Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Dr Joan Regan, clinical director of palliative care in the Belfast Health and Social Care Trust; Roisin McSwiggan, divisional nurse in older people's services in the Belfast Trust; Professor Max Watson, consultant in palliative care medicine in the Western Health and Social Care Trust; Bernie MacCafferty, assistant director of intermediate care services in the Western Trust; and Dr Nigel Ruddell, medical director in the Ambulance Service Health and Social Care Trust. You are all very welcome.

I remind witnesses and members that we have an hour for the session. We have your written submissions, so I invite you to give a brief oral synopsis that goes beyond the information that you provided to us in those briefings.

Dr Joan Regan (Belfast Health and Social Care Trust): Thank you for the opportunity to speak with you and to highlight the palliative care challenges and developments that exist in the Belfast Trust. We provide adult community and hospital palliative care services through generalist and specialist teams. Our generalist services, as you may know, are delivered by district nurses, GPs and hospital ward staff. Our specialist services are delivered by teams of consultants, clinical nurse specialists and allied health professionals. Our teams provide not only end-of-life care but symptom control and support for those with incurable, advanced illnesses over long periods, and our specialist teams are relatively small compared with those for other specialties.

What does a good death look like for you and me? It is about being in a place where you feel comfortable, safe, cared for by staff who are trained in providing safe end-of-life care and supported by the wider, multidisciplinary team (MDT) to ensure that your needs and your family's needs are met. That might be at home, in a hospice, in a care home or even in a hospital. People should know who to call, what to expect and how to access quality care at the end of life. However, that good death is not always achievable for all patients.

The Marie Curie 2024 report 'Better End of Life Care: Findings from a nationally representative survey of experiences at the end of life in England and Wales' states that care for dying patients is "in crisis". Unfortunately, that is true for Northern Ireland as well, because, despite many excellent experiences, we know that one in four people in Northern Ireland misses out on the palliative care that they need. A poor experience can leave trauma in its wake and contribute to prolonged bereavement reactions, mental health issues and complaints from loved ones.

The population data tells us that, since the pandemic, there has been an excess death rate of approximately 9%. The annual population rise in Belfast is predicted to be 0·5% per annum. There is also a predicted doubling of our elderly population by 2048. Belfast has a very high proportion of single dwellers, particularly those who are older in life. High levels of mental health issues and the fact that there are significant areas of deprivation and poverty have had a significant impact on patients, particularly at the end of life, when there are increased financial burdens and demands.

We in the Belfast community service have a 24-hour district nursing service that works seven days a week, 365 days a year, seeing a caseload of approximately 5,000 patients per month, 25% of whom have palliative care needs. The district nursing service works very closely with GPs and the Marie Curie out-of-hours nursing service, but those who are in specialist palliative care have only Monday to Friday, nine-to-five support for face-to-face liaison. That leaves 128 hours of the week, which is designated as the out-of-hours period, without access to face-to-face palliative care.

In some instances, patients will attend an emergency department (ED) for assessment, even though a face-to-face review in the community might have diverted their care down a less acute route. Diagnosing that a patient is indeed dying and may not benefit from hospital care can influence the care decision significantly. Our ED services are receiving sicker patients. Last year, 160 people died in the Royal Victoria Hospital ED — not all of them were palliative care patients, but a significant number were — leaving patients, families and staff morally distressed by the environment, the lack of privacy and the lack of dignity of a patient dying in a busy ED.

Do-not-attempt-resuscitation (DNAR) orders or do-not-attempt CPR orders that are made in hospital settings do not transfer into community settings on discharge. The GP is required to review and reinstate the DNAR order. That process has resulted in a number of inappropriate resuscitation episodes in the community setting while awaiting a DNAR order review. Full implementation of the advance care planning policy and the recommended summary plan for emergency care and treatment (ReSPECT) policy would make a huge difference in avoiding that situation.

Our specialist palliative care teams have had an increase in workload of approximately 30% in the past five years, but there has been no additional staffing. To remind you, at present, just under 50% of patients in Northern Ireland die in hospitals. Our teams work in increasingly difficult contexts with increasingly complex patients. Patients' needs do not fit neatly into the 40-hour working week, and there has been no workforce plan to commission a seven-day service for palliative care across the service.

What are we doing about it? At the end of April 2025, we plan to open the Belfast community palliative care hub. That is a new, collaborative project between the Belfast Trust and our two local hospice providers, Marie Curie and the Northern Ireland Hospice.

