Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Dr Matthew Doré — hopefully, I got that right — the Association for Palliative Medicine (APM); Dr Alan McPherson, Regional Palliative Medicine Group (RPMG); Dr David Graham, Paediatric Palliative Care Network (PPCN); and Dr Clare White from NI Hospice. You are all very welcome. Our thanks go to your organisations for their contribution to the inquiry to date. I will hand over to you for some brief introductory remarks, after which we will go to members'' questions. Hopefully, you have agreed an order.

Dr Matthew Doré (Association for Palliative Medicine of Great Britain & Ireland): Actually, we have not agreed an order.

The Chairperson (Mr McGuigan): OK, do you want to go from right to left or left to right?

Dr Doré: Each of us has a 10-minute introductory speech. Is that OK?

The Chairperson (Mr McGuigan): Tear away.

Dr Doré: I shall go first, then. Chair, Committee members and esteemed colleagues, I appear before you representing the Association for Palliative Medicine of Great Britain and Ireland, which is the professional body of palliative medicine. I am also, however, a lowly local clinician. First, I want to outline my thanks to you for having this inquiry and to the many previous evidence-givers throughout the inquiry. I have listened to almost all of them. What did they demonstrate? I will go through their evidence at speed.

Marie Curie outlined the geographical variance in Northern Ireland and the need for a seven-day service and integration between health services. Macmillan Cancer Support worried about delayed referrals — 60% were too late — and wanted mandatory palliative care training and holistic support for patients. NI Hospice outlined workforce shortages, said that children's palliative care was heavily under-resourced and called for palliative care to be embedded in our legislation. You heard the All Ireland Institute of Hospice and Palliative Care outline the difference in the funding of palliative care across Ireland — it is fully funded;100% — and the fact that Northern Ireland spends £12·50 per capita on palliative care versus £28 in England. Northern Ireland is substantially behind in both.

We heard from the Royal College of Nursing about the level of burnout due to unsustainable workloads. We heard the BMA demonstrate the fragmentation of palliative care services, the lack of standardisation and GP overload. Indeed, the GPs outlined a lack of clarity on referral pathways, as systems are not truly integrated and are variable. You heard the trusts outline further the complete postcode lottery that we have, the staff recruitment and retention issues and the fact that they are currently underappreciated and under-resourced. Evidence from the Department of Health outlined the inability to introduce a strategy from 10 years ago that was formed with data from more than 15 years ago. It said that, in part, it remains embarrassingly unfunded, and that only now, during this inquiry — because of the inquiry, I believe — has it started a scoping exercise to see what services are actually there currently, because it does do not know. Most importantly, you have had patients and family representatives outlining delays in symptom management, an unnavigable system and bureaucratic barriers.

We are witnessing a silent crisis in our palliative care system — a crisis of neglect, inequity and failed leadership. It is ironic that palliative care, of all areas, is currently palliative itself. The consistent evidence from many organisations is irrefutable, and, first, I want to give you my headline: I plead for your hearts to hear from the most vulnerable in all of society — those who are dying — that Northern Ireland palliative care needs immediate, urgent action. There is not a single metric in which we are ahead of or on a par with GB or Ireland. We are dying for help.

There is also a danger looming: a social reaction to poor care. It is a reaction of fear that, in our moment of greatest need, we will be left suffering without help. That danger is assisted dying, also known as "assisted suicide". That is born of a fear of a system that will neglect to look after me.

The top five reasons why people have lethal medications are all social, including feeling as though they are a burden on family and friends. In Oregon, 46% felt that. Indeed, Oregon does not have what most would consider a functioning palliative care system. When you ask why people want that choice of lethal medications, they say that it is because of that fear. The narrative of "kill the sufferer rather than treat the suffering" is a result of our leadership looking the other way — away from those who are dying.

It is a sad fact that it is only because of that terrifying prospect — as a result of assisted dying, we could deem some lives not worth living — that we are looking at palliative care properly now, so thank you. I want to offer you a vision — a legacy to look towards. I can see this small but very determined nation being the standard-bearer for how to look after its population. Imagine the best value and worth in the world being bestowed on its people. Imagine having the peace of mind that we will always look after you, no matter what happens. Your worth is based not on what you do but on you being you. Now, imagine the message that that sends to the rest of the world. I will be accused of exaggerating, but I really disagree: the standard of looking after the dying is the marker of the standard of worth that the country places on its people. I will say that again: the standard of palliative care is the marker of the standard of worth that the country places on its people. I will go further. If you fix palliative care, you will make a great leap in the work to fix the health service. It is the lighthouse, you see. Let us make patient-centred care the greatest of all the attributes.

"But there is no money", I hear the cry. No, I do not accept that answer. There are priorities. There is a hierarchy of what you deem important. Palliative care is not an optional add-on; it is an essential service. I would argue that, following COVID, few would disagree. There is also low-hanging fruit, and you have probably already heard about that. Why on earth do we not have recommended summary plan for emergency care and treatment (ReSPECT) documents, advance care planning or power of attorney for health and welfare? Almost every country in the Western World has those. They are lost in a bureaucratic tangle, demonstrating complete and utter inefficiency, incompetence or an inability to progress through loss of purpose.

Here is a quote:

At a meeting of this Committee, Professor Max Watson quoted Edwards Deming:

We have those outcomes. Our leadership is broken, and the palliative care in partnership (PCiP) programme is not fit for purpose. There is no blame on any individual, but the system is not accountable, not beholden and not answerable. It defers responsibility and has no ability to progress any single thing. It is just rehashing the unachieved aims over and over again. Indeed, the APM has been blocked from joining the PCiP board. Through the Committee for Health, the APM, alongside many others, calls for a national clinical lead, the same as in every other nation, to hold lack of progression to account and to hold the Department of Health to account to its population. That cannot be shirked.

Secondly, our legislation needs updating. At present, Northern Ireland does not mandate palliative care as a statutory duty. In England and Wales, Baroness Finlay's amendment changed that, so why not here? The APM demands that there be a legal duty to fund and provide palliative care for our population. I have been referred to the Health and Social Care (Reform) Act (Northern Ireland) 2009 by those who say that that is already in place: what balderdash. The 2009 Act does not once mention palliative care, and, irrespective of that, 16 years down the line, it has not worked. Has the legislation been ignored, is it poor legislation, or does it not do what has been claimed?

Thirdly, service specifications need to be done accurately. In order to attribute commissioning accurately, all the services should be specified accurately. There is no definition of a hospice, for example. We need to define that accurately in order to fund it accurately, but fund it we must. Do you see how far behind we are? Palliative care is an essential service and should be 100% funded; not to the current token non-inflation-linked level of less than 50%.What message do we send by not fully funding palliative care? The NHS promise is "cradle to grave", yet it abandons people at the grave. Hospices are forced to beg for funds while the growth of other services, such as oncology, is manifold. Let us face it: all palliative care services in Northern Ireland have, essentially, been stagnant for the past 20 years. Why is palliative care recurrently the bottom of all priorities?

