Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Michael O'Neill, interim director of quality, safety and improvement in the Department of Health; Sally Convery, a palliative and end-of-life care nurse consultant in the Public Health Agency (PHA); and Diane Walker, a Palliative Care in Partnership (PCiP) programme manager in the strategic planning and performance group (SPPG). You are welcome. I invite you to make a few opening remarks, and then we will have questions from members.

Mr Michael O'Neill (Department of Health): I will open, Chair, if that is OK. I thank the Chair and the Committee for the opportunity to provide an update on the implementation of advance care planning (ACP), which has featured in a number of sessions during the Committee's inquiry. I propose to give a short briefing on the position of the implementation of some of the policy, which is intended to address some of the issues that have been raised by witnesses during the hearings. I understand that, next week, departmental colleagues will brief the Committee on the palliative care strategy and funding, commissioning and services, and data collection.

I will give some background. The Department published the advance care planning policy for adults, 'For Now and For The Future' in October 2022, but, despite the clear benefits, it has been challenging to establish momentum for implementation since then. Advance care planning is an umbrella term that covers personal, legal, clinical and financial planning. A core aim of the policy is to normalise ACP by increasing public awareness and understanding of ACP, thereby encouraging adults at any age or stage of life to consider and plan ahead for their future, including their future treatment and care. Between 2022, when the policy was launched, and April 2024, the Department engaged with PHA colleagues to establish the best approach to implementation. A task and finish group reported in April 2024, outlining a proposed structure and membership for a project implementation team and priorities for an initial 18-month policy implementation phase. Progress since then has been difficult.

The Chair and members will be aware that the Department and PHA colleagues have faced significant resource pressures over the past number of years. Unfortunately, the implementation of the policy has had to be considered against a number of other competing priorities. That having been said, the implementation of the policy remains a strategic priority for the Department and the PHA, with the associated benefits being clearly evident and understood across the Health and Social Care (HSC) system. Those include enabling individuals to express their wishes regarding future medical care, thereby, very importantly, ensuring that their wishes, beliefs and values are accorded the respect that they deserve. The consequent benefits to the HSC system are also evident. For example, there is the potential to reduce hospital admissions through a more efficient and effective use of resources. Against that, the risks of not implementing the policy could mean that individuals are not empowered nor afforded the opportunity to have decisions about their care supported by a record of their wishes, beliefs and values. As a result, care would be less likely to be proactively managed and coordinated.

The Department acknowledges that the continuing absence of the delivery of a clear and structured implementation plan is frustrating for the HSC and for stakeholders. We have heard that perspective raised in sessions during the inquiry. Members will be aware of the Minister's correspondence in May and June 2025 to the Committee on advance care planning policy. He outlined that some progress should be possible as part of our wider winter preparedness plans, which demonstrates the Minister's commitment to what we all acknowledge is a very important area of work. I understand that the Department will brief the Committee on winter preparedness planning on 18 September and that a written briefing is also being prepared.

By way of an update since the Minister's letter, I can confirm that advance care planning has now been identified as one of the eight priority work streams for consideration under our winter preparedness programme. Work has started in recent weeks to establish an advance care planning project. That work will continue at pace in the coming weeks and months. That is an important first step, but it will, of course, be equally important that the implementation is progressed in a managed way and that some of the inevitable challenges around system readiness — training and resources, for instance — are worked through, most likely with a pilot phase, before they are scaled up and applied more widely.

Timely communication with HSC and wider stakeholders has also been identified as an early priority as the work takes shape in order to keep everyone appropriately informed through consistent messaging. Successful and full implementation of the advance care planning policy is a significant task that, if we are to do it properly, will require an ongoing, dedicated resource. Most importantly, it will require a societal shift to ensure that advance care planning discussions become the norm rather than something that is to be avoided.

In summary, there is a common agreement that advance care planning is the right thing to do, primarily for the individual but also for the wider healthcare system. Prioritising implementation in that way will reintroduce momentum in this area of work. If the Committee is content, the Department will provide a further written update on the proposals when the project team has completed further initial planning and mapped out a timeline for the work to be progressed.

