Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): From Marie Curie, I welcome Paula Heneghan, associate director of strategic partnerships and services; Dr Jennifer Doherty, medical director; and Joan McEwan, head of policy and public affairs. You are all very welcome. We have 45 minutes for today's session, so I will go straight to you for any introductory remarks before we open it up for members' questions.

Ms Joan McEwan (Marie Curie): Thanks very much, Chair. I will start by thanking the Committee for the invitation to give evidence today. Marie Curie wholeheartedly welcomes the inquiry and the Committee's interest in access to palliative care. Our organisation is a leader in the provision of care and support to people who are affected by terminal illnesses in Northern Ireland, England, Scotland and Wales. That includes all terminal illnesses, not just cancer. Although the majority of people whom we care for are cancer patients, we also care for a growing number of patients with non-cancer diseases. Outside the NHS, we are the largest funder of palliative care research in the UK.

In Northern Ireland, we provide a range of services through our hospice in Belfast and the hospice at home community nursing service across all trusts. We also provide a range of other services in the form of bereavement support, companionship services and an information and support line. Each year, we care for over 7,300 people in Northern Ireland who are living with a terminal illness, as well as their carers and loved ones, through our hospice and community nursing services. All our services provide critical expert clinical and holistic care to the patient and much-needed respite support for the carer. Our community services reach into people's homes and support them to spend their precious last months, days and hours where they most want to be, which is surrounded by their loved ones.

The Committee will have already received our written submission, which highlights 12 recommendations that we believe would go a long way to supporting more comprehensive and equal access to care across Northern Ireland. However, for the purposes of today's session, we will focus on the key recommendations that we see as the most critical.

The first point that I will address is the state of palliative care services in Northern Ireland. We know that too many people miss out on vital care here and that patients fall between the cracks of our fragmented system. Some of the key areas in service provision that could help to address that include increased out-of-hours and community care provision. The availability of out-of-hours care is distinctly lower than the availability of in-hours provision, which means that the only option that is available to patients and carers who are in crisis is to call a GP out-of-hours service or the Northern Ireland Ambulance Service (NIAS) and be conveyed to ED. Many ED attendances by palliative patients are often unnecessary and could be avoided if appropriate and adequate care were in place in the community setting.

ED is a highly inappropriate place for vulnerable patients. It causes significant additional stress to them and their loved ones and puts additional pressure on an already pressurised acute system. In order to provide a continuum of care, more care in the community is needed to prevent palliative patients attending ED unnecessarily and support them at home, which is where they most want to be and where it is most cost-effective. That should include appropriate levels of generalist palliative care, domiciliary care and the availability of care home and step-down beds to facilitate improved discharge from hospital, as well as improved integration with ambulance services, GP out-of-hours services and district nursing.

Patients and carers, as well as professionals, find our fragmented system difficult to navigate. The wide variety of diseases, prognoses and stages of the patient journey means that service provision also needs a wide, multidisciplinary team base, often across different settings and sectors. Greater integration between existing palliative care providers and primary, acute and ambulatory care is needed. Patients and carers also need to be more aware of palliative care and its benefits, and they need help to navigate the complex system, which also varies from trust to trust.

The second area that I would like to highlight is the policy framework in Northern Ireland. There has been a policy vacuum here in palliative care for many years. We have needed a new palliative and end-of-life care strategy since the last one expired in 2015, although we know that there are inadequate resources to support it. However, there have been positive developments in recent weeks, with the inclusion of death, dying and bereavement in the new Programme for Government (PFG), which we very much welcome. The aspirations in the programme will still need a framework to realise them, and, in the absence of a strategy, with no mention of palliative care in the Health and Social Care (HSC) three-year plan, a specific palliative care policy is needed to address the unmet needs of people who we know are missing out on essential care. Such a policy needs to address the critical and urgent needs of patients right now and the growth and increasing complexity of needs of palliative patients in the future.

