Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Liz Cuddy, chief executive of the Southern Area Hospice; Bridget Lynch, the hospice's director of care; and Bernie Torley, the hospice's nurse manager. Thank you very much for submitting your consultation response, for meeting us when we were down at the hospice and for coming here today. I will hand over to you for some brief introductory remarks, after which members will ask questions. We have three oral briefings today, so I ask members to try to be succinct when we get to questions.

Ms Bridget Lynch (Southern Area Hospice): Thank you for the opportunity to meet today. We welcome the inquiry and thank the Committee for prioritising it.

The Southern Area Hospice has been providing specialist palliative care services to patients and their families for over 35 years, serving communities across the Southern Health and Social Care Trust area, including in Counties Down, Armagh and Tyrone. We support individuals with any palliative diagnosis, helping them to live well for as long as possible and to die well. Care is delivered through inpatient and community-based services. We have a highly skilled multidisciplinary team (MDT) that supports patients and their families. The team focuses on the whole person, addressing not only physical health but emotional, social and spiritual well-being.

Our 12-bed inpatient unit provides specialist palliative care for patients who require complex symptom management, respite and end-of-life care. In the year ending March 2025, we provided specialised care to 239 patients. Of those, 58% were discharged to their home or preferred place of care with improved symptom management. Our community services offer integrated, multidisciplinary palliative care for adults and their families at home or in one of our hubs in Dungannon or Newry. Over the past year, we have supported 664 individuals, which is an increase of 10% on the previous year. We did that by providing 7,360 therapeutic sessions for patients, carers and bereaved families.

The inquiry comes at a time when those involved in the delivery of palliative care services see not only a changing landscape, necessitating different approaches, but flaws in how services are currently commissioned, funded and delivered. We will highlight some of the key challenges here today. Studies in Northern Ireland predict a significant increase in the number of deaths by 2040, with projections indicating a rise of up to 46%, including a 36% increase in deaths among individuals aged 85 and over. The Southern Trust accounts for 20% of Northern Ireland's population. It has the second-largest resident population of all trust areas and is the fastest-growing region, particularly among those aged 65 and over. That demographic shift has already led to an increased demand for palliative and end-of-life services in our inpatient and community settings.

Despite that growing need, only 12 palliative care beds are currently commissioned in the Southern Health and Social Care Trust area. Furthermore, there are no dedicated 24-hour multidisciplinary specialist palliative care services in the acute or community settings. There are also significant gaps in palliative care provision during the out-of-hours period, which accounts for over two thirds of the week. The demand for services continues to rise, with cases becoming more complex and requiring extensive clinical management and psychological intervention. Notably, 75% of inpatient admissions last year were for complex symptom management.

There is also a noticeable increase in younger patients, aged 25 to 64, being diagnosed with advanced disease. Of all inpatients admitted in 2024-25, 40% were under the age of 64, and 10% were under the age of 49. Additionally, the number of patients receiving a late-stage cancer diagnosis is growing, resulting in more individuals spending their final days — in many cases, a short number of days — in a hospice. The percentage of patients dying in a hospice has risen to nearly 40%, compared with approximately 35% last year.

The demand for psychological services has also increased, as many patients and families struggle to process the emotional impact of their circumstances. In our inpatient department alone, beyond medical and nursing care, therapeutic support sessions delivered by social workers, chaplains, physiotherapists, occupational therapists and complementary therapists have increased by over 25% on the previous year. It is now the norm for our multidisciplinary team to support people with serious distress and anxiety.

The human cost of inadequate patient experiences and poor symptom management is well documented in Marie Curie's 'Better End of Life Report 2024'. However, it extends far beyond the individual with the diagnosis. It deeply affects families, shaping their grieving process and, in many cases, leading to complicated grief. Consequently, the demand for our bereavement services has significantly increased, with many individuals presenting with high levels of psychological distress and complicated grief. This year, 232 bereaved individuals received support, including 27 children under the age of 18, all grieving the loss of a parent, and 16 young adults under 25. Improving symptom management and patient-centred care is about not just medical treatment but safeguarding the emotional well-being of those left behind. Addressing those gaps is crucial to ensuring that every individual receives care that honours their life and allows their loved ones to grieve without additional trauma.

