Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Professor Max Watson, who is the director of Hospice UK's Project ECHO. Professor Watson previously provided evidence to the Committee in his capacity as a consultant in palliative care in the Western Health and Social Care Trust (WHSCT). I also welcome Aileen Morton, Hospice UK's policy and public affairs manager. I will hand over briefly to you. We are having the Minister in at 3.30 pm, and, unfortunately, that time slot cannot be moved. Please give an introduction, and we will then move straight to questions.

Ms Aileen Morton (Hospice UK): Thanks very much to the Committee for the opportunity to contribute to its work. We very much welcome the Committee's inquiry, the significant effort that you are all putting into exploring the issue and the focus that that then places on palliative care. Palliative care is essential in order to support people to live well for as long as possible. It is not just about the end of life or even about the last year of life. As people live longer with complex conditions, they may need palliative care in addition to other treatment over a longer period. Helping people to live well until the end is central to the hospice sector's ethos, and we know how much local people value the contribution that hospices make. Hospice UK is the national champion for hospices. We fight to make sure that hospice care is there for everyone from every background. We represent a community of more than 200 hospices across the UK and work with all the charitable hospices in Northern Ireland.

We submitted a full response to the Committee's consultation, and we are happy to pick up on any of the detail in it during the session. In collaboration with the four hospice care providers in Northern Ireland and the All Ireland Institute of Hospice and Palliative Care (AIIHPC), however, we also submitted a letter to the Committee to highlight the hospice sector's two key priorities. The first is that there should be a vision for palliative care, and that vision should take into account existing demand and expected future demand and set out a plan to ensure that people get the care that they need. The most obvious route to delivering that kind of vision is through the development of a new strategy for palliative care, as that would provide an opportunity to bring together the whole palliative care sector to identify what action is most needed and what action will have the greatest impact.

Secondly, charitable hospices require a more sustainable funding model. It is clear across all UK nations that the current model, in which the majority of funding comes from charitable fundraising, is placing hospices under enormous pressure and, sadly, in some cases, is resulting in services being cut or removed. Both priorities would require support from the Department of Health. We welcome the fact that the Programme for Government (PFG) recognises the growing demand for palliative care and that it has committed the Executive as a whole to improving support for those coping with death, dying and bereavement, which we called for in our response to the consultation on the draft Programme for Government. We were, however, disappointed that the three-year plan that the Minister set out at the end of last year did not contain any references to palliative and end-of-life care. When, along with the four hospices, we met the Minister and civil servants just before Christmas, we raised that as a concern and were given assurances that the three-year plan is a very high level plan, that palliative care will be picked up on as more detailed plans are developed and that the outcome of the Committee's inquiry could feed into the process.

We would welcome the Committee's work being incorporated into any next steps for the Department once it has completed the scoping exercise that it has already discussed with the Committee.

As part of the wider direction for health and social care, hospices have a key role to play as part of the shift-left agenda. They bring specialist expertise into local communities, and the majority of care that they provide is delivered in people's homes. As we highlighted in our response, hospices in Northern Ireland provide palliative and end-of-life care to around 11,000 people. They also provide direct support services to over 1,000 family members, friends and carers each year. Hospices already have a substantial reach across the region, but strengthening the contribution that they make could see prevention of unnecessary emergency hospital admissions, improve outcomes for patients and families and, ultimately, deliver savings for the Department of Health.

Current pressures are only going to get much worse as demand increases. People at the end of their life are high users of services, often receiving care in acute settings at a high financial cost to the system. Enhancing the contribution made by hospices could relieve pressure on the system and provide better care to individual patients. Unfortunately, however, we are clear that the hospice sector is in crisis. The 2023-24 financial year was the worst on record for UK hospices. Hospices across the UK are now budgeting on the basis of structural deficits, and doing that is absolutely not sustainable. Although the position of individual hospices may vary, without government action to improve the level of statutory funding, it is clear that the scale of pressures facing the sector means that, for every hospice, it is not a case of whether cuts will be needed but when cuts will be needed.