The Committee will be well aware, from numerous sources, of the predicted growth in the need for palliative care for our ageing population in Northern Ireland, which is the fastest-growing in the UK. We welcome the Department of Health's recent commitment to undertake a baseline scoping exercise this year to understand the current status of palliative care and identify gaps and potential opportunities for improvement. That is a vital first step in visibility in progress, and that vital piece of work will be welcomed. To augment that evidence base, we would also welcome a comprehensive palliative care needs assessment and an end-of-life care survey that collates the experience of people using palliative care and end-of-life services.

The third point is on central governance and oversight structures. The Department of Health's palliative care in partnership team is highly skilled but under-resourced to deliver its existing strategic plan, and it will need additional resource to undertake the recently announced baselining exercise. Further resource would be needed in the Department to draft and implement the comprehensive policy framework that was described, including the palliative care policy, palliative care needs assessment and end-of-life care survey. Furthermore, unlike other jurisdictions across these islands, there is no clinical palliative care lead in Northern Ireland that is responsible for palliative care alone. The introduction of that senior role would increase awareness and profile the importance of palliative care and would also provide additional governance, oversight and strategic direction to palliative care at departmental level.

The final point is the importance of recognising that palliative care is a core service and that funding is needed to support it. The point has been well made before that the palliative care that the independent sector provides is not recognised in Northern Ireland as a core service but is seen as an ancillary service, yet that is not the case for the palliative care that the trusts provide. The independent hospice sector provides a critical and core service that needs to be recognised as such. The sector makes a significant contribution to palliative care here. It provides care to thousands of people each year and has the greatest population reach across all UK nations. It is estimated that 64% of people received hospice care in their last year of life in Northern Ireland, compared with a UK average of 46%.

That view of the hospice sector and the care that it provides gives rise to two significant issues. First, the sector is not seen by the statutory sector as an equal partner in the delivery of care. It should be included in relevant service planning and policy development, the roll-out of essential systems and infrastructures and integrated data sharing to enable it to provide efficient care to patients when they need it. The sector is also a valuable source of expertise, evidence of best practice and service innovation, yet it struggles to gain a seat at the table when it comes to health transformation. Many examples of agile and innovative practice exist across the sector that could be rolled out more widely, but, due to the nature of our commissioning and funding structures, innovation discussions are curtailed at operational level rather than being held at strategic level.

Workforce alignment is also a critical area where the sector needs to be able to recruit on a level playing field with the statutory sector, which means being part of early discussions on the pay terms and conditions of NHS staff, because that has implications for the independent hospice sector's being able to match fund those settlements.

The second and final issue is funding. The current funding model for hospice providers of palliative care is unsustainable. The Department of Health funding policy for the independent hospice sector was set 20 years ago, with an agreement that the statutory sector would cover 50% of service delivery costs. However, in reality, with ever-increasing overhead and ad hoc costs, that more closely equates to around 40% of statutory funding. The remaining funding is sourced from fundraising, which is highly unpredictable, leads to short-termism and does not support strategic service planning, which is vital for transformation and innovation. That reliance on charitable donations would be an unthinkable proposition for any other critical healthcare service. We would like to see the current 50% funding policy increased and consideration given to 100% funding of operational costs of core palliative care services.

Before closing, I will briefly highlight some of the other key areas that we mentioned in our written response that need to be addressed to support better quality of life for people. Those include the critical role that is played by informal carers, who need respite and more support to continue to care for their loved ones and who provide millions of pounds in savings to the health and social care system, and the inequality of access and unique barriers to care that some groups face. Those groups include, to name a few, non-cancer patients; people from racialised communities; people who are aged over 65; the LGBTQIA+ community; rural and deprived communities; homeless communities; and people with learning disabilities. Finally, whilst palliative care is critical for the well-being of the patient in care, the wider social determinants of health also have a large part to play in their quality of life. It is vital that we recognise that, shockingly, 2,500 people in Northern Ireland die in poverty each year, and we must do everything that we can to address that. It is, therefore, critical that all Departments recognise the role that they have to play in supporting dying and bereaved people across Northern Ireland.

The Chairperson (Mr McGuigan): Thank you, Joan. I put on record my thanks for the work that you and your staff in Marie Curie do and for the service that you provide. It is important to put thanks for that invaluable service on the record. I thank you all for the contribution that you have made to our inquiry so far through your response to the consultation and your facilitating a visit for Committee members, as well as coming here today. That has been very worthwhile.