It will provide a single point of access for patients and professionals to refer into community palliative care services in order to provide a coordinated and timely response to need. The purpose is to maintain patients at home, avoid ED attendance and reduce hospital admission, if appropriate. We are working collaboratively with our ED colleagues to look at pathways to avoid the ED route. We have also secured temporary funding to embed two clinical nurse specialists in the Royal Victoria Hospital's ED to support the staff there in delivering good end-of-life care, to educate them and to provide early intervention through palliative care. Our district nurses include four advanced nurse practitioners, and early evidence suggests that half their work involves responding to palliative care and end-of-life need. Our district nurses are also implementing "just in case" boxes that provide anticipatory drugs to a patient's home when they are needed. We are very actively involved in the national audit for care at the end of life (NACEL) to identify areas for improvement and to share best practice. For several years now, NACEL has been recommending seven-day specialist palliative care services across the UK.

What do we want you to do? We ask you to develop a funded and ambitious palliative care strategy that addresses some of those issues; to work with us to provide a funded workforce that is fit for the present and ready for the future; to allow for safe care delivery, succession planning and career development; and to deliver the palliative care services that the Northern Ireland population deserves.

We ask you to support a long-term palliative care public health campaign that raises the issues and starts the conversation about dying and what people want at the end of their life. Dying remains a taboo subject, and discussion about it is hindered by the delayed implementation of the advance care planning policy and the ReSPECT policy. We ask you to take a whole-systems approach. Social care gaps cause slower discharges from hospital, if someone ends up in a hospital, resulting in secondary care becoming congested. We also ask you to look at wider issues, such as access to medications.

We ask you to promote a Department of Health-supported regional approach to the end-of-life care template that will guide all staff who provide essentials of palliative care at the end of life to avoid having a variation in the care that patients experience across the region. We ask you to advocate that end-of-life care education be mandatory for the general healthcare workforce, to fund hospice care much more robustly and equitably and to make hospice care a core service. If you could do those things, we would be very grateful.

The Chairperson (Mr McGuigan): Thank you. Before anybody else speaks, I should say that the Committee is not the Minister. Lots of those things are in the Minister's remit.

I will cut it short there, unless anybody else wants to comment briefly. Go ahead.

Professor Max Watson (Western Health and Social Care Trust): Thank you very much, Chair, for the opportunity to address the Health Committee. I will follow on from what Joan said, but my presentation may be a bit more compressed. I speak on behalf of the Western Trust. I thank you for the importance that you have clearly given to palliative care, knowing that you have many other concerns. Our health service faces many challenges, so the fact that you have prioritised the needs of people who are approaching the end of life is welcome. It also perhaps recognises that improving consistent access to palliative care could provide a template for improving some of the other healthcare issues that we all face.

As Joan said, we have only one chance to get palliative care right. When we fail, the impact is profound for the individual, the long-term bereavement needs of families and staff morale. You will have read the Western Trust's submission. I will not repeat it, but I will summarise it under three key Western Trust headlines that are on access to appropriate palliative care services.

First, the need is growing rapidly. Between 2022 and 2028, the population that is over the age of 80 in our area will increase by nearly 40% and the population of over-60s will increase by over 30%. We can therefore be assured that the need for adult palliative care services will increase significantly at a time when healthcare pressures and workforce challenges are daily realities for us all. The anticipated increased need for adult palliative care requires us to make provision and improvements now so that there will be a reliable, sustainable and robust service for our rural population and its growing needs.

Secondly, solutions need to be regional and local if they are to be realistic and sustainable. In a world of ever-increasing demand and limited financial resource, commissioning is challenging, yet the costs of not having an adequate palliative care service include delayed discharges; unfortunate and difficult deaths in EDs, as Joan referenced; the over-medicalisation of normal dying; and the time and effort that are consumed by dealing with complaints. Those costs end up being paid for by the whole healthcare system and through the ongoing distress of the bereaved. Other UK regions and the Republic of Ireland have demonstrated the importance that they place on palliative care by having up-to-date palliative care strategies and policies. Regional commitment to do better is vital, but we also recognise that our responsibilities to the dying in our Western Trust area weigh too heavily for us to rely exclusively on waiting for regional fixes.

For that reason, we have developed local initiatives, such as our consultant training scheme. It aims to address our persistent medical workforce gap by training palliatricians who can work in both palliative care and care of the elderly in anticipation of the fast-approaching demographic change. Since before COVID, we have been working with Project Echo to support care home staff across our area with their end-of-life care provision through building virtual communities of practice and leveraging palliative care expertise across our geography. We have also used Project Echo to support our paediatric palliative care teams. We have tentatively embarked on our co-creating hope programme, which links the trust with Fermanagh and Omagh District Council and multiple voluntary agencies, so that we can use the vast assets that are in our community to help support the frail and the dying and develop new ways of working in order to support our population with our population. Solutions need to be regional and local.

