Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Alison Campbell-Smyth, assistant director of community care in the Northern Health and Social Care Trust; Dr Mary-Ann McCann, palliative care consultant in the Northern Trust; Dr Louise McNutt, palliative medicine consultant in the Northern Trust; Dr Sarah Cousins, palliative medicine consultant in the Southern Health and Social Care Trust; and Dr Gemma Ryder, palliative medicine consultant in the Southern Trust. Thank you very much for coming before us and providing evidence to our inquiry. I hand over to you to make a brief opening statement, after which we will take questions from members.

Dr Louise McNutt (Northern Health and Social Care Trust): Thank you, Chair, for giving us the opportunity to address the Committee. I am Louise McNutt, one of the palliative medicine consultant doctors in the Northern Trust. I work across our different settings: in our hospice — the Macmillan unit; in the community — in people's homes; and in our hospitals.

By now, you have heard from quite a number of our colleagues, from across the Province, representing a range of organisations, trusts and professional bodies. You will have begun to appreciate some of the varied ways in which palliative care is delivered in Northern Ireland, with a range of services and providers in different areas. I am sure that you will agree that a common factor has been the passion with which each of our colleagues has spoken. We, in palliative care, have all experienced the head tilt and sometimes awkward look when someone asks what we work as, and we tell them that we work in palliative care. However, we did not land in these jobs by accident; they were not the only ones left. We all care deeply about, and are committed to, delivering high-quality palliative care and helping people with life-limiting illnesses to live and, ultimately, die well, regardless of where they are in Northern Ireland. That is why we welcome your inquiry with open arms.

In the Northern Trust, the demand for palliative care services has never been greater. We have the highest population, and the largest elderly population, of any trust in the Province. That elderly cohort is living longer, with multiple morbidity issues and complex needs. The Northern Trust has the greatest number of deaths annually, with the latest figures showing that, in 2023, we had almost 1,000 more deaths than any other trust. That is proportionate to our population. Our trust also has the broadest geographical spread in Northern Ireland, and that rurality means that delivering care to patients, in their own homes and when they need it, can be challenging.

Over the weeks of your inquiry, you have heard my colleagues explain the concepts of generalist and specialist palliative care, and how generalist palliative care is delivered by non-specialist staff across nearly every healthcare setting, working alongside specialist palliative care teams that are involved with the most complex patients. In the Northern Trust, our hospice — the Macmillan unit — is at the centre of our service. It bears many similarities to the other hospices that you have heard from. Our specialist palliative care multidisciplinary team includes allied health professionals, consultants, speciality doctors, nurses, a chaplain, a pharmacist and volunteers, who work together to provide a holistic assessment of, and care to, palliative patients with the most complex of needs — needs that cannot be met in other settings. Whilst the specialist care that we deliver is similar to that delivered in other hospices in the Province, the Macmillan unit differs in that it is run and funded by the Northern Trust.

To give some background, the unit was established after a need was identified, in the early 2000s, for specialist palliative care, inpatient beds or a hospice within the Northern Trust. The build was financed by a collaboration between Macmillan Cancer Support and the trust, as well as local fundraising initiatives. The unit opened in 2012. Macmillan part-funded a number of core staff posts in the unit for several years, with the proviso that the trust would fully fund those from the end of that period, which it has done. We are immensely proud of the Macmillan unit and the care that we provide there. Indeed, we receive excellent feedback from patients and their loved ones. Just last week, we welcomed Minister Nesbitt, who commended the staff on their care and their retention of a quality environment award.

However, our Macmillan unit is only one part of the palliative care services in the Northern Trust. In addition to funding that unit, our trust must provide palliative care to patients wherever they need it, be that in their own home; in a residential or nursing home; or in one of our acute or community hospitals. Given the fact that we have an NHS hospice, we are less able to develop, as we would aspire to, the wider service in our hospital and community settings. Our specialist palliative care workforce is detailed in the written document that we submitted, so, to save time, I will not repeat that. However, that workforce needs to grow significantly to meet the needs of our population.

One small but impactful change that we made in recent years was to increase the specialist palliative care presence in the emergency department in Antrim Hospital. The availability of a palliative medicine consultant has enabled earlier identification of patients with unmet specialist palliative care needs. Timely assessment and senior decision-making have led to a range of improved outcomes for patients. For some, hospital admission is avoided altogether, with those patients being discharged home with a change in management. Others are transferred directly to the Macmillan unit, which is on the same site, if specialist inpatient care is needed and a bed is available. Patients who do require admission to hospital have appropriate changes to their symptom management from the outset, with ongoing input from the hospital specialist palliative care team. The presence of the consultant at the hospital's front doors has strengthened relationships with acute staff there. However, that in-person service is not available all the time, even in hours, and is available in only one of our acute hospitals. We know that we provide high-quality care to many people, but we could do more with greater investment.

I will tell you about the good: a case in which a patient benefited from collaborative working and integration between our hospital and community, and generalist and specialist, palliative care teams. Ideally, in palliative care in any setting, we would receive a timely referral for a patient, allowing us to carry out a holistic assessment of the patient and establish their physical, psychological, social and spiritual needs and, thereafter, to involve the appropriate professionals in their care. However, unfortunately, it does not always work out that way. Time is not always on our side.