You touched on a lot of stuff, including policy, workforce and resource. You finished by talking about funding. Can I allow you a wee bit of time to explain the impact that 50% funding and single-year budgets are having on the service that you provide?

Ms McEwan: I will hand over to Paula, because she is the expert in that area.

Ms Paula Heneghan (Marie Curie): It takes £13·3 million to deliver services in the Northern Ireland operation of Marie Curie. From that, we get commissioning of £5·7 million, which leaves a charitable contribution of £7·6 million to be made. That contribution is variable from year to year. Some of our contracts are set up in recurrent and non-recurrent funding, and that can be very difficult to manage as well. We are reaching more people despite that, but we are running at a deficit, which is having a significant impact on choice in Northern Ireland.

The Chairperson (Mr McGuigan): Last week, the All Ireland Institute of Hospice and Palliative Care gave evidence to us, and, yesterday, we attended St Francis Hospice. In both instances, their representatives talked about the importance of policy and said that everything kind of follows once we get a policy. You certainly highlighted that. You talked about the fragmentation of the service and care and about public knowledge. We have heard a few times about the need for a single point of contact. Can you speak to referral pathways and how we can improve that? Do you think that a single point of contact would be particularly beneficial?

Ms McEwan: We have been working and collaborating with other stakeholders across NI, and a model has been recently announced. Jennifer can talk to that, as she has been deeply involved in it.

Dr Jennifer Doherty (Marie Curie): We recognise the difficulty across the system for patients who are trying to access the care and support that they need. Palliative care patients often need things immediately; they do not have the luxury of time. We talk about having one chance to get it right and the impact that it can have on a patient and their family if things go wrong or if they do not get the right care in the right place. We also know that patients will be cared for in their home place, wherever that might be — it could be a care home or their own home. They will go into hospital, or they might be in a hospice. Therefore, there is a lot of transitioning across the healthcare continuum, if you like, but there is a lot of fragmentation in that journey for patients. For a palliative care patient to get the right care and support, there is a reliance on two things. First, their needs must be identified so that the person who is seeing them from a clinical perspective understands their palliative care needs. Secondly, it is critical that the patient understands where to access that care and support and how to get it. Our system can be very, very difficult to break in to. Crises can sometimes arise. You have heard about our demographics and the context that exists in Northern Ireland. People are living with multiple morbidities, there is complexity with their care and things can often change or become more urgent out of hours. We need to really look at the in-hours fragmentation and the out-of-hours fragmentation of services. I work in a hospital palliative care team and in Marie Curie, so I see the patients who are coming into our hospitals and the hospice. From that clinical perspective, I know that we have been working closely with partners, which you will have heard about already. The way in which to try to address some of the fragmentation is by building together and working smarter, because not a lot of extra resource is coming to us.

From the perspective of being at the clinical coalface, we see what is going wrong and how we might better position ourselves to fix it. Through the Belfast community hub, we have been partnering with Northern Ireland Hospice and Belfast Health and Social Care Trust professionals to work together to build a one-team approach that has a single point of access from which we will have a much more responsive service for patients with emerging urgent need and real-time oversight of the capacity in the system at any given time. That is something that I think we struggle with. The other big thing to say about that, and Joan touched on it in her introduction, is that it is also about integration. It is about having integration from the voluntary sector across the system and having the knowledge and expertise to help find some solutions for the problems that we face.

Mr Donnelly: That was a fantastic briefing. Thank you very much for the work that you do. The visits that we have been on to see you have been informative and educational. One of the first things that you mentioned, Joan, was the impact of variations between trusts. How does that impact the patients?

Ms McEwan: Quite severely, because variations do not help with awareness. There is a taboo about talking about palliative care, because it is associated with the immediate end of life. That is a barrier in and of itself. If you compare palliative care services with any other service, you will see that there is better awareness of other services. Take maternity services, for example. There is a good awareness of what care is there, what you should get and all the wider support that you need. If there is an inconsistent model, there is no consistency in what you are entitled to and what you should be getting. If there is great variation, people are more likely to fall between those cracks. There is a double barrier that is a double whammy in that. Jennifer talked about integration. There are great pockets of support for patients. Do not get me wrong; when people get the care here, it is of a really high quality. The problem is that it goes across different sectors and different providers and varies from trust to trust. The continuum of care, which Jennifer talked about and Paula will talk about, should be there. It is in other services but not in palliative care, so, all of a sudden, people will fall off a cliff edge and will not know where to go. They need signposting, and they need help in navigating the system. That is one of the problems.