Thirdly, we call for seven low-cost, high-impact initiatives. The first is the appointment of a clinical lead in palliative care with accountability, just as the other countries on these islands have. The second is ensuring that access to Encompass is quickly made available to our voluntary hospices and other contracted agencies to ensure that palliative care services are fully integrated with the rest of the health system. The third is that the advance care planning and ReSPECT programmes, which the Department previously funded, be fully implemented in 2025. The fourth is that we commit to the development of a regional palliative care strategy or, better still, a policy with accountability, as the other jurisdictions on these islands have done. The fifth is that some form of regional 24/7 one-stop shop advice line is made available to patients and families across Northern Ireland. The sixth is that electronic prescribing be brought in before the expected date of 2030. That is already in place right across the UK. It will not only save money but make prompt medicine changes available for those who are dying in the community.

Lastly, we ask that the opportunities of virtual education and support networking that are provided by the new technology that is exemplified in Project Echo are built on to develop more efficient ways of sharing palliative care expertise and learning with all staff who are looking after the dying across our health service.

Those concrete asks are doable and affordable, and, when you look across the whole system, you might even find that they are cost-neutral.

Dr Nigel Ruddell (Northern Ireland Ambulance Service Health and Social Care Trust): Thank you, Chair and members, for the opportunity to speak about an area that is not traditionally associated with the Ambulance Service.

Our traditional approach of treating people for emergencies and taking them to hospital is at odds with that of a modern high-performing Ambulance Service in which we have developed a large number of appropriate care pathways, which has seen us reduce over the past 10 years the percentage of people whom we treat and take to hospital from 98% to around 75%. We attempt to find the most appropriate outcome for a patient, rather than using the simplistic approach of taking them to the nearest hospital.

Palliative care is of particular interest to us. We still receive numerous calls daily from patients who are in receipt of palliative care. We recognise that, by default, a lot of the public associates palliative care with cancer services, but palliative care reflects a wide range of medical conditions, where patients may not be at end of life but certainly need a lot of supportive treatment. At times of crisis, particularly when the rest of the system is under considerable pressure, we find that patients will sometimes default to us as a service that they can contact easily or for which they may, hopefully, not have to wait so long for a response.

Unfortunately, to date, we have not been best equipped to meet some of those needs, but we have been making strides to improve that position. Even since we submitted our return for the inquiry survey, there has been improvement right across Northern Ireland in that we now have access to some degree of support for palliative services. However, that differs from trust to trust. It is not 24/7 in all areas yet, although we recognise the efforts of some trusts, particularly Belfast Trust and South Eastern Trust, to make some degree of 24/7 access available. However, that may be district nursing services as opposed to the specialist palliative care service.

A theme that I have heard from my colleagues is that a regional, uniform approach should be adopted so that, no matter where a patient's need arises, we can deliver the right kind of quality care to those patients in a timely fashion. We have to ask ourselves whether, when we get a call in the middle of the night from a patient who is in a palliative stage of care, it is the right thing for an ambulance crew to go out, place that person in an ambulance and bring them to an already overstretched emergency department, which is noisy, busy and presents challenges for dignified palliative care if more specific services can be accessed, often in a more timely fashion, in the community. We have been striving to make those inroads into being able to contact palliative care services directly.

One of the challenges that we face is that there are many different versions of pathways across Northern Ireland. Our staff, as a regional trust, can start a day in Belfast and end it in Derry, and they have to be able to access services no matter where they go. Yet, across trust boundaries, they will face different contact methods for the services that are available and different referral and acceptance criteria for patients. We still face a challenge in that some services may be entirely accessible to my colleagues in general practice but, when one of our ambulance crews contacts a service directly, it is told that, "No, this is accessible only if you go through the patient's GP". We know that general practice is a particularly challenged area when it comes to gaining access. We are simply adding another step to the pathway.

We have access to some of the electronic systems that have been referred to. Ambulance crews now routinely access patients' electronic care records, which has been a great bonus for understanding the background of the patient and the care that they have received recently. The big ask is that we have uniform 24/7 access to direct palliative care services regionally, with a regionally agreed set of referral criteria. We recognise that that will require a scoping exercise of the services that are available. We have already done some work on that by producing a directory of services for palliative care and all other community services that our staff can potentially access on behalf of patients, but more could be done there to make it easier to access those services in a timely fashion.

We have been developing our staff educationally on decision-making. Previously, the role of ambulance crews was very protocol driven, but our education now focuses on allowing crews to look at a patient's holistic care to figure out what that person's needs and wishes are and to then make choices about how best to access the most suitable care for that patient. That education process is continuing as we speak. We look to our partner services in England and in the other devolved Administrations, where there are dedicated teams for palliative care in ambulance services. Wales recently introduced palliative care paramedics. We are on a path to developing those locally, with support from organisations such as Marie Curie. We hope that funding will be made available for dedicated staff, which will increase the quality of the care that we provide.

