Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome the following representatives from the All Ireland Institute of Hospice and Palliative Care (AIIHPC): Fintan Fagan, the chair; Melanie Nugent, programme manager of education and practice; and Paula Pinto, programme manager of policy and engagement. We also have Professor Joanne Reid, chair of cancer and palliative care in the School of Nursing and Midwifery, Queen's University. You are all welcome. I will hand over to you for a brief introduction, and members will then ask questions.

Mr Fintan Fagan (All Ireland Institute of Hospice and Palliative Care): Thanks very much. I will read from a prepared introduction.

Thank you for the opportunity to present evidence to the inquiry into access to palliative care services. The All Ireland Institute of Hospice and Palliative Care is a membership organisation that includes hospices, health and social care organisations, charities and universities on the island of Ireland. The institute's aim, with its 27 member organisations, is to ensure that excellent palliative care is available for everyone at the right time and place across the island of Ireland. The institute's membership includes 12 organisations in Northern Ireland: the five health and social care trusts — Belfast, Southern, South Eastern, Western and Northern; the four hospices — Foyle Hospice, Northern Ireland Hospice, Southern Area Hospice and Marie Curie Hospice; the two universities — Queen's University, Belfast and Ulster University; and the Public Health Agency (PHA).

As the palliative care sector's institute, we know that palliative care services provide excellent care in Northern Ireland. However, we are also aware of the challenges that our member organisations face and the need for further investment in and focus on the area. In preparation for the inquiry, we consulted our member organisations about the areas raised by the inquiry and have already submitted detailed responses.

Today, we want to highlight items discussed with our members that, if moved forward, could make a significant impact. We hope that they will be highlighted in the report of your inquiry. First, there is a need to commit to producing a palliative care policy with associated funding, accountability and an implementation plan in the next three years. The policy should reflect societal values and the importance of ensuring that people with life-limiting conditions receive high-quality care, including at end of life. A new policy will provide a platform to unite Departments, agencies and the wider palliative care sector to deliver a shared vision of the provision of excellent palliative care in Northern Ireland.

I also want to highlight the research from Professor Joanne Reid and colleagues that details the increasing need for end-of-life care over the next 20 years, particularly in community settings across the UK. The study predicts a 46% increase in the number of deaths, with a 36% increase in the number of deaths of people aged 85 years and over by 2040. Increasing death rates have serious implications for end-of-life care provision, and it is unclear at present whether health and social care services in Northern lreland, as they are currently constituted and resourced, will be sufficient to meet future demand. Projections highlight the need for comprehensive planning to ensure that service provision in the community meets the needs of the population. That reinforces the need for a new palliative care policy in Northern Ireland.

I would like to highlight the fact that hospices are acute services that are fully integrated with hospital and community services. Hospices treat complex patients who require multiple interventions and supports, which, when delivered by hospices, result in multiple benefits, including hospital bed savings.

In consultation with member organisations, there was agreement that the funding model for hospices should also be revisited. Members also highlighted the need to establish a clinical lead in palliative medicine who can speak directly to government and Ministers. In the Republic of Ireland, Dr Feargal Twomey is a national clinical lead for palliative care and provides a key role, along with other colleagues in the Health Service Executive (HSE), in supporting the development of palliative care in the Republic. A further point raised by our member organisations is that all hospices should be included in the remit of the Encompass system to enable the efficient and effective transfer of patients and their information. Members also strongly suggested that advance care planning policy should be fully implemented, along with the recommended summary plan for emergency care and treatment (ReSPECT) tool.

We also suggest that there should be a commitment to build on the work of Belfast's single point of contact, which is shortly to be launched. We recommend that that should be developed across Northern Ireland to ensure that people can access reliable, consistent and comprehensive information 24 hours a day, seven days a week.

I will also highlight the institute's recommendation on continuing to support efforts to raise the awareness and visibility of palliative care through initiatives such as our annual Palliative Care Week, which takes place every September, and other sector-wide efforts. There is limited but growing awareness of palliative care among the public in Northern Ireland, but misconceptions persist. The public tend to associate palliative care only with end of life and cancer. There is a lack of understanding about the breadth and depth of palliative care services, which means that people may be missing out on the improved quality of life that palliative care services provide.