Along with 100% funding, we need specialist and generalist services to be available 24/7, seven days a week, as per National Institute for Health and Care Excellence (NICE) guidance from 2006. We need single points of access and a truly integrated system, but you know all this: all the evidence is there, because we have been saying it for 20-plus years.

I will make a final plea. This is not about politics but about people, and we are failing them. What legacy do you want to leave? May I give you one that stands the test of time? Shout for those who cannot. Build a country in which we care for those who cannot care for themselves. Choose dignity over neglect, action over apathy.

The Chairperson (Mr McGuigan): Thank you. Who is next?

Dr Clare White (Northern Ireland Hospice): Thank you for inviting me. I have been a consultant in palliative medicine for over 16 years. I work between the Mater Hospital, where I see hospital inpatients, the Northern Ireland Hospice, where I work in the specialist inpatient unit, and in the community alongside our hospice nurse specialist team. I hope to speak a little about the need for specialist palliative care, especially about why, despite the push to move care into the community, we still need specialist inpatient units, and about the challenges that we face when working in this area.

Why do we need specialist palliative care? All medics should be able to provide generalist-level palliative care — the basics of controlling symptoms, providing psychological support and identifying those who are dying — just as I do not need a cardiologist to manage my patients' high blood pressure or angina unless it becomes complex or difficult to control, when I may need to call in a specialist. Generalists should be able to provide palliative care to the majority of patients who are facing the last few days, weeks or months of their life without high levels of complexity, and many patients can live well until they die peacefully, requiring only generalist palliative care.

In the same way as there is a need for consultants and specialist nurses in other specialties such as cardiology, there is a need for specialists for palliative patients whose needs cannot be met by generalists. That is where specialist palliative care comes in, often working alongside hospital teams to get people's symptoms under control so that they can be discharged back into the community or alongside GPs to keep people comfortably at home.

Specialist expertise is needed for those with symptoms that are difficult to control despite generalist care, such as severe pain, intractable vomiting, extreme shortness of breath and intense anxiety or distress, to name a few issues, and to provide support for the patient and their loved ones as they face death with those challenging symptoms.

When patients experience issues that cannot be controlled by specialists in a hospital or the community, a specialist inpatient unit or hospice is required. Continuing the cardiology example, the parallel is with the coronary care unit. In a specialist palliative care unit, we aim to control those symptoms well with access to holistic care through our multidisciplinary specialist teams and the use of complex medication regimens.

In many cases, we aim to control people's symptoms and discharge them, but some will end up spending the last days of their life in a specialist unit. Those people cannot die elsewhere due to the complexity of their condition, with, perhaps, difficult-to-control symptoms, or there may be social circumstances that make dying at home impossible, such as having young children living there, the person having chosen not to die in front of their children.

Palliative care is not a specialty for older people. Many dying parents leave behind young families, and approximately half of those who are admitted to our inpatient unit are under 65 years old. You can imagine, I am sure, that knowing that you are dying and leaving dependent children requires specialist support for the parent and those whom they leave behind.

Over the years that I have worked in specialist palliative care, I have seen many patients being admitted to the Northern Ireland Hospice inpatient unit with intractable symptoms — crying, unable to move due to pain, gasping for breath, vomiting copiously, confused, agitated — and wanting to be dead because life had become so miserable that it was no longer worth living.

However, with the right balance of medication and holistic support, I see these people transformed within days to people who are comfortable, clear in their thoughts once more, often able to get out of bed, able to have important conversations with their loved ones and having regained their desire to live and enjoy life for as long as possible. They still have a limited time to live. We have not changed that, but we have given them the opportunity to live well until they die and to enjoy the time that they have left.

While that is vital for them, it is also vital for their loved ones. To know that the person you love died peacefully with comfort and dignity and that you had the opportunity to tell them that you loved them and say goodbye properly helps to ease the rawness of bereavement, and it allows those bereaved to recover sooner and be able to continue living their lives without crippling memories of unnecessary suffering.

When I talk to patients about their fears, for the majority, the biggest fear is that of dying badly, distressed, suffering, in agony, gasping for breath, and for their loved ones to watch them die like that. I can confidently reassure people that, with access to the right specialist palliative care, that should never happen. We have access to medications and specialists that should ensure that, nowadays, no one should die like that. Patients may, however, if their needs are complex, need to be in a specialist unit to enable them to die comfortably.

I work in the community, in hospital and in a specialist inpatient unit. I am not naive enough to think that bad deaths do not happen, because I hear about them. It is, however, usually due to a failure in care, with an impending death not being recognised and without access to appropriate specialist-level care. That, unfortunately, happens too often.

In order to be able to provide the level of care required for those with the most complex needs, which is the level of care that we would all want if it were us, our relatives or loved ones who had difficult-to-control symptoms, we face many challenges, one of which is funding. No cardiology services are run by charities and depend on people running marathons, having coffee mornings and selling second-hand clothes, but that is how a lot of our funding happens. If it were not for historical reasons, people would be horrified to know that it takes charities to provide good symptom management and end-of-life care for the most needy patients in Northern Ireland, rather than that being a core function of the NHS.

There are many other challenges, which others will have spoken to: pressure on beds due to delays in discharging patients because of lack of care packages and nursing home places; hospices not being on Encompass, meaning that there is a risk of information being missed; the lack of a regional do-not-attempt CPR (DNACPR) forum; and the lack of an implemented advance care plan document such as ReSPECT. The absence of those compromises the continuity of care for patients and makes the health system inefficient by requiring duplication of work. The challenges faced by our patients are many, but we need good systems in Northern Ireland that ensure that some challenges can be reduced, such as access to medications when people need them, including out-of-hours and 24/7 support to keep people living and dying well. I am sure that many others will speak to those issues, so I will not do so today.

I welcome this inquiry and the work that you are doing. Thank you for prioritising palliative care. We know that palliative care works. We have decades of research that shows that palliative care improves patients' quality of life, reduces the number of people being admitted to hospital at the end of their lives, which saves money, and improves the well-being of carers. It works best when it is provided early as an extra layer of support.

I love my job, and I want to be able to continue to provide excellent symptom control for those struggling at the end of their lives in order to ensure that all die peacefully, comfortably and with dignity, which, I imagine, is the least that we would all want for ourselves and our loved ones. However, to do that, we need properly funded palliative care services, not just in the community and hospitals but in the specialist inpatient units that are essential for the most complex of patients who cannot be cared for elsewhere. Many of you have visited our specialist inpatient unit, and, hopefully, you got a feel for how essential the unit is for our most needy patients. Any of you who have not had the opportunity to visit are most welcome to come and see at first hand what we do and why it is essential. I would be delighted to show you round and introduce you to patients who, through their lived experience, can explain the need for specialist units much better than I can.

Dr Alan McPherson (Regional Palliative Medicine Group Northern Ireland): Thank you very much for asking me to come and speak today. RPMG
Is made up of all the palliative medicine doctors from across the Province: consultants, hospice medical directors, staff grades and senior trainees working across all settings, including our hospitals, cancer centres, hospices and communities across the whole Province.

The purpose of RPMG is to contribute to our local regional guidance. We provide representation at the clinical engagement group within the PCiP structures. We are active nationally through the APM and the national clinical leads. We speak at our national conferences and gave evidence at the Royal Commission in Westminster in January. However, above all, we want to provide leadership and a necessary senior clinical voice for our communities in Northern Ireland. It is as leaders that we welcome this opportunity to come and share our views.

I have a clear mandate from RPMG for what I have to cover today, but I have to say that I really struggled to write this and to know what to say. I was up at 2.00 am still trying to work out what to say, so bear with me. There will be no surprises here. I have watched the great and the good come and give evidence in front of you, and I will repeat a lot of what they said. We have provided our written submission in evidence, and I will repeat a lot of that.

I will briefly summarise our position. Currently, access to palliative care in Northern Ireland is not good enough. Our services are pretty good, but our problem is in accessing them. They are complicated to navigate; there are unnecessary regional variations; demand outstrips capacity; and our services are chronically underfunded.

We have gaps in our care provision that have never been addressed. Those gaps are probably getting worse, and we do not see a plan for how those are to be managed in the future. We know about the well-publicised impending demographic changes, and we worry about how those will affect us.

It is said that Northern Ireland may now lag 20 years behind the rest of the UK in palliative care. We have no legal right to palliative care. We do not have a policy for palliative care. Our 2010 policy, Living Matters, Dying Matters, died in 2015. The Regulation and Quality Improvement Authority (RQIA) reviewed the implementation of the strategy in 2016 and concluded that it was constrained by the limited provision of statutory funding.

We are the only region in the UK and Ireland that does not have a national lead. No one is accountable for our standards or for the development of palliative care in Northern Ireland. Northern Ireland has written an advance care planning policy, but we have been unable to implement it. We have been unable to finish the implementation of our Mental Capacity Act. Therefore, in Northern Ireland, we are unable to appoint a health and welfare lasting power of attorney. I am not aware of any plans to address that shortcoming.

We have never been able to implement a regional DNACPR forum. We have been waiting for that since, I think, about 2005. Our specialist palliative care workforce planning report for 2017 to 2024 was a bit controversial at the time, and I believe that it has never been published or implemented.

The palliative care in partnership programme board and its subgroups have possibly fallen a bit short, despite the involvement of really good people working very hard. Perhaps it is in the structure, perhaps it is in the lack of authority or perhaps it is because the programme team relies on charitable funding. I am not sure.

We have not been able to develop seven-day working or robust out-of-hours services despite that being a recommendation from NICE for over 20 years. We have, perhaps, not seen fair and transparent commissioning.

In the Department of Health, palliative and end-of-life care is fragmented and siloed across different departments. Our public health messaging perhaps falls short. Maybe that is because the Public Health Agency (PHA) does not currently have a clinician responsible for palliative care. I am not clear what our plan is to provide the necessary supportive care for cancer survivors. To my eye, our measuring and metrics seem to be virtually non-existent. Our list of shame goes on and on. However, perhaps our biggest problem and our recurring theme might be our inability to effect change. Maybe, in Health and Social Care Northern Ireland (HSCNI), we can talk and write reports, but we struggle, maybe, to deliver. We have really good people working really hard, but we just cannot get stuff done. It is just not good enough.

Please bear with me while I share some personal reflections. I am getting old enough now that I am starting to reflect over my career and to consider what the last bit of my career should look like. I graduated from Queen's 25 years ago and have done most of my training in Northern Ireland. My first consultant job was in the Northern Trust, and I am now a consultant in a charitable hospice. When I reflect back, I see that, growing up through the horrors of the Troubles, health and social care in Northern Ireland was seen as better than that in the rest of the UK. We were ahead of the curve. We had integrated health and social care. However, it has changed over subsequent years, perhaps most noticeably through austerity in 2010, and I wonder whether health services have come off the rails from that time. We then had Stormont collapsing a few times, then COVID, then Brexit and then the cost-of-living crisis. Now, we have wars, tariffs and uncertainty. It is hard to maintain a bit of hope through all of that. We are a post-conflict society, and we have significant socio-economic problems, mental health issues and drug problems. We have people living chaotic lives who might be at risk of chaotic deaths while we work in an increasingly broken system, with later diagnoses, younger patients, demoralised staff and under-resourced GPs being asked to do more. I believe that we used to spend 10% of our Health budget on primary care, which was inadequate. I believe that it has now reduced to 5%. There are not enough carers available to provide the necessary social care. We see a knock-on effect of that, particularly in specialist palliative care, which is being asked to take on more and more. It is now commonplace for me to see patients who really should be in an ED refusing to go to an ED. There is an increasing demand for palliative care to pick up increasing complexity in the climate of increased financial uncertainty, chronic underfunding of hospice services and an impotence to effect change or implement improvements. In Northern Ireland, we may have a perfect storm of reduced capacity, increased complexity of demand and an absence of leadership.

Perhaps the greatest existential threat to palliative medicine in Northern Ireland currently could be seen to be assisted dying. We look on while all of our neighbours propose legislation to allow for assisted dying. RPMG performed a survey of its members in order to understand our opinion and to provide a mandate to speak against. The survey has been published in the 'Ulster Medical Journal', and I have brought copies with me. Briefly, our results show that 100% of responding palliative medicine consultants and registrars are not in favour of changing legislation to allow for assisted dying. Some 93% are concerned that assisted dying will be influenced by cost savings for patients and families; 82% are concerned that assisted dying will be influenced by cost savings for Health and Social Care; and 53% would not work in an organisation that undertook assisted dying, with 40% not sure whether they would work for such an organisation. I can understand why the RPMG survey was so uniformly conclusive. How can we justify a commissioned assisted dying service in the context of such a broken health system that struggles to provide access to services, cannot currently provide choice and where charitable hospices, which are providing the majority of palliative care, are experiencing chronic underfunding and funding pressures?

By way of summary and conclusion, I will say that we have good people working very hard to provide their very best, but we have problems. First, we need to address our problems in order to find ways to deliver change. I suggest that we need to see palliative care as an essential service for all who need it. We need a national lead. We need better structures in the Department of Health, the PHA and the palliative care in partnership programme, providing transparent, accountable and responsible leadership with authority. Then, we need to think about getting the basics right. We need a strategy. We need to do some workforce planning. We need to think about our commissioning and about developing multi-year budgets. We need to start measuring stuff and using that data.

Lastly, we need hope. We need hope that things can and will change. Thank you.

The Chairperson (Mr McGuigan): That is very important.

Dr David Graham (Northern Ireland Paediatric Palliative Care Network): Thanks for inviting me today. I am a paediatrician in the Southern Trust and a co-chair of the Northern Ireland Paediatric Palliative Care Network. It is powerful to hear how passionate everybody here is in talking about this. I will hopefully give a voice to the children and families whom I have worked with for many years and to the many teams that I have worked with that see difficulties in paediatrics and palliative care. I have been working in paediatrics for 20 years and as a consultant for the past 10 years, with part of my job being in palliative care. I have been involved in the Paediatric Palliative Care Network since it was formed in 2019. Prior to that, we just had a special interest group: dedicated clinicians and hospice team members who tried to develop things in Northern Ireland in the area of paediatric palliative care.

I would like to talk about some of the issues that I and the network see and things that we could possibly change in the coming years. I will start with the understanding of palliative care. I addressed that in my written evidence. There is a widespread misconception, amongst the public and healthcare professionals, that palliative care is synonymous with end-of-life care, but, in paediatrics, that is far from the truth. I will give you the World Health Organization definition from 2013:

The reason that I wanted to mention that is that it is well known that paediatric palliative care often begins at the time of a diagnosis of a life-limiting, or potentially life-threatening, condition. We see families from before the child's birth right up until they are 18 years of age. When a child and family receive that diagnosis, we aim to improve quality of life; to support families emotionally and practically; and to help children to live as well and for as long as possible. It is a long-term, holistic approach; it is not just about the final stage. That contrasts a bit with what was seen historically, particularly in adult palliative care, not that I am an expert in that area. It was often seen as the last year of life, whereas paediatric palliative care is often of a longer duration. Things may be changing in that regard in the world of adult palliative care.

My second point is about the underfunding and inequity in paediatric services. Children in Northern Ireland do not have equal access to palliative care. There are different groups of conditions that can lead to children having life-limiting illnesses. One of the biggest groups that we think about are children with cancer, who are known to oncology services. They probably get a better level of palliative care support. I would not say that it is ideal, but it is a better level than what other groups of children receive. The other groups of children that I am thinking about — and that we see week in, week out, as they are frequently admitted to hospital with multiple health problems — are those with severe neurodisability or rare genetic conditions. They are far less well served in paediatric palliative care. We need to think about how that can change in our plans and strategies.

There are no dedicated funded paediatric palliative care teams or end-of-life teams anywhere in Northern Ireland, but that was recommended by the NICE quality standards from 2016. In its documentation, it recommended that there should be a core team that includes a paediatric palliative care consultant, which is a consultant who has specific, specialist training in paediatric palliative care; a nurse with expertise in paediatric palliative care; a pharmacist with expertise in specialist paediatric palliative care; and experts in child and family support who have experience in end-of-life care. That would include social, practical, emotional, psychological and spiritual support. We, as the network, are working on that and thinking about how we can develop it in the future. I wanted to bring your attention to that.

Most work in end-of-life care specifically for children is carried out by our community children's nursing teams in each trust area, as well as by specialist nurse teams from, for example, the children's hospital in Belfast, who may be oncology specialist nurses or hospice nurses who can provide support to the families. It is a common theme at all our network meetings that those teams are not funded properly. They work on goodwill. Most trusts provide a nine-to-five service, and then, when it comes to end-of-life care, they pull out all the stops, out of goodwill — they are not paid — working above and beyond to provide that service out of hours and at weekends. That is an ongoing problem in paediatric palliative care.

In addition, no consistent medical cover is funded for children receiving end-of-life care. That is not a sustainable model, and families are often left vulnerable. On a few occasions over the past couple of years, families who want to remain at home with their child during end-of-life care have asked me why there is not the specialist input that, they feel, is vital. Last year, coming up to a bank holiday weekend, a family was wondering, "Who can we get to come out and see our child? Who can we even have at the end of a phone?". That brings a huge amount of stress and anxiety to a family. It is a big problem.

The other area that I want to touch on is transition. Young people from the age of 14 upwards are poorly served in palliative care. There is a grey area between paediatric and adult services in many areas, and, again, families often feel vulnerable in that situation. Transition can be a big problem for any child with any health condition, but, for children and young adults with a life-limiting condition and complex health issues, it poses further problems due to the need, often, for multi-speciality input, advance care planning and increased technological needs, by which I mean breathing support and feeding support, and creates a fear of how they will fit into adult support services. For those families, there is often no clear lead or equivalent doctor in the adult world who will take on the care and look at a holistic approach for them. That is a big problem, because, as Fraser recognised in her 2020 paper 'Make Every Child Count', the mortality risk for children with life-limiting conditions increases when they reach young adulthood. We should focus on improving a child's journey into the adult world as a target area.

Dr Doré: David, just to clarify, that transition is from children's services to adult services, not transition of sex.

Dr Graham: Yes.

Another issue is that we have no up-to-date data on how many children in Northern Ireland live with life-limiting conditions. Other parts of the UK have done that work. For example, in Scotland, there was the Children in Scotland requiring Palliative Care (CHiSP) study from — I cannot remember the exact year. We try to equate our data in Northern Ireland to that study. To develop and drive things forward, we need some way of getting accurate data for all the families and children. That will really help us to improve how we manage our services and develop things.

There is often poor integration between our services in primary care, secondary care, community teams and specialist teams. To go back to the transition from paediatric to adult services, there is often little connection for the children and families who are moving between them. Families often end up having to do a lot of the coordination work themselves and to take on a lot of things that they should not be taking on.

I will talk about what needs to change. There are good examples that we have been working on. We, as the network, have been working on the previous strategy from 2016, and we have achieved some of the things that we set out to do in that. The antenatal palliative care pathway is an example, and there is also the specialist nurse pilot in Belfast. There is sporadic development in certain areas, but we really need to regionalise and improve our regional approach. There are several clear and achievable things that we need to think about. We, in the network, are actively thinking about a funded end-of-life care team for children with access to 24/7 cover, but we are struggling to develop that. If we could get funding and progress it, that would be vital. We need to think about better training for future specialist paediatric palliative care consultants and nurses. There are no good, defined pathways for that. We need a regional model of care with pooled resources and shared expertise; improved transition pathways for young people, specifically those with life-limiting conditions; and an updated palliative care strategy. Our current strategy is due to be renewed in 2026. If we could take that forward, that would be fantastic.

I will go back to some of the points that have been made about legislation. I know what has happened in other parts of the world. I have heard a colleague in Canada talk about how, once legislation for paediatric palliative care was introduced in that part of Canada, it really helped to drive progress on the services that they could develop there. I am sure that we could give other examples. Finally, as I mentioned, we need reliable data to provide planning and service development. Thank you for your time.

The Chairperson (Mr McGuigan): Thank you to all four of you. That was very useful. As is always the case, the evidence to the inquiry has been delivered with passion and expertise. We really appreciate that. We have already heard a lot of the stuff that you said, but it is always good to hear a different perspective and to reinforce points.

I say this to members before we start, because we will have a lot of questions: there are four witnesses on the panel, so, if any Committee members have a question for a specific panel member, just point that out. I say this to the panel: if we there is a general question, rather than have all four people answer, one person could answer it. If there is something important that you want to say, we have time to do that, but we want to get through as much as possible.

One thing that we have heard right from the beginning is the need for a clinical lead. That has been mentioned today. Generally, has there been any engagement with the Department on that position? Are you aware of any specific feedback?

Dr Doré: That is not a new thing that is being said, if that is what you are asking. It has been said recurrently, certainly through the RPMG, the APM and those kind of mechanisms. It has also been said at our clinical engagement group and the PCIP. Has there been direct engagement with the Department of Health? I am not aware of anything formal, and I am not sure that my colleagues are. This is not a new thing; it has been mentioned for half a decade or more.

The Chairperson (Mr McGuigan): I am probably asking the wrong people, but, essentially, you are saying that it is not a new thing, and it seems an obvious thing. Why does it not exist? Are you aware of what the roadblocks are?

Dr McPherson: I do not know, but I look at colleagues in Wales, England, Scotland and the Republic of Ireland and see what their national leads are producing. We heard from them at the Palliative Care Congress this year. I know that Idris Baker is doing lots of work as the national lead in Wales. We look on with envy a little bit, because nobody has taken on that role for us.

The Chairperson (Mr McGuigan): OK. Fair enough. One or two of you mentioned the lack of understanding that the public have about palliative care. We have heard that continually. How do you think that we can change that perception? What is required to change it?

Dr Doré: Are you asking about the public perception of palliative care?

The Chairperson (Mr McGuigan): Yes: the public perception and knowledge.

Dr Doré: It has to be an all-encompassing work on multiple levels, to be honest with you. As you know, we have spent the past 50 years telling people that we do not kill them when they come to the hospice. That message is slowly getting through. I am repeating myself: the biggest thing is that, recurrently, palliative care is not prioritised at all. Therefore, the resources that we have to tell the public things are left to charity and goodwill. There is no national scheme. Look even at the banner behind you: those Committee for Health "bubbles" show, I presume, your values, and one of them says, "Prevention is Better than Cure". At every level, it is about cure, prevention and other things; there is nothing to do with the end of life, even on the banner just behind you.

The Chairperson (Mr McGuigan): Fair enough.

Dr White: Some charities have done promotional work and publicity campaigns, such as Dying Matters, but something that is coordinated at a much higher level would have a much greater impact, right from schools up to adults. If you influence schools, you influence the next generation. Certainly, more information should be available to people in order to take away the fear and the stigma. That is the way that it used to be with cancer. People of my grandmother's generation would never have mentioned "cancer": if someone was dying of cancer, the word was never said. Dying, for a lot of people, is still a taboo. We need to be able to talk more about it. The more it is talked about, the more people will be enabled to talk about their wishes for care.

The Chairperson (Mr McGuigan): OK. Another theme that we have heard about throughout the inquiry is the inequalities in service. Some places are better than others, for a variety of reasons. However, I had not heard until today, Dr Graham, about the differences that exist in paediatric services. You said that children with cancer are likely to get a better palliative care service than children with complex, life-limiting or rare genetic diseases are. Why is that? Is it because of the extent of the knowledge in the medical profession, or is there another reason for it?

Dr Graham: I think specifically about children's services in Belfast. From a medical point of view, the oncology team has traditionally provided an on-call telephone service for problems out of hours. It does not do home visits or anything like that; it provides advice and support over the phone. The team also has Macmillan nurses and oncology specialist nurses who can provide a bit of outreach support. However, there is no real equivalent for children in other categories of life-limiting-conditions. It may just be because oncology has been better funded until now.

The Chairperson (Mr McGuigan): OK. Fair enough.

Dr White: That is how adult palliative care services began: they grew up through oncology. Palliative care used to be just for patients with cancer, but it has developed. Paediatric care is lagging a bit behind that. However, it is still the case that, in adult services, oncology patients probably get better access to palliative care.

The Chairperson (Mr McGuigan): I cannot remember which of you mentioned that there is low-hanging fruit to be had. We are doing an inquiry, and we will produce a report that makes recommendations. I do not know how many recommendations we will make: some will require funding; some may not. I will ask each of you to name three key areas where it would make a big difference if they were addressed as a matter of urgency.

Dr White: Proper funding for hospices and the charitable sector is huge, so that they know that those services are sustainable and they will not have to close the doors or the beds in six months or a year if charitable funding dries up. Funding is needed to sustain services but also to grow them. There is so much potential. We are talking about all the things that need to be done. There are brilliant people working in palliative care; they can do it and they have the will and desire to do it, but they need the resource behind them.

Secondly, there is the low-hanging fruit: the advance care planning documents, such as ReSPECT, and the DNACPR forum. All the work has been done on that and funding has been poured into it, yet, if someone in a hospice or hospital setting is deemed not for resuscitation, the GP still needs to do paperwork and, potentially, have a conversation. It is so inefficient, for both healthcare professionals and patients and their families.

The third one — they have more time to think than I had. Come back to me on the third one. [Laughter.]

Dr Doré: The first thing is legislation. I understand that the Assembly could legislate but that time is an issue. I strongly encourage you to consider that legislation needs to be in place to act as a wall for commissioners to get things done. I will give you a tiny bit of history. Ilora Finlay's amendment required integrated care boards (ICBs) in England and Wales to commission specialist palliative care and also give money for GP palliative care. NHS England released a document outlining that there has to be a bit of each. You can make the legislation better, learning from England and Wales. It can go equally to specialists and generalists.

The second thing is the structure. There is a fundamental problem with the current structure of leadership. As I said in my opening remarks, we know that we have a machine that is designed perfectly to get the outcomes that we get. We get those outcomes, and we know that the machine works as it does. We need to adjust the machine in order to get different outcomes. A litany of things have not been achieved by the current machine. How do we achieve those things? We need to change the machine a little bit. A national clinical lead is part of that change of process. I think that you are getting the impression that we have been saying these things but nothing has been happening: that is exactly how we feel. We do not understand why the way in which decisions are made is not transparent and why it is not clear who makes those decisions. Everything is obfuscated, and we cannot go through things.

The third thing is linked to Clare's point about funding. We need accurate service specifications for every palliative care service in Northern Ireland. We need to know what the commissioners are commissioning. The commissioners come back and say, "I don't know what I'm commissioning". We need to give them really clear direction. What are the different services across Northern Ireland? Then, there is the question of whether there should be a legal right to assisted dy— sorry, to palliative care; definitely not assisted dying.

The Chairperson (Mr McGuigan): That would have been a bad slip of the tongue.

Dr Doré: Oh, my goodness; definitely not that. It should be that we need to provide palliative care because it is a duty. Those are the services. The structure must allow us to instigate changes: they must hear, and we must commission appropriately.

The Chairperson (Mr McGuigan): Thank you.

Dr McPherson: I am a wee bit conflicted, because, in trying to do so much, we will perhaps write more policies and procedures that will sit on shelves, and we will never quite get stuff done. I am not thinking about legislation per se right now, because that might take years. Writing a strategy might take years. We have written a strategy, but we have never really implemented it because the funding was not there to do that. I want to focus on the basics of running a business, including getting a workforce plan, good metrics and funding; understanding our inputs and our outputs; and understanding our sustainability and where our strategic vision will take us. It is maybe not about spending years writing plans.

Dr Graham: For me, the first thing is workforce. It is very important to have a holistic medical, nursing and allied health professional team around the child and the family. As I said, we do not even have a tertiary-level specialist paediatric palliative care consultant in place. There was one for a while, but that position is vacant now. In the hub, we need a sustainable team with specialist knowledge. In each of the spokes — in the workforce of the trusts — we need sub-teams that have some degree of additional training in palliative care. We need properly funded, developed teams that all work together and talk to each other in an appropriate way. For example, a tenth of my job is palliative care, but I could easily spend full-time doing palliative care. It is the same for each of the medical leads in each of the trusts. The workforce really needs to be developed. We have ideas on how to do it — again, it is just about having the funding.

The second thing is data. We go to whoever and say, "We need to do this"; they ask, "What numbers do you have? What can you tell us about the number of children in Northern Ireland who have that issue?"; and we struggle. We try our best to piece things together, but we really need to get a good piece. It can be done. I know that it has been done in other areas of the UK, and it provides such valuable information to develop services further.

The last thing is a redo of the strategy for 2026. It would be useful to do that.

The Chairperson (Mr McGuigan): Thank you. What we really want to give people at the end of the inquiry is hope.

Mrs Dodds: Thank you for your presentations. On what you just said, Chair, the one thing that does give us hope is the fact that, in the middle of all the frustrations, we have clinicians who are really passionate about what they do.

I have raised this issue with everybody, and I am going to persist with it. I think that a legal entitlement would drive change in palliative care. Currently, we do not have a legal entitlement. I really want to see us being able to drive the commissioning of services because the Department would be held to account legally for not having those services. That is a view of mine that is not new to anybody in this room. I have said that over and over again, but I think that it is really important. Matt, you expressed a view on that.

Dr Doré: These things are fed from the top down. If there is a legal requirement — a duty or an onus— to provide palliative care services, that will feed through absolutely everything and create a society in which palliative care is valued. At the moment, we are not truly integrated into the health service. The NI Hospice is just shy of being 50% charitably funded, and the Children's Hospice is just less so. We need to move the entire health service towards having an essential palliative care service. If I were to go right to the top, that would be legislative. Again, learning the lessons from England and Wales, we can do that legislation better in the sense of its being for the generalists — GPs — as Clare talked about, and also the specialists so that difficult deaths are managed appropriately.

You need both together. You cannot do one without the other — you cannot expect GPs to do cardiology — you have to do both.

Mrs Dodds: David, you are, I think — I might be wrong — the first clinician who specialises in children's palliative care to come before the Committee. What you said was extremely interesting. Knowledge is power for parents and families who go through this. I have experienced it myself, but constituents also tell me this: when a child has a disability, you expect everybody to come out of the woodwork to help you to manage that disability, but, in reality, you have to fight your way through the system very hard and try to gain that knowledge for yourself. What is that like for a family who discover that their child may have blood cancer or any other life-limiting condition?

Dr Graham: At a paediatric palliative care conference in Belfast two years ago, work that had been done in the Republic was presented that highlighted the family's journey after hearing the news that a child has a life-limiting condition. The first stage is adjusting to the news. As you know, it can be a quite dramatic and very difficult situation. The family will then move on to adjust to their "new normal" lifestyle, which is quite often far from normal. It is in moving into that phase that families often feel that they need to fight for things. It is a common theme. They say, "We have to fight for everything", and, "When we go into hospital, we have to make sure that everything is done this way", meaning the way in which they know how to best care for their child. If they need a specific service, they feel that they have to "battle" or "fight"; such language is often used in that situation.

We try in paediatrics to better support the family through that process or journey, particularly by spending more time with the family, listening to them and thinking about the holistic approach to their needs. Palliative care fits into that, as I said, with the holistic approach to care and looking after the child and their family.

Mrs Dodds: Is there a specific route that parents can take — perhaps it is left to a charity — so that, if they come to us, we can offer them advice, or is that something that we need to develop?

Dr Graham: Services are out there. Within trusts there are community children's nursing teams and allied health professionals (AHPs) who visit families, and there are social work teams. It varies from trust to trust. Another useful team member, often, is a psychologist. Again, that is patchy in different areas. Some trusts might have psychological support for families, but others do not.

Mrs Dodds: David, you have just segued beautifully into my next question, because I have seen that issue as a constituency query. A child is being treated in the Southern Trust and, regionally, in Belfast, but has had difficulty with psychological services because they are commissioned only in Belfast and not in the Southern Trust. We should all have some sort of equity when it comes to what Health gives us. Is that a recurring problem? Is that something that you see? Maybe what I saw was a one-off.

Dr Graham: In some trusts, psychology services may be funded for certain health conditions, whereas, in other trusts, the cover is more widespread.

The hospice often provides excellent support for families, including siblings, of children with life-limiting conditions. It is very useful for the families in providing bereavement support, grief support and all of that, including respite care.

Mrs Dodds: May I ask two more questions?

The Chairperson (Mr McGuigan): Go ahead.

Mrs Dodds: Alan, it would be really interesting to see the results of the survey. I have not seen them. That is my fault, not yours. Oh, you have some to leave with us; that is brilliant. It is important. Wes Streeting said that it was really difficult for him to support the assisted suicide Bill when, actually, as the Secretary of State for Health and Social Care, he did not provide adequate palliative care. Therefore, it is really interesting to hear what our clinicians say about it. That is massively important.

Clare, we met at the hospice, and it was a really lovely morning. You talked about the community service that you offer, as well as the specialist service. At the hospice that morning, we saw a very clear demonstration of how that specialist service is vital to particular patients. How much of your time do you spend on specialist and generalist work in the community? Can you offer some of those specialist services in the community with the right support, including nursing support?

Dr White: Absolutely. Yes, we have a specialist service in the community. Some people do not need to be in a specialist unit. There are lots of people who can be managed very well at home. In the Northern Ireland Hospice, we have a team of specialist nurses at band 6 and band 7 who visit patients at home. They work alongside the GP and give advice and support on medication regimens and provide psychological support to patients and their families to help guide them through the process and support them in that. They are specialists. As consultants, we also do domiciliary visits for the most complex patients. A lot of patients will be looked after by the nursing team alongside their GPs, but, for those who need it, a consultant or speciality doctor goes out and sees that patient to provide that added level of specialist support. They advise on medications at home for people who do not need to come into the unit and are not quite at that level or those who, for whatever reason, do not want to come to the unit. Some people are terrified to come into a unit because they have a fear that you go in and die or they just really want to be at home for whatever reason.

Mrs Dodds: Can you provide some of those specialisms in the community?

Dr White: Absolutely, yes. We have specialist physios and specialised AHPs in some areas. Again, it is to do with funding. In some areas, people can get specialist AHP input.

Mrs Dodds: How widespread is that across Northern Ireland? Can everybody have that —

Dr White: A specialist nurse?

Mrs Dodds: — or is that the luck of the draw or a postcode lottery based on where you live? How does that work? It frustrates us all in the Committee that, a lot of the time, when it comes to health, what you are offered and the care that you receive has nothing to do with the nurses or the clinicians or anything but is just about the way services are commissioned. Is where you live and which trust area you live in a factor?

Dr White: There are services in every trust area, but they are different providers. The Northern Ireland Hospice provides services across, I think, three trust areas. Foyle Hospice provides for the Western Trust, and Macmillan provides for the Southern Trust. Is that right? Yes. The services are provided differently, but there will be specialist nurses in each area. Those specialist nurses are not out every day; they do not have the capacity to be out every day. The most acutely symptomatic people might get a run of having a nurse out every day or every other day to advise and support, but it is always a capacity issue. If nurses have 30 people on their caseload, all those people will need to be seen at some point. Yes, people have access, but, again, those people who have specialist needs get access to a specialist. If you have a life-limiting illness but have no complex needs, your symptoms are well controlled by your GP. If you do not have extreme levels of distress, you may well be able to be managed by generalists and not need that specialist support. However, if the cases are more complicated than that, those people are referred to our specialist teams. It is similar to hospitals. We have a liaison service in hospitals, which is a specialist team that works alongside the hospital consultants to give advice and support. It is either specialist nurses or specialist consultants. Does that answer your question?

Mrs Dodds: It is important that we understand that, with what happens in the community, there is a degree of specialism in that as well.

Dr White: Very much so.

Mrs Dodds: That is important for folk who wish to remain at home. It is important that we can respect their having that choice.

Dr White: Our specialist teams very much keep people out of hospital. Usually, we do not admit somebody to our unit who has not already been seen by a specialist either in hospital or in the community: they would not get a bed in our inpatient unit because our inpatient unit is for the most complex cases that cannot be managed by a specialist in other areas. There are specialist palliative care professionals in the community and in hospitals.

Dr Doré: To say it in a slightly different way, if you have a palliative care nurse, that is a specialist service. When we refer to generalists, we mean the GPs and district nurses who look after those who are in nursing homes and so on. There are different providers and different levels of specialism. Generally speaking, however, they are specialist nurses. It is the same with the liaison teams in hospitals. Generally speaking, if you are dying, the gastrointestinal (GI) ward will look after you, but, if you have specialist needs, their team will call the liaison palliative care team.

This may be surprising, but only about 15% to 20% — one in five — of those who are dying need a specialist palliative care service. That is a UK-wide figure; I do not know the Northern Ireland-specific figure. That is normal. To use Clare's example, how many people with hypertension go to the cardiologist? It is probably a similar equivalence. The hospices — NI Hospice and others — are specialist units where people need an inpatient stay to manage their symptoms; yet there are other people in the community who want to stay at home. We can manage that with the specialist palliative care nurses at home with a syringe driver or whatever. That is why I am keen for there to a service specification. There are specialist services throughout Northern Ireland. Clare and my argument is that those services, along with the general practitioners and district nurses, are very much under-resourced.

Mrs Dodds: Thank you.

Mrs Dillon: Thank you very much, all of you. I apologise that I was slightly late; I was at another meeting.

I will come in on the back of what Diane said. I have been very focused on this to date, because, unfortunately, I have been through the process of adult palliative care. The Chair's point about the understanding of what palliative care means and the difference between palliative care and end-of-life care is important. To be honest, the question has been asked, and you sort of answered it, Dr Graham, but I want to narrow it down, while not putting words in your mouth. You were asked about the difference between services for children who have a diagnosis of cancer and other children with palliative or end-of-life care needs, which, at the bottom line, is resourcing. Resources have been put into the care of children with cancer but not those other conditions.

Dr Graham: I think so. As Clare said, part of it is that, historically, palliative care and oncology went together, so there was maybe more need for it then. As time moves on, however, we see more children and young adults surviving with more complex health conditions and more children and young adults with life-limiting conditions. We know, from data from Fraser's work in the UK that I mentioned, that numbers are increasing in Northern Ireland as time goes on. That has been extrapolated from the Scottish data. We see more and more children with those other conditions coming into hospital very sick — into intensive care. As time goes on, we see older children with complex neurodisabilities and genetic conditions — rare conditions — needing extra support around them as they come to the end of life. The services are very different for those two groups of children. I could paint you a picture of what that might look like: it would not have the same level of input from specialist nurses. There may be some access to support from hospices and hospice nurses, but, quite often, we will struggle to manage them as easily in the community, and, I would say, they are more likely to end up in hospital as they come to the end of life.

Mrs Dillon: I will be fairly blunt in what I say. Recently, I have dealt with a number of families that have children with various conditions. Specifically, this week, it was children with Duchenne muscular dystrophy (DMD).

In general, right across the board, for children with those less common conditions — not uncommon, but less common — the services are non-existent. There is nothing there for those families. Paediatricians pick it up, if the families are lucky enough to have an assigned paediatrician. Specialist consultants or specialist nurses are not there. I do not mean someone who is called a nurse for your condition: I mean a specialist nurse who has had the training specific to that condition, understands it fully and knows what to do, where to signpost families and how to support them and the children themselves. It carries on through. We have a lack of percutaneous endoscopic gastrostomy (PEG) services and surgeries. We know the challenges for families around that. There is a lack of counselling for children with some of those conditions. There is no counselling for the child, never mind for the wider family. That is really concerning. I do not think that there is any resource for that.

Could we do better? I do not say that we could have a specialist consultant for every condition. I understand that that is not always going to be possible, because how can you become a specialist if you do not see enough people with a particular condition? However, why is more work not ongoing with other areas? Where there is a specialist in the South, Scotland, Wales, England or anywhere in the world where more work is happening, there should be, for example, conference calling: "I have a child with this condition. Here is what is happening now". That happens in dental services. If I went to my dentist with a rare, challenging condition, my dentist would contact colleagues in England to say, "Take a look at this, will you? What is happening?".

Dr Doré: What you have touched on is incredibly important. We have a heavily siloed system. We have five trusts, different charities and goodness knows how many services. They are scoping them at the moment, because they do not even know the whole picture. What we really need, as I keep saying, is a change in the structure so that there is a better regional approach. The problem with having lots of microcosmic silos is that you cannot do the big-picture things because there is not enough there. It is super-specialised. You need a regional, all of Northern Ireland approach to it, rather than having lots of different, separate silos. That is so sensible and, if you got the structures in place, probably relatively cheap to do. Rather than the Southern Trust having to provide all those super-specialist services, as well as the Northern Trust and each of the others, we have to have a regional look at it. We have to take a regional direction, rather than taking the super-specialised approach.

Dr Graham: I want to return to what you said about the child with Duchenne muscular dystrophy and their family. You are probably describing the difficulties of going through the transition process, as the child gets a bit older. Are you?

Mrs Dillon: No. It is from the point of diagnosis. A number of families met the Minister this week, so he is well aware of it. It is about how and what information is given to families with that diagnosis. All of them described the process that they went through as "traumatic". The diagnosis itself is traumatic. For some of those families who were traumatised, it may not have been entirely unexpected, because the condition is genetic. They have other family members who, unfortunately, have had the same diagnosis. In some ways, that makes it harder because you know exactly what to expect, which is not always a good thing. All of them talked about how it was managed. Everything about it has been traumatic, and services have been seriously lacking. It is about that really specialist element working and having the proper training and understanding.

I have used that as an example, because it was this week. However, I find that with a lot of children's health problems. Just to be clear: they say that they fall back to their paediatricians and that they have been really good. Paediatric services have been really good. Yes, you are right: what happens when they move on? The families who were praising the paediatric services are still there, but, in the transition, they will lose that. They will then realise what it was like for the families who did not even have an assigned paediatrician for a long time.

Dr McPherson, you probably made the same point that Dr Doré has just made about that: it is the system. We will have a lot of recommendations coming from the inquiry, but is that the one thing that you would say needs to change and needs to change today? Is that the one thing that we need to change: the actual system of how we deliver palliative care right across the board? The regional point is an important one.

Dr McPherson: I have lived my whole life in Northern Ireland. I do not understand the system. When I try to get Beldoc at night, I struggle. When my father died in January, I struggled. I have lived and worked in Northern Ireland, and I struggle. Changing the system is really important. I was very junior when there was the review of public administration. It changed it all. Was that for the better? I was around when we changed the number of trusts. Was that for the better? Did that cause delay? Did that push things into the long grass for years? I am nervous about wholesale change. I am nervous about whether we will be writing reports for years and not addressing the current need. However, something has to change.

Mrs Dillon: Thank you to all of you for your presentations.

Mr Donnelly: Thank you for all your presentations. I absolutely get the passion that other people have referred to, and I get the extreme frustration. As you said, 20 years in a career, and nothing has changed. That must be incredibly frustrating to see.

I declare an interest as a nurse who was involved in delivering palliative care. I worked on wards where palliative care specialist nurses and consultants would come when needed. The difference that they made to people's lives was phenomenal. As you said, Dr White, people come in in extreme pain, vomiting, showing anxiety and experiencing distressing symptoms, and, within hours, sometimes, those people are settled, comfortable and pain free. It is amazing to see. It absolutely provides hope for them and their families. It is really important that we get it right and that we improve it.

I did have a few questions. A couple of things have already been covered by other people. As the Chair referred to, we have heard a lot of the same things again and again, but that means that they are the same issues and that the same issues are important to everybody. We are hearing the same things again and again, which means that those are the things that we need to focus on. Certainly, they will, hopefully, form the basis of our recommendations in the report.

One of the first ones that jumped out — we have heard about this before; I think that you referred to it, Dr White — are the regional DNAR forms. My understanding of the trusts is that there is a DNAR form in secondary care in hospitals and the Ambulance Service but that that stops when you get into the community. I cannot quite understand why, because, with all the other documentation, such as when somebody's medicines are changed in a hospital environment, that continues; if somebody's care needs are changed, that continues. Why does a DNAR stop? Why do you then have to put families and patients through distressing conversations and go through that whole process again, when it has already been decided? Can you shed any light on that?

Dr White: It is crazy and has been for years. That is really low-hanging fruit. Why has it not been implemented? Who knows? However, that is the way that it is at the minute. If I see somebody who is DNACPR in the Mater Hospital or in the hospice or at home, the onus is on me to discuss that again when they are readmitted. Even if you have somebody who has been in hospital and you have had those detailed conversations with them and their family and have discharged them home, you are having to say to their GP, "They were a DNACPR. Could you redo the paperwork?". Some GPs will say, "Yes, no worries" and just sign the paperwork, but the onus is on them to say that they have discussed it in their conversations, so most will say, "I know that you have already had this conversation", and the patients and families will ask, "Why are you bringing this all up again?". It is crazy. It is just a duplication. It is more work and makes the whole system more inefficient.

You would think that it should be easily fixed. I have never heard of anybody who does not want that. The frustration for all clinicians is that great plans and strategies come out, which are all brilliant, such as advance care planning and regional DNACPR, as any clinician can tell you, but, 10 or 15 years later, you think, "That is still not there", even though people have talked about it for hours and hours in meetings. That is my worry. We need to make sure that that does not happen as a result of the inquiry. It needs to come with action that changes patient-facing care — that is the heart of it — so that patients get better care as the outcome.

Mr Donnelly: Absolutely. I can see how that would help. It seems such a crazy idea that that is not in place, particularly in the community.

Dr White: It is basic. It should not be complex. Do you have thoughts on that?

Dr Doré: I was in Scotland in 2009 when it was implemented nationwide across Scotland. That tells you how far behind we are. The situation has moved on so much. Clare is exactly right: we have screamed about this for decades, and it has not been done. It has now moved on to ReSPECT documents, which are better than DNACPR because they have a chart on which you can outline whether someone wants to stay at home along with the DNACPR. The entirety of GB, Ireland and most of Europe have moved on far from where we are. When we say that we are behind by 20 years, we are not joking; we are miles behind where we should be. It is so frustrating, because we have screamed about this consistently for decades, and it does not change.

Dr White: In the past month, I heard about somebody who was known to palliative care services. It was agreed with the patient that they were not for resuscitation, and the patient was at home. When they passed away, their son, I think, panicked and called an ambulance, saying, "I do not know what to do", and the paramedics attempted a resuscitation. That is awful for the patient — obviously, it did not work— and for the family. It is also such a waste of resource. That resource could be better used. It was totally unnecessary. There was no communication between services, which meant that the Ambulance Service did not know that that person was not for resuscitation. You really rely on the family at home to advocate and say, "No, they are not for resuscitation". In that situation, a family can panic, or they may not be there and somebody else may be in the house, and it all goes wrong.

The Chairperson (Mr McGuigan): Sorry to interrupt you. We were given correspondence from the Department today about ReSPECT, so it is worth reading out part of it:

So, it has been sat on for over a year.

Dr Doré: Again, it mentions "priority": that word endlessly comes up. We are low priority. We are at the bottom.

The Chairperson (Mr McGuigan): Sorry again for interrupting, but that was important.

Dr White: If that was in operation, it would keep people where they want to be. It would keep them out of hospital and out of emergency departments. If those conversations were had, it would save money. Palliative care saves the NHS money when it is done properly. It keeps people out of already overstretched emergency departments and out of hospital beds, because it helps people to live and die where they want to be, which, for the majority of people, is at home.

Mr Donnelly: Yet we are sitting on things for a year.

Dr White: Many more years, in parts.

Dr Doré: If you look at that in more detail, the situation with the ReSPECT documents has been going on for much longer than that.

The Chairperson (Mr McGuigan): I understand that.

Dr White: It has been going on for years.

Mr Donnelly: I have two other questions. