Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Karen Bowes — I hope that I pronounced that name properly — senior nurse in the Royal College of Nursing (RCN); Ruth Thompson, associate director of the RCN; Bernie Torley, advanced nursing practitioner (ANP) trainee and inpatient manager in the Southern Area Hospice; and Denise Cranston, specialist palliative care lead nurse in the South Eastern Trust. You are all very welcome. Thank you very much for coming. As always, I will give you a couple of minutes to make some brief introductory remarks, after which we will go to members' questions.

Ms Ruth Thompson (Royal College of Nursing): The RCN thanks the Committee for the invitation to come today and welcomes the opportunity to supplement our written submission with oral evidence.

Nurses play a unique and critical role in providing palliative and end-of-life care (PELOC). Our skills, compassion and ability to offer continuous support are central to ensuring that patients and those important to them experience a dignified, comfortable and peaceful end-of-life journey.

Palliative and end-of-life care is provided by nursing staff who work across hospitals, in the community and in the independent sector. Nurses deliver that care within the generalist nursing workforce and through the specialist palliative care nursing workforce.

The RCN is delighted to attend this session today along with representatives of the regional specialist palliative care nursing group (RSPCNG), who will expertly represent the specialist palliative care workforce across Northern Ireland. That enables Karen and I, who represent RCN, to give an overview of the impact that the generalist nursing staff make in palliative and end-of-life care provision.

In RCN Northern Ireland, we have an active palliative care member network. We have engaged with our network members to inform our response to the Committee on the current palliative care nursing provision across Northern Ireland. The network is a diverse group of nursing staff from district nursing, care homes, hospices, specialist palliative care teams, education providers, emergency departments and GP surgeries. The diversity of that membership gives an indication of how wide-reaching our palliative and end-of-life nursing provision is across our healthcare settings in Northern Ireland.

Generalist nursing staff include nurses working on wards, in emergency departments, in the district and in care homes. They require education and support to provide ongoing palliative and end-of-life care, particularly because specialist nursing support, as you know, is often limited out of hours. We feel that a comprehensive, accessible and responsive education package is needed to maintain the training and competencies of these generalist nursing staff, with access to updated education programmes.

District nurses make up a significant proportion of the palliative generalist nursing workforce. 'A District Nursing Framework' identifies the district nurse as:

citing the fact that the majority of palliative care is supported in community settings. District nurses are the healthcare professionals who see the patient most often in their home. The 24-hour palliative and end-of-life care at home provided by district nurses — it is available in some trust areas — is invaluable and makes palliative care more accessible for patients and those important to them. The district nursing service reassures families that support is available 24 hours a day and underpins the fact that their care is a priority. You have heard before that up to 25% of their caseload can be palliative care. Disappointingly, a 24-hour district nursing service is currently available in only two of our trusts.

Nursing staff in the care home sector also make up a significant proportion of the generalist palliative care workforce. The Regulation and Quality Improvement Authority (RQIA) care home census report in 2023 indicated that there were over 10,500 nursing home beds across Northern Ireland. Our nursing colleagues in the independent sector strive to provide a high-quality service to meet the needs of their residents, but the challenge remains to ensure that they have access to training and support to gain and maintain the skills and competencies required to deliver palliative and end-of-life care to those in their care.

The RCN palliative care network in Northern Ireland has previously highlighted nurses' concerns about the delay in the implementation of the Northern Ireland advance care planning policy, For Now and For the Future, which was launched in October 2022, and the supporting recommended summary plan for emergency care and treatment (ReSPECT). Many patients receive treatment and care across organisational boundaries and settings, so patients often have to have multiple conversations with various professionals about their healthcare wishes and preferred places for receiving end-of-life care. Those repeated conversations can cause emotional distress and frustration to patients and those who are important to them. We need to progress the implementation of advance care planning and ReSPECT as a matter of urgency — the hard work has been done — which requires us to have funded, resolute post holders to implement it safely.

The RCN values the ongoing support that the Committee has shown for nurses and nursing in Northern Ireland. Although we continue to face challenges in our services, we feel that it is important to recognise that we have a world-class nursing workforce in Northern Ireland that is comprised of talented, highly educated and deeply committed nursing staff delivering high-quality nursing care to the people in our society, including those who require palliative and end-of-life care. Our nursing staff, whether they practise in Health and Social Care (HSC), nursing homes, GP surgeries or primary care settings, make an invaluable contribution to the active, holistic care of patients with advanced, progressive illness each and every day. I hope that this introduction has been helpful.