In 2024, the institute conducted a survey of public perceptions of palliative care, and we found that nearly seven out of 10 adults in Northern Ireland feel fearful when they hear the term "palliative care" and that over two thirds of adults think that palliative care is for people with cancer. Over 20% of respondents were also uncertain about whether palliative care can benefit people over long periods, not just at end of life. The institute is committed to continuing to raise awareness of how palliative care can support people with a life-limiting condition from point of diagnosis onwards, including through the annual campaign and our palliative hub, which is an online resource providing information and resources about palliative care, and support for further education and research in that area.

I will highlight the point that, going forward, the All Ireland Institute of Hospice and Palliative Care will be happy to support the Committee's engagement and the patient and public involvement volunteer group Voices4Care, and we will be happy to provide any further support to the inquiry. Thanks very much for inviting us here today.

The Chairperson (Mr McGuigan): Thank you very much for coming and for your support. I should have begun by apologising for the fact that our budgetary discussion went on much longer than planned. I apologise now for that and thank you for your patience.

I will dive straight into my questions. In the South, there is 100% funding for palliative care services.

Mr Fagan: Yes.

The Chairperson (Mr McGuigan): What does that look like, and what difference has it made to service provision?

Mr Fagan: The process to get to 100% funding took around eight years. Initially, palliative care was funded under section 39 of the Health Act 2004, which described palliative care services as ancillary to the main services. The HSE had a choice to buy those services rather than having to do so. That was clearly the wrong categorisation of palliative care, because it is integrated into the acute system. We applied to have our service-level agreement (SLA) with the HSE under section 38 of the Health Act 2004, which describes palliative care as an acute core service that is integrated into the acute services. One of the key definitions for us, which integrates us into the acute services, is that all our palliative care consultants and medical doctors are joint appointments by the hospitals and the hospices. The third element, then, is that palliative care was recognised as a specialty in 1995 in the Republic, which ensured that all of our services are consultant-led. That gives them a peer relationship with oncologists and respiratory physicians etc, so they are very much part of that clinical team.

The hospices were 60% to 70% funded from a variety of sources, but that was not viable. A political decision was made that they should be 100% funded and that fundraised income would be used to fund capital projects and extra comforts for patients and their families, research and education and innovative patient care projects. That integration into the acute health system and the GP system was an ambition of Sláintecare, which was the Republic's policy for universal healthcare. That translated into looking at palliative care as one of the areas that would be looked at as part of universal healthcare. That is clearly the case in Northern Ireland as well, when you look at the type of patients who are looked after in palliative care and the integration with the GP in the community, the Public Health Agency and the acute hospitals. Sláintecare recognised that palliative care saves acute hospital bed days and looks after complex patients. We have moved into the area of palliative care rehabilitation as well, which prevents hospital admissions and ensures that people have a quality of life.

It emanated, first, from a policy perspective. We can see in Northern Ireland that the reason why we have included that recommendation relates to the development of a policy in the first instance. The first policy in the Republic of Ireland that defined palliative care came in 2001. It defined staffing levels and the number of doctors and nurses per unit and area. When we developed the 2024 policy, we did a review of how much had been implemented: about 60% of the recommendations were implemented.

The important thing is that the policy was in place. Even though the Republic went to the International Monetary Fund (IMF) around that time and there was no money available or anything like that, we always had the policy. It set the direction for our discussions with the HSE and the Department of Health. It also set the direction for how we used fundraised income. We always ensured that any fundraised income that we used to develop services was consistent with government policy. That was the bedrock of the service. It was a combination of a clear policy that was the bedrock of the service, a recognition of palliative care as an acute service and listening to some of the debates and comments around this. The language being used here is pretty similar: palliative care was perceived as being provided by a private organisation, similar to nursing homes and outside the system.

That is what section 39 of the Health Act clearly said about us. The origins of being in that Act was more to do with public-sector pensions than the provision of the service. By bringing us into section 38, government recognised us as an acute service. It also put the patients whom we look after in a different category so that everybody sees them as being part of the system and that this is not just a nice-to-have charity that everybody likes, respects and would be delighted to support but part of the acute system.

After we got the final agreement from government, the final element was that we would retain the benefits of the voluntary-led organisations, because all of those organisations — I remember visiting Foyle Hospice, and the hospice that I work in, Saint Francis Hospice, was born out of a similar voluntary community initiative — come from voluntary initiatives. Retaining that aspect is important, and retaining the volunteers is important, to the point that government now funds the volunteer coordinator posts. We therefore have the benefit of a well-developed, well-managed and clearly directed acute system of hospice care that looks after very unwell patients and, subsequently, bereaved families. The community is integrated into that system, and it therefore gets an understanding of what palliative care is: our education departments go out to speak to people in secondary schools and so on.

There is a unique opportunity, and the institute would like to see the learning that we had in the Republic when moving towards universal palliative care to be the learning in Northern Ireland as well. There is a move to develop a policy, but policy does not imply funding or a commitment, whereas a strategy does. Until a policy is developed, however, it is hard for the good work of the hospices and universities in Northern Ireland to develop.

The Chairperson (Mr McGuigan): Thank you. Those are eminently sensible solutions: policy followed by funding and integration etc.

You talked about a palliative care clinical lead: what powers and resources would that person need to perform that role effectively?

Mr Fagan: In the Republic, clinical leads are HSE employees. The person would need to be an employee of the Department of Health or the Public Health Agency here — whichever organisation is most appropriate. There is a clinical directorate system in the Republic. They need to be integrated in a clinical directorate. Over time, doctors are being given more leadership positions and are not just administrators. There needs, therefore, to be a recognised function in the health service that has a specific job description, and the person in that role needs to have the ability to bring the other professions with them. Our clinical group, which is national, has a lead for nursing and a lead for allied healthcare professionals (AHPs),and they work together on developing policy.

All the hospices have lots of good education, research and care resources. This is not, therefore, about creating a new central group that has to start from scratch; rather, it is about using the resources and benefits of the existing hospices. In Northern Ireland, you would be looking to the Northern Ireland Hospice, Foyle Hospice, Southern Area Hospice or the Marie Curie Hospice. There are a lot of really good resources and people in those organisations. Given the infrastructure that is in place here, if the right clinical lead and the appropriate administrative support were to be vested in the Department of Health, the Public Health Agency or whatever the appropriate organisation is in the Northern Ireland health system, you would hit the ground running.

The Chairperson (Mr McGuigan): We have been taking evidence on this for a couple of weeks. At last week's evidence session, the Rural Community Network (RCN) talked about the need, particularly along border areas, for all-island cooperation on palliative care. Will you explain the advantages and benefits of that?

Mr Fagan: Yes. Take Foyle Hospice as an example. There are patients in Donegal who practically pass the door of Foyle Hospice when going to the hospice in Letterkenny. I know that Foyle Hospice has a practical proposal in relation to that. It is about access, and, in that respect, palliative care is similar to other health areas, whether that means people travelling to Dublin for cardiothoracic surgery or to Belfast for eye surgery. In one way, that is the same, but, with hospice care, there is something different, in that it is about being local — close to your community and family — so it cannot involve great distances. You could not, I suppose, shift somebody from Donegal to Belfast for hospice care. My hospice is in Dublin, and getting somebody to move from hospice care in Raheny to hospice care in Blanchardstown requires a huge effort, because people want to be in their home area.

Looking at innovative models of care is really helpful. The whole area of oncology is changing, with people being on individual treatments, immunotherapies and all that stuff, and all of us on the island are learning as we go along. We are learning about rehabilitative palliative care, about providing palliative care from the moment when someone is diagnosed with a life-limiting illness and that palliative care for pain management and symptom control has an input into that.

Mrs Dillon: Thank you very much for your presentation. A lot of what you say reflects what we have been hearing, and there are a lot of themes already. I imagine that the Clerk is nearly in a position to write a substantial amount of the report even at this early stage, because there are, more so even than themes, clear asks. That is really important.

You said that it has been over 20 years since the policy was put in place in the Twenty-six and that 60% of it has been implemented, which is great. What big things have not been implemented? Are there things in place that you wanted but are not absolutely what you would love to see?

Mr Fagan: In the Republic, all counties have community palliative care. The majority of deliveries are by the HSE, and the voluntary hospices deliver to the catchment areas where they have responsibility. The gap is in the provision of inpatient units. Inpatient units are planned for Cavan, Drogheda and Tullamore. Once those three units are in place, we will have full coverage across the Republic. Units were most recently put in place in Waterford, Kerry and Mayo. The 2001 report set out a plan with the number of beds that would be needed per catchment area and married the local initiatives with public policy on that provision.

