. Recommendation 20 says that the Department hopes:

What is the delay, given that you have accepted that recommendation? What is the hold up in getting that out as soon as possible?

Mr Cassidy: It is not simply a matter of moving to appointment. There is no agreed job description to specify what that person will do. There is an engagement piece to do with the permanent secretary, the Chief Medical Officer and with other people to make sure that we have a clear sense of what role that person is to fulfil and what sorts of qualifications and experience are needed to do it. We will then move into the appointment process. There is time built into that — I accept that — and a business case will also need to be developed, because it is a new role in the system, to provide clarity on what they are to do. There are processes that need to be completed before we can move to an appointment process, but we will actively pursue that.

Mr Donnelly: Will it be within this year, do you think?

Mr Cassidy: That is what we are working towards.

Mr Donnelly: OK.

Mr McGrath: Thank you for the presentation. A few things are certain. One is that you will be glad to get out the door after this session. It has not been fantastic, and I appreciate that. I have a sense that there is no extra funding coming for this from the Department and that you have been sent in to try to defend accepting a whole load of recommendations.

You are all human beings. Of course you say that palliative care is important. Of course it is important that it is funded. Should it be funded 100%? Of course it should. It is about what we do to help people who are dying and are in their last moments of their lives and doing it with dignity and care and to the best of our ability. It is nearly impossible for you to come in, knowing that there is no extra money, and say, "There are 27 recommendations, and we accept or partially accept 26 of them", because your answer to the next inevitable question about how you will implement them will be, "Well, we do not have any money". There is a conversation that needs to be had, but, in fairness, I do not think that it is one for you to have; spending decisions are political decisions. Therefore, there is a political decision that has to be taken in the Department about whether to fund this. In that regard, the simple question — it might be one of the easiest ones today — is this: on the basis of the report's recommendations, how much additional money is being allocated to palliative care services in the next year?

Mr Wilkinson: The permanent secretary made it clear that we are at a very difficult stage with those budget decisions. There are three elements to that. One is that we do not have a finalised Budget, so we are talking in theoretical terms. We have asked trusts to begin to try to find efficiencies, and to begin to plan to deliver what we consider to be strategic priorities. That is before we get to funding. We have identified palliative care as one of those strategic priorities. One of the methodologies of doing that will involve looking at the shift of 2% of activity and funding. If you are going to shift that, you need to have somewhere to shift it to. Our hospice providers are already major providers of commissioned community care.

The second element is the Department's identifying the priorities that we need to fund before we look at the deficit. We have done some thinking in that regard. We are looking at pay. Critically, we are also looking at some of the palliative care recommendations. When it comes to the ones for which we have already made strong cases for funding, we say, "Subject to funding" or, "Subject to a business case". Roger can describe some of the ones to do with the 24/7 services, and there are some about the expansion of the hubs. Those are plans that we have in place and are talking about internally, but we cannot resolve those discussions until we know what the budgets are and we can say, "Here is what the trade-off is".

In the Department, we fully recognise the importance of palliative care. We recognise the value of the recommendation made by the Committee. The recommendations are really important. We do not criticise the value for money for the service, but there are areas that we want to invest in. We have made the case, in terms of planning, that we want our trusts to consider palliative care as a strategic priority. We are now going through our internal process about our priorities for budgets that we need to spend. That is a difficult choice because, by making something a priority when you have no new money, you are making something else less of a priority, or more savings will have to be found somewhere. We are going through that. We recognise that in palliative care. That is why Gearóid was able to say that the challenge that we have in appointing a clinical lead is to do with the process rather than the funding. We are going to make the case that that is a priority post for us to bring on board.

The neighbourhood model is the only other area that I can reflect on when it comes to investment. We will set up and put in place the management teams; there will be 17 of them. We are quite clear that one of the priority areas is the elderly. Mike quoted figures from the Nuffield Trust. There are some other interesting figures from the Nuffield Trust, where it reflects on the amount of money that is spent in the last year of someone's life, which is, I think, in excess of £500 million. It says that £200 million of that is on social care, and quite a lot of it is spent on healthcare. Quite a lot of the close to £300 million that is spent on healthcare is spent on acute care, and quite a lot of that is spent in emergency departments. That immediately suggests two things. First, the money is not being spent in the right place, and, to support that view, such spend was not in any of your findings. Secondly, there must be ways in which to deliver a better service and spend money better. However, those are difficult conversations because they take time to move, and every area is under pressure.