At the end of the day, our ethos is to do the right thing by all our patients, families and friends and all your constituents. We aim to keep the patient central to our thoughts and to have a truly patient-centred approach. We aim to maintain the comfort and dignity of patients and their quality of life at all times. We would welcome your support in doing that.

The Chairperson (Mr McGuigan): Thank you very much. You are quite right about the priority that the Committee has placed on the issue, which is shown by the fact that we are having an inquiry into it. It presents issues for our health service as a whole but particularly for our constituents. Some of the work that we have done has been reinforced by the evidence that you have given us today. There are workforce issues, a lack of resource funding and a lack of access to palliative care. There is also inequity in access in that different geographical areas have different levels of access to different services.

All of you talked about the need for a region-wide service. Why do we not have a regional service? What is the roadblock? Is it the Department? Is there a lack of willingness from the trusts to work together? It is obvious from the presentations that we heard today and from the work that we have done to date that our not having a regional service is having an impact on patient outcomes.

Dr Regan: Trusts work in silos. It is important that the solution be, as Max said, locally focused, because there are certain needs in certain places. It is about mindset as much as anything. Northern Ireland is probably the size of one trust area in England, yet we have five trusts. That is the way the system is. A big change of mindset is required.

The Chairperson (Mr McGuigan): Does that have to come from the Department showing leadership?

Dr Regan: Yes. We have a palliative care partnership board, which tries to produce regional approaches to things, but certain projects of that board have been defunded. That has stalled an awful lot of regional work that, at one point, was nearly completed. The advance care planning policy, the ReSPECT policy and the enactment of mental capacity legislation are nearly there, but they have not got over the line because of a lack of funding or a lack of will.

Professor Watson: Your question is a really difficult but very important one. It would be with temerity that we attempt to answer it, because those are things that we have been highlighting for 20 years.

Wales has a bigger area, but it has been able to do it. Is it a question of having the leadership, the culture, the siloed funding or the resources to make it happen at a regional level? We do not know, but when we have those conversations with people in such positions, within a few sentences, they inevitably talk about not having the resources.

The Chairperson (Mr McGuigan): You said in your presentation that the proposals will save money and that some will be cost-neutral. I am baffled that the independent palliative care sector does not have access to Encompass.

Professor Watson: That is a case in point, which highlights how siloed the thinking is. It is not just the thinking, however, because the funding is not siloed. We may save some money in EDs, and that would be great. If, however, that results in more costs in another area, we will not do that, because particular areas are independently funded. I am not aware of data from Northern Ireland that provides a financial overview of what is happening when we have an effective palliative care service and an idea of the money that could be saved overall.

The Chairperson (Mr McGuigan): OK. My colleagues will have a lot of questions, so I may come back in again at the end.

Miss McAllister: Hello. Thank you for the presentation today. There is a lot to digest about palliative care, particularly because there are five trusts. If you do not mind, I will focus on the Belfast Trust and the Northern Ireland Ambulance Service (NIAS). I am a Belfast representative, and I have some questions in order to get a bit more information.

My first question is a general one. Why do DNARs have to be signed off again in a community setting? Is it because of the advance care planning policy? What is the stumbling block? Is it a legislative issue or a policy issue? It does not sound as though it is a finance issue.

Dr Regan: It is not sensible. ReSPECT is the recommended summary plan for emergency care and treatment, and a person can hold the document. For example, if the NIAS or carers arrive, and there is a problem, they can see the person's resuscitation status. When patients leave a hospital or cross sectors, the DNAR order does not follow with them, and it has to be re-signed. I am not sure that it is a legislative issue, but it is definitely a policy issue. It is an artificial barrier to providing the right care for the person in an emergency, and care workers have to follow the policy. If there is no DNAR order, they have to initiate resuscitation, but that has resulted in difficult situations for patients and their families.

Professor Watson: A lot of work was done on advance care planning and on ReSPECT, and we were ready to go. There are currently 17 different DNAR documents being used across our little region. The hope was that one document would be used in hospitals and in the community. We were so close to achieving that, and the work suddenly stopped. The ReSPECT documents may even be printed, but there was not the resource available to take the work over the line.

Miss McAllister: That is interesting. The Committee should explore the issue further. It seems to be a regional issue with the Department. It beggars belief that 17 different documents are being used across Northern Ireland. We are talking about dignity and the final moments of a person's life. To be perfectly honest, I am shocked at that.

You mentioned the Belfast community palliative care hub, and you previously raised the issue of the lack of workforce planning. Will the new care hub have a sufficient workforce to enable it to run more smoothly?