We need an up-to-date palliative and end-of-life care strategy in Northern Ireland. We also need a legislative framework to guarantee the right to palliative care and to mandate adequate funding and resources for these essential services. There is no clinical lead in Northern Ireland, despite that having been discussed for many years. Having one would be a significant step forward. The immediate implementation of the advance care planning policy is also critical, including the recommended summary plan for emergency care and treatment (ReSPECT) form and process to ensure that timely do-not-attempt CPR (DNACPR) discussions take place to safeguard patient autonomy and promote high-quality end-of-life care.

We believe that hospices are not fully integrated with the services in the trust. We are often not involved in planning and preparation processes. That leads to a disjointed approach and means that we cannot offer as much support to acute and community services as we could. More importantly, if that were improved, it would positively impact on the experience of patients and families trying to navigate the system.

As you have all heard before, palliative care services in Northern Ireland are highly fragmented and often described as a postcode lottery. Services vary significantly across trusts, with inconsistencies in structure, leadership, funding and delivery. Access to out-of-hours palliative and end-of-life care is particularly inconsistent, due to lack of appropriate funding. As a result, availability is often determined by location rather than patient need. The variations lead to significant inequalities in care, leaving many individuals and families without timely critical support.

Recognising the gap, Southern Area Hospice developed an out-of-hours nursing care at home service. The service provides on-call nursing support at night to patients and their families at end of life in their own home. The impact of the service cannot be overstated. It not only ensures that patients spend their final moments in their preferred place of care but significantly reduces unscheduled A&E visits, during which patients have passed away in corridors. Such services demand immediate, recurrent funding.

Establishing a single point of contact would enhance service accessibility and ensure that individuals receive timely and coordinated care. The lack of care packages has led to delayed discharges from the hospice and, at times, prevents patients from dying in their preferred place of care. That causes significant distress for patients and their families and is simply not acceptable.

Integration of hospices into the Encompass system is essential and needs to happen soon. The early identification of patients with palliative care needs continues to be a challenge. Proactive identification is vital for timely intervention and for enabling patients to participate in advance care planning discussions, ensuring that they receive appropriate, person-centred care. We know that, currently, one in four people dies without getting the care and support that they need at the end of life.

Investment in the multidisciplinary specialist palliative care workforce is essential, particularly in succession planning and commissioned education and training across all providers, including hospices. Hospices are an acute service playing a crucial role in the broader framework of palliative care. However, we are not funded accordingly. The funding that we receive from the strategic planning and performance group (SPPG) is not in accordance with the 2004 circular and is significantly lower than 50% of the cost to provide hospice services. For example, in 2024-25, it was 35·6%. The contract with SPPG needs substantial review. Hospices rely on funding by the public and short-term funding opportunities to help to secure the resources for all services.

Given the vital role that hospices play in the healthcare system, there is an urgent need to establish a sustainable, long-term regional funding model. Such a funding model should, in our view, replicate that implemented in Ireland, where 100% of hospice service delivery is funded by the Government. That would provide stability, ensure that high-quality palliative and end-of-life care remains accessible to all who need it and enable service development. The Southern Area Hospice services operate from a 65-year-old building. We look after that building very well, but it is not sustainable for the future. We have been working on a business case to establish how we improve our facilities, and, whilst it is a work in progress, we know that it will require significant capital investment. That is a challenging prospect when our revenue funding model is under ever-increasing stress.

Despite the key challenges that I have highlighted today, we have nonetheless continued to deliver high-quality specialist palliative care. Addressing these challenges would not only safeguard that standard but empower us to play a more pivotal role in the provision of specialist palliative care in the Southern Trust area, therefore enabling the further development of our service to better meet the evolving needs of our population. Thank you.

The Chairperson (Mr McGuigan): Bridget, thank you very much. You talked about the vital role that hospices play. We want to put on record our thanks for the work that you do in providing that service. During our inquiry, we have seen the vital work that you do, and your evidence was very useful. You identified the role that you play, the flaws in the current system and the changes required. That was extremely useful for us and probably answered all the questions that I might have asked.

You picked out a couple of things, including the postcode lottery. Obviously, we want to see equity of health provision right across the North. It might be useful if you could identify some of the existing flaws and the impacts that they have in the Southern Trust region. If you had sufficient and sustainable funding, what additional things could you do that may be happening in other trust areas? What impact would that have on patient outcomes?