Ms Bernie Torley (Southern Health and Social Care Trust): Thank you, Chair, for giving us the opportunity to speak on behalf of the regional specialist palliative care nursing group. Nursing is the largest workforce involved in the delivery of generalist and specialist palliative care. You have heard from our RCN colleagues about the significant contribution that nursing makes to generalist palliative care. We welcome this opportunity to highlight the work that specialist palliative care nurses do and some of the challenges that we face.

A specialist palliative care nurse is a registered nurse with advanced, specialist knowledge and qualifications. We use a person-centred approach to holistically manage the physical, emotional, social and spiritual needs of patients with life-limiting illnesses and their families, focusing on improving quality of life. We mostly work Monday to Friday, 9:00 am to 5:00 pm, delivering palliative care to our patients with the most complex needs across all care settings — hospital wards, emergency departments, outpatient clinics, hospices, care homes and patients homes. Patients die at all hours of the day or night, not just between 9:00 am to 5:00 pm, Monday to Friday. Care needs rarely fit neatly into that 40-hour working week, leaving a large period delegated to out-of-hours care with no face-to-face specialist palliative care. We support, educate and empower generalist nursing staff to identify and deliver high-quality palliative care across all those care settings.

As specialist nurses, we are extremely focused on the wishes, beliefs and values of our patients and their families, advocating on their behalf to ensure that their wishes are listened to and respected. According to the 2024 report by Marie Curie, 'Public attitudes to death, dying and bereavement in the UK re-visited', people in the final days of their lives ranked their top three priorities as:

As specialist palliative care nurses, our aim is to ensure that everyone in Northern Ireland with palliative care needs, regardless of their care setting, receives the highest standard of palliative and end-of-life care. However, that is challenging. The demand for palliative and end-of-life care is projected to increase over the next 20 years by 25% nationally and by 32% in Northern Ireland. That increasing demand already exceeds the capacity of the specialist palliative care nursing workforce, leading to delays in patient assessments, potential waiting lists and immense pressure on staff that negatively impacts on recruitment and retention. Data reviewed in 2023 revealed a 44·5% turnover rate amongst specialist palliative care nursing staff. Filling vacancies and recruiting staff with the required knowledge and skills have been challenging. That difficulty arises from the lack of dedicated training positions and the lack of succession planning for specialist palliative care nursing roles. There is a disconnect between commissioning, education and succession planning. In the past five years, only 18 places on the specialist practice qualification course in palliative care were commissioned, compared with 33 places that were funded by hospice charitable funds. Currently, we have four advanced nurse ANP trainees, three of whom were funded by hospice charitable funds, with only one commissioned. Unlike other specialties, there are no dedicated training positions in specialist palliative care nursing. There are also disparities in palliative and end-of-life care provision across Northern Ireland, especially during the out-of-hours period, leading to an increased reliance on acute and emergency services.

Effective communication across sectors can be challenging. Encompass strives to enhance communication and integration. Currently, however, hospices are limited to read-only access. Unlike trust colleagues, specialist palliative care nurses in the hospice sector lack a process for obtaining cipher codes or prescription pads. A project at Foyle Hospice is addressing that by using the hospice cipher code to enable staff to prescribe medication during home visits. Early data shows that that significantly reduces the time between prescribing and patients receiving medication, enhancing patient experience and allowing loved ones to spend more time together.

The solutions are, we believe, regional and local. We need to understand the population need, taking into account patient complexity and demographics and the current specialist palliative care workforce. That will inform planning and should include transparent, fair commissioning. We need a sustainable specialist palliative care nursing workforce equipped with the knowledge and skills to care for those requiring specialist input. That will require commissioned specialist education, including dedicated training positions inclusive of the independent sector and support for nurse-led research in the field of specialist palliative care.

We need a clear regional career development pathway to reduce staff turnover and burnout, along with investment in advanced nursing practice and nurse consulting roles within specialist palliative care. We need a clinical lead with accountability to provide strategic and influential clinical leadership. We need a new palliative and end-of-life care strategy for Northern Ireland to deliver up-to-date strategic direction and support. There is a need to establish a long-term, sustainable regional funding model for the independent hospice sector.