Finally, I know that you will all be well aware of this, but I want to emphasise that all hospice services are free at the point of delivery. It is, however, fundamentally unfair that some of your constituents are, in effect, having to pay for palliative care services, which are essential services, through charitable fundraising, while, in other areas, a trust delivers such core services directly.

The Chairperson (Mr McGuigan): Thank you. That is a very good point on which to end. In your response to the consultation, you talked a lot about the stuff that others have talked about. You talked about barriers. You mentioned the fact that the North is a rural constituency, and you are doing a report on the impact of that. Will you elaborate on the impact of the rural nature of the North and on your recommendations to the Department to overcome some of the barriers?

Ms Morton: We hope to publish that report in June and potentially hold an event here in Stormont later in the year to explore the issues fully. I highlight the fact that we raised some of the challenges and issues that came through in our work. We had a really good response from people in Northern Ireland, including professionals, about that work. Good examples were provided as well, and people pointed out positives. That is one of the big messages that we want to get out. There are a lot of challenges in Northern Ireland, but that is true of every nation in the UK, whether those challenges relate to hospices or to palliative care more widely. There are good things happening in Northern Ireland, just as there are in other UK nations.

The remote and rural aspect comes down to many of the things that you would expect to hear about, such as transport. The lack of electronic prescribing may have an impact across the whole region, but, in rural areas, it is even more challenging. Families face having to travel much longer distances and potentially having to cross back on themselves to go to a different pharmacist if they get to the first pharmacist and discover that they cannot get their medication. Max may want to pick up on that in more detail.

Professor Max Watson (Hospice UK): Rural communities often have a lot more assets than urban communities. We can house or mobilise those assets, as we have done with Hospice UK, using virtual communities of practice to support the delivery of care across the Highlands and Islands. In rural parts of Northern Ireland, through the Life and Time project in Rostrevor, Warrenpoint and Kilkeel, we are using virtual support and the voluntary sector to provide a service for people who are approaching the end of their life and who need nursing support. They are guaranteed it within 15 minutes. We can talk about the challenges of rurality, but there are also some assets.

The Chairperson (Mr McGuigan): In the previous evidence session, a few questions were asked about the situation in England compared with that here regarding a statutory duty to provide palliative care. How do you think that that has worked, and is it something that we could look at here? Aileen, I will take a stab and ask you to tell us about the scenario in Scotland.

Ms Morton: I do not cover England. I cover only Scotland and Northern Ireland in my role, but I caught up with colleagues in England and Wales ahead of today.

On that legislative position, one point to highlight is that palliative care is impacted on by more than just health and social care legislation, because housing, benefits and fuel costs have an impact on people's experience at the end of their life. On the core health and social care side of things, palliative care in England is now a statutory requirement as part of the Health and Care Act 2022, and NHS England has produced statutory guidance for integrated care boards (ICBs) to follow. That guidance draws on the national palliative and end-of-life care partnership's ambitions for a palliative and end-of-life care framework. In England, it is notable that the all-party parliamentary group on hospice and end-of-life care did a report on that and found that, in essence, the funding that hospices receive from ICBs varies significantly across the country and that the way in which hospice services are commissioned in England is not fit for purpose. That is notable as a duty and what it results in.

In Scotland, palliative and end-of-life care is delegated to health and social care partnerships, which were set up under the Public Bodies (Joint Working) (Scotland) Act 2014. There is a Scottish Government advice note on palliative and end-of-life care. It provides guidance on commissioning that care. A new palliative care strategy is due to be published later this year. It was consulted on at the very end of last year.

In Wales, NHS Wales and the Welsh Government jointly published the palliative and end-of-life care delivery plan in 2017, and a new quality statement was published towards the end of 2022. Wales also has the national programme board for palliative and end-of-life care, which brings together clinical and strategic oversight of palliative and end-of-life care, with working groups sitting underneath it. Hospice UK and Welsh hospices are involved in that. The Welsh Government are also looking at developing a service specification for palliative and end-of-life care.

The Chairperson (Mr McGuigan): OK. Thank you.