Ms Lynch: In the document, we talk about the gaps in out-of-hours services. We developed a pilot: our out-of-hours on-call nursing support service. Unfortunately, because of funding, we have been able to pilot that in only one area: BT35 and Newry city. We would love to be able to extend that to the other areas. To date, we have supported over 100 families. That service provides support. There is an on-call nurse. We receive referrals from the specialist palliative care team, GPs and district nursing. If patients and families are in distress at night and require symptom management, they are referred to our service. Our community nurse goes out and does an assessment and ensures that all the appropriate anticipatory medications are in place.

At 10.00 pm, that family will receive a phone call from our on-call nurse, who, if there is a need or anything going on at that time, will provide advice and guidance. Equally, they are at the end of the phone to advise and guide in the middle of the night, or they may go out and visit the family. The next day, there is follow-up care from our community nurse, who contacts the district nurse and updates them on what has happened during the night to ensure that continuity of care, a process that is reciprocated in the afternoon.

Currently, we are able to provide that in only a small area, but the impact has been phenomenal for the families and for the patients, who are able to die in comfort and peace in their own home. There is support for the family and reassurance. Equally, there is reassurance to the providers during the day from that continuity of care. The feedback from professionals in the area is that they would love to see that service extended.

That is one example of what we mean when we talk about a postcode lottery. Bernie, do you want to add anything?

Ms Bernie Torley (Southern Area Hospice): I reiterate that. Part of the master's that I am doing is an evaluation of the service. The feedback has been phenomenal. Time and time again, I hear, "If you could only spread it out". You do not want one person getting a Rolls-Royce service when somebody who lives at the end of the same road but in a different postcode, is not. We set that service up because we identified the gap, and it was very much needed, but we would love to be able to upscale and spread it, given that the impact, as Bridget said, has been phenomenal.

I also do the odd shift on the service. When you make that phone call at night, you can hear the relief at the end of the phone — it is palpable. It really makes such a difference.

Ms Liz Cuddy (Southern Area Hospice): Look at our statistics on patients' underlying diagnoses. Hospices are well known for working with patients with a cancer diagnosis and less well known for working across the piste of palliative diagnoses. If the system were less fragmented and we had more secure funding, we would be able to offer services to all palliative patients, whatever their diagnosis. It is about breaking down the perception that hospices are only for cancer patients with a palliative diagnosis. Our scope is much wider than that.

The Chairperson (Mr McGuigan): Funding, obviously, comes up all the time at this Committee. You were supposed to get 50%, but you say that you are getting much less. Is there engagement currently with SPPG on the funding model and funding for moving forward?

Ms Cuddy: The SPPG works hard in the palliative care arena. Our view is that the 2004 circular has never been implemented in the way intended. It is definitely not implemented literally. Our contract, because it is out of date, does not necessarily reflect all the services that we offer. When providing commissioned services, it is really important that your contract reflect what you do on the ground. As we said, last year, SPPG's contribution was 35·6%, and that was net of our costs to deliver income generation. We generated income of over £3·5 million last year.

The Chairperson (Mr McGuigan): OK. Finally from me, you talked about needs. This Committee inquiry will produce recommendations. If one recommendation were to be the ability for you to influence and update regional strategy, which three key priorities would you boil that down to? Which three would absolutely need to be in it and would have the maximum impact?

Ms Cuddy: We would like a clinical lead: it is important to provide that overarching assurance and facilitate development in the path of care strategy. We need to look seriously at legislation: we think that it should be rights-based legislation, but it could also follow the legislative approach that Ireland took, where a more secure funding model secured the providers and, by doing that, increased access to care.

Short-term priorities include letting us into the Encompass system sooner rather than later. A strategy could also look at early identification, because we see more and more patients presenting with a very-late-stage diagnosis. Our ability to help them to live well for as long as possible is seriously compromised by late diagnosis. Everything that we have talked about and everything that we have presented in our written evidence could be addressed in a strategy. We are concerned: we do not think that not producing a strategy because we do not have the identified resource to deliver its outworkings is necessarily the logical order.