Implementing the advance care planning policy, including the ReSPECT form and process, to ensure timely do not attempt cardiopulmonary resuscitation (DNACPR) discussions is required as a matter of urgency. We cannot overstate the moral injury and distress caused to patients, families and nurses by not having the ReSPECT policy implemented. Patients are having to have DNACPR conversations multiple times or not at all, because there is no process or documentation to transfer decisions between care settings. All hospices in Northern Ireland need full access to Encompass urgently, as do all nursing staff delivering palliative and end-of-life care. There is a clear, identified need for a single point of contact, and that will ensure that people can get access to reliable, consistent palliative care information and support. Work has begun to scope and cost a seven-day working model for specialist palliative care nursing in the out-of-hours period. We await the outcome of that work, but, for its potential to be realised, it will need to be funded and prioritised.

We have the capability to deliver excellent patient-centered palliative and end-of-life care. Addressing those solutions would enable us to provide that high standard of care more consistently.

The Chairperson (Mr McGuigan): Thank you. The quality of the evidence that the Committee has received from not just you but everybody who has come before us during our inquiry has been of a really high standard. I had a raft of questions, but you have asked and answered them. [Laughter.]

That is good: we want to get to the crux of the problem.

We are undertaking an inquiry. It will cover a lot, and we will make lots of recommendations. Hopefully, it will be a good report, and, hopefully, its recommendations will then be implemented. Ultimately, it is about delivering patient care, whether that needs more resource, more staff, more funding — whatever it takes. From my point of view, I would like to know what are the key issues facing healthcare providers in providing that excellent end-of-life care. Over and above what you have said — your evidence has been detailed, which is appreciated — is there anything else? You spoke about the disparity among trusts. What could we do? What are the blockages? Why are some trusts doing more? Some trusts might be doing things better or differently.

Can we get a sense of how you view not what the disparities are — we kind of understand those — but the blockages that are leading to them? I am not sure how you want to share that out to answer.

Ms Torley: The mixed economy of commissioning between trusts and the independent hospice sector plays a big part in the disparities. It is not transparent for commissioning regionally. That has a massive impact on it. Excellent work is being done in different areas. We do work well together, but there needs to be a lot more integration, better communication and a more-coordinated, standardised approach to really look at it exactly. Others have cited the scoping exercise. We need to know what is out there. Excellent work is going on, but we might not know about it. That is the key thing for me.

Ms Denise Cranston (South Eastern Health and Social Care Trust): As leaders in specialist palliative care, some of us will have taken on quality improvement projects or initiatives. We will have identified a gap in our own locality and, maybe, developed a project. That is how the just-in-case boxes came about in the Western Trust. We have rapid access hubs in the South Eastern Trust. We have nurse prescribing in Foyle Hospice. In each trust, those initiatives will probably be down to our identifying a need, because we have seen the delivery of care for patients, and asking, "How can we improve that with what we have?". That is where some of those projects and initiatives have come from: just from us going to our managers and saying "We think that we have a solution. Will you support us to develop this project?".

Ms Torley: Yes. There is the lack of a regional approach and standardisation. We all do what we do because we know the impact that we can make. We know where the gaps are: they are glaringly obvious. We hear it, time and again, from our patients and families. Excellent work is going on. The Southern Area Hospice has set up the out-of-hours end-of-life nursing project, but, again, there is no recurrent funding for that. It has continued at risk. Excellent projects are going on. Projects are being done in lots of wee areas, but, because of that lack of funding and resources, we cannot scale them up and spread them. It is a real shame because the work is being done. We do not need to reinvent the wheel or start from scratch. The projects have been evaluated. We see the impact that they have made. We can see the difference that those projects are making, but there is the lack of a standardised approach.

Ms Thompson: Yes. The scale and spread does not always have to cost money either. Sometimes, the projects that are being done are just a new way of working or using the resources that you have. Again, there seems to be a lack of ability to just get that information and use it. Obviously, some projects do cost money, but there are other ways to do things just by changing the way in which you use your resources. Some of the projects that are ongoing at the minute are phenomenal. Just by using the resources that you have, you can really make a difference. Nursing has really proved that.

Ms Karen Bowes (Royal College of Nursing): Yes, absolutely. Some of the initiatives that we have seen and heard about from our members have come from their having identified a need. In EDs, they will take on some palliative care nurses to expedite discharges. Some trusts have in reach teams going into care home settings to support syringe pump training and things like that for nurses. It is almost as though something has been identified in pockets and has not then been picked up regionally.