Ms Heneghan: I will add to that. We have services right across Northern Ireland, so we understand what the delivery is like. Our rapid response service provides a nurse who is able to respond rapidly to patients in their own home. In three of the five trusts, we work with the GP out-of-hours service, so we are part of their infrastructure. The calls that come into the GP out-of-hours service are triaged and sent to the Marie Curie nurses, who respond to the urgent unanticipated need of patients. That is particularly beneficial because of the low numbers of GPs and the ability of those nurses to do home visits. All our visits are at home. That happens in three of the five trusts. One of those trusts is operating on non-recurrent funding at the moment, so that is likely to drop down. When I talk about "a service", I am talking about one nurse in the out-of-hours period. If that nurse is removed, there will be no additional nursing support for patients at night.

Mr Donnelly: The service in two of the trusts is funded recurrently, but, in one of the trusts, the funding is non-recurrent, so, next year, that service may fall away.

Ms Heneghan: The third trust has recurrent funding for one of the nurses and non-recurrent funding for the other. That has been moving from month to month to month for the past few years. That makes managing the workforce particularly difficult, and high levels of risk are associated with it. I highlight the fact that one service delivers urgent care to 750 patients a year who would otherwise be conveyed to hospital or remain at home with no dignity.

Ms McEwan: I will add a point to that. The out-of-hours rapid response service is really critical in how it supports people through those out-of-hours periods when their need is most acute. It goes back to the structure and how we are commissioned. We are commissioned by each trust, and that varies. It also goes back to your original question about variety. We can provide what we are commissioned to provide, but that is down to each trust, and they are not the same.

Ms Heneghan: The budgets were set many years ago and have been uplifted ad hoc, so, at times, there have been inflationary uplifts and, at other times, there has been nothing. That has created a gap between budgets across Northern Ireland.

The Chairperson (Mr McGuigan): We will move on. Danny, I will come back to you if there is time.

Mrs Dodds: Thank you very much. It is really helpful. I will go back to the last point. You highlighted the fact that there is variation between trusts in the level of services that we have for people who are in need of palliative or urgent palliative care. You talked about the different ways in which it is done in different sectors and different trusts. That all points to a lack of coherence — am I right? — in how we deliver palliative care. I make no apology for saying this, but the legal duty to provide a core palliative care service as part of our health service is massively important. I was looking at my notes from last week, and I saw that the Republic of Ireland changed its duty so that palliative care would become a core service. I understand that, in England, palliative care is also a core service. What impact would such a legal change have in Northern Ireland?

Ms McEwan: It is important to differentiate between a right to palliative care and the duty to commission palliative care. We have seen what has happened down South and across the water. In England, there is a duty to commission palliative care. It could be argued that it is commissioned here, but we are saying that it is fragmented and that we need a core service to address all the gaps in palliative care so that everybody gets the care that they need when they need it, which is critical. A right to palliative care is far more comprehensive than a legal duty to commission palliative care, because it means that the person should get the care that they need when they need it. It could be argued that it is commissioned at the minute, but we are saying that there is not enough of it, it is not comprehensive and it is not a core service.

A right to palliative care is fantastic, but it absolutely needs to be underpinned by the policy framework to deliver it. You could go through a lot of money and a lot of time putting that in place, but you absolutely need the levers underneath it and the funding to support it as a core service for that to be delivered.

Mrs Dodds: That is very helpful. In this inquiry, we have an opportunity to make recommendations that take cognisance of what has happened in other jurisdictions and to do the best that we can for patients who are in need of palliative care. That is really important.