In hospices, we talk about specialist palliative care provision, and the number of staff who deliver that care, whether community palliative care nurses, doctors, nurses or other healthcare professionals, is not what it should be. For example, for the region that I work in, the 2001 report recommended that we should have nine physiotherapists to serve our population and provide rehabilitative palliative care. We have six of the nine, but, again, it is about having the policy in place and knowing that that is how we will get there. That promotes innovation. Knowing that the state will ultimately, at some stage, fund nine for us, we will look at our fundraising income and ask a philanthropic supporter, "Could you fund it for maybe three or four years? Could we do a proof of concept to see how the service develops?". At no point do we create a service that the state has to fund — the organisation has to take responsibility — so we are in a position to provide the service and get the synergy that comes with using the fundraising income appropriately. People want to donate to palliative care and be seen to support hospice care. As a sector, it works well with the community.

We have to ensure that, in general hospitals, we have service provision for the ageing population and the statistical bulge in the elderly population that, research here has shown, is coming. Joanne could talk more about that.

Professor Joanne Reid (Queen's University Belfast): Yes, I am happy to. The work that we did focused on death rates in Northern Ireland and death projections up to 2040. The work certainly highlighted the growing population and what is expected in Northern Ireland, particularly with those over 65 years of age but also with those over 85 years of age. The Northern Ireland Statistics and Research Agency (NISRA) estimates that, by 2043, the number of people aged 65-plus is projected to increase by 56%, which will represent about 24% of our population. A consequence of people living longer is that they live with complex comorbidities. We know that, across the UK, about one in four people have complex comorbidities, and that increases to about two thirds of people aged 65 years and over. Those are the people who, we know, will require palliative care in the future. That growing population is not new in the UK, but what is novel is that the pension-age population in Northern Ireland will grow at a much faster rate than anywhere else in the UK. We will see that clump of older people in Northern Ireland.

The work really helped to highlight the fact that those additional needs are coming and that we must look at them in the context of palliative care provision. We looked at place-of-death scenarios. Similar work had been done in Scotland and England, but it had not been done in Northern Ireland. It really showed the level of service provision that needs to be accommodated to meet the rising need that we will see for palliative care. Central to that, as Fintan said, is the need for an evidence-based policy on which to base care so that we can recognise and respond to the needs of citizens in our community.

Mrs Dillon: Thank you. I have a quick question. We have focused on hospices and inpatient care, but most palliative patients will be at home. Could improvements still be made, even to meet the requirements of the policy that is already there in the South, or is care at home well established, more than inpatient provision?

Mr Fagan: The majority of people want to die at home. Seventy per cent of our patients are treated in the home. In the policy, the key is to make sure that the multidisciplinary team can visit the home. When somebody is at home, we are limited to an initial visit by a doctor for an assessment and subsequent visits by a community palliative care nurse. If you can set it up so that the physiotherapist, the occupational therapist, the chaplain and the social worker are visiting the home as well, that will really help. The second area is engagement with a GP. GPs are really busy with their patient core, but it is about getting an opportunity to find the resources for GPs to visit as well. There is also the public health nurse. It is about getting that engagement.

Not all palliative care that could be delivered at home, in hospital or in a nursing home can be delivered by specialist palliative care, because such a model would be too expensive. Part of the policy is to promote the palliative care approach so that people have confidence in delivering those programmes. We have an example of education in the nursing homes. Melanie can talk about the education that we deliver to the nursing homes.

Ms Melanie Nugent (All Ireland Institute of Hospice and Palliative Care): In conjunction with the Irish Hospice Foundation, we deliver the Caru programme, and that is run across all counties in the Republic of Ireland. That programme provides generalist palliative care education to staff who work in nursing homes so that they can provide palliative care. It is also about referring people on when they need that more specialist care. Having that baseline understanding of palliative care and holistic care is really important, because what it boils down to is the whole person, and people living in nursing homes will generally want to die in the nursing home because that is the place where they live.

It is about being mindful of that and treating the whole person. It is not just about the diagnosis or the disease but about the individual. There is a focus on that. We also have communities of practice across all the nursing and allied health professionals in Northern Ireland and the Republic of Ireland. We share best practice across the whole of Ireland through those multidisciplinary areas.

Mr Fagan: GPs would generally really like to provide palliative care and to do so for people who are at home. Depending on the circumstances and where the practice is, GPs will visit their patients and provide that care. In the Republic, we have to build that into the GP contract and into policy to ensure that GP practices are structured in a way that allows palliative care to be delivered in the community. At the moment, the community palliative care nurse is the link between all parties, and they provide that strong link.