Dr Regan: It is essentially cost-neutral. We have re-profiled certain roles, and the hub will coordinate the services that exist already. Its unique selling point is that patients can phone in to say, "I am in difficulty here". They do not have to go through the multiple barriers to get a re-referral to the palliative care service. The hub will provide coordination and avoid duplication of the services that are out there. We are working closely with hospice services and community services. We are coming together as one big team, and we really expect the hub to make a difference to patients' quality of experience.

Miss McAllister: Thank you. You mentioned the excess death rate of 9% since COVID. Will you explain that further?

Dr Regan: In 2018, models were done of how many people we expected to die over the following 10 or 15 years. Since COVID, the excess death rate has related not only to personal health but to the pressures on systems. The situation has created a perfect storm for allowing mortality rates in our population to increase.

Miss McAllister: My understanding that the rate is 9% over what we expected is therefore correct.

Dr Regan: Yes.

Miss McAllister: Given that we have a national health service here, that is a really worrying statistic. Has the percentage ever been as high as that?

Dr Regan: We have not had as high an excess death rate for such a prolonged time as we have had since the pandemic. The models are usually quite accurate.

Miss McAllister: That is particularly worrying. Perhaps we can look at the data to see why that is the case. Having a crumbling health service is possibly part of the reason.

Dr Regan: It is that, deprivation and all the other factors that come together. The workforce plan, if we can even describe it as that, was based on predicted models of the number of deaths. We now have much higher numbers of people dying, and there are new factors involved.

Miss McAllister: I presume that the workforce plan will inform the commissioning of services. To simplify it, let us say that you are pitching for services to the strategic planning and performance group based on data and evidence. You are using the flat death rate, not the excess death rate of 9%, which means that, when you ask the Department for services — notwithstanding services having to go to different trusts — your bid is therefore already wrong.

Dr Regan: Yes.

Miss McAllister: How do we change that? It beggars belief that health trusts ask for funding for services below the level of need.

Dr Regan: We have not had a workforce plan for specialist palliative care for many years. I would say that it has probably been 10 years. Is that right, Max?

Professor Watson: Yes.

Dr Regan: Any services that have been provided since then have been based on predicted models, and we have had a closed envelope. We have been told that there are no new moneys for commissioning. That has had an impact on us, because we have a stressed and stretched workforce and do not have great succession planning in place. We know that the future will be worse. It will get busier and more complex, and we will not have the equivalent rise in our workforce. If we do not have a workforce, we cannot deliver. That is the reality.

Miss McAllister: I agree, but it is frustrating to hear that when we are planning with what we have at the minute. We recognise that there is no funding, but we need to be honest about what we are asking for and not use models that are already out of date. Otherwise, how do we know what we need? We are on the same page, however.

My final question is about the Ambulance Service. There are five trust areas, and ambulances can travel between them to pick up patients. There are different numbers to call and different contacts. It does not sound as though it would be a great financial burden to regionalise the service in order to have more flow. What would it take to regionalise the Ambulance Service?

Dr Ruddell: My colleagues have used the word "silo" in their responses, and I agree with them. Even though we have had an action plan titled 'No More Silos' in recent years, we have not realised all the benefits from it to date. We, however, take a slightly different view, which is that we are already a regional service. We have ambulance stations dotted around the countryside. When an ambulance crew starts its shift in the morning, it can be deployed anywhere and everywhere across the country, and not just for transfers. Our approach is to send the closest ambulance to respond to any emergency in a timely fashion.

There have been some success stories in other fields from taking a regionalised approach to care. I think particularly of the regional major trauma network, on which all the trusts have been able to agree a common position. We have seen its benefit through the saving of more lives. Northern Ireland is now performing very well in the UK. Its position when it comes to saving the lives of patients with serious trauma has significantly improved. We have taken similar approaches with the regional cardiology network and the regional management of acute stroke. If the mindset is there to do it, we can achieve it., but it will require clinicians from the different trusts to work collaboratively across trust boundaries, particularly on agreeing a common set of principles, approaches and standards to which everybody will adhere. That sometimes leads to the centralisation of some services, which can be a thorny issue. In Northern Ireland, we can fall victim to always wanting to have a specific service in a local centre, when one can sometimes improve the quality of care by concentrating it where the experts can provide it. We have seen the real benefits of that with the major trauma network in particular. That mindset is mostly reinforced by our traditional set-up of having five separate trusts that are separately funded and separately managed, with each feeling the need to provide its own specific services. Collaboration across Northern Ireland would bring significant benefits and potentially significant savings.

Miss McAllister: Thank you very much. I do not really disagree with anything that you have just said. Your evidence has been very helpful for our inquiry. It also gives us a few indications of where we need to go next. Those are all my questions for now.