Ms Diane Walker (Department of Health): Good afternoon and thank you for this opportunity to provide this briefing on behalf of the Palliative Care in Partnership programme. I am the Palliative Care in Partnership programme manager, and I am based in the SPPG. I am also the palliative care transformational lead for Macmillan Cancer Support in Northern Ireland. I am joined by my colleague, Sally Convery, who is a palliative care nurse consultant at the Public Health Agency.

In 2016, the Regulation and Quality Improvement Authority (RQIA) undertook a review of the implementation of the Living Matters, Dying Matters strategy and made a number of recommendations, which included the Department, in partnership with stakeholders, developing a new three-year action plan for adult palliative care. Co-chaired by the Health and Social Care Board — now SPPG — the Public Health Agency, the regional Palliative Care in Partnership programme was established as a single programme to support the continued implementation of the Living Matters, Dying Matters recommendations. The partnership membership reflects the collaborative ethos of good quality palliative and end-of-life care, recognising that palliative care is everyone's business and requires proactive and integrated working across secondary, primary and community care, in partnership with the person, those who are important to them, our hospices and the wider voluntary and community sector.

Our structure consists of an overarching regional programme board, a multidisciplinary clinical engagement group, five palliative care locality boards that are coterminous with the trusts and our Voices4Care service user and carer group, some of whom I know the Committee met with recently. Together, we work to deliver a regional palliative care work plan, based on existing policy and constructed around key priorities that are agreed collaboratively by our membership.

In 2023, the programme undertook a priority resetting exercise to set the programme's direction for the next three years. Following extensive engagement, our partners agreed four key priorities to guide our regional work plan through to 2026. I would like to take a few minutes to highlight those priorities to the Committee.

The programme's first priority is early identification and timely intervention. Around 1% of the population are considered to be in their final year of their life. Research suggests that between 75% and 90% of those people could benefit from a palliative care approach. Many of those people will have been living with long-term non-curative conditions, such as COPD, heart failure, advanced cancer or dementia, for a number of years and will have reached the stage at which their health is naturally deteriorating to the point that death can be expected.

In Northern Ireland, just over 17,000 people die each year. On that basis, it should be possible to identify around 13,000 to 15,000 patients who would benefit from a palliative care approach, yet system-wide identification of people who are likely to be in their final year of life has, historically, been poor. The patients who are identified are often those with advanced cancer, the disease trajectory of which can be more easily anticipated than other conditions. That is demonstrated by local data that shows that around 90% of patients who are admitted to our hospices are cancer patients. As cancer deaths account for fewer than 30% of all deaths in Northern Ireland, that leaves a question mark over the identification of people who die from other conditions. Are they being identified early enough in their disease trajectory, or are they presenting late with such complex symptoms and circumstances that intervention from specialist palliative care is required from outset?

Regardless of condition, early identification of those who are likely to be in their final year of life provides a number of benefits, including the opportunity to have brave and honest conversations, ensure that the district nurse is engaged as the palliative care key worker and plan care in line with the person's wishes whilst taking account of their individual circumstances and what may or may not be possible to achieve in their final months, weeks and days. Failure to adequately identify people who are likely to be in their final year of life reduces our ability to anticipate and respond appropriately to their individual palliative care needs. It also increases the likelihood of crisis situations, attendances at emergency departments (EDs) and avoidable hospital admissions, which come at considerable cost to the system and, more importantly, result in poor experiences for the dying person and those who are important to them.

The programme's second priority is to work with our palliative care locality boards and providers to facilitate improvements in the coordination and quality of local palliative care pathways. Many of our member organisations and professional colleagues have already appeared before the Committee and provided evidence about the variance of services across local geographies. You have heard from previous contributors that the vast majority of palliative care is provided by core health and social care teams; GPs; district nurses; allied health professionals (AHPs); social workers; pharmacists; those who work in hospitals, care homes and the home-care sector; and professionals who work across other long-term conditions and specialist pathways, such as respiratory, cardiology, learning disability and cancer.

You have also heard of the continued pressures across the HSC system, including access to GP services, waiting times for outpatient appointments, the lack of seven-day services and issues with the availability of care packages. None of those issues will be news to you, but they become more pressing and distressing when you are a patient who is facing a terminal diagnosis and has unmet needs or uncontrolled symptoms and limited time.