As others have said, we are seeing increasing numbers of people presenting with cancer that is already advanced or other terminal illness that is similarly in the latter stages. A lady in her early 30s presented to an acute hospital in our trust feeling unwell. Investigations revealed that she had an advanced, incurable cancer of the gallbladder and, unfortunately, was not fit for any oncological treatment. During her time in hospital, she was assessed by one of our hospital's specialist palliative care nurses. That nurse commenced medication to control the patient's pain and referred her to the Northern Ireland Hospice community specialist palliative care nurses, a team that is commissioned by the trust, when she was discharged. The hospital nurse had appropriately emphasised the urgency of the referral due to concern about the patient's symptoms and her prognosis. The community team responded quickly. However, the patient declined the offer of a visit. She kept both our community team and the district nursing team at arm's length, reporting that she did not require a visit. The community team became concerned and encouraged the lady to allow a specialist nurse and me to visit.

The person whom we met that Wednesday morning was frail and unwell. She was deeply jaundiced and in pain. She was becoming less mobile by the day and was unable to do many things for herself any longer. Family members were doing what they could, but they had respected her wishes not to seek further help. For that lady, you see, like many others whom we meet, even the word "palliative" was very much taboo, and, perhaps, by not engaging with the team sooner, she had hoped that she might keep the inevitable at bay for a while longer. We spent two hours in her home that day trying to gently and sensitively assess her symptoms and needs and to ascertain what was most important to her. I wondered whether in-patient hospice care might meet those needs within the, I feared, short time that she had left, but she was very clear: remaining at home and attending a local football match that weekend were her priorities. She did not make it to that match, but, thanks to the rapid action of the district nursing team and the GP, both in and out of hours, the arrival of a much-needed hospital bed, commencement of an emergency care package, the ongoing involvement of our specialist team and medication changes, that lady died comfortably in the presence of her family and in her own home.

That is the kind of palliative care that we aspire to be able to deliver to everyone. Unfortunately, that is simply not always possible at present. Services aligned in that instance, but we do not, for example, have a full specialist palliative care community multidisciplinary team in any part of the Northern Trust, nor daily specialist in-person medical cover in the community or reliable availability of care packages in all areas. As you know, both district nursing and GP services are already stretched. That patient could equally have ended up in the emergency department or dying at home with less support or more symptoms.

We warmly welcome the inquiry and appreciate the time that is being given to it. We realise that the Department is in a difficult position. We are aware of the financial constraints. However, palliative care services across the Province must be prioritised. Each and every person deserves accessible, high-quality, timely and individualised palliative and end-of-life care. To achieve that in Northern Ireland, we need the development of a regional strategy and funding that is based on population need and cognisant of local factors. We need standards for service specification that will help to define the types of services that are required and the workforce that is needed to deliver them. There should be dedicated funding for training places and pathways for all members of the multi-professional team to ensure that there is an adequate and sustainable workforce. We also need clear and transparent commissioning of services across trusts and the charitable sector, with seamless and equitable services for all.

Finally, we extend an invitation to the Committee to visit the Northern Trust to see our specialist unit and palliative care services.

The Chairperson (Mr McGuigan): Thank you very much. You talked about the passion that we heard from other witnesses. You have done well to ensure that that continues.

Dr Sarah Cousins (Southern Health and Social Care Trust): Thank you, on behalf of the Southern Trust, for this opportunity. My name is Dr Sarah Cousins. I am one of the palliative medicine consultants, and I work in Craigavon Area Hospital. I am joined by my colleague Dr Gemma Ryder, who is the Southern Trust's community palliative care consultant. Gemma joined us recently from England — she has worked with us for about a year now. She was involved in palliative care in England for about 15 years. If you have specific questions about comparisons between Northern Ireland and England, please direct those questions to her. I want to highlight the fact that we are completely NHS consultants. We are Southern Trust employees and are funded as such, as are the multidisciplinary teams that we work with. Working in the NHS system means that we have a slightly different focus, which I hope it will be helpful for you to understand.

Let me paint a picture of the Southern Trust's palliative services. The trust provides general palliative care across the various adult specialties, including inpatient, outpatient and community services. Of course, some adult trust services see palliative patients more frequently than others. I am thinking of our care-of-the-elderly colleagues, who see patients in their last year and last days of life more frequently than others. However, I cannot think of a single adult service that was never in contact with someone with palliative needs. I will give you an example of that. As both the hospital and the community specialist palliative care team, we were significantly involved recently in the care of a pregnant woman with palliative care needs throughout her pregnancy. While we were there as a specialist palliative care team, she was also being cared for by Craigavon Area Hospital's obstetrics team, the inpatient midwives, the community midwives, her GP and her district nurse. Even teams that do not seem to provide palliative care are required to, and do, provide general palliative care at some stage.

I will move on to our specialist palliative care services. I work in the hospital-based palliative care team. It is a Monday-to-Friday, nine-to-five service that is based at two sites: Craigavon Area Hospital and Daisy Hill Hospital. The team is comprised of me as the palliative consultant alongside palliative nurses and a palliative pharmacist. We do not take over patients' care, but we draw in and work alongside the ward staff — the ward doctors and nurses — to support holistic care for palliative patients. All trusts have that type of hospital palliative care team, as it is called.

It is in our community care that we are slightly different. The community specialist palliative care team, in which Gemma is the consultant, is also a Monday-to-Friday, nine-to-five service. It is for the entire Southern Trust area. It is a full multidisciplinary team. It differs from other Northern Ireland regions, where the palliative nursing services are commissioned by the trusts to a hospice — for example, the Northern Ireland Hospice or the Foyle Hospice. In the Southern Trust, however, the service is completely NHS trust-funded and run. To give you an idea of that, there are approximately 3,000 deaths in the Southern Trust area every year, and, in 2024, we had 1,500 referrals to our community specialist palliative care team.

There has been growth. From 2021 until last year, that figure went up by 33%. There is also a slight sense that it is increasing exponentially, because for the first three months of this year, from January to March, and comparing last year with this year, we see that we went up 13%.

The increasing number of referrals has led to the trust having to prioritise those with the greatest need. Previously, a palliative care nurse would draw alongside someone in their own home and be with them for the duration of their journey to the finish of their life. We realised that we are no longer able to provide that service, so it has moved to being an episodic service. The referral comes through, the community team goes to see the patient, it manages an issue or a symptom and, if there is a period of stability, we will then withdraw and allow the district community nursing team to continue. That is not what we want to do, but it is what has had to happen on the basis of the numbers. Unfortunately, we are still pushed on the numbers because of the resource level, as you will understand. We are in the sad situation of looking at moving to having a waiting list for people who require holistic care at home. As I said, that is different from the situation in other parts of Northern Ireland, but it is a good example of a multidisciplinary team that is trust-run, trust-funded and for the entirety of the Southern Trust.

Unlike the Northern Trust, we do not have an NHS hospice. We commission our services through the Southern Area Hospice, whose representatives you have just spoken to. We commission 12 inpatient beds. The Southern Area Hospice offers other services that are charitably funded and provided at its discretion, but those are separate.

You may have noticed that I talked about a Monday-to-Friday, nine-to-five service. For out-of-hours services, we provide what we can, which is an out-of-hours telephone advice service. It is a doctor-to-doctor service in out-of-hours periods, which means evenings, weekends and bank holidays etc. That means that a GP or a ward doctor who has a question or is struggling with an issue or with symptom management phones through, gets directly to me, Gemma or one of our colleagues and gets specialist, consultant-level advice to the patient as best we can provide it. The Northern Trust also does that with its consultant-level doctor-to-doctor telephone advice. The other trusts — the Western Health and Social Care Trust, the South Eastern Health and Social Care Trust and the Belfast Health and Social Care Trust — commission those services from a company that is based in England.

That gives you some idea of the services that we, as a trust, provide and commission. I hope that it has been of some use. I especially want to draw your attention to two things, the first of which is analysing specialist palliative care services. The Southern Trust has been made aware of the Department of Health's intention to commence a baseline audit of the totality of palliative services. That will cover general and specialist palliative services. We feel that to count the general palliative services is essentially to count all NHS adult services, which means GPs, every district nurse and every ward. That will be very time-consuming and laborious, and it risks losing some of the momentum that the Committee has created by drilling down and understanding palliative care provision. We humbly ask the Committee to reconsider that and to direct the Department of Health to concentrate on doing an in-depth analysis of specialist palliative care services.

As we know, there is often competition between charitable palliative healthcare providers. Essentially, the current system pitches charities against each other for fundraising and service provision. An audit of the specialist palliative services would provide the in-depth clarity and transparency that, I think, we are all looking for in arrangements, funding, resources, criteria, areas that providers cover and outcomes — all the things that you would want to look for — so that we can find the gaps and the areas of duplication across Northern Ireland. That would be for NHS and charitable specialist services.

Secondly, we really want to acknowledge the role of the community. I will give you a quick lesson. It is known as the 95% rule, which is a Compassionate Communities public health concept, and I understand that you are speaking to our Compassionate Communities lead in a few weeks' time. The rule says that 95% of the care for someone who is in their last year of life is provided by family, friends, neighbours, the local faith group, the local GAA group and the bowls club. It is provided by the community. In reality, a little more than 5% is provided by specialist healthcare professionals. We want to acknowledge that proud tradition that we have in Northern Ireland and in the Southern Trust of people looking out for one another when times are difficult. If it takes a whole village to raise a child, it takes a whole village to care for someone who is at the end of their life, to help them to complete their life and to care for the family through their bereavement. As specialist palliative care teams, that is what we want to do — support that whole village.

Much has been said about a regional approach. We want to balance that slightly. There are certainly aspects of work that could be regional, such as commissioning, policies, guidelines, regional last-days care plans, teaching and training packages, but death, dying and bereavement are not regional experiences, and I wonder what services, if any, could be regional. Additionally, and with respect, our experience of regional services tends to be that they are mainly located in the Belfast Trust, with funding diverted from the peripheral trusts, and that is just not something that we could support.

Thank you, once again, for all this. I think that sometimes the impression is that one group is the public and another is the professionals, but we are all family members, we all have experience of death, dying and bereavement and we are all just trying to do our best for the communities that we serve. Thank you for your interest.

The Chairperson (Mr McGuigan): Thank you, and thank you for your passion and thoughtfulness. It has been very useful, if, at times, maybe slightly different, but we appreciate your coming before us.

I want to pick up on the audit stuff, because we, as a Committee, have been a bit — I am trying to think of the right word here — bemused by the lack of information that the Department has about the services. You are saying that, for this provision, it really only needs to do specialist services rather than general services.

Dr Cousins: Yes. I thought of examples ranging from audiology to podiatry, but I could not think of a single service that would not see people in that last year of life at any time. To get the answers that the Committee and all of us are looking for, provision needs to be in-depth, with specialist, charitable and the NHS services, in order to try to avoid that postcode lottery, which is what we are seeing at the moment.

The Chairperson (Mr McGuigan): OK, thank you. You pointed out Dr Ryder's experience across the water, so it may be useful to get a sense from you of your experience of the differences here, the impact that that has on patients, what we can do and if there is anything that we can learn. There is obviously a different legislative scenario in England

Dr Gemma Ryder (Southern Health and Social Care Trust): Despite the real passion that I know that all my colleagues across the Province have demonstrated in palliative care and the real internationally renowned experts, such as Professor Max Watson, whom we have here, palliative care in Northern Ireland feels like it has stagnated somewhat compared with what I am used to in England. For part of my job and interview preparation for coming over here, I looked at the strategy from 2010 and wondered, "Was it achieved?" I read the Regulation and Quality Improvement Authority (RQIA) report, and, really, my reading of that was that not a lot was achieved. An enormous amount of work was done, and an incredible number of man- and woman-hours went into getting places, documents, strategies and developing things, but nothing — or very little — was got over the line.

One of the differences in England is that we are getting things over the line, and we have clear palliative care leadership for doing that and for pushing it in order to keep palliative care in the mind's eye of the people who are making decisions. I was recently at a palliative care conference that was held in Belfast.

During the plenary session — the opening speech — we heard from the palliative care leads from England, Wales and Scotland, and, then, most embarrassingly, we had to hear someone stand up and say, "I'm very sorry, but we don't have a palliative care lead in Northern Ireland". There is so much passion, but it is going to waste, because it is not being channelled, focused and championed by a clinical lead in Northern Ireland.

The Chairperson (Mr McGuigan): Another thing that we hear when people ask is: "How do I access information?". We had a consultant in one day, and he said that even he had difficulty navigating the system. I am not sure which of you — the Northern Trust or the Southern Trust — talked about a map with up-to-date information on the services and how to access them.

Dr Cousins: We tried to make a map two years ago. It was a very beautiful map. I was tempted to bring it today. The difficulty was that, within about two months, it is was out of date because the charitable organisation changed the boundary of the area that it covered. Imagine that something is the Southern Trust and that we are looking at where the emergency departments are, should that be where you need to go. We looked at where, geographically, the community pharmacies that hold palliative care drugs at the weekend are if you need to get a script for your loved one replenished. We do not have 24-hour district nurses, so we rely on charitable organisations providing injectable, pro re nata (PRN) medicines, which are medicines that might need to be injected for symptom benefit at the end of life. We looked at where they are located and who covers where.

Life and Time covered a postcode here; I think that it was BT34, but do not quote me on that. Southern Area Hospice services covered BT35 and Newry city. Marie Curie was based in out-of-hours in Craigavon and then in Newry. We tried to get the provision laid out pictorially, and that was incredibly useful, because you can start to see it and say, "Well, that is a very long distance that somebody has to drive. That is very far away from those pharmacies if you need to increase the syringe driver at 3.00 pm on a Sunday". A picture speaks a thousand words. It required quite a few IT skills and regular updating.

The Chairperson (Mr McGuigan): That could be looked at.

Dr Cousins: It would be wonderful if a family or relative could bring this up and say, "Oh, there is a death cafe in a library next week that I could be interested in going to". You could bring in a lot of those resources and connect people to the services.

The Chairperson (Mr McGuigan): I will move to the Northern Trust. You talked about younger people being diagnosed later. Is there a reason for that? How do we undo that?

Dr McNutt: Those are perhaps two separate things. The general population is sometimes presenting later with more advanced disease, and that may have originated during COVID times, when people were perhaps seeking less healthcare and isolating themselves and staying at home. Sadly, we see that symptoms can sometimes be vague and quiet and that, by the time that someone seeks help, they are advanced. In contrast, we also see in some of our elderly population that there may be some very obvious signs that something is wrong. For example, there could be an obvious fungating breast tumour that an elderly lady knows that she has but does not want to talk about because she is afraid. It is taboo, and she does not want to go forward with it and then presents very, very late. I do not have the figures, but, unfortunately, we are seeing a lot of younger people who have cancer and are dying with cancer. We are seeing that across all our services, but, on the whole, people are also presenting quite late.

The Chairperson (Mr McGuigan): Thank you. I will bring some members in now.

Mrs Dillon: Thank you for the presentation. You covered the main question that I had, which was one that I asked previously to try to get an understanding of why so many younger people are presenting so late in their journey and, as we are hearing, very often too late for any kind of treatment that would make a significant difference. We need to get some assessment of that. We really need to get an understanding of it, because, even though tackling waiting lists and diagnoses is great, people are not actually coming for diagnosis or being put on a waiting list. That is a major problem for us and for our palliative care service. In some cases, we are talking about the lack of a palliative care service.

I understand why the mapping issue is so difficult. I have discussed it with trusts before on mental health services, what is out there and why a trust does not know every service that is in its area. I know that it can be difficult. We raised that with the strategic planning and performance group (SPPG), and it needs to take it on and look at how we deal with this matter. People do not know what service is provided when or who to turn to at each different point. Who do you contact during the day, in the evening, at night or at weekends? It is impossible for a family to navigate, and we are talking about families that are already under significant pressure. Therefore, we need to speak to the SPPG about how it or the Department can do something on this.

I do not think that we will be able to get everything on something like that, but we certainly need to have the big things covered. We need to have information about who people can contact at each point of the day. Therefore, if your person needs drugs in the morning, do you have to wait until the district nurse comes? Who should you contact in the evening, during the night, out of hours and at weekends? Leaving families and people who are at the end of life in those circumstances is really poor, and this matter needs to be for the SPPG, because provision needs to be across the board. We cannot have a situation where families right across the North do not know who to contact. That is really important. Those are probably my two points, as well as the clinical lead, which Gemma raised and which was also raised in the previous presentation.

Can any of you give me an understanding of the clinical lead's role? What would they do? I have in my head an idea of what I think their role should be, but I need to get an understanding from you so that I can be reassured that I am right in my thinking.

Dr Ryder: A clinical lead is someone who is able to focus their energy on getting things across the line. There have been lots of breaks in government in Northern Ireland. My experience is that, when the Government has returned, there are lots of fires to be put out and crises to deal with. Palliative care gets left at the bottom of the list, because dealing with A&E, people in trolleys and ambulance waits etc are at the top of the list, and I can see why that is. However, if we are going to go round in this cycle again, palliative care will continually be left at the very bottom of the pile, and that is not good enough for our dying patients and their families.

There is something about being there as a reminder and a link between the passionate palliative care community and the Government in Northern Ireland, especially the Department of Health. A clinical lead is someone who has — not power, that is the wrong word — but gravitas or cachet, someone who is listened to when we feel that we are shouting into the void and no one hears us.

Mrs Dillon: Thank you.

Mrs Dodds: I apologise for being late. I had another meeting, which overran. Thank you for the presentations. This subject is really important.

I want to ask about the regional audit that the Department is doing. Lots of us were surprised — I suppose that you were surprised as well — by the fact that the Department did not really know what services are where for palliative care patients across Northern Ireland. As palliative care consultants in two very big trusts, have you been contacted by the Department? Maybe we have had an update on the Department's information gathering, and I have missed it. Have you been in touch with the Department? Has it spoken to you?

Ms Alison Campbell-Smyth (Northern Health and Social Care Trust): Yes, the trust received communication that a baseline audit will be undertaken in the next number of months. It was an early warning, if you like, to say that it will be coming towards us. Getting that baseline will be very timely, given the Committee's efforts.

As trusts, we welcome a final baseline survey being done across trusts. The provision has become different, because, whilst there are commissioning pieces that mean that elements of work are standardised across the five trusts, the trusts always have an element of individualism as well. A trust might see a need for something. That was demonstrated by the witnesses at the previous session who spoke about the Southern Trust. It has a really robust community team, whereas for a number of years, our focus has been on our hospice unit, and we are catching up in that community space.

Without a strategy in Northern Ireland that defines what every trust should have as its baseline, trusts have done things differently in different places in response to local need, the latest guidance that has come out at a particular time and the availability of funding, with either the response being commissioned through SPPG or, sometimes, trusts going at risk. That disparity has been born out of opportunities as time has gone on. As for us, I welcome the baseline study, because it gives us knowledge that we do not have.

Mrs Dodds: I think that the Committee welcomes it. We were really surprised that the Department did not have enough data on what was happening across Northern Ireland in an area of medicine in which we are literally talking about our most vulnerable people. I was really surprised. Sorry to pursue this, but I think that it is important. We were told about the regional audit months and months ago at the beginning of the inquiry when the departmental officials came to the Committee. When were you contacted by the Department about it?

Ms Campbell-Smyth: I cannot give the exact date, but it was in the past four to six weeks or something along those lines.

Mrs Dodds: It has taken the Department that long to write a letter to say that it will do it. I am not asking you to comment on the Department; that would be manifestly unfair. I am making the point that the Committee has brought some focus to the issue, and we want that focus to remain. It is really disappointing to know that, in one of our very first meetings that we had about the palliative care inquiry, the Department came here and said, "Whoops, folks, we do not know what is out there. We are going to do a baseline inquiry". That is fine, although, in my view, it should have had the information. I am not asking you to comment, but it will be good for the Department to gather the information. It will be even more interesting to know what the Department will do with that information, how it will share it and how it will implement policy based on it. Sorry to have gone off on one — apologies.

I will pursue another thing with you, Dr Cousins. You talked about how you do not want the focus of the baseline survey to be on generalist services. I understand that, because then we would be saying, "Oh look, we are doing well, thank you very much". We need it to be on those very specialist services. Do you want to add to that? That may be the first time that I have heard that point being made in the inquiry.

Dr Cousins: Let me explain it in a really practical way. The request will come to our colleague, who will be the one who has to sit down and draw up a list of services. Take maternity, for example. Very infrequently, maternity has a palliative patient. Does our colleague count that as an area that provides general palliative care services, because, when they are required, that area provides them? You would not refer to maternity as palliative care services, however. Our colleague will then have to look at all the district nurses and count them. They will then have to look at the service for adult learning disabilities in the community. That service sees patients with palliative needs, but is it one case a year or three cases a year? What is the average? Do we put it on the list or not?

How, in a practical sense, without any additional parameters, will you compare a care-of-the-elderly department with acute care at home or outpatient and inpatient services? You would have to give a parameter and say, "We will define a service that provides general palliative care as one that sees at least 10 such patients a year". Practically, it starts to become very difficult. What is the value of knowing that? What is the value of knowing that a care-of-the-elderly or a respiratory department cares for patients at the end of life? There is no value in that, because there is no funding and no understanding of the resources.

What is useful to know is that, in the Southern Trust, we have a multidisciplinary team. Can you tell me exactly how many clinical nurse specialists are in that multidisciplinary team per head of population? Can we work out how many consultants there are per head of population? Can we work out much funding goes into that? What are your referrals? How long do you see patients for? We should focus on that. Where are the gaps and the needs? I do not think that looking at the general numbers will be possible — certainly, we would need a lot more parameters to make it equal across the five trusts, because the information provided has not given any detail on the definitions for the audit — and it will not tell us anything new.

If someone has a list of all the adult services provided by the NHS in Northern Ireland, counting them again does not make sense to me when we want to focus on being pragmatic and moving forward. It is about really drilling down into those specialist services. What postcodes are covered by that charitable organisation? Is that fixed, or is it a changing thing? Is that an expanding service or a contracting service? How many referrals are there? How many benefit from that service in a year? It is about the detail. What you really want is a good health economist to work out those details with you. It is about value for money as much as anything else, because we all want really good palliative care services. We want to know that there is not duplication and to identify any gaps so that we can focus our efforts there. Does that explain why —?

Mrs Dodds: It does, yes. That is something for us to think about.

Dr Cousins: OK. Please do.

Mrs Dodds: That is the value of taking evidence from a range of people, so we thank you for that.

You focused on the clinical lead and the need for leadership in palliative care. That is massively important. We had a debate this week in the Chamber on cancer waiting lists, which are dreadful in Northern Ireland. You said that there has been an increase in the number of people that your team is seeing. Why are you seeing such an increase at the minute? What has happened to cause that increase?

Dr Cousins: I suppose that it is to do with the demographics of the ageing population. In the community, when GP and district nurse teams are under pressure, specialist teams will see increases in referrals. I am pleased to say that the public have an increasing expectation about what constitutes quality palliative care. I am delighted about that — they should be demanding excellent palliative care and that specialist approach.

Dr Mary-Ann McCann (Northern Health and Social Care Trust): I think that it has to do with population growth. When we look at the figures for deaths, we see that, in the Northern Trust, deaths have gone up by nearly 1,000 over the last 10 years. It is the elderly population, not just younger people. There are increasing deaths in every age group, and that then contributes to increased referrals and the need for our services.

Mrs Dodds: I have a few questions, but I will ask just one more. You talked about your "beautiful map" of pharmacies. In the Southern Trust area — I live in Banbridge, so I understand the area very well — a number of pharmacies do not open on a Sunday. In fact, if you live in my town, you cannot get a pharmacy on a Sunday. Is that having an impact on the availability of drugs and on people being able to access the particular drugs that you talked about when they need them?

Dr Cousins: Yes, definitely.

Dr Ryder: Absolutely. There is a real clash. Community pharmacies are passionate about what they do. I am out and about in the community, but I am not always standing in line in the local pharmacies. A couple of weeks ago, I was here at the launch of the Marie Curie "daffodil standards" for pharmacy, and I got to meet my pharmacy colleagues face to face. I heard that they are really struggling to meet demand and to pay the electricity bill at the end of the month. They are changing their opening hours so that they have an element of core service, but, obviously, that does not suit my patient group. I have seen patients on a Friday, waved goodbye and seen that they looked in relatively good health. Then, something unexpected, for which we could not have planned, has occurred over the weekend. Some will end up being admitted because we cannot get the medicines that they need to them across the weekend or in the middle of the night. We need the pharmacies to have longer opening hours, but can they pay their bills at the end of the month and pay their staff if they have those enhanced opening hours?