Whilst I cannot say how much additional money we are putting to palliative care services, we have put it as a priority for funding. We are working on funding plans that prioritise it, but those will have to be considered as part of the wider budget. However, the cases will be made.

Mr Cassidy: If you take a step back from what we are trying to do through neighbourhood care, you see that a lot of it is about secondary prevention: trying to keep people away from hospital and safe in their home and community. Palliative care fits exactly into that space. It goes through the centre of the thinking behind it. The perm sec mentioned an additional funding opportunity on which we are working with Macmillan Cancer Support to try to bring in new money, which, effectively, will pump-prime some of the shift that we want to see.

It is hard to make change in a place where there is no additional money. The models that we are looking at — Macmillan has been really supportive in this — are of proactive care in which people are identified and given support earlier in their journey. The impact is measured by a reduction in unwarranted bed days, so there is a built-in mechanism for reducing cost in the system and therefore repaying the funding that is provided up front and making it sustainable in the longer term. In the context of an £8 billion Health budget, £10 million to £12 million will not change the game, but, in the context of those services, that is significant and can make a real difference. We have people working with us who have done this before elsewhere. They really know what they are doing and have been supportive in that space.

Mr McGrath: I will leave it at that. I remain guided by hope and faith on it, if we are talking about the neighbourhood model as the main way in which we will see additional funding. Take palliative care as an example. We may say that people are dying in emergency departments, so we want to move money to enable them to be in the community and their homes, but I do not see any trust reducing its emergency department cover — it is not going to get smaller; there will not be fewer staff — so where will the money come from for that transfer? Likewise, I do not see there being a reduction in bed count, because the bed count across Northern Ireland hospitals is the lowest that it has ever been. In theory, when we start to shift services into the community, we will say to the trusts, "You can close a ward down, because you have moved all those staff out into the community", but I do not see that happening. I hope that we can get to the stage at which the money goes out.

Mr Wilkinson: That is the really challenging area that we are in in our journey of transformation, as the permanent secretary has described it. It would be great if we were doing this with £200 million or £300 million and saying, "We're going to fund these new services, they will therefore take the pressure, and we will see the pressure in other areas reduce". Gearóid's description of the possibilities that come with the Macmillan funding is a bit like that. It is potentially about saying, "Here is £10 million for you to put a service in place here that, over a three-year period, will reduce your demand. You can then pay back that social capital because you have reduced demand". We might see reduced demand not in beds but in excess beds — corridor beds — which come with an excess workforce that manifests itself in significant agency costs or locum costs. There are funds about which we say, "If you can reduce demand elsewhere, this should provide the funding to deliver it in a better way", but none of it is easy, hence the uncomfortable pulling of our collar when we are rightly challenged on how we will deliver the recommendations.

Mr McGrath: Thank you.

Mr Robinson: I am reminded of the Adult Protection Bill in that a lot of people will be disappointed on the back of that becoming law, because of the simple fact that the money to deliver it will not be available. It is important legislation that is important to a lot of people. The situation is similar to this one. Internally, I predicted that there would be disappointment on the back of it, and there is indeed, not just in this room but in the wider community. I am cognisant of the difficult financial climate that we operate in.

Danny referred to recommendation 20 on the appointment of a clinical lead: will there be an interim clinical lead while the recommendation is being implemented? Has any thought been given to appointing an interim clinical lead in the meantime?

Mr Wilkinson: I will put that in context. It is critical that clinical expertise informs all our thinking and service considerations in our policy and strategy development. That is normally done by having a clinical lead, and the Committee's recommendation is that we appoint one for palliative care, but that is not to say that there is no clinical input into our policy and strategy at the moment. Pending the appointment of our clinical lead, we will use our existing mechanisms, including our clinical engagement group and the Palliative Care in Partnership structure. That is to say not that there is no clinical input into any of our thinking or our policy and strategy but that it has not been done through the recommended approach of appointing a palliative clinical lead. To be honest, a lot of our appointment processes take the same time, whether they are for interim or full appointments, so, rather than making an interim appointment, we are relying on the extant clinical engagement forum and the Palliative Care in Partnership programme.

Mr Robinson: Jim, recommendation 27 referred to bringing forth a strategy. Do you have a timeline for developing a strategy and an action plan?