The recently agreed palliative care pathway provides a road map for those people who have been identified as likely being in their final year of life. However, given the variation in core service provision, access arrangements, referral processes and staff capacity, as with many elements of health and social care, it can look very different depending on where the patient lives or wishes to be cared for. Under that second priority, the programme aims to support the standardisation of guidance, encourage the streamlining of local process and facilitate the scale and spread of innovation and good practice. There are 34 work streams in our work plan under that priority. Whilst I cannot cover them all, I will highlight a few that will, hopefully, demonstrate its ambition.

The programme has facilitated the development and distribution of regional guidance for the management of symptoms for adults in the final days of life, including specific guidance for managing diabetes, heart failure and regional opioid equivalents. My colleague Sally has recently led a project to develop standardised guidance for the management of syringe pumps to ensure that similar practice will be adopted across all care settings and, importantly, that all patients with a syringe pump are provided with a standard patient information leaflet. The programme coordinates the NHS benchmarking national audit for care at the end of life (NACEL). Recommendations from that informed commissioning to ensure that all trusts now have access to out-of-hours medic-to-medic specialist palliative care advice. Through celebrating local innovation and showcasing good practice, the programme has supported the scale and spread of initiatives, such as just-in-case boxes, which were pioneered in the Western Health and Social Care Trust. They have now been adopted across the Southern Health and Social Care Trust and are progressed in the Belfast Health and Social Care Trust and the South Eastern South Eastern Trust.

The third priority of the Palliative Care in Partnership programme is the development of a regional framework to support palliative care education and learning across care settings. Education training and development was a key theme of the Living Matters, Dying Matters strategy. However, over recent years, increased service pressures and competing priorities for training agendas has led to a reduction in palliative care training being prioritised across the system

Emerging results from the NACEL audit show that staff in Northern Ireland have a lower level of competence in delivering palliative and end-of-life care than their counterparts in England and Wales. Upskilling our generalist staff to ensure that they have the skills and confidence to care for increasing numbers of palliative care patients is fundamental to future-proofing delivery in years to come. Equally, it is important to ensure that undergraduate students have palliative care skills and knowledge when entering the workplace and that there are robust postgraduate education pathways to grow and succession-plan for our specialist palliative care workforce.

To drive that forward, a new regional palliative care education and training steering group was established in 2024, with membership drawn from across trusts, hospices, primary care, care home and home care sector providers, and incorporating the HSC Clinical Education Centre and our universities. To date, the steering group has identified 100,000-plus staff working across care settings who require some level of training as they regularly support and care for people with palliative care needs who are approaching the end of their lives. Over 50% of those staff work in our care home and home care sectors and in primary care. The steering group has recently agreed a draft regional education and learning framework across five domains of care and is mapping existing training offerings in an effort to identify opportunities for scale and spread and to spot genuine learning gaps. We are also working with our Voices4Care members and through Compassionate Communities NI to better understand the information needs of patients and those important to them, and we are considering the training needs of caregivers, who often provide considerable hands-on care to their loved ones at the end of life.

The fourth and arguably most ambitious and challenging priority is supporting the public health approach to palliative care. This priority aims to improve the public understanding of palliative care, challenging perceptions that palliative care is applicable only to those who are actively dying or those with cancer, promoting death literacy by opening up discussions about death and dying and advocating the benefits of advance care planning at all stages of life. The public health approach is about involving the community as an equal partner in the provision of palliative and end-of-life care and encouraging the development of compassionate communities who are willing and ready to support local people in practical ways as they approach the end of their lives.

I referenced earlier the 13,000 to 15,000 people each year who, we can anticipate, are likely to be in their last year of life and whom the system should be able to proactively identify and support. However, they are just one part of the complex picture of palliative care. In addition, another 150,000 people across Northern Ireland are estimated to be living with long-term non-curative conditions who, by definition, would also benefit from a palliative care approach. Those people may have many years ahead of them and are unlikely to identify themselves as requiring palliative care. Indeed, many of them, I am sure, would be alarmed to be referred to in that way. However, they are living with conditions of which they will not be cured. Hopefully, their needs in that phase of illness are being catered for by core health and social care services. Ideally, they will also be considering their own advance care planning wishes and the practicalities of those as their condition deteriorates over time. That large cohort of patients, who may not currently be recognised as such by the professionals who care for them or realise it themselves, comprises the last-year-of-life patients of tomorrow. As a system, we need to get better at articulating that fact by initiating honest and practical discussions and empowering people to, when they can, play an active role in their end-of-life care planning. If we do not get ahead of this, it is not inconceivable that unscheduled care and specialist palliative care services in the future will be overwhelmed by reacting to crisis situations and complexity of care that the system should have seen coming.