Professor Watson: We had such high hopes that that was going to be built in and that the command was going to go out to ICBs that they had to deliver, but the response has instead been piecemeal across England. At the risk of being a little bit cheeky, I guess that it comes down to something fundamental that we have seen across the jurisdictions. It is not about policies and programmes but about delivering them. That is the issue.

I will go back to some of the issues that you raised with our Marie Curie colleagues about accessing services out of hours. In 2016, 'Health and Wellbeing 2026: Delivering Together' made a commitment that, here in Northern Ireland, we would have acute care-at-home services available for everybody. We therefore need to deliver what we said we were going to deliver. We said that we were going to have ReSPECT forms. Fantastic. Brilliant. How do we move from the aspiration and all the preparation to delivering?

The Chairperson (Mr McGuigan): I will ask you the question that you are asking us. Does that mean that we need a policy with an accompanying action delivery plan?

Professor Watson: Something else is needed: accountability. You need to have some —.

The Chairperson (Mr McGuigan): Somebody has to be responsible for it.

Professor Watson: Someone has to be responsible. We said that we were going to do it. Why has it not happened? That was in 2016.

The Chairperson (Mr McGuigan): Is that the clinical lead?

Professor Watson: It is the person who has access to a degree of power and authority. The palliative care in partnership programme board is fantastic at bringing together lots of minds and people who are passionate about palliative care, but it has neither the resources nor the power.

It behoves us to have a different way of working so that instead of just legislating, we ensure that what we legislate for happens.

Ms Morton: In Wales, a new manager was brought into the national programme board for palliative and end-of-life care relatively recently to focus on accountability. In essence, their role was to take the commitments in the Programme for Government and ensure there was concrete action and delivery on them. That is very much our focus. Legislation may be needed to drive action, but it is not fundamental because the systems are there.

Max commented about Delivering Together. That commitment was due to be delivered within three years — by the end of 2019 — so the failure to deliver on that predates COVID. It is not because there has been a lot of change; the failure to deliver on commitments is longstanding. Clinical leadership, and having some power in those positions, is really important, but it is not necessarily about who is in the post; it is about empowering that person so that they truly have the authority to deliver and can be held accountable by yourselves or any other Committee.

Professor Watson: We do not think there is a quick fix in Northern Ireland. It is not a case of saying, "If only we did the same as England". There are aspects of services in Northern Ireland that England could learn from. Similarly, we would love to have the Welsh out-of-hours service in Northern Ireland. If you phoned in the middle of the night, there would be someone there who could use Encompass to look at your chart and give you good advice. The loneliness of looking after someone who is very ill in the middle of the night means that people invariably end up in the wrong place at the wrong time.

You have already heard about the REACT model of palliative care in A&E departments. Can we quickly divert people before they become embedded in an inappropriate place? There are different models out there. We do not have to reinvent the wheel and we do not need a huge strategy; we need to deliver.

The Chairperson (Mr McGuigan): Very good points.

Mr Donnelly: I want to push on a couple of things. You said that it is about delivery not public policy. I absolutely get that, and the things that were committed to previously have not been delivered. We need to go back and deliver what we said we were going to deliver.

Yesterday, we were in St Francis Hospice, Dublin, which is an amazing organisation. One of the key things that the people there told us was that being considered as a core service was fundamental to their developing a palliative care strategy and their full funding model. How important is that? What can we do to push forward something similar?

Professor Watson: I know the St Francis Hospice and Fintan well. The process was very important, but building the relationships with the Department was perhaps even more important. Having a policy is really helpful, but having a commitment to delivering it is even more helpful. Developing a policy that is realistic, as opposed to aspirational, is important. The process in the Republic of Ireland took seven or eight years, and the outcome of developing the relationships and the belief in what was needed came in the policy. However, the policy was the outward manifestation of the trust and belief that the service was core and could be afforded in the healthcare system. If the Google money had not been there, I am not sure that they would have been able to do it.

Ms Morton: One piece of learning from what has happened in the Republic of Ireland in recent years is about the early role of the hospices in providing aspiration, leadership and ambition, and showing how it could be driven forward. There is very much a commissioning approach taken with hospices, and there is a business transaction: the Department needs services delivered, and the hospices deliver them. However, hospices are not businesses; they are charities and they are committed to delivering for the local communities and working with them. There is the opportunity to bring in hospices earlier as part of that process. When civil servants spoke to the Committee in January, they said that the hospices would be stakeholders and would be involved early in the design of the scoping review. As far as we are aware, however, none of those discussions have happened yet, which is frustrating, given that the original timescale that was set out to you was within six months. We are running behind on that already.

Mr Donnelly: Has there been no engagement with the Department?

Ms Morton: Hospices have been asked for information for that audit. The Department has less sight of the commissioning that trusts carry out. There has been no wider engagement on the design of the scoping review and what is needed from it.

Professor Watson: The opportunity that palliative care offers is completely missed. A third of patients who are admitted to emergency departments — a third of the patients whom you see when you walk around a hospital — will die within a year. They have palliative care needs. If people had access to good palliative care, and if there was parallel planning so that they were getting acute services with palliative care, they could be prevented from having inappropriate deaths and inappropriate medical treatments and could have a good end of life. If, however, your understanding of palliative care is that it is only about death and dying, you miss out all the things that could really contribute to the whole system by decreasing costs and improving people's quality of life in their last year of life.

Mr Donnelly: Absolutely.

Professor Watson: Viewing hospices as the icing on the health service cake is sad. We need to be fully integrated.

Mr Donnelly: On the subject of integration, we had the Ambulance Service with us recently. The witnesses were talking about a recent development whereby specifically trained paramedics make judgement calls on the call-outs that you have talked about. Is there engagement with the Ambulance Service on that? If so, is it of benefit?

Professor Watson: Across the UK, very much so. Our paramedic colleagues are really keen to have that training and support. They are the ones who often bear the biggest moral injury from taking patients to A&E departments when they know that that is inappropriate. We have seen a trend across the UK in which paramedics of a certain age are seeking to lengthen their careers by developing palliative care interests, and we are seeing ambulance services across the UK develop particular palliative care services. We support those, using Project ECHO to build communities of practice online. The paramedics involved are very keen, because they are at the cutting edge. In Sheffield, south Yorkshire, training programmes are being provided, and we also work with the London Ambulance Service, which really sees such work as being a crucial part of paramedics' training.

Mr Donnelly: You are seeing that integration happening now. It is becoming more integrated across the health service.

Ms Morton: Across all the UK nations, there is more recognition of that need. The Ambulance Service is a key part of that. The Scottish Government have just put in place frailty teams at emergency departments. In essence, there is a need to divert people who do not want or need to be in acute settings and to try to ensure that they can be cared for in a more appropriate place.

Professor Watson: The driver for that is sitting outside A&E departments for 12 hours with a dying person in your ambulance.

Mr Donnelly: Absolutely. That is completely inappropriate. Thank you.

Mrs Dodds: Thank you for the amazing work that you do.

I will pick up on a couple of things. I have told this story before in the Committee, but I make no apology for repeating it. At Christmas, I was at a Southern Area Hospice Services ceremony. I met a lady there who was talking about her sister-in-law. She had been her sister-in-law for maybe 50 years, so it was a lifelong friendship. She said that her sister-in-law went into A&E and had nowhere to die. She died in A&E.

The impact of that on the person who is gravely ill and the impact that it leaves on the family are very serious.

In the previous evidence session, representatives from Marie Curie talked about the REACT programme. I have forgotten where they said that was.

Professor Watson: Bradford

Mrs Dodds: It was Bradford. Do we have anything like that in EDs in Northern Ireland? You say that there are things that we can do that are more immediate while developing relationships and integration and the strategies for how we need to build the service. Do we have anything like that in Northern Ireland? I understand that we have a rapid response team in three out of five trusts, but do we have anything like that in our acute EDs?