Mr Wilkinson: There are two things to say. Our priority for a strategy, as identified by the Committee, should be to bring forward a palliative care strategy, primarily an adult one. Our children's strategy still has, I think — Ryan will keep me right — one year to run. The Minister and Committees have rightly said, in a number of areas, "Listen, strategies are great, and we should develop them, but, sometimes, we want actions". Our approach to recent challenges, particularly in maternity and neonatal care and women's health, has been action, and we may take the same approach and do a quick refresh on the children's side to get us an action plan to take us forward for a number of years. On the adult side, however, we need a strategy. I am keen that we put in place a structure to deliver that. Colleagues in the hospice sector have already started to think about how they might inform and work with the Department to develop such a strategy. On the children's side, my initial thinking is that we would be better to look ahead through an action plan that will take us forward a couple of years rather than to pause and do a fundamental strategic review.

Ryan, do you want to say something about that?

Mr Wilson: As you may know, the children's palliative and end-of-life strategy was published 10 years ago alongside our children's hospital and community strategy. They were developed and published side by side with an end date in mind of 2026. This year, therefore, we are turning our attention to what comes next. The palliative and end-of-life strategy is big. A smaller group of people is involved with it. We will be thinking about what is required to replace the previous strategy.

A lot has been achieved under that strategy with limited funding, particularly through the establishment in 2019 of the Paediatric Palliative Care Network, which already has a funded regional clinical lead in place. As you may be aware, that position is vacant at the moment. There have been some challenges with filling it, but there is a renewed effort to get it filled. That is a key post for driving things forward. The previous occupant of the post led a lot of work in bringing trusts together and developing pathways. In addition, each trust has a clinical lead who is funded for one programmed activity (PA) per week and, arguably, could do a lot more if the roles were expanded. That is what the network would like to achieve.

The main point is that, despite limited funding to date, the network has achieved a lot through collaborating and working together as a system. With the adult leads and the commissioners in SPPG, it is now working out what models of care would enable us to respond to the paediatric recommendations in the report. How we refresh and renew the strategy to support that work will be done hand in hand.

Mr Robinson: You have answered my question on the paediatric palliative care consultant, but what has happened to the funding that was available for that post?

Mr Wilson: It is still in place. It is just a recruitment challenge, for various reasons. The funding has not been withdrawn, if that is your question; it is just that the post has been vacated and is in the process of being recruited to.

Mr Robinson: OK. When do you expect the full roll-out of "Just in case" boxes across the trust?

Mr Kennedy: That is being rolled out, as you know. I will come back to you with an end date. It is live. I am happy to follow up with a confirmed end date.

Mr Wilkinson: From the briefings that we have had, Members will be aware that a lot of the recommendations from the big discussion last year, when we were starting to look at winter planning, started to focus on palliative care as an area in which we could do some active work to relieve winter pressures, particularly in ED attendances. We want to make sure that we have a lot of the recommendations, such as "Just in case" boxes, in place for the coming winter. They will be rolled out as soon as possible. We will come back with a specific date on that.

Mr Chambers: Gentlemen, I promise you that this is not a leading question; I just want to give myself a better understanding of the methodology that you deploy in order to arrive at the figure for what it costs to service a general hospital bed. Is the figure based on a patient in a hospital bed being fed and watered with a nurse attending to their needs, or does it take into consideration the fact that some patients require more medical and nursing care than others? Do you factor in the drugs that they are supplied with, or is that a completely separate budget line? Does the rate that you come up with differ across trusts? Even within trusts, does it differ across wards?

I am sure that things have not changed, but I know that, some time ago, each ward in the Ulster Hospital was expected to service two corridor beds, with no additional nursing staff — people had to work a little bit harder. Does the fact that there are a number of corridor beds skew your figures?

Mr Wilkinson: I will bring Roger in on some of the detail behind that. Our objective is to come up with a single figure that we are able to use across the region, taking as many factors as possible into consideration. Roger will give you some detail on that.

Mr Kennedy: The cost that we come up with is a Health and Social Care (HSC) average, if you like. Do costs vary between trusts? Yes, they do. Do they vary between wards in a hospital setting? Yes, they do. Do they vary in the same specialties between trusts? Yes, they do. That is because of some of the factors that you talked about, including skill mix and bed composition. Some wards may have 14 beds, and the staff may have a different skill set. Other wards may have 12 beds with, again, a matching team. There is a total cost there, as far as finance can break those down for us. There are fairly standard cost comparators that we use across all wards and all inpatients in all our hospitals. We pull out the Northern Ireland average; that is the currency that we would use.

Mr Chambers: Does that include the price of drugs?

Mr Kennedy: I am happy to come back to you on the price of drugs. My understanding is that it is mostly about staff. Pharmacy may be separate. I am happy to come back to you on that.

Mr Chambers: Will you come back to me on that one?

Mr Kennedy: Yes.

Mr Chambers: Thank you.

The Chairperson (Mr McGuigan): I want to go back to a couple of points. Diane mentioned Evora Hospice, and you answered her question about capital costs. However, the recommendation went beyond capital costs. It was that the Department should work with the hospice and support its move. Going beyond the capital costs, we are a bit disappointed that the Department has blankly refused that recommendation. I see no reason why the Department would not engage with that hospice to support its move.

You are looking at the paper: are you studying that response?

Mr Wilkinson: I am studying it. We have indicated that we are unable to accept the recommendation. I have said to Evora Hospice that I am open to having discussions about support. I have said that there are difficulties with capital, but I am open to having any discussions as to what support might be helpful from the Department.

The Chairperson (Mr McGuigan): OK. Will the Department continue to engage with Evora in relation to that?

Mr Wilkinson: Yes, in terms of supporting its considerations and deliberations and giving any advice that we can. I have even mentioned whether we can provide support around different funding models that might be available for charities to access. We are happy to do that.

The Chairperson (Mr McGuigan): OK; fair enough.

Another issue was 24/7 support. A lot of stuff came to us, and we have, disappointingly, focused on funding today, but there are a lot of other things. The 24/7 support was a key component of the evidence that we got. You have accepted that recommendation, but, as with a lot of these things, we are not getting any definitive timeline. Some of them cost money, yes, but some of them do not cost that much money. Is there any definitive timeline for when we might see overarching 24/7 support?

Mr Kennedy: On 24/7 access, the regional hub for out-of-hours support is key to that. Our timeline is that, over the next six months, we will begin to scope out the potential of a regional 24/7 hub.

The Chairperson (Mr McGuigan): Hold on. I want to go back. I am smiling, because you said that, within six months, you will have the potential to scope it out: that completely blows my mind. I want to know in which month it will be rolled out. Are we going to get that information?

Mr Kennedy: We have to do a lot of learning from the Belfast hub that will inform the service design of the regional hub. The direction of travel is firmly towards the regional hub, which will complement the neighbourhood model etc. There will be a single point of access, and it will cover the out-of-hours service. It will be vital for the families and individuals who will access that. Yes, the ambition is that, over the next six months, we will draw on the learning from the Belfast hub, as we get to the position to write up the specification for our ambition on that, but it is still —.

Mr Wilkinson: I get the Committee's frustration about our response. It is our response to recommendations, and we have gone along the route of accepting, rejecting or partially accepting them. That has given a flavour of what we are doing. One thing that we are clear about doing, which was one of the recommendations, is looking at how we, as a Department, organise around palliative care and support it in strategy and policy. As you pointed out, that has been a bit disjointed in the Department.

One of the commitments that we have made is that we will create a palliative care team to look at all aspects of palliative care, including policy and strategy development, and work with our operational colleagues on how to deliver it. The networks for operational delivery are more advanced than the policy and strategy teams.

One thing that will happen early on is the development of a detailed and time-bound implementation plan about how we will take forward the recommendations. We will share that with the Committee. I acknowledge that it will probably be well below your expectations on pace, but it will at least give you the timelines, and we will report the progress against that.

In doing that, I want to draw on my experience in other areas. I think particularly of things as important as the cancer strategy and some parts of the elective care strategy, where we pulled together a group of clinicians, experts and stakeholders not only to help to shape the strategy and implementation but to be a sounding board for our ideas on recommendations, timescales and prioritisation. We will certainly involve our colleagues in the hospices in the group to work on the strategy piece. We work well. We have a cancer strategic advisory forum and a primary care strategic advisory forum. We need to ensure that the development of palliative care strategy and policy and implementation of the recommendations are given a profile that is just as significant.

The Chairperson (Mr McGuigan): I understand that none of that can be done quickly. We want to see it being done more quickly than what we are getting here. Given how important it is and how quickly we want to see movement, there is not an alignment between expectations and what we see today.

At the risk of tempting fate, I say that another issue that came up time and again at our evidence sessions relates to advance care planning and the recommended summary plan for emergency care and treatment (ReSPECT) process. When will we see the implementation of that?

Mr Wilkinson: Interestingly, that is linked. I have responsibility for advance care planning as well, along with the Chief Medical Officer. I share the frustration about how long it has taken to move from a well-received, co-designed policy and strategy document to full implementation. Part of that challenge has been resourcing, prioritisation and capacity in the Public Health Agency. I asked the PHA to prioritise it, take it forward and develop an action plan that would allow us to implement all aspects of advance care planning, including the ReSPECT element of it. We have already made some progress. Quite a bit of training has been done at levels 1 and 2 primarily for hospital and care home staff. We made that available as part of the big discussion on advance care planning. We are also working with the Encompass team to make sure that we prioritise getting the electronic version of ReSPECT on to the system so that everyone can use it.

The PHA has now appointed a programme lead to develop an implementation plan for all aspects of advance care planning. I asked the PHA to prioritise that. That meant that it did not have the priority to apply to strand 2 of the scoping study, because I asked it to prioritise bringing forward a detailed implementation plan for advance care planning. I expect the implementation plan to come to me in the next couple of months, and we will be more than happy to share that. That is not to say that work has not already progressed on training and prioritising the medical element of it.

The team that was looking at the medical standardisation pro forma was out with the Committee. The same team will look at the plan. We are doing quite a bit of work with Encompass to ensure that we have the digital system to back up the implementation.

The Chairperson (Mr McGuigan): Danny, you wanted in again quickly.

Mr Donnelly: There are a couple of things. The first thing is the palliative care strategy. The previous one was for 2010-15, which is more than 10 years ago, so it is good to hear that we have a commitment to bringing one forward.

You mentioned the Big Discussion a couple of times: were palliative care providers, such as Marie Curie and the NI Hospice, invited to the Big Discussion? Were they part of the winter preparedness plan?

Mr Wilkinson: I would need to check the details of attendees. I did not manage the attendees, but palliative care was a critical element of it.

Mr Donnelly: They should have been invited.

Mr Wilkinson: They either should have been invited or had been invited or they have been or should have been part of the implementation groups that were looking at elements such as ReSPECT and advance care planning.

Mr Donnelly: Will you find out and reply to us?

Mr Wilkinson: Yes, I will.

Mr Donnelly: Do you think that they should be invited to future discussions, given the critical role that they play?

Mr Wilkinson: The Big Discussion is moving into distinct implementation projects, rather than being an ongoing recurring event, because it has identified key elements of it. Part of the Big Discussion is advance care planning. That will be moving into the advance care planning implementation phase. Part of it will be looking at elements that will move into frailty within the neighbourhood model. It will no longer be taken forward as a separate item.

Mr Donnelly: We will have a briefing on it later.

Mr Wilkinson: That is OK.

Mr Donnelly: Can anybody else answer that? Does anybody else know whether those organisations were part of the Big Discussion?

Mr Cassidy: We are not across the logistics of that process.

The Chairperson (Mr McGuigan): You will not be surprised to hear that we are not totally satisfied with how this has gone, given its importance. There are a number of items there, such as the baseline report, the budget for palliative care, the working cost towards 100%, the bed comparisons, more detail on palliative care involvement in the neighbourhood and, latterly, some other things, such as "Just in case" boxes, 24/7 access and advance care planning.

Thank you for coming and giving evidence. I might recommend when you leave that we invite you back to provide firmer updates and timelines on some of the stuff sooner than you probably want to come back, but it is important for the Committee, and we will not take our foot off the pedal. I am going to make a recommendation. I cannot say until you leave and the Committee gives me the go-ahead to do that.

Mr Wilkinson: Chair, with your leave, I would like to take the recommendations and not report on those but put them into an implementation programme that has timed deadlines for progress. If I have time, I will come back to talk to you about our implementation plans.

The Chairperson (Mr McGuigan): There is a difference in alignment in how speedily we want to see these things done.

Mr Wilkinson: I appreciate that.

The Chairperson (Mr McGuigan): Thank you very much for coming.