The Chairperson (Mr McGuigan): Denise, you gave a few examples of different initiatives that relate to medicines. We have had dialogue about the potential benefits of having non-medical prescribers. Could that be developed? Would it be beneficial?

Ms Cranston: Again, most of the trusts and the hospices will have non-medical prescribers in their specialist palliative care teams. We would advocate for and encourage that in those teams. Again, it comes down to commissioning. Thankfully, that has been supported over the past few years. We have been able to get staff through that programme. Going forward, the specialist practice qualification is changing so that people who embark on that programme will come out with non-medical prescribing. There is a two-pronged approach to achieving the result of a non-medical prescriber in your team. The teams with a non-medical prescriber have seen the true benefit because of the timely prescribing and prescription changes if needed. It has been evident in Foyle Hospice's work, and we anticipate the report to see if the approach can be spread more widely than it is at the moment.

Ms Bowes: Prescribing is also happening in district nursing. We have advanced nurse practitioners in district nursing, and they can prescribe 24/7 in some areas, but again, there are limited numbers. For instance, we have one advanced nurse practitioner in North Belfast, one in West Belfast and two who are waiting to qualify in South and East Belfast. The Committee heard from the divisional nurse for Belfast a few weeks ago. That is happening in those areas, and they, as well as the specialist nurses, can prescribe for patients at the end of life.

The Chairperson (Mr McGuigan): OK. Finally, Bernie detailed the workforce issues very well. I was struck by what you said about training. You seem to suggest that the majority of specialist nurses are trained as a result of fundraising as opposed to commissioning. Again, is that because places are not commissioned? Are there not enough training places?

Ms Torley: No. Training places are available.

The Chairperson (Mr McGuigan): OK.

Ms Torley: Training places are definitely available. The problem is a lack of commissioning. Over the last three years, hospice charitable funds have paid for the specialist education. There are no commissioned places coming up this year at all, which is shocking.

Ms Bowes: There is commissioning for the generalist workforce from the Department for the trust, but it is very small and has been reducing.

The Chairperson (Mr McGuigan): That is shocking, to say the least. I will move around the Committee. Órlaithí is first.

Ms Flynn: It is shocking. Diane's point from the last session has stuck with me: you do not pay for your birth when you are coming into the world. The services are paid for by the Department and the state, as they should be. Why do people have to fundraise when they are going out of the world? The point has stuck with me.

All the issues that you raised seem to come back to commissioning. You mentioned the commissioning of the specialised palliative care workforce, but it is still very light in comparison with the generalist workforce. Where does that fit into the Department's workforce strategy? Do you feel confident and secure about how the work will roll out and where your teams will fit into it?

You also mentioned training and a lack of succession planning. Who leads on training and succession planning? We already have a workforce strategy in place. Who needs to take leadership on those things to make sure that succession planning and the commissioning of the appropriate number of places is contained in that work? Who is accountable for overseeing the work? Who needs to take on the leadership?

The idea of appointing a clinical lead was referenced in previous sessions. Do you think that a clinical lead would take on that role? The palliative care partnership board is also in place. Philip's first question was about the variation across the trusts, and that came back to commissioning. How have we ended up in a situation where one trust can provide a service to people and constituents, but that service might not exist in another trust? I am trying to unpick how, in your opinion, we have got to where we are. Is it a leadership issue? Is it a structural issue? Is it a commissioning issue or a workforce issue? Is it all of the above?

How do we ensure that this inquiry makes the most effective, impactful recommendations so that we can get consistency across all areas and get that stability for your workforce?

Ms Bowes: A regional approach is definitely needed, and the clinical lead could probably oversee what is happening. We need to scope out what is out there. The information that we have given you has come from our members. Not every member in every area will have responded, so there may be things out there that we do not know about. That is the first thing. We need to scope out what is there and what is not, and, as Ruth said, we need to know what can be scaled and spread from what we have.

Everyone is going to tell you that a clinical lead is definitely what is needed, and, as a nurse, my point is that, on all of those tables, we need nurses there, advocating for nursing. We need multi-year commissioning. Our areas need to be able to succession-plan, as the ladies said. We also need to know who we are releasing. There is no point in a district nursing sister being told that she is going to release one of her staff in August for September. There is no backfill there. We need multi-year commissioning. The very last-minute situation is not really working for anybody.

Ms Thompson: Currently, we do not have confidence in the workforce plan. We have known the years the issues that there are, and sometimes it appears that it is getting worse instead of better. We know that we have an ageing workforce, and we know that there is a lack of education, but those issues have been highlighted for many years. We have lots of regional groups within palliative care that have been able to advocate for all of those things, but, to date, we have not actually seen a proper progression of or resolution of those issues.

Ms Torley: Our nurse consultant in palliative care for Northern Ireland in the Public Health Agency (PHA), Sally Convery, carried out a specialist palliative care workforce census last year, with the support of our group, the regional specialist palliative care nursing group. That is to get a baseline to see what nurses are in post and what qualifications they have, and that data is being analysed at the minute. That is the beginning of it. Órlaithí, I agree with all that you stated. I think that it is a combination of the clinical lead, the regional approach and the commissioning. It is all of the above.

Ms Flynn: Yes, that piece of work is by the PHA, is it?

Ms Torley: Yes.

Ms Flynn: So, is it analysing that data at the moment?

Ms Torley: With our group, yes. Sally Convery is the nurse consultant in the PHA for palliative care, and the regional specialist palliative care nursing group led on that census last year. That work is being analysed at the minute.

Ms Flynn: Very good. That is something that we could consider as part of the inquiry. That will be really important.

Mr Donnelly: Thank you for that very comprehensive run-through of all the work that you do, both general and specialist. I am aware of some of it, but I was not aware of all of it. I should state that I am a nurse and that I have delivered palliative care in the Southern Health and Social Care Trust. I declare that interest. Therefore, I am very aware of its benefits.

Bernie, one thing jumped out at me from what you said. What is the reason for the 44·5% turnover in specialist palliative care nursing roles?

Ms Torley: It is quite a significant figure, is it not? A workforce-planning report was done in 2017, and it was reviewed in 2023 post-COVID. That was where the data showing the 45% turnover rate came from. It is a mixture of retirement and, to be honest, an element of burnout and staff leaving to go to other specialties, and also coming through COVID. It is the lack of succession planning. We have an ageing workforce, and workforce planning and succession planning with the commissioning of specialised education places are vital. We are struggling to meet demand at the minute. There are so many prongs to it. Given our ageing population and changing demographics, as you are well aware, the demand is growing exponentially, but our workforce is struggling to meet the current demands. Therefore, it is critical that we do something now about succession planning and the education and training positions.

Ms Bowes: When we looked at that in 2016, Danny, we were looking at the projection that the commissioned places that we had at that time would continue. In that period, I was working in one of the trusts as a specialist palliative care nurse. That commissioning did not happen. Those figures dropped off, which meant that projected new staff to balance out retirements did not follow through.

Ms Torley: It is another example of a great piece of work that was done. A lot of great work went into it, but, because of lack of funding, it was never acted upon or delivered.

Mr Donnelly: At the minute, because of the lack of commissioned places, you are basically losing people out one side and not bringing them in the other side, so [Inaudible.]

Ms Cranston: We have a desire for succession planning. We will try very, very hard and will support and coach our staff as much as we can, but our hands are tied without that commissioning in place, and that is because of the expert knowledge and skills that the staff are required to have to work in specialist palliative care. The desire is there, but our hands are tied at this time.

Ms Torley: That is where a specialist palliative care career pathway would make a big difference. Among the newer posts of ANPs, I am a trainee at the minute and am due to finish in September, and there will be four of us qualifying in September. Those palliative care and nurse consultant roles are vital to attract staff into the role. If there was no development —. You have to think about attracting staff into the role.

Ms Bowes: As you can imagine, the impact on the generalist staff is huge when you do not have sufficient specialist palliative care nurses there. The generalist staff in the wards and care homes and in district nursing are trying to access advice and support. They do not have enough education or support, which, as generalists, they need, and they do not have enough access to that either.

Ms Thompson: It is important that, as we develop these new roles, the ANPs are supported in the role, because caseloads can be massive, especially given the reduced workforce in some areas and the lack of specialist trained nurses. It is really important that we place a lot of value on the staff that we have and ensure that they have the correct support to enable them to carry out their roles.

Mr Donnelly: Thank you. Do-not-attempt-resuscitation (DNAR) orders were raised in a previous evidence session. People are having to restate and restate and ask the same question again and again. That is incredibly distressing for patients and families. How do you feel we could get round that?

Ms Bowes: Through implementation of advanced care planning and ReSPECT, which are being implemented across the rest of the UK. Danny, this is not new. I took up my post in Belfast in 2011, and we did not have a regional DNACPR form then. We are seeing more patients in the community setting especially, because that is most patients' preferred place of care or they spend a lot of their time at home, and therefore, this situation is coming up more and more. Our members will tell you about experiences that they have had where they have a syringe pump in a patient and they come along to find an ambulance there or carers attempting resuscitation because there is no documentation. We hear many such stories, and I have seen that happen in my own practice. It is really distressing. You are in a home providing end-of-life care, but, at the same time, someone is performing CPR. It is a real contradiction, and it leaves the families really distressed and confused. I have had conversations with patients' families, and they have said, "Why did they attempt resuscitation if you told me that my loved one was in end-of-life care?". They carry that distress with them after the event, as do the nurses.

Ms Torley: And the ambulance crew.

It is great to hear that paramedics now have the power to make clinical decisions when they are out in the home. Like Karen, I have personal experience of that. It is horrific. It is so undignified for the patient, the family and all the staff, who know that it is the wrong thing to do. It is very welcome to hear that paramedics have that power.

Mr Donnelly: The Ambulance Service mentioned the fact that it is now doing that and that paramedics are making decisions in that area. They should not have to. A decision that has such huge consequences for the family and the patient should be very clear. Hopefully, we can take that issue forward and improve on that.

The other thing is Encompass. We hear about it again and again. Most of the trusts already have access to Encompass, but not the Western Trust, I believe.

Ms Bowes: It will go live there and in the Southern Trust in May.

Mr Donnelly: On the other side, the specialist side, hospices do not have access, but —.

Ms Cranston: Encompass is set up within the trust, so all the specialist teams in the acute hospitals will have access to it and will use it. You are right: by, I think, 8 May, all trusts will be on Encompass, but the hospices only have read-only access. That is a huge issue for us in terms of connectivity and communication. It can slow down the transition of care between one site and another. For patients moving from the community side into hospital, we have a process whereby hospice nurses can make referrals to palliative care consultants for advice. We have had to revert to doing that on paper, because the nurses do not have access to the Encompass system to place those orders. That is an urgent problem that needs to be resolved very quickly.

Mr Donnelly: You have gone backwards and are making paper referrals.

Ms Cranston: We have had to revert to using paper, because the hospice community teams cannot place an order in the Encompass system. It is down to not having access. They have only read-only access, whereas we can place an order between a trust and another trust electronically. We have that communication between the trusts, and each trust can see the patient's record. In the hospice system, you can see the patient record, but that is all you can do with it.

Ms Torley: It is read-only.

Ms Bowes: There is no access for care homes at all, and there has been no discussion about it. As Ruth said, about 10,500 of our population are in nursing beds in the care-home sector, and a lot of those patients are supported with palliative and end-of-life care. The nurses there do not have read-only access: they have no access at all.

Mr Donnelly: Do they not
even have read-only access?

Ms Bowes: They have no access whatsoever. There has been no discussion about it either, Danny, that we have heard of.

Mr Donnelly: OK. That is concerning.

Ms Thompson: If somebody is with the hospice service for weeks at a time, you can imagine the input that they will have had and the changes that may have been made to their care, but there may be no record of that in the trust.

Mr Donnelly: There was no discussion. Has this not been raised as something that —?

Ms Bowes: Oh, it has been raised, but prior to this, care homes did not have access to the electronic care record. The issue has been discussed, but there has been no suggestion whether or when they would have access.

Mr Donnelly: OK. Thank you very much.

Mrs Dillon: Thank you very much for the presentation and the paper that you gave us. The Chair is right: it was extremely informative and covered an awful lot of what we may have wanted to ask.

Chair, we should probably not wait until the end of the inquiry. Officials are probably listening, and I hope that they do not wait for a recommendation on DNARs to come from the inquiry. We have just referred to paramedics now being able to make calls on those situations, but they should not have to. They should not be in that position, and families should not be in the position of standing there, thinking, "Is this the right thing or not?". Paramedics certainly should not be in that position either. I would like some answers now on why nothing is happening. Why are we still talking about it this week, after the presentation that we had two weeks ago? It is utter madness that we are causing trauma for families and people who are at the end of life. That is exactly what is happening: trauma is being caused to families, to people who are dying — they are at the very end of their life — and to the people who are looking after them. I want us to push hard on that now.