Knowledge and information are key for everybody. While we are working on all the big stuff, what short-term measures can be put in place? A few weeks ago in my constituency office, I dealt with someone who had a practical issue, but it was very sad that they had to ring my office and nobody could tell them what they needed to know. We managed to sort it out and it was fine, but what can we do in the meantime to make sure that patients and their families know what services are out there? It seems to me that, sometimes, it is a bit hit and miss. Am I getting that wrong?

Ms McEwan: No, it absolutely is hit and miss. It goes back to a lack of awareness. There are also really low death literacy levels and an understanding that the benefits of palliative care go wider than end of life. The care goes beyond end of life and supports the carers who are around the patient. There are also a lot of benefits upstream in alleviating symptom burden. There is an awareness issue that could be helped through the implementation of the advanced care planning policy, which is a brilliant piece of work, but it needs to be fully implemented. That will help to open up those conversations on people's last wishes.

There are definitely issues with the independent sector being included as part of the system. It goes back to the point that we talked about as being seen as a provider of a core service. We need to be connected and bolted into the system and be included when there are transformations and system innovations. We are part of the Encompass roll-out, but we are further down the line. It is things like that. If we were included in those high-level strategic conversations early doors, rather than being further down the line in getting connectivity, that would help to alleviate a lot of things.

There is a huge amount of expertise in the system that could be leveraged, and we can bring lots of solutions. We very much welcome being part of that transformation process, but it can be difficult at times to get a foot in the door.

Mrs Dodds: Finally, one thing that surprised me was that, when we first started to talk about the inquiry and officials from the Department came to brief us, they announced that they were doing a scoping exercise to find out what was out there in palliative care. Should the Department not know that? Is that not part of what they should be doing and know about in that commissioning process?

Ms McEwan: Yes. The baselining exercise is a vital piece of work that needs to be done. That information should be there. It is a first, important step to any policy to baseline and find out what you actually have. It also needs to be augmented with a palliative care needs assessment. You need to have that not only because we need to know what services are there — that is OK because that is looking at what services are being delivered, how they need to be improved, where the gaps are and how to plug them — but because you need to know what people need and take into account the demographic needs. We know that there is critical need right now, and if we look at our demographics, we can see the need will grow exponentially — it is worse here than anywhere else — so we need to address those palliative care needs.

We have also put in our briefing paper that we would welcome an end-of-life-care survey so that we can survey people who receive those services. That will enable us to double-check how we are doing and whether we are meeting people's needs, because it will give us the qualitative data as well.

Ms Heneghan: It is important that the focus be not just on specialist palliative care but wider than that, focusing also on providing generalist palliative care and whatever support is required to keep people at home. That is where we are heading. We want to keep people at home, but we need the resources in order to do that confidently.

Mr Robinson: I will follow on from what Diane asked. Do you believe that palliative care patients are being failed as a result of differences in jurisdictions, particularly between Ireland and the rest of the UK?

Ms McEwan: I do. Jennifer and Paula are the experts in providing that care, and they hear numerous stories. I will hand over to them, because they have so much contact with the patients. They can explain the situation better than I ever could.

Dr Doherty: When you have the opportunity to deliver care as it should be, and when you can meet patients, assess their needs and provide professional, clinical care and support for them and their family, that is a good thing. That is why I do my job. All too often, we find that people do not get that care and support in a timely fashion. They may have symptoms that have not been helped or improved. They may have been rushed to an ED and find themselves in a hospital bed that they really do not want to be in. They may want to get home, because quality of life for them is being back in their home place with their family, but they cannot be because there is no care package in place. There are so many different parts to it. It is a huge issue. Many different providers and professionals do so much good work across Northern Ireland. There is also a really conscientious, connected workforce that wants to deliver that care well. The challenge for us arises when we see that things may not have gone as well as they should have gone.

The other point to highlight is that, when things do not go well, that has an impact on the patient, first and foremost, and on their family members in the future. People have to deal with a prolonged bereavement as a result.

We have heard Committee members talk about the value and importance of having a right to palliative care. We really believe in that, because it does make a huge difference. We have seen how that difference can be made, but unless there is that support through governance infrastructure such as a policy framework, and unless there is an imperative to make that change and to have the accountability for it to be delivered on, we will struggle. We are already identifying unmet need, so how are we going to position ourselves to sustain what we currently have, let alone what we need for the future demographic? Something therefore has to change.