Mrs Dillon: It is useful to know that you have community palliative care nurses. We hear people say that they cannot even see their GP in a GP surgery. That is certainly not a complaint that I have about my GP, just to let her know that [Laughter.]

I know that that is a challenge, and it is not because GPs do not want to see patients. People's ears will immediately prick up, and they will think, "We cannot see our GP in the surgery, so what are the chances of them coming out to our home?". It is all part of that policy and how you develop that.

Mr Fagan: The Department of Health and the HSE are making particular efforts now on GP recruitment. We have lots more GPs now qualifying and progressing through the system. From a palliative care perspective, we want to be ready so that we can provide that education and support. Whether it is Southern Area Hospice Services, Northern Ireland Hospice, Marie Curie or Foyle Hospice, they can provide and be the hub for GP education and support generalist palliative care.

Mrs Dillon: I have one final question that is on a point of interest. You talked about inpatient units and nursing homes. Is a GP assigned to an inpatient unit, or would the GP be an individual's own GP?

Mr Fagan: Previously, the structure in Ireland was that GPs provided the service in inpatient units, but all the inpatient units now have specialist consultants. That model worked well. However, since 1996, when palliative care was recognised as a speciality, we, thankfully, have had palliative care consultants who provide that service in the units.

Mrs Dodds: Thank you very much. It is really interesting. One of the first points in your presentation was on an issue about which I have questioned the Department in Committee. We got a bit of an answer but not a satisfactory one. You mentioned that, under section 39 of your Health Act, palliative care was treated as an ancillary service. That was changed to section 38, under which it became an acute, core service. I still think that that is the difference. Having legal enforcement is one of the most important things that I would like to see come out of the inquiry. We have a letter from the Department in which it says that, at the moment, under our reform Act, it has to commission palliative care but has no mandated legal obligation to do so, as is the case in England, Wales and the Republic of Ireland. Has that been core to the transformation of palliative care?

Mr Fagan: It has absolutely been core to the transformation. In the absence of palliative care being formally recognised through legislation or because the legislation takes a while to come about, if it is recognised through policy and it is clear government policy that it is a core, acute service, the commissioners will not just have to make a contribution to palliative care but will be commissioned to ensure that the service is delivered. From discussions with the institute, hospices in the UK and the commissioners and given how the commissioners are structured, they see that they are making a contribution to the service and are happy to do so. If that contribution increases, that is their success factor. However, in an environment where the commissioners are set up to make only a contribution, you will never get to a point where it is considered to be a core, acute service.

Mrs Dodds: Is it the duty that is important? Is that right?

Mr Fagan: Yes. Section 38 of the Republic's Health Act applies to lots of other services. The Mater Hospital in Dublin is commissioned through a section 38 agreement. It is about how the state engages with voluntary organisations that are companies limited by guarantee. It is a vehicle for a lot of healthcare in Ireland, not just hospices.

Mrs Dodds: The duty is really important. We do not leave caring for mothers who are giving birth to the voluntary sector. Why should we leave caring for people who are in the end stages of their life, which are the most vulnerable stages, to the charitable sector? That is a really important issue. I am glad that you clarified it as being core and important in trying to transform services.

Mr Fagan: It is important to capture the state's involvement in palliative care as a core, acute service while retaining the benefit of the charity, local leadership and engagement with the community.

Mrs Dodds: I accept all that. I am just interested in —.

Professor Reid: You are right. To the best of my knowledge and as far as I am aware, palliative care is the only sector of healthcare where there is that mixed economy. You are absolutely correct in that.

Mrs Dodds: The other thing that I am interested in pursuing with you is specialist leads. I presume that specialist leads are people who work in hospices or in hospices and hospitals.

Mr Fagan: Yes. They are the consultants. There are examples in Northern Ireland of appointments —

Mrs Dodds: Yes, the Royal has them.

Mr Fagan: — of consultants in palliative medicine working between the hospital and the hospice.

Mrs Dodds: We met some of them on the day that we were at the Northern Ireland Hospice.