Professor Watson: I am not aware of a specific programme in Northern Ireland that is like the REACT programme. I have huge admiration for our ED staff, who do their absolute best in difficult circumstances to ensure that as much dignity as possible is given. Obviously, they are limited in what they can do. I see the moral injury to my colleagues who work in A&E and really try in that area. The need to be able to identify people early and prevent them going A&E inappropriately, as well as having some sort of facility to ensure that, if people are going to die imminently, they can have a

space is recognised. Whether or not it can be applied, however, is piecemeal and depends on the burden that is on a unit at the time.

Mrs Dodds: We see that there is a policy need in relation to palliative care and a long-term need when it comes to how we proceed with palliative care and plan for the future, given what we know about Northern Ireland's demographics. As Órlaithí mentioned, however, there are also things that we could do that are more immediate, and I wonder whether something like that could be one of them.

I spent some time visiting Craigavon Area Hospital's ED in January. It was fairly brutal. That was not the fault of the staff, who were doing amazing things, trying to take care of as many people as possible in difficult circumstances. It is not really about the staff but about how we embed in EDs the recognition that, if someone is very ill and has palliative care, they need to get an assessment of their needs quickly and be treated quickly so that they can be sent home or to wherever is appropriate at that time. I would not like every recommendation in our report for the Department to be long-term, because the Department is good at having working groups and funnelling things here, there and everywhere. We need recommendations that will have an immediate impact on patients.

Ms Morton: Like Max, I am not aware of anything in Northern Ireland that is structured like the service in Bradford that was mentioned. There are examples — I do not know whether we are best placed to give them to the Committee; perhaps some of the other trusts could give you them — of individuals driving some of those improvements. Pilots and other options are being looked at, but that structured, strategic look is missing.

We make that comment about the Palliative Care in Partnership programme more broadly. In many ways, it is really positive and a great way of bringing people together. When you are in one of those meetings, it is clear that people care: they are knowledgeable, passionate and informed. What is lacking, however, is structure, governance, decision-making ability and, ultimately, accountability for what has been delivered. You need to bring the sector together — all the partners, including the charitable sector — and have people agree on the priority and how it can be delivered. You then need to be clear on who is accountable for that priority and where the lines of accountability run, right down to the emergency department door.

Mrs Dodds: Do you see that accountability lying with a clinical lead? Ultimately, accountability lies with the Minister. Do you see accountability lying with the Department? The Minister cannot be over everything: that is fair enough, and we all understand that. However, do you see that accountability lying with a clinical lead for palliative care? How do you see that developing?

Ms Morton: We have highlighted the fact that a clinical lead would be helpful. It would definitely be a starting point. It was notable that, at a Hospice UK conference in Glasgow in November last year, we had a panel session on the Tuesday afternoon with the clinical leads from every nation, including the Republic of Ireland. Northern Ireland was represented by a volunteer from the Regional Palliative Medicine Group (RPMG), because there is no clinical lead here. That is a standout issue for Northern Ireland compared with everywhere else.

I do not know that we would necessarily want to see the clinical lead with direct responsibility for all of it. It is not necessarily about one person. Something like the Palliative Care in Partnership programme board could have that overarching accountability, but it would need the funding and capacity to take on that accountability, the decision-making structures in place and the necessary authority. Often, those updates show really positive work, but there is no structure in place to allow that to be expanded. The just-in-case boxes that started in the Western Trust are a really good example of that. They are now being rolled out but not in a structured way. It is being taken forward on a trust-by-trust basis, rather than the pilot being evaluated, everyone agreeing that it is good and then being rolled out on a structured basis across the region. That is the kind of approach that is needed.

Professor Watson: If you go back to what Edwards Deming said:

We are getting the results of our system. If there was improved domiciliary care at home, maybe your friend would not have had to go into the A&E department in the first place. If patients on the wards were being identified earlier and were getting the appropriate palliative care, maybe they could be discharged to the appropriate services, which would free up some beds.

The system is not working. I am so old that I have been around for report after report and scoping exercise after scoping exercise. What I have not seen is delivery. It is not just in Northern Ireland; we see it across the UK. We see lots of good intention, but where is the skill in going from good intention to delivery? Even small delivery would be fantastic. If we can get a culture of delivery, it will be transformational.