Ms Heneghan: We are not able to meet some of the referrals that we receive into our service. It comes down purely to prioritising care. Urgent patients will get the care. People whose symptoms are changing do not necessarily get the care that they need, but we try our very best. When we talk about stable patients, we could be talking about patients in the last week or two weeks of their life who are unable to get that care.

Mr Robinson: In order for us to develop and mould the inquiry, can you give us any other, further examples of good practice across the region that could be scaled up in order to improve patient experiences, increase the service provided and produce efficiencies?

Ms Heneghan: If we were to work more closely with our emergency departments on our ability to respond, first to those patients who come in, that would be good. We do not necessarily want the situation for patients to get as far as that, however. One of the things we have already been working on with the Northern Ireland Ambulance Service concerns referral pathways. If an ambulance were called for a patient, it would go, but now the patient can phone, and a Marie Curie nurse can go instead, thus avoiding a hospital conveyance. That is one very simple thing.

Ms McEwan: There are lots of examples in our written response. Look at what is happening in EDs. The Royal College of Nursing brought out its 'On the frontline of the UK's corridor care crisis' report, which was harrowing. Many people die in corridors in really dreadful scenarios. We must look at what can be done in those circumstances. We know that we cannot flick a switch and sort out all the issues immediately. That is why we talk about having a policy that addresses the immediate needs and plans to meet the future needs as well. We really need to look at the urgent, critical areas that need to be addressed quickly. For example, there is the REACT model in Bradford, where a team assesses palliative patients in EDs, triages them and, where appropriate, helps get them supported. The model wraps care around them for 72 hours and stabilises them at home. There are therefore models that we can pull together from across these islands and see how we can replicate them here.

We know where the issues are. The issues that are being seen are not unique to Northern Ireland. We know that there are solutions out there, and we are keen to be part of the solution, along with the independent sector. We have the expertise here. We just need to harness all the assets that we have and galvanise them with more resource and leadership from the Department.

Dr Doherty: We mentioned the policy drivers: the advance care planning policy and the ReSPECT implementation/operational aspect of that. A public health approach that increases awareness gives people the opportunity to inform their choices and to explain their wishes and preferences for their care. To be clear, in order to progress what is already there, we just need extra support for them to be implemented.

Ms Heneghan: One good thing that is happening is nurse prescribing. We were calling for that for a number of years, and, finally, a project in the Western Trust is facilitating nurse prescribing. The barrier to that was the voluntary sector's ability to access cipher codes and prescription pads. That seems simple, but it was a huge barrier for patients and caused delays in prescribing. An evaluation of that project will be completed in June, but we hope to see nurse prescribing rolled out across Northern Ireland.

Ms Flynn: Your briefing paper was helpful, and the Committee will try to incorporate as much of it as we can into the inquiry's final report and recommendations.

Paula, you said that there is a short-term need when it comes to how you respond to clients and patients who, at the moment, are missing out on the care that they need because you do not have the capacity. There are short-term issues, and then there is the longer-term, more strategic stuff that you need to deal with, particularly given the huge rise in the number of people who will require such support over the next number of years.

Diane asked what you think can practically be delivered in the short term. You mentioned models of best practice that we can look at implementing here. Is there, however, anything that we can implement instantaneously, such as the model for rapid response teams? Are there models that are already working here but are not available across all the trusts? I cited rapid response teams as one example. Even in the short term, could we get such models rolled out across every area so that everyone might have access to them? Could you also try to increase the level of palliative care that is provided in the community? Paula said that this goes wider than the more urgent cases, which involve dealing with people in their dying days. Even if it is to increase domiciliary care packages in hospitals or the number of step-down beds, is there another way? Are there practical things that could be done that would help you as a service to respond to the need that is there at the minute?

You all spoke about the problems with integration. You said that how it may not be working as it should, and that may be why you are feeling the pressure in the system when trying to provide healthcare. What have been the problems with integration? There may be multiple answers, but I am trying to tease out for our inquiry report real solutions for how the system could be integrated. Is it a problem at trust level? We know that the trusts operate differently. Is it more a problem at a leadership level in the Department of Health? You mentioned simple things such as communication and co-production happening when something is being designed or new models are being rolled out.