Mr Fagan: That model works well in our experience. The consultant in palliative medicine sees somebody who is in need of palliative care and looks after them in the general hospital. They make the referral to the hospice services, and, when the patient comes to the hospice services, that consultant is there on the other side with a different team. That journey for the patient and the decision-making process on when, where and whatever else are important. It also ensures that access back to the hospital is appropriate. It avoids an A&E admission by making sure that there is a continuum of care through the consultant-led service.

Mrs Dodds: What does that mean for many of your folk? I keep making this point in Committee, because it has stuck with me and I think about it a lot. There is an issue with seriously ill palliative patients being rushed to an emergency department (ED), where it is wholly inappropriate to treat them when they are in the very last stages of their life. At the Christmas service in Craigavon, one woman described to me how there was nowhere for her sister-in-law to die but in an ED with not even a pillow for her head. When it comes to those things, we need a system with a seamless transfer so that we can avoid a rush to an ED because there is nowhere else to go. How do you make that a reality, given the services that we have here?

Mr Fagan: If you take the Republic as an example, you will see that the provision of hospices across the country and the community palliative care services does not necessarily avoid people dying in hospital or in emergency situations. They will do their best.

Mrs Dodds: Would that not lessen it?

Mr Fagan: It would lessen it, but it would not completely avoid it. I will mention one of the initiatives in the Republic. There was a particular death in the general hospital in Sligo that was unfortunate and inappropriate. It happened in a public ward and resulted in the Hospice Friendly Hospital programme, which the Irish Hospice Foundation developed. It has worked closely with each hospital to create an environment where you have pressurised facilities and all that and where, when somebody is dying, you can put in the appropriate care. You have a room that they can be transferred to, you have the hospice symbol and you can ensure that whatever is appropriate for their faith is provided.

People will die in hospitals. There has to be a palliative care and hospice-friendly approach to those programmes, because, being in the midst of a busy general hospital, even the ones without A&Es, can be the wrong environment for some. It goes back to the policy. If you are setting out what is appropriate for hospices, community palliative care, nursing homes and hospitals, you have it all in that policy and everybody takes the lead from that. Whether it is in research, the universities or whatever, it provides the platform whereby it is set out in government policy that people die with dignity in specialist palliative care and in general palliative care. It therefore provides the environment from which initiatives can come. It needs the leadership.

Ms Nugent: There also needs to be a systems approach, because it is not just about one sector but about having conversations about advanced care planning and having them with family members. It is about making sure that everyone has access to all the care notes, that decisions to refuse resuscitation are all accessible and that everyone is aware of people's decisions and choices, because saying the same thing over and over again gets demoralising for people. Having worked in a hospice for 10 years, I know that it is challenging for people if you bring the conversations up again and again, because you are nearly bringing up that anticipatory grief. People change their minds about different things that they want throughout their disease progression. That is why having conversations with people about palliative care at diagnosis, no matter what the life-limiting illness is, will enhance the uptake of palliative care. People think that palliative care is just about end of life, so it is about ensuring that they will not be afraid of the term "palliative care". It is about quality and helping people live the best life that they can for the duration that they can.

Mrs Dodds: That is really positive.

Finally, you spoke about the coherence of information. From the briefings that we have had so far, we know that that coherence is hugely lacking across Northern Ireland. When we were at Marie Curie, we discussed for a brief period anticipatory drugs and the ad hoc way that those are dealt with in different parts of Northern Ireland. I presume that, because you have clinical leads and specialists, that is not an issue for you. It is difficult when you hear a nurse who has worked in palliative care for years say, "I know what is happening, but I have to try to get a GP to sign off drugs".

Mr Fagan: There is continued development on that. More is needed, and nurse prescribing is really important. Advanced nurse practitioners are also important. Ultimately, no matter what healthcare setting you are in, the doctors cannot do everything or be there for everything. There are limitations in that structure, so the development of advanced nurse practitioners and nurse prescribing is important. Nurse prescribing was done first in Offaly, which is in the midlands. It does not happen in every area, so that is something that, again, needs to be progressed.

Mrs Dodds: Do you have an evaluation of how that works?

Mr Fagan: I do not have that, no. We can look to see whether we can provide it.

Mrs Dodds: That would be interesting to see. Thank you.

Professor Reid: We know that an evaluation is being built into the new Belfast single point of access palliative care service. That will help to provide data that will not only be outcome data that details the number of people who were seen and how quickly they were seen but will look at the voices of patients and those who are important to them, such as their family members, to see what, they felt, the service provided. Those are really important voices to bring into any evaluation.

Mrs Dodds: Thank you very much. That is interesting. Those are just the points that I picked up from some of the conversations that we have had so far.

Mr Donnelly: There are loads of interesting things here. Other members have asked the questions that I was going to ask, but I could talk about this all day. I have a bit of history as a nurse in palliative care. My background is in nursing, and I have delivered palliative care in a hospital setting. We have visited the Northern Ireland Hospice, and we are coming to see you next week, which is something to look forward to.

When we were talking about the impression that people here have of palliative care — they are afraid of it because they think that it means that death is imminent, so it is quite a taboo subject — it struck me to ask this: is the conversation more advanced down South?

Mr Fagan: Paula can talk about Palliative Care Week. We need to do some education on that. Mel has been a nurse in Australia, and she and I were just talking about the services there. They are probably more advanced than we are in the acceptance of palliative care. In general terms, it is felt that palliative care should be put in place as soon as you are told that you have a life-limiting illness and that practitioners should work on that side by side with the oncologist, the respiratory physician or the cardiologist.

Paula can probably give information about what happens during Palliative Care Week, which is run across the two jurisdictions. I will hand over to Paula to talk about the perceptions.

Ms Paula Pinto (All Ireland Institute of Hospice and Palliative Care): We do a perception survey every year to get an understanding of people's feelings about palliative care. I would not say that there is a massive difference in the two jurisdictions. For example, I believe that 69% of people surveyed here said that they were fearful when they hear the term "palliative care", while, in the Republic, the figure was 60%. It is not a big difference, but that is why we keep going with the campaign in general. It is about trying to reach further than just the palliative care sector, so we work with community organisations.

It is not just the Department of Health that should educate people about palliative care; it is about working with the Department of Education and bringing it into those areas. The Department of Social Protection is involved when Marie Curie, for example, brings up fuel poverty and those kinds of issues. It is about education at different levels and having the conversation early in schools and universities so that people are not afraid to talk about it. As Melanie said, advanced care planning can be done at different stages; you do not need to do it when you are sick. We want to bring that education to workplaces and universities. It is about making those conversations flow a bit more.

The institute hosts a lot of death cafes with the LGBTQIA+ community in the North and the South. We have done only three here, but we have been doing them for over two years in the South. People are afraid to talk about the subject with their closest people, but, once they start talking about it in a roomful of strangers, there is a relief and they want to talk about those things, their preferences or bereavement and trauma. There is a need there, but it is about getting out to the public in different settings and making them comfortable about having those conversations.

Mr Donnelly: Did I hear you right? Did you say "death cafes"?

Ms Pinto: Yes, death cafes.

Mr Donnelly: Wow, OK. Is that about bringing people together to have a conversation about what they would like to see?

Ms Pinto: The concept started in London about 12 years ago. We gather around to have tea, coffee and cake, and we allow the conversation to take place. They are facilitated, and I usually facilitate them myself. You allow the conversation to be taken along by people who are sharing their experiences. People who have had palliative care can talk about their experiences, or it can come from the carer perspective. It is not therapy, but it is a way of having conversations that are really hard to have with your closest people.

Mr Donnelly: That is fantastic; it is a brilliant idea.

I wanted to ask you about your funding. You were at a higher baseline in the South beforehand. You were 60% to 70% funded.

Mr Fagan: About that, yes.

Mr Donnelly: We are coming from a position that is lower than that. What has that money been spent on in the year and a half since you have had that extra funding? What are hospices spending that money on?

Mr Fagan: We had a challenge that was similar to the National Insurance issue that is happening here. Eight years ago, government policy on public pay awards changed. The section 39 hospices were automatically linked, for the 60% HSE funding that we had, to the new public pay awards so that we would get the funding for that. It was delinked in 2016, and, straightaway, hundreds of thousands were affected, in a similar way to the National Insurance issue that you see here. That prompted us to say, "God, we're being described as an 'ancillary service'. We need to be described as a 'core service'".

Secondly, we had gaps in the non-pay area for paying for food, beds and all that. Now, as a 100% funded hospice in 2025, all the staff are funded, with the exception of the fundraising staff. That includes the likes of complementary therapy and other areas that originally were not considered to be core posts. When a public-sector pay award happens, it gets calculated centrally by the HSE, and the money gets sent to us automatically. Our non-pay budget is everything that you need to feed the patients, clean the place and do all that. Medicines and all that are funded, as is maintenance and the general upkeep of the buildings. In certain circumstances, the community palliative care nurses' cars and things such as that are also covered, depending on the local arrangements.

We use income from fundraising to fund capital projects. For example, we are building a new hospice at St Francis Hospice in Raheny that will cost the best part of €30 million. We are raising €20 million of that funding from the public, and the HSE is giving us €9·8 million, as well as a capital grant. We use other funding for additional comfort. If somebody buys an electric car for us or we get new beds, fundraising income is used for those. Ironically, often the stuff that sometimes government finds easy to access through capital funding can be accessed with fundraising income.

We also do new initiatives. I used the example of the physiotherapists. We are looking for a philanthropic partner to support our development of an outpatient service for a time. That is consistent with government policy. Our board will take the risk associated with that. We will not say to the Government in three years' time, "We've created this service in the expectation of getting the money". The state putting in the extra amount is part of it. I think that, in the Republic, €18 million was the extra amount that was put in. Putting that €18 million in means that you get proper access to the rest of the €20 million or €30 million raised as fundraising income. There is a synergy, so that investment is worth it.

The other motivation is something that has been done in Scotland: for every pound spent to care for a complex patient in a hospice, £4 would be spent in an acute hospital. We have looked at the Sláintecare project. A number of projects involved some of our team in the general hospital trying to get a hold of the palliative care patients earlier, in addition to the consultants. Some of the physios were in the hospital. We saw that we could get access to the patients who were in need of palliative care a bit earlier. They come into a better model of care.

Mr Donnelly: You can see that saving. Those people would otherwise be uncomfortable.

Mr Fagan: The reality of trying to find savings in health is that capacity is created. We had this discussion with Minister Nesbitt when he was with us. If you go down the route of trying to get and understand the business case and getting the report produced and all that, you will never fund palliative care in the way that it should be funded. In the whole acute system, demand is growing because of the ageing population, as Joanne said. You are creating capacity in the hospital for the patient who is sitting at home, the patient who is not getting into the hospital or the patient who is on the waiting list.

Mr Donnelly: That is a good thing.

Mr Fagan: Yes.

Mr Donnelly: We do not have capacity at the minute for those patients.

Mr Fagan: That is the point, but, when it comes to policy, it should be approached from the perspective of creating capacity, not cost savings. It is hard to prove that cost saving in a general hospital environment, because another patient comes in. Is the next patient who fills that bed cheaper to treat than the patient who left? No.

Mr Donnelly: But they are getting cared for; they are not sitting at home.

Mr Fagan: That is the point.

Mr Donnelly: I have one last question. You mentioned the three-year plan that we have to develop: what is the most important priority in that? What should we focus on?

Mr Fagan: It is about talking to the sector and the likes of Joanne in the university sector and encouraging the voluntary sector to develop the 2001 policy that was developed in the Republic and asking it to lead on it. Professor Tony O'Brien, a palliative care doctor from Cork who has since retired, led on that. Those people are the subject matter experts. They are aware of what is going on and are passionate about hospice and palliative care. The most recent policy is from 2024 and was developed by Professor Karen Ryan. You will meet her next week, and she will set that out when she comes before the Committee.

You have a strong voluntary sector that has developed good services and now needs support to bring those acute services forward. You have an institute here, a cross-border body, that developed without any government initiative or support because there was such a passionate interest across the island of Ireland in palliative care. The HSE, the Public Health Agency and the Departments of Health in both jurisdictions provide funding for us, but, initially, it was very much a community-led initiative, and we really appreciate the support of all the agencies in that.

You have a voluntary sector that works. You have a voluntary sector that works well with government. Any investment that you put into this you will get a return on. As was mentioned, the two journeys in life are the journey on the way in and the journey on the way out, and the journey on the way out needs to be supported, better planned and better resourced.

Mr Donnelly: Absolutely. Thank you very much for that.

The Chairperson (Mr McGuigan): Thank you very much. That was useful and informative. We thank you and appreciate the time that you have given us. We look forward to the visit in, I think, two weeks' time.

The Committee Clerk: It is next week.

The Chairperson (Mr McGuigan): OK, there you go. [Laughter.]

Mr Fagan: It is next week.

The Chairperson (Mr McGuigan): Every day flies past. Thanks very much.