Mrs Dodds: That is certainly a very challenging aspect of it. Thank you. It is really important to hear from you and to understand your perspectives on that.

Mr Donnelly: Thanks for all your contributions. Again, there is loads of passion, which we have seen across the board. We can feel that you really care about the service and your patients. That is great to see. I fully agree with your comments about palliative care being delivered across the services. My background is in nursing, and I have worked in respiratory care, care for the elderly and cardiology. In all three of those and, I am sure, in every other speciality, palliative care is being delivered by hospital staff who are not specialists. It provides a massive benefit for patients. I have seen the difference that palliative care, general and specialist, makes to patients' lives, and it is phenomenal, so thank you for that.

A couple of points came up. Palliative care being a taboo subject came up twice, I think, in your contributions. You gave the example of the lady who did not want services to be involved with her, and I think that the subject came up a second time. We have heard it again and again: there is a taboo around death. You mentioned death cafes, which I am not entirely familiar with. As a public education piece, what could be done to encourage more people to talk about death, what they want for their own passing and what they would expect? I am certainly interested in the death cafes.

Dr Cousins: OK. Public health and palliative care is an interest of mine. I am sure that Sharon Williams from Compassionate Communities will explain it a great deal better when she comes to the Committee, but the basic principle is to think about connecting people to people, people to services and services to other services. We talk about holistic care and palliative care, but the idea is to get a more holistic view of the community and the services that are linked into it.

You are really talking about the death literacy of your population. Death literacy is the knowledge and skill level of the population in Northern Ireland. It can be evaluated in several ways. Do people understand what "palliative", "advance care plan" and "resuscitation" mean? There is the understanding of the words, and then there are the skills that people need to have those conversations with their families about their wishes and to find out how to complete a will — dying literacy skills, if you like. The death literacy of your population is very important, because it dictates how people will engage with the issue.

Globally, a huge number of projects aim to improve death literacy and understanding. They include schools programmes, which, really interestingly, in Australia, showed that you could not only improve the knowledge of children at secondary school but reduce a school-aged child's fear of death by 50%. That is fascinating. A lot of libraries do great work in providing books about death, dying and bereavement. Death Cafe is sort of a grassroots movement, and healthcare should not really be in any way involved in it. The death cafes are advertised as places to which people can go to discuss their fears, concerns and experiences and where they can share what they know and the questions that they have with each other. That is the community supporting and learning from each other. It is another aspect. There are others, such as Dying2Learn, which is an online module for the general public to improve their skills in this area. There is a lot about bereavement. People want to do the right thing and be helpful. Sometimes, people are embarrassed or do not want to say the wrong thing, but it is about just showing up and being there. We have a very proud tradition of that in Northern Ireland, so it is about encouraging that and empowering communities to draw alongside someone who is bereaved, or maybe just cutting the grass or bringing in the bins for a neighbour, who is caring for a loved one. Those are the big ideas, and then you can drill down into very many specific projects. It is not just one single project that you need to do; you need to do many to have an impact on your death literacy.

Ms Campbell-Smyth: All trusts have a lot of service improvement work in that area and a range of different projects, including working in schools and working alongside our learning disability folk. A lot of people just need that improvement in their language. I have been working in palliative care for five years now, and it is not just a Department of Health issue. The Department of Education, Department of Finance and the Department for Communities need to be involved. We work with the high school and other local schools in mid-Ulster and with the libraries in Ballymena on brilliant projects that could be scaled up and spread further. However, to do that would mean Health knocking on the door. It would be brilliant if all of the departmental bodies were also behind that, because we have products that would meet different people's needs in different places. If those bodies were to ask for that work to be scaled up and spread, that would be excellent. We can do pockets, but we cannot get the scale and spread, and that is what would benefit the long-term needs of the population. .

Mr Donnelly: Absolutely, and I can see how rolling that out and adding those community conversations would address the taboo aspect.

Ms Campbell-Smyth: We had a brilliant play last week in Antrim. Local talent Nuala McKeever was in a fantastic one-woman show, after which, as part of Dying Matters Awareness Week, we had a question and answer session with a panel. A number of our specialist team were there, and Nuala also spoke. It was an excellent event, and the buzz afterwards, with people chatting and having those conversations leaving the theatre, is exactly the type of thing that we want to do: something that is natural and very engaging but that people will go home and talk to their relatives and friends about the next day.

Mr Donnelly: The Northern Trust's submission mentioned that the Macmillan Unit now has a waiting list: the 12-bed unit operates a waiting list, and there is also a waiting list in the community. Obviously, there is a growing need here. People are not getting the timely care that they need and will have to wait until it is available. How does that affect you at the moment, and what is likely to come out of that?

Dr McNutt: I think that we have all, throughout our training, worked across a number of hospices or specialist palliative care inpatient units in the Province. Every hospice that I have ever worked in has a waiting list. That is not new. The referral numbers will fluctuate at any given time. We will be busier and in more demand at certain times. If we have one bed available and five people waiting for specialist inpatient admission, it is important that we assess what their specialist unmet need is. We would love to be able to offer our inpatient services to every one of those patients, but, if there is only one bed, the person who most needs it on the day must get it.

It is a fairly widespread practice across the different hospices to have a transparent way of trying to assess those needs. The assessment may be based on the patient's physical and psychological symptoms and on their prognosis. Is it thought that the patient will die within a few short days, or even hours? May they have several months left? How severe are their symptoms? Where are they? Are they in a place of care? That is not to say that somebody who is in a hospital may not be in need of our inpatient services, but someone who is at home on their own or at home with young children or other dependants may be more in need of them at the time. We update daily and attach a score to each case so that, based on all the parameters, we are as transparent as possible. We therefore try to admit the patients most in need at any given time. The benefit of the integration of services that we have both talked about in our trusts is that, if we cannot meet inpatient need on a given day, we can find out who can. We sometimes refer between hospices to see whether there is a vacant bed elsewhere. Otherwise, we go out to the patient's home to reassess symptoms and then decide what we are going to do. Communication and integration are therefore key.

Waiting lists across all services — for community care, specialist nursing services, hospices etc — show that, unfortunately, there is high demand for specialist palliative care services.

Dr McCann: It is challenging. We can find out on a Friday that there is one bed when there have been several phone calls and referrals come in, all from people who have needs. We then have to ask, "Whose is the greatest need?". When we admit one person, we know that another person is going to be left at home, and we just hope that there are services out there that will manage that person's symptoms at home. It is therefore difficult. There is always a resource implication. That is why we are so passionate about trying to improve our services in communities so that we know that, although not everybody needs to come into the specialist inpatient unit, there are at least services out there that can help people in their home.

Mr Donnelly: Is that being recorded as part of the audit of specialist services about which we were talking? Are you also looking at that type of recorded need? There is unmet need.

Dr McCann: Yes. Such need may be recorded, because we keep a record of every referral that comes in, so there will be a record of the length of time taken from referral to admission. We keep a record of the patients who do not get admitted. Did they die before a bed was offered, or were they admitted elsewhere? Some of that data may therefore be available.

Mr Donnelly: Presumably, if you are recording the level of specialist practice that is available, you are also having a look at need and at the trend of growing need, as you said. That forms part of what we need to know about for our inquiry.

I have asked all my questions. Thank you.

Dr Ryder: May I say something about community care? I have worked in palliative care since 2010 and in many community teams. We never had to think about starting a waiting list before, but, since 2021, there has been a 33% increase in the number of patients being referred to the service. I have about nine whole time-equivalent nurses covering the entirety of the Southern Trust. We have not had any more resource, and we have not had any more nurses. The jam is therefore being spread thinner. We have not quite started a waiting list, but it is just in front of us. We do not want to have to start one, because to do so would feel as though we were really not meeting the needs of our patients. Equally, however, how thin can I spread the nursing team across the large area that is the Southern Trust?

Mr Donnelly: We were talking about the predicted deaths by 2040, and a huge increase in numbers is forecast. The service will therefore continue to get thinner and thinner unless we change it.

Dr Ryder: Absolutely.

Mr Donnelly: Thank you.

Dr McNutt: Another important, related element that is vital to record is the patient's complexity and measures of complexity. Take district nursing time. District nursing contact with a patient with, say, diabetes, whereby the nurse goes in and administers insulin several times a day, is vital for that patient. I do not dispute that, but, district nursing contact with a patient of ours could be very different and will fluctuate from day to day.

A patient may have a syringe driver administered in the community. Members will know that a syringe driver is a 24-hour mode of delivering medication subcutaneously. We have patients who are on a syringe driver for a variety of reasons. They may not be able to swallow so well, so they cannot reliably take oral medication, or they may be less conscious towards the end of their life. In the community, district nurses go into such people's homes daily to replenish their syringe driver. They fill up the syringe with the medication that will then be delivered over the following 24 hours.

A district nurse may go into a home and find that a patient's symptoms are well controlled. It is then a relatively straightforward exercise to change the medication, check that everything is OK and leave. They may, however, go into a home and find that the patient is a lot less well than they were the previous day. That opens up a can of worms. The patient may have symptoms that require extra subcutaneous medications, there and then, that will act more quickly, but, if the patient is less well, what do they want in that instance? Have the patient's wishes been discussed with anyone? That is where respect, which you have spoken about at length previously, comes in. Is a loved one who can communicate and engage in that conversation present? Does the GP or the district nurse know the answer? Does the patient need a set of observations? Would they want to be admitted to hospital to see whether the condition that made them deteriorate on that day can be reversed in any way?

District nursing contact with a palliative patient in the community can therefore vary in length and can change drastically from one day or week to the next. Keeping a record of that for generalist and specialist teams is important. Complexity is a key consideration.

The Chairperson (Mr McGuigan): Thank you, ladies. That was a very useful and informative session. I really appreciate your giving up your time to appear before us. As I have said to everybody else who has attended the Committee's inquiry, we thank you very much for the work that you do in the sphere and for coming before us to give evidence today. We hope that our inquiry will do justice to all the work that you do.