Órlaithí covered the nursing workforce issue well and tried to establish how, through the inquiry, we can look at how we follow that through and make sure that it is addressed. Do you have confidence that you are being listened to by the Department? Do you have confidence that departmental officials — this is an awkward position to put you in, to be honest, given your role — are genuinely listening to you when you come to them with solutions? I ask that because all that I heard in your presentation and all that I saw in your paper were solutions. You did not say, "Here's what we need" — well, you said what you need, but you provided solutions to get what you need. You did not come and say, "There's all the problems. Can you fix it for us?". You came and said, "These are the challenges. Here are the solutions. How can we work together?". Are the departmental officials and even the trust chief executives listening to you, and is palliative care a priority for them?

Ms Bowes: Linda, honestly, we are a lot of voices. There are voices for mental health services. There are voices for midwifery services. There are lots of voices saying what is needed, and you get caught in that, because a lot of people are trying to put their point across. From a nursing perspective, I think that we are listened to. It is about what can be actioned. Resources are finite. That is the bottom line. It is not that people blank us or do not listen to us; they do listen to us, but they do not have the resources to take forward what is needed. Even if we came to them with a solution and they agreed with that, the issue would be how they action it.

Ms Torley: All of us who work in this field are just so relieved and delighted that this inquiry is taking place. As Karen said, the issues are not new — well, 90% of them are not new. We have been asking for those to be addressed. We have heard that time and again. The inquiry is just so welcome. We have to have hope and be positive that something positive will come out of this and that palliative care will be prioritised. We have to remember that we are doing this to improve the experience of those patients and their families. That is why every one of us is in the role that they are in. It is hard to answer your question about whether we believe that we are being listened to. All I can say is that we really hope that, as a result of the inquiry, we will be and that palliative care will be prioritised.

Ms Bowes: As Ruth said, we have a palliative care network of RCN members in Northern Ireland. When I wrote to ask them to look at the questions from the inquiry, I was blown away by the responses. Those front-line nurses, who put in the hours, wrote back to me and did Zoom calls when they came home in the evening. There is a real will and a real desire among our members to have their voices heard by the inquiry. We are really pleased with that.

Ms Thompson: We continue to — [Inaudible.]

Mrs Dillon: I have no doubt that there is a will, because you do not do palliative care nursing unless that is at your very core. I mean no disrespect to every other nurse, but palliative care nursing is a specialism that is probably like no other. I can understand why they are very passionate about it. I am sorry: did I interrupt somebody who was about to speak?

Ms Thompson: No. I just said that they always want to make it better. I sense a wee bit of frustration from you, Linda, because those issues come to you as well. As Bernie says, we are hopeful, and we hope that we are being listened to, but there is probably a wee bit of frustration with the time that it takes to progress these things. Hopefully, the inquiry will help us to continue to highlight those issues and get some solutions.

Mrs Dillon: Honestly, from us to you, we are hopeful too. That is why we are doing the inquiry. We are not doing it to pass time, and we are certainly not doing it to waste your time. It is important to us, and we are hopeful.

Obviously, there are funding issues right across the board, but, to me, money can be saved in other parts of our services by doing the right thing in palliative care. I really want the Department to start looking at how to do things differently. I know that it needs funding to help it make those moves, but there are definitely some things that can be changed. For me, it goes back to what Diane said and the point that we have raised repeatedly: it is about keeping people out of hospital and EDs and allowing them to die with dignity. It is not about keeping them at home because you do not want them; it is because that is what is best for them. The end result is that they will not be sitting in ED or lying on a hospital bed when they do not need to be. There will be resource savings, but there is benefit for everybody. It is about doing the right things. That is not always extra; sometimes, it is about doing the right thing to make sure that you do not have extra work.

I really appreciate the presentation. Thank you.

Mrs Dodds: Again, thank you for the presentation and the work that you do. It is really important. There are a couple of things that I have probably not taken down correctly. You said that there is a 24-hour district nurse service in only two trusts in Northern Ireland. Which two?

Ms Thompson: Belfast.

Ms Torley: And the South Eastern Trust.

Mrs Dodds: That is a general district nurse service, not a palliative service.