Ms Torley: The implementation of advance care planning in respect of informing the process is a big priority. It is shocking to see the number of patients admitted to our hospice for end-of-life care who have never had a DNACPR discussion. Again, there are multiple reasons for that. There is a lack of early identification. It all comes down to resource, as you know. That is key for me. It is the moral distress that is caused to patients by not having had that discussion and then coming into the hospice in a crisis and having to have it, or through having the discussion multiple times. It impacts on patients, families and staff. Advance care planning is sitting ready to go and is one of the key priorities.

Mrs Dillon: Thank you for the presentation. Apologies that I am not in the room with you. Thank you also for facilitating our visit to the Southern Area Hospice, which was very helpful, certainly for me. I did work experience at the hospice over 30 years ago. You said that the building is 65 years old. In those 30 years, very little has changed, which is reflective of the funding model. Everything that you raise, which requires a significant effort in itself, has to go into the services, and rightly so. If you were in the same position as hospices in the South, whose services are 100% funded, you would be able to invest in that building and its surroundings. At the end of the day, these people are very often at the end of life or not in the best circumstances. The services are vital and necessary. However, surroundings are important, and we know that. It is important that we focus on that in the inquiry and in what we ask the Minister to do.

You will know that your priorities are similar to those that other people in your position have told us about. This, however, is the first time, I think, that I have heard anybody say so clearly that there has been an increase in the number of people getting a late diagnosis. I have been saying that for quite some time. Anecdotally, from dealing with people in the community and families who are in that circumstance and who get a very late diagnosis, I felt that something was not right and that something was happening that we were not being made fully aware of. I am keen, Chair, to include that in the inquiry and to ask the Department whether it has any figures on it.

This is a question for Bridget, Liz and Bernie. Has anyone ever done an assessment — I am not suggesting that this would happen — of how much it would cost the Department if your service was not there? These people will not disappear; they will need to be looked after. I am talking about not just the inpatients but the people at home and the families whom you support. Has the Department, you or anybody else ever done an analysis of the cost to the Health Department if the hospice was not there? Do you know?

Ms Cuddy: The short answer is that we do not know. We know what it costs us to provide our services. We believe that we run a very efficient organisation. I suggest that, if those services were provided elsewhere, they would be even more expensive than what it costs us to provide them.

I am not aware of any piece of work that has been done to show what would happen to the patients and the family members with whom we work if we were not there. However, I draw the Committee's attention to the fact that there is a lot of evidence on what happens if a palliative care patient who is in distress, owing either to symptom management or pain control, ends up in A&E. We know the pressures that A&E departments are under, but there is clear evidence to show that that is a very poor way for that person to get care. It causes a lot of distress, and it is not effective. There is lots of evidence that suggests that, were we not there, some of the outcomes for those patients would not be desirable.

Mrs Dillon: We are well aware of that. To be fair to you, we have a clear understanding of that. I guarantee that, were you not delivering that care, the cost would be significantly more. Everything that we have looked at in the health service tells us that. Do either of the other two ladies want to comment?

Ms Lynch: Linda, we talked about the out-of-hours service. We know that we have cut costs related to A&E visits. We know that we have prevented a good number of those patients ending up in A&E. In looking at costs, it is also important that I highlight the human cost and, as Liz pointed out, the trauma that is caused to families and people who are actively dying. The experiences of the family can add to the health service's cost, as people may be off work or attending GP appointments or mental health services. The services that we provide to support them through that reduce some of those costs. A person does not need to be known to the hospice; if they have been bereaved by a palliative illness, they can access our services. As I highlighted in the document, the number of people who attend our services with complicated grief is very high.

Mrs Dillon: I appreciate that. Chair, it goes back to the point that we keep making. I understand that the Department is under significant financial pressure, but we are not talking about getting more money; we are talking about how the Minister spends what he has and what is a good investment. We need to make that point again.

Mr Donnelly: Thank you for the presentation. It was very enlightening. I want to dig into something that, I think, Bernie spoke about: DNACPR and advanced care planning. We have heard about that issue again and again from the Ambulance Service and a lot of other palliative care providers. It seems bizarre and mad that people either are not having those conversations in a timely manner or are having the same conversation recurrently, which can be distressing. The cost that might be involved has been mentioned. My background is nursing, and I know that a do-not-attempt-resuscitation (DNAR) conversation is a conversation. What are the barriers to improving the DNACPR process and to implementing advanced care planning?