Mrs Dillon: Thank you for your presentations. I agree with the Chair and Nuala that they have been very helpful. I suggest that we get an idea from the Department of all the asks that Dr Regan and Professor Watson outlined. We have answers to some, but I ask that they be collated, as I would like to get a sense of them. I sense and understand your frustration. Unfortunately, like many other Committee members and like many members of the wider public, I understand the situation personally. For want of a better term, a one-stop shop was described. Having one place that people can call and get all the information that they need is absolutely vital. It would probably be fairly cost-neutral and would definitely save money. We know that money will be saved in the system from keeping people out of hospital.

The point was made about taking a regional approach to the deployment of ambulances. People are sometimes concerned. I represent a large rural constituency, so I understand the concern that regionalisation can often mean centralisation. For palliative care, regionalisation should mean more people being able to stay where they want to be. Very often, that is at home or in hospice care. It does not necessarily mean centralisation to a big hospital in a big town. Rather, it is very much about having equity of care across the board.

A lot of the questions that I was going to ask have been covered, so I will not unduly delay the Committee. What is important is that we get answers from the Department about its asks and an understanding of the DNAR situation, which is absolutely disgraceful. It is harrowing for a family to be left assuming that DNAR is in place when their loved one is in a community setting only to find out that it is not. It must be devastating for a family to be in the position in which they know their loved one's wishes but are not able to comply with them.

We definitely need to follow up on that with the Department, and urgently. I would like to have an understanding from the Department of its position on the rest of the asks, particularly because a number of the issues have been raised over many years. The Department is making choices that are the wrong ones.

Professor Watson: I will come in with one point about the one-stop shop. One of the factors that was perhaps against having that related to the ease of access to records, but that difficulty has been removed as a result of Encompass. From 8 May, our entire region will be under Encompass, so it will be possible for a central place to be able to see the records of every patient in Northern Ireland. That should therefore be possible.

Mrs Dillon: I should have referenced Encompass. Sorry about that. It is essential that the other organisations have access to Encompass, because it is important for the advance care plan.

Professor Watson: Absolutely.

Mrs Dillon: For patients to have access to their own information and to be able to make decisions based on that information will be unbelievably helpful for them, as it will be for those with whom they are discussing the situation and having conversations. That is really important. I do not know how easy or complicated that will be. It is something that I raised, however, because there were even issues with GPs having access to information.

My final point is on prescribing. You talked about digital prescribing. We know that newly qualified pharmacists coming out of university are now going to be prescribers. I have asked the Department this question before, but I have not received a satisfactory answer: how are we going to make that equitable? What are we doing about those pharmacies that will not have prescribers? What are we doing to ensure that the Department is providing something for existing pharmacists to become prescribers? I am concerned that that will become another issue for rural areas, where there may be a smaller number of pharmacies and pharmacists of different ages. Furthermore, newly qualified pharmacists may not go into rural pharmacies, because they may intend to stay in the bigger towns and cities or set up on their own. I am concerned that that will create a whole new inequity.

Mr Donnelly: I start by echoing Linda's point about Encompass. The hospices that we have visited as part of our inquiry mentioned the importance of having access to Encompass. Correct me if I am wrong, but I think that some of them have read-only access.

Dr Regan: Yes, they do.

Mr Donnelly: There is therefore already a bit of a read-across. It would be hugely beneficial if that could be widened so that they can fully engage with Encompass. We know the benefits that that would bring.

I will follow up on Nuala's question about DNARs. I am aware of DNARs in a hospital setting. The idea that a DNAR ceases when somebody goes home is very concerning. The thought that that could lead to attempting to resuscitate somebody whom it is not appropriate to resuscitate is very distressing, and I am sure that it would be horrifying for the family. Is there any way in which a GP could to sign off a DNAR for patients prior to their discharge so that that potential gap could be closed?

Professor Watson: DNARs are signed off after difficult conversations. Those conversations are neither easy nor pleasant for families. They are important conversations to be had, but GPs should not have to be dragged through having to have the same conversation, multiple times, by other professionals. If effort has gone into ensuring that the right decision has been made, that decision should stick until patients state that they want to change it. The DNAR should travel with patients digitally and perhaps physically. We do not want a system in which DNAR orders are issued multiple times.

Mr Donnelly: I have had that experience. I was surprised when you said that there are 17 different forms being used. I have only ever seen one, which we referred to as the "red form". It has a red border. I have shown it to many ambulance drivers, prior to a patient being transferred. I thought that the form was more standardised.

Dr Ruddell: I introduced the form with the red border several years ago, in a bid to regionalise its use. I had the work done by ReSPECT. We have been pretty successful in having that standardised approach, whereby, on discharge from hospital, an ambulance crew bringing a patient home, to a residential setting, nursing care or elsewhere, is presented with a copy of that form for clarity.