Hopefully, I have given the Committee an insight into the multifaceted nature of palliative and end-of-life care and the vision and ambition of the palliative care in partnership programme. Palliative care is complex. It is not only about treating physical symptoms but about attending to the emotional, psychological, spiritual and practical needs of the patient and those who are important to them. In that context, it is extremely difficult to consider where business-as-usual healthcare meets palliative care, who should be providing it and when, as that will differ from patient to patient depending on their disease trajectory and specific circumstances. That brings me back to the ethos of our partnership: good palliative and end-of-life care is a collaboration of professionals and services, individuals and communities, all working together to provide holistic support and care for people as they inevitably approach the end of their lives, as all of us will. To achieve that, end-of-life and palliative approaches need to not be considered as a stand-alone service but integrated fully into the system through every long-term condition pathway, as well as being recognised in departmental strategies beyond healthcare.

I pay tribute to my fellow team members Sally and Saika and all our programme members and partner organisations, many of whom you have heard from during this inquiry. Our programme's work would not be possible without their continued support, passion, challenge and professionalism. I am privileged to see at first hand on a daily basis how much they care and are driven to do what is right for the patients and populations whom they serve with the limited resources and competing priorities of health and social care.

Sally and I are happy to answer any questions that you may have about the programme and its work. Thank you.

The Chairperson (Mr McGuigan): Thank you. You outlined the four programme priorities and identified lots of current gaps: poor identification in the system; staff training required; awareness-raising among the general public, etc. How does the Department evaluate the work of the PCiP and the four priorities that you have set out?

Ms Walker: The priorities are very different. Some of them come back to data and metrics. Identification is difficult to measure in the system at the minute, because the data that we have — I believe that you just had a briefing on Encompass — does not speak to itself and, because palliative care is provided across organisations that are not always in HSE, such as hospices etc, it is hard to link datasets. We have been working with Encompass to make sure that, in the future, the palliative care minimum dataset is built into Encompass to enable us to do that. There is a difficulty at the minute in evaluating that at a patient level, but we hope to address that. Coordination is really down to how that looks at local level. Whilst the palliative care pathway is regional, the local processes have to be different to be able to manage that. That is down to patient experience at a local level measured by things like the NACEL audit of hospital care.

We are really trying to get a handle on the third priority, education and training. There are certain metrics that we can take from some of our trusts to show where education is currently provided. Again, some of that is taken from NACEL, and it shows that there has been a considerable drop in mandatory and priority training in end-of-life care over recent years, which is one of the reasons why our palliative care in partnership prioritises that. On supporting the public health approach to palliative care, hopefully, I have demonstrated how large that piece of work is. It is difficult to measure some of that. We use the likes of the iReach survey every year, which measures public opinion of palliative and end-of-life care, and the life and times survey that Queen's runs every couple of years. In short — that was a really long answer — it is difficult to evaluate some of those areas, and we want to get much better. Encompass will, I hope, help us in that.

The Chairperson (Mr McGuigan): Encompass will help.

As part of our inquiry, when people have come to give us evidence, the scoping exercise has been a focus of conversation. Are you involved in the scoping exercise? Because it has come in for some criticism in terms of who has been scoped and the length of time that it has taken.

Ms Walker: My colleagues are coming to the Committee next week. I have certainly been involved in that piece, and so has our palliative care in partnership programme. If it is OK, I will let them answer the specific questions.

The Chairperson (Mr McGuigan): I was going to ask them next week.

Ms Walker: There is absolutely a link there. We are very much involved in that. We see this as a real opportunity, and we want to do it right. Part of that is about making sure that we ask the right questions of the system at this point.

The Chairperson (Mr McGuigan): They will get hard questions next week.

Ms Walker: They will be absolutely ready for those, I hope. I have dodged them.

The Chairperson (Mr McGuigan): Is there a budget assigned to the work? If so, how much is it?

Ms Walker: For palliative care in partnership?

The Chairperson (Mr McGuigan): Yes.

Ms Walker: Unfortunately, there is no budget assigned to palliative care in partnership.

The Chairperson (Mr McGuigan): That goes back to Michael's point: your work is sometimes not prioritised by the Department when it should be.

Ms Walker: As I say, there is a small programme team. There is myself, a project support manager, and Sally, who provides clinical experience. There is no annual budget. When we have specific things, we look for slippage, but there is no funding provided against palliative care in partnership.

The Chairperson (Mr McGuigan): OK. Almost to a man and woman, everybody who has come before us has said that we need a clinical lead. Would a clinical lead supersede or complement the role of the PCiP?

Ms Sally Convery (Public Health Agency): It would complement it. I would certainly welcome a clinical lead. From a four countries perspective, Scotland, England and Wales have one, as does the Republic of Ireland. Even locally, our cancer networks and frailty networks, for example, have a clinical lead. If we are to commit to transforming palliative care, I would welcome the leadership, advice and guidance of a clinical lead. That comes with a cost — it needs to be resourced — but it is one of the things that I would like. Obviously, I am here as a clinician. I walk a tight line sometimes, and Diane and I may not always agree, because we look at things through different lenses. I come at things from the clinical perspective, and Diane comes at them from a policy perspective. Both are valid and are required in the room, and Diane and I work well together. Usually, when there is anything that we do not agree on, we eventually work it out. We have a process of working through those things. It is about me respecting Diane's view and Diane respecting my view.

Ms Walker: In the palliative care in partnership group, we have the clinical engagement group, which came from a Regulation and Quality Improvement Authority (RQIA) recommendation for a managed clinical network. At the time that it was set up, there were loud voices about the multidisciplinary approach to palliative care. That is where the clinical engagement group that Sally chairs sits within our programme. It is really useful in progressing some of that guidance and those work streams. Again, however, we are in a different position now, and I would welcome any support — you can see how big the agenda is — in this space, as I think we all would.

The Chairperson (Mr McGuigan): Again, everybody who has given evidence on this has talked about public awareness: the lack of conversations and the lack of knowledge in and information for the general public. How can the PHA improve public education?

Ms Convery: We do work and provide funding. We are very conscious of the need to normalise those conversations about dying, death and bereavement. We secured three years' funding for Compassionate Communities Northern Ireland. You have heard from Sharon Williams, Fiona Gilmour and Cruse Bereavement Support about the work that they are progressing on death-positive libraries and making sure that there is literature out there for the public. They also work in schools and with councils, but we are aware that that project is small. Alongside that, we provide funding to the All-Ireland Institute of Hospice and Palliative Care to support public messaging. We do quite a bit of that during Dying Matters Week and Palliative Care Week. Could we do more? We absolutely could, but we even funded and supported the Compassionate Communities position paper that was launched by the All-Ireland Institute. I have been present at the death-positive library launches as well, and we are looking creatively at how we can progress.

I look at things through a population lens: how do we reach members of the public who cannot or do not want to read? Social media is a vehicle for that. If you are on Facebook, you will see that Sharon Williams regularly puts messages there. The Northern Health and Social Care Trust is an example of really good practice in the public health approach: it has embedded that in the trust. Fiona Gilmour works closely with Sharon Williams, and Diane is working closely with Sharon on how to spread the reach that Sharon has to the rest of Northern Ireland and beyond. We are part of a Compassionate Communities community of practice with Southern Ireland. I am conscious of our border areas and the need to give the same message across the island of Ireland, because there is a lot of mixed messaging. We all have a role to play. People sometimes see Compassionate Communities as just being about health, but it is about more than that: it goes right across programmes of care, and we have to embed it in our schools, councils and community groups. The other part is that we do not lead on that. We empower our community, and, in order to do that, we need to know where the weaknesses and strengths are in particular communities and what we need to do to support those communities. Some of the intelligence in the Public Health Agency will support us to do that going forward.

Mr Donnelly: Thank you very much for that. It reinforces a lot of the stuff that we have heard before but also fills in some of the gaps. I was going to ask the question that the Chair asked about the clinical lead — great minds. I will ask about your clinical engagement group. Has that delivered anything in particular? Have we seen any practical changes to palliative care because of the clinical engagement group?

Ms Convery: I chair the clinical engagement group. I have only been in post for the past two years. One of the key pieces of work that I have led on over the past two years is the syringe pump guidance document for adults. Alongside that, I have led on paediatrics. Whilst I am not paediatric-trained, we were approached by paediatrics and asked if they could join our group, so we brought them in. That document grew legs as we worked through it. If you are a clinician, no matter where you are in Northern Ireland, you can lift the same document and have the same guidance on prescribing and administration. Education and training have been standardised in that document, as have audit and governance. There are practical issues to consider, because there is no point having a glossy document if it is not usable. The document has 10 appendices. I assigned 12 months to do the first part of that project, but we ended up —. We have a patient and carer information leaflet so that, no matter where they are in Northern Ireland, patients and carers will receive the same information. That works across multiple agencies and across trust boundaries. We now have a quick reference guide so that, if you are under pressure on a ward or in a patient's home, you can lift that quick reference guide and quickly look through it and get clear guidance on how to use that syringe pump.

There is a standard operating process in the document, because there was an issue around de-prescribing and discontinuing prescription charts in a patient's home. We have put a standard operating procedure in there to allow the nurse to have a conversation on the telephone and stop that prescription. We have a competency document in it so that, no matter where you are in Northern Ireland, whether you work in a hospice or a hospital, you are reaching the same level of competency in using a syringe pump. That is one of the things that we have led on.

There are other things. There was an issue with prescribing. Our hospice colleagues are unable to access cipher codes and prescription pads in the community, and that was brought to our attention, especially in rural areas, where they were struggling with the GP. The person would maybe see the patient in their home, but they did not actually have the prescription pad there and there was no process for them to use their prescribing qualification. That patient could be in Omagh, and the doctor who is on duty at the time could be in Altnagelvin. There is travelling distance, as you can imagine, between the decision to change that prescription and that prescription being written. We looked at that and worked with the Foyle Hospice, our primary care partners, Andrea Linton from the New Models of Prescribing review and SPPG. We have chaired a steering group over the last year and put a process in place. That was not easy, because, once you start crossing boundaries between trusts and different care settings, that communication process —. We do not want there to be a situation where somebody is prescribing a drug and there is a potential for duplication with a GP also prescribing that drug or not knowing that the drug has been prescribed. There was a bit of toing and froing to get the communication processes aligned. We managed to do that, however, and we had a celebration event in Foyle Hospice last week at which we presented the findings. That has shown us that we have significantly reduced the time between the decision to prescribe and the patient receiving the medication in their home. It was a small-scale study, but our next steps and our next meeting will be to look at how to scale and spread that across Northern Ireland in order to have a bigger impact. Those are the types of project that I have led on since coming into post. There are other things, but I will not go into the detail now.

Mr Donnelly: Those are fantastic and great to hear. We hear about those regional variations again and again. The fact that they are being picked up and addressed and, effectively, being ironed out, is hugely beneficial.

Ms Convery: I cannot overstate the amount of time and energy that it takes to get everybody to come to an agreement. When others have given evidence, they have talked about a regional approach and a local approach. The regional approach is things like the syringe pump guidance. For the local approach, we will move hospice by hospice to make that a reality, scale it up and spread it. You need to have both a regional and a local approach in order to get over some of those things. I have a mindset whereby I look at a problem, but also at the solution. I believe that, if you remain solution-focused, there is a way of getting around even the most difficult things. I have worked as a clinician in palliative care for 20 years, so I know most of the teams and the intricacies that make cross-boundary working difficult. I can usually find ways around it.

Mr Donnelly: Absolutely. I commend you on that work. That is fantastic, and your celebration is well deserved. Reducing the time that it takes for a patient to receive a drug is an absolutely fantastic thing to do.

I have one final question, if the Chair permits. You said that there has been a drop in mandatory training in palliative care, Diane. Why is that?