Ms Torley: My understanding is that the barrier is the resource that would be involved in regional training for staff to carry it out and in implementing the ReSPECT form and document. As a specialist palliative care workforce, we are very well qualified to have those conversations, but it will not sit solely with specialist palliative care. Palliative care is everyone's business. Significant training will be involved. It is disappointing that it has been sitting ready to go for over two years now. Patients are still being admitted to hospices without anybody having broached that conversation with them. It is alarming that patients who are actively dying are coming in and nobody has had that conversation with them. It does not happen all the time, but we do see it. It should not happen.

Ms Lynch: We have to have the conversation again.

The Chairperson (Mr McGuigan): For your knowledge, the Committee are not waiting until the end of the inquiry to ask about that issue.

Ms Torley: Great.

The Chairperson (Mr McGuigan): We are actively pushing on it in advance of the inquiry's end.

Mr Donnelly: It is an issue that has stood out in a lot of the evidence that we have been given.

Ms Torley: I worked as a specialist palliative care nurse in the community and was involved in the active resuscitation of a patient who was palliative. I walked in on a paramedic carrying out CPR. Such things stay with you. If it affects a health professional, you cannot begin to think about the impact that that has on a family. That is just one example. I know many people who have experienced that. It just should not happen.

Mr Donnelly: You are not the only person who has sat there and said exactly that.

Ms Cuddy: Fundamentally, it is about dignity and respect.

Ms Lynch: The other problem is that, despite the fact that a lot of work has gone into developing the policy and the form, things have stalled. Despite all that work, there is now a gap when it comes to getting over the line. That is a major flaw. We are looking for lots of changes. That one is sitting ready, but we cannot get it over the line.

Mr Donnelly: The only barrier appears to be training staff.

Ms Torley: That is my understanding.

Ms Cuddy: I am not sure that that is necessarily a barrier for us. It seems to be a system barrier.

Mr Donnelly: Thank you. You said in your feedback that, at the moment, palliative care in Northern Ireland is in a poor state. What does an ideal palliative care system look like, and what do we need to do to move towards that?

Ms Cuddy: I will start and then hand over to my two clinical colleagues. I was a nurse, too, once upon a time. Palliative care and hospice care is a whole ethos. We believe that that ethos should underpin a regional approach to palliative care. It means that we look after the person who has the palliative diagnosis well through their palliative journey, helping them to live well for as long as possible and then to die well. In doing so, we also support the person's family and loved ones. Clinical care from doctors and nurses is extremely important in that type of ethos, but they are not the only members of the multidisciplinary team who are important; the whole team is important. There is a focus on the clinical side, which, in our view, is to the detriment of looking at the situation holistically. The model and ethos need to be holistic.

Ms Lynch: We should look at the person holistically. It is about their physical, emotional, psychosocial and spiritual well-being. It is about all the professionals and people who provide that support. That is a model that the Southern Area Hospice provides in our inpatient unit and in our community care. Equally, it is about educating your community and professionals, and supporting them to upskill, so that they can provide the necessary support. When we begin to look at a strategy or a regional approach, thinking through every element is fundamental. It should also take into account the urban and rural needs of the population and how we manage those. It may be different, and happen in different ways, but it should be aligned.

Ms Torley: I agree. There should definitely be a multidisciplinary approach. As Liz said, symptom management often involves pain. We may tweak medications to try to get on top of somebody's pain, but it could be total pain, and it may not be until the chaplain spends time with them and unravels their spiritual pain that we ease or relieve that symptom. It is about looking at the whole picture, so that it is not just a biomedical model but one that looks at the person holistically. There should be a regional approach, so that it is standardised. Education is needed, most definitely. There should be pre-registration education in all disciplines. We are seeing it now with paramedics, which is brilliant. However, it is alarming that colleagues as high up as those at consultant level in other disciplines have such a poor understanding of palliative care. If health professionals do not understand what palliative care is — what we, as a hospice, can deliver and what services we have — what hope has the public? Health professionals are not going to identify those needs or be able to signpost somebody if they do not have that awareness themselves. It is a multi-pronged issue.

The Chairperson (Mr McGuigan): No other members have indicated that they want to speak. You talked about a holistic approach. Beyond all of the other services that you provide, I came away from the visit really impressed by your holistic approach. Ladies, thank you very much. That was extremely useful and informative. We hope to do all of you justice when we produce our inquiry report.

Ms Cuddy: Thank you for prioritising this issue.