I agree with you. I find it incredibly artificial that somebody has had that difficult and sometimes very brave conversation on the part of the patient and the family and made a decision, which is valid for the journey home, only for them to walk through the door of, say, the patient's home and suddenly find that it is invalid. I deliver educational briefings to staff, even as recently as yesterday, on the very topic of compassionate care in dying and the management of patients and their families. That is a question that comes up time and time again, when, realistically, it should not have to be that way.

Ambulance crews are no longer automatically obliged to resuscitate somebody to whom they are called. Our national guidelines, which are referred to as JRCALC guidelines, as they are developed by the Joint Royal Colleges Ambulance Liaison Committee, make it clear that paramedics here can make judgement calls about what is in the best interests of a patient and recognise situations in which we know, because a patient is at the end of life, that it is likely to be futile to attempt resuscitation.

From my experience of general practice and from being out on the road with ambulance crews, when we are called as an emergency, often because a family is in a state of panic and not sure of to whom to turn, I know that a rapid and skilful discussion is required, given that somebody has made a 999 call for us to come and help. There may be pressure on us to resuscitate. It takes a level of skill, negotiation and understanding of the situation, and that is part of the decision-making process that we have been focusing on developing with crews to enable them to make those judgement calls.

Mr Donnelly: Absolutely. I can see how that would be appropriate, but it must be a very stressful situation for families.

Dr Ruddell: Crews frequently recognise that resuscitation is not the right thing to do for a patient who is genuinely at the end of life, but there is still sometimes that pressure on us to resuscitate.

Professor Watson: May I correct the Committee? I am so old that I can remember the 17 different forms. Work has been reduced through having the red form, but there are still multiple different areas in which the form can be applied, so we have this awful situation, particularly for our nursing colleagues, where they ask, "What should we be doing here? Is it legal? Is it not legal?". Forms then travel around the country to get the appropriate signature. The process just needs to be tidied up and tightened.

Mr Donnelly: With Encompass, one would hope that that will be the case. There should be universality.

Dr Regan: ReSPECT is embedded in the Encompass package. The DNAR aspect of ReSPECT is used in hospitals, but it defaults to zero when a person is discharged. It is, however, possible to override that if we have trans-sectoral permission to use the same form.

Ms Roisin McSwiggan (Belfast Health and Social Care Trust): It is important to say that, when someone comes into the community and is predominantly being looked after by the district nursing service and GPs, those conversations are then had with GPs. The issue is the repeat conversation. There is always the risk of an element of transition, whereby a patient is discharged from hospital and a district nurse is in providing care 24 hours a day in Belfast, of which we are very proud. The patient may not then get to see a GP for a day or two, and there is the risk of something happening in that period. Not only may the district nurse be going in but home care may be going in, and we are left asking, "What do we do here?". That is the risk.

It is also important to recognise that there is a multidisciplinary team functioning within the community in Belfast. The Belfast community palliative care hub works in collaboration with our two hospices: the Northern Ireland Hospice and the Marie Curie Hospice. We give our staff access to Encompass, so they are totally able to function in the Northern Ireland Hospice. Marie Curie nurses, who work alongside our district nurses, also have access to Encompass in order to make their life a lot easier and for them to be able to have access to patients' notes.

Mr Donnelly: Fantastic.

Ms McSwiggan: We have made some inroads. The situation is not prefect, but it is in transition.

Mr Donnelly: Progress is being made, however.

Ms McSwiggan: Progress is being made.

Mr Donnelly: You mentioned the just-in-case boxes. I had not heard of them before. They sound like a great idea. I imagine that they will make it easier for district nurses and community services. They will have easier and quicker access to drugs that they may need. Are there any other benefits, such as time-saving benefits or cost benefits?

Ms McSwiggan: The whole idea behind the just-in-case boxes is that a patient's condition may be starting to deteriorate, and we are then saying, "I may need access to particular drugs". They are a standardised set of drugs, such as pain relief drugs and anti-sickness drugs.

People have that medication sitting in the house, ready for when it is needed. If it is needed at 2.00 am or on a Saturday or Sunday, it is sitting ready and prepared. They are called "anticipatory drugs".

I will give you an idea of what that looks like. In Belfast, on any day, we probably see 25 to 30 patients who are receiving their end-of-life care through a syringe driver — their medication is being managed through that — and are actively dying. There are probably another 40 patients getting anticipatory meds for symptom management. That means that 60 or 70 patients are being looked after by our community service on any day, which is sometimes missed. Roughly 5,000 patients are in a district nursing caseload at any time. Probably 20% of those patients are receiving palliative or end-of-life care. Our nurses in Belfast also give IV antibiotics. They give about 19 or 20 IVs on any day. That information is not often shared, but that 24-hour service is really important. We are lucky to have it in Belfast. It is not available in rural communities. I live in a rural community, so I understand that it is really important for that 24-hour service to be available to all patients at all times.

Mr Donnelly: Are the just-in-case boxes only in Belfast?

Professor Watson: No —.

Ms McSwiggan: No. Other trusts have them.

Ms Bernie MacCafferty (Western Health and Social Care Trust): They originated in the Western Trust.

Mr Donnelly: That is fantastic.

Professor Watson: The Western Trust pioneered just-in-case boxes, but that raised another issue in that, although the nurses used it for exactly the reasons that have been highlighted, the rurality added complexity. It was so important to ensure that medicines were available.

Developing the programme raises questions such as, "Where is the ongoing funding for that programme?" and "Where is the medicine going to be stored?". It is really difficult in our system to develop such an initiative and secure its sustainable future. In the Western Trust, a lot of the funding came from families' charitable donations to a patient comfort support fund. In a pressurised system, it is hard to initiate and sustain measures. We can have the wonderful idea and get the pump primed, but keeping the pump going has been a real issue for us in palliative care.

Mr Donnelly: Has there been any quantification of the savings, particularly in the time that it takes to access drugs and in patients' pain?

Ms McSwiggan: We have built research into the Belfast community palliative care hub. That has no health economy component, but we hope to have one next year or the year after, when it is up and running. We have built research into that work. It is rare to have a health economist come in to do that kind of work and say, "That is the saving". We just know, in practical terms, that, if the family do not have to go and get the drugs, they can be with the patient when the patient is dying and needs the drugs. It is not only about the time that the health professional — the district nurse — spends on going to administer the drug but about the quality of life of the patient and their family. That is the really important piece.

Mr Donnelly: I have one other question, if you are happy enough, Chair.

The Chairperson (Mr McGuigan): Go ahead.

Mr Donnelly: Something that has come up again and again — the Committee has heard about it in the context of multiple issues in the past year — is that the trusts have different ways of doing things and different policies. It came across strongly that that seems to be a barrier to delivering good palliative care across Northern Ireland. If we had only one trust — somebody suggested that, if we did, it would be similar in size to one in England — would delivering good palliative care be a lot easier and more achievable?

Professor Watson: We have never had that opportunity, so it is hard to envisage the impact. The trusts in England that serve a population the size of Northern Ireland are not perfect either. There is a level of regionality that really works for you and a level of regionality that works against you. That is why I think that the solution will involve the regional and the local working together.

I am not speaking for the trust in relation to this, but the thing that I find most upsetting, having been a palliative care doctor for many years, is that we can deliver superb palliative care. On one day, we could deliver palliative care that is better than that delivered in any country, but, the next day, we could hear of really bad palliative care. We have the capacity to deliver, but we do not have the tools to do it consistently. That is where regional input, help, research and overviews come in.

We had the idea for the just-in-case boxes and did all that work, but then the other trusts, such as the Belfast Trust or the South Eastern Health and Social Care Trust took the idea and put their own slants on it. Why do we waste so much time and energy? It is a mixed picture. I do not know what Joan thinks, but there are some things that we do well as local communities and that is what supports our hospices, but it also leaves us open to inconsistencies in service and a postcode lottery. We need to take account of the energy that is out there across communities to ensure that our dying are looked after well. At the same time, we need legislation and direction at a regional level to ensure that quality is delivered everywhere.

Dr Regan: As professional groups, we are very collaborative. As a regional palliative medicine consultant group, we got together at the beginning of COVID. We transformed our guidelines, pulled together and delivered regionally. There was great consistency in that. We do that with many things. We have brought together lots of clinical guidelines. Again, the lead nurses all get together and work well, so there is an appetite for working together. We need that little bit of financial support to deliver together. I agree that certain local solutions work, but the big stuff should be regional; it should not depend on postcode.

Professor Watson: Our Palliative Care in Partnership board aspires to doing great work but has no financial skin in the game. It can only aspire to do things: it has no clout. There are two key words: leadership and accountability.

The Chairperson (Mr McGuigan): That is a really good place for us to leave it. In the work we do, accountability and leadership are vital.

I thank both trusts and the Ambulance Service for submitting written responses to our consultation, which were useful. Today's exercise has been extremely useful. I take on board what Linda said about the asks that you have. We will certainly follow up on those. As I said, we are not the Minister, but we expect that, if the Committee produces an inquiry report with recommendations, people will look on it favourably. Today has been very useful, so thank you very much for coming along.

Dr Regan: Thank you for listening.