Ms Bowes: They provide a palliative care response. There may be Marie Curie services in some of those areas as well. Palliative and end-of-life care is a core component of district nursing. They are the key worker because of that. Just those two trusts have 24-hour services.

Mrs Dodds: You have highlighted the fact that there is a postcode lottery when it comes to services across Northern Ireland. I have said this before, but it is worth saying it again: it is quite incredible that we had to launch a palliative care inquiry before the Department would scope out the services that it was commissioning and what else was out there. That is neglectful.

I write all these things down in my little health book. In what year is the demand for palliative care projected to rise by 32%?

Ms Torley: From 2023 to 2048. That came from a Marie Curie report.

Mrs Dodds: That is very significant. If we do not plan now, we will hit an absolute crisis point in the not-too-distant future. That is a point for us all to remember.

I appreciate a lot of what you have said. I will cover the issue of the delivery of palliative care in an inappropriate setting. In January, many members of the Health Committee, including me, visited the ED in Craigavon. It was brutal, to say the least, for staff and patients, and it was also very difficult for the Ambulance Service. Last week, as I walked through the main door of Craigavon hospital, an ambulance driver rushed over to me and said, "Diane, I've been here from 10 am with a really ill patient, and we still haven't got a bed". That is the pressure that staff, including doctors and nurses, as the primary caregivers, are under. How does the concept of corridor care — I hate saying that — impact on palliative care?

Ms Bowes: The RCN report on corridor care, which we released in January, contains thousands of stories, and a chapter on Northern Ireland. The very first story in the first chapter on Northern Ireland is:

There are stories about privacy, dignity and compassion. Those are the words of one of our nurses here, in Northern Ireland. It takes a lot for a nurse to complete something such as that and put a story online. There is a lot of strength of feeling behind it. That is just what the nurse said; how does that person, and the people who are important to them, feel when they are experiencing their end of life in a corridor bed, an escalation bed, a boarding bed or whatever they are called? I think that we will see the moral injury to the nursing staff as the years go by. They are trying to provide that care, but some of it is not being done. Therefore, to answer your question, it is extremely difficult.

Mrs Dodds: That is one of the reasons why I continually ask about nursing availability to keep people who are in that very vulnerable position out of ED situations. It is massively important.

When we think of palliative care, we do not always think of things that are outside the scope of cancer, heart disease, etc. I noticed that, in some of the briefing papers, the issue of palliative care connected to mental illness. Do you want to comment on that, briefly? We need to consider palliative care in all its senses, not just in one.

Ms Bowes: When we talk about our network in Northern Ireland, we include nurses who work in mental health, learning disability and GP surgeries who are part of the palliative care network. It shows you just how wide-reaching nursing is. A section in our report was provided for me by a mental health nurse. She talked about some of the patients that she went out to see. She spoke to me about a patient who had severe mental health and addiction issues and was at the end of life. When she got to their house, they had a blow-up mattress, one knife, one fork and one spoon. Because of their mental health issues, it had taken them a long time to present to their GP and to hospital. Therefore, we talk about parity of esteem. People with learning disabilities, people with mental health issues, homeless people and people in the justice system often do not have equal access to services. A lot of time, the difficulty stems from failure recognise that their mental health needs are separate from their palliative care needs. They need to seek help and know where to go with the other issues that they are dealing with in their lives.

Mrs Dodds: It is important that we spread the net, so to speak, as far as we can. I must ask about one last point, for clarity. When you talk about specialist palliative care training, is that for nurses who are already qualified, or is it similar to the way that you can choose to do your training in children's nursing or —?

Ms Bowes: Post-registration, we have specialist practice qualifications that register you with the Nursing and Midwifery Council (NMC), so there is district nursing, health visiting and adult. Adult can be palliative care, emergency care, respiratory — there is a list of them. Then you hold dual registrations that you are a palliative care nurse or a district nurse as well as a registered nurse.

Mrs Dodds: Thank you very much. This has been a really important presentation from, as you say, the people who, statistically, will deliver most of the palliative care for Northern Ireland. Thank you.

The Chairperson (Mr McGuigan): Thank you Diane.

Karen, Ruth, Bernie and Denise, thank you very much. That is much appreciated. As I said previously, I hope that our report will do justice to your work and contributions to our inquiry.

Ms Thompson: We are always happy to provide further information, if there are any questions beyond today.

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