Ms Walker: This is anecdotal, but, as I said in my opening remarks, it is most likely to do with pressures on the system, priorities and people being released for training. We saw that after COVID in particular. Sally and I recently met NHS benchmarking. This year's NACEL results for Northern Ireland are due out in October. We had an initial meeting about what they look like, and we do not have the detail, but it seems that the figure for that has dropped again. I think, however, that that is just because of pressures on the system and other priorities going onto training.

I have worked in the palliative care space for 12 years. We have run a lot of task and finish groups, and, as Sally said, because there are so many people who need to be around the table and involved, none of these things are easy. The education and learning piece is, however, probably the most collaborative piece that we have ever run. We have brought the home care sector into that. It is crying out for that. People working in that sector see a lot of the patients daily, looking after them in their homes. They want to have more learning on that. Our universities are engaged, and we have clinical education. Learning managers based in primary care practice email me to say that they want to be involved. Our problem is facilitating all that. It is certainly a priority for us to see what we can do in that space.

Ms Convery: I will add to that from a clinical perspective. We need to move to making that training mandatory in Northern Ireland. Basic life support is mandatory, yet, as a clinician, you may never need to use your CPR training. It is seldom, however, that someone who works in clinical practice would not be involved, in some shape or fashion, with somebody who is dying. One thing that we hope may happen as an outcome of the work that Diane is doing, which is a huge piece of work, is mandatory training for all staff. That is our best move to make sure that everybody gets that training on a regular basis.

Mrs Dillon: I apologise that I had to step out for a minute. Can we get some feedback on what exactly will be included in that piece of work when it is available? That would be really good.

The issue of DNR has come up in nearly every presentation that we have had from every level, including from clinicians, the Ambulance Service, community providers as in GPs, hospices and so on. I am quite sure that you are well aware of the challenges. Somebody in a hospital setting signs a DNR instruction and has that put in place, and, when they get into an ambulance to go home, it is to be put in place again, and, when they get home, it has to be put in place again. That is so traumatic for the individual and for the families. To me, it seems like something that could be fixed, and I want to understand whether you think that it could be. I am looking at you, Sally, because you are solution-focused, and I want you to get this across the line for us.

Ms Convery: I absolutely do think that it is fixable. I think that we need to realise that the health service is a complex environment, and, no matter what we do, we will always have occasions when we just do not get it right. We are moving with the advance care planning policy, and the recommended summary plan for emergency care and treatment (ReSPECT) form and process within that will, hopefully, address some of those issues. We would love to be moving quicker with that, but there is real complexity with making a change as big as that right across all care settings. It will be a societal shift. There will have to be some sort of public messaging done around that. We will also have to create an environment where the workforce is skilled and ready in all care settings to have those conversations with the patients and their families. Some of those conversations are reasonably simple, but some of them are quite complex. We do not want to add further distress to our patients and relatives. We want to do it in a pragmatic way. We do not want a disjointed approach to that. That has been part of the reason why it has been delayed a little bit. Encompass was a big system to put into our health service over the past year. Would it be right to launch into changing our do-not-attempt-resuscitation (DNAR) forms over to the ReSPECT form? It is maybe not the safest time to do it. I come from a local organisation, having worked in the Northern Trust and the Belfast Trust before. When you look at it at a trust level, you think, "Goodness, this is easy". Now that I am looking at it through a lens of a population, I do not want to put anybody through any stress, but I am fully supportive of getting this moving if we can. Some of the work in the big discussion will allow us to test some of that and also to work up some of the education and training. It is a big piece of work, and it will probably take a bit of resource and time to make it a reality. I am certainly committed, and we are all committed. It is just about moving it forward.

Mr O'Neill: It is. The ReSPECT form is part of the advanced care planning policy. It is our intention to do that, and we now have a vehicle, through the winter preparedness work streams, to start intensively working on that. That is the plan, but, as Sally mentioned, there are complexities around it as well.

Mrs Dillon: I do understand that. At least if we know that the work is happening, we can potentially get it moved on. It might not be suitable for everybody, so I understand that this may have to be done on a phased approach. I understand that, but I probably want to see something moving on it. On Encompass, officials said that they hoped that, at some point, ReSPECT will be able to be incorporated into that, but not right now, and rightly so. I really appreciate that. Thank you very much.

The Chairperson (Mr McGuigan): Sally, Michael and Diane, thank you very much.