Mrs Dodds: Thank you.

Mr Robinson: Professor Watson, when you last presented to us two weeks ago, you said something that stayed with me. You said that for the last 20 years your sector has had a number of asks of the Department, yet still those asks have not been delivered on. That fits in nicely with what you are saying to us today.

In the discussions that you have had with the Department in recent months on the current funding model and the palliative care clinical lead, what has been the Minister's response? Your comments two weeks ago resonated with me because of the fear that I have about the inquiry, which is that, ultimately, the Committee will do a heck of a lot of work, as it has been doing, and present our findings to the Department, which will, no doubt, roll out a palliative care strategy. However, I fear — shame on the Department, if this happens — that it will lie on a shelf gathering dust. There will be some tinkering and some parts will be delivered, but much of it will not. Do you share that fear?

Ms Morton: Our meeting with the Minister just before Christmas was positive. Everyone around the table recognised that there was a different tone to it. The Minister was very positive about the contribution of hospices.

He said that they absolutely would be a priority for short-term funding if he had that funding available but that the financial position is a very difficult one, which we accept.

We share your concern about a strategy. We look at some of the other strategies, such as the cancer strategy and the commitment to palliative care funding in that, and they are all being delayed. That is true for the children's palliative care strategy as well. At this point, if we were asking for a new strategy, we would want it to be for adults and children. The children's strategy expires next year. Fundamentally, it contains what it needs to contain, but it is not being delivered in full. Delivery is what is needed.

Professor Watson: We are conscious that, with increased military spending and with what is happening in the borders, there will not be a huge resource for us. Therefore, investing resource in strategies or more scoping exercises does not resonate with us. It feels like an episode of 'Yes, Minister' in that we go round and round and round. Maybe that is a culture that has existed. The Department contains good people who want to achieve change, but there is always a caveat in why they cannot deliver it. How do we get over that hump? How do we move to being a jurisdiction in which policy is decreed and delivered and civil servants do not say, "Well, you can't do that because of this or this or this"?

In my only experience with the Department in recent years, before I even sat down I was told, "We've got no resource". As a palliative care person, it felt as if we were just being told, "You drive the train, we'll take care of the track. Leave it to the big boys because you don't really understand the issues". However, the issues that we are dealing with every day are like the ones that Diane Dodds talked about. Patients are hitting services that have the capacity to deliver but are not able to deliver because key resource is not in place.

Ms Morton: The Department has talked about a scoping exercise. We used the phrase "strategic review" in our consultation response. That audit of services is being delivered but what is needed alongside them is a population-based needs assessment. In essence, you can work out what is being delivered but you also need to know your population and need, and then from that you need to map who is commissioning the services to meet that need. You should have clarity. For example, look at standard models and the service specification. Ultimately, you then need to measure whether you are meeting that need. We say in our paper that qualitative as well as quantitative measures should be included. It is not enough to say, "x number of people"; it is also about the experience that they had, the outcomes that were achieved and whether that was the best that could have been delivered.

Professor Watson: What can we anticipate? For example, we have not had adequate workforce planning for years. What will it be like for me when I am dying?

Mr Robinson: For all of us.

Ms Morton: That is one of the challenges. You are all well aware of the demographic shift and the growth in demand that is expected, but one of the challenges is that, in 15 or 20 years, your working-age population to support that older population will have shrunk. Who will provide the care, and how do you manage and map for that need? We are talking a lot about projected need, but 2,000 fewer people a year were dying when the last strategy was set out. There is already new demand that has not been factored in since the last time a strategic view was taken on what was needed.

Mr Robinson: We need a policy that is deliverable rather than aspirational.

Ms Morton: Exactly.

Mr Robinson: That was the line of the day.

The Chairperson (Mr McGuigan): Thank you, Aileen, and Professor Watson. We really appreciate you giving your time and taking our questions.

Ms Morton: No problem. Thanks very much.

Professor Watson: Thank you.