Those are my questions.

Dr Doherty: I will answer the question on the integration piece, because we spoke a little bit about it earlier. The situation with integration for those of us in the voluntary sector is that we are outside the main system. A small example of that — perhaps not so small — is the regional roll-out of Encompass. We are lagging behind, but, if you consider Encompass to be a core service, it does not make sense for it not to be seamless. From that perspective, the voluntary sector is just that bit outside the main system. How do we convey to everyone that, if we were to have a much more connected and integrated conversation about how we plan for services, the situation would be so much better?

For patients, first and foremost, having that experience of an integrated continuum of care and having communication across the system — how we all communicate and interact with one another — are so important. I gave the Committee an example of the advance care planning policy and the ReSPECT process. The conversations that are so important to patients and families have to be understood and communicated across the system so that they are not having to have the same conversations repeatedly about their wishes and preferences. The advance care planning policy and ReSPECT are things that we know are there. They are almost ready to be put into our system, but they have been held back because of capacity, resource and other difficulties that have arisen at the end.

Ms Flynn: What I am trying to tease out, Jennifer, is whether that is more at trust or Department level. I say that not to try to pinpoint where the blockages are. Rather, I am trying to think of a way in which we can try to streamline them and get them out.

Dr Doherty: I do not say that I have all the answers either. What we are saying is that we need to have that governance, that overarching policy and that leadership in the Department or wherever it might be, but we also need to have that clinical reference point so that there is intelligence gathering from across the system. Clinicians' expertise that can inform such discussions and inform the process is already there. Moreover, we need to listen to our patients. Diane gave an example, and it is important that such stories do not get lost in the big conversation, because they are really important.

How do we effect meaningful change for patients in Northern Ireland? We need that leadership infrastructure, that accountability and that knowledge and expertise to feed into the discussions in order to try to make the best of the resources that we have in the context of a very stretched and busy system.

Ms Heneghan: May I add something about workforce? When there is workforce planning, particularly in nursing, at departmental level, places are commissioned in the universities. After those commissioned places have been allocated, Marie Curie can then purchase, say, an advanced nurse practitioner course to send a nurse on. We have had some funding in the past, but it would be good if we were part of the core workforce plan and could access some of its funding. More recently, we funded a post to train an advanced nurse practitioner in the Western Trust. That has been hugely beneficial for the Western Trust, and that advanced nurse practitioner will be picked up by the Western Trust. It was a two-year training programme. We would like to be involved, because we have advanced nurse practitioners working for Marie Curie but we have had to fund their education programme.

Ms McEwan: Paula and Jennifer know this better than I do, but I will add to your question about what priority things could make a difference. Sometimes, the obvious things are staring at us. It does not have to be overly complex. If you look at the pathways by which people are sent to ED unnecessarily, that is a big point to make, because it is a really traumatic experience for them and is happening all too often. The core things that need to be in place are those that Paula talked about: the rapid response service; the out-of-hours service; and the pathway with NIAS. Those are the conveyancing routes into ED for people, so it is about making sure that we have a blanket service to prevent that from happening. It is also about making sure that the support — the generalist palliative care — is in the community. You talked about domiciliary care. Care packages are key, because all the primary care support needs to be in place, as well as community pharmacy. We had an event earlier. We need to support all those parts of the primary care system, but we know that we do not have enough care packages. We also know that not having them in place stops people from being discharged. They are therefore key. We did a piece of research a number of years ago that showed that people who were fit for discharge were dying unnecessarily in hospital. That was down to a lack of domiciliary care and a lack of care home beds. There were other factors involved, but those were the main causes.

Ms Heneghan: That impacts on our hospice as well, because we cannot move people out of the hospice in order to bring people in.

I said that three out of the five trusts have rapid response services, and Marie Curie works with them. The other two trusts have 24-hour district nursing services, and they respond rapidly to patients out of hours.

The Chairperson (Mr McGuigan): No other members have indicated to ask a question, so I thank you once again for coming. I really appreciate your giving of your time and expertise and taking part in our inquiry. Thank you very much.

Ms Heneghan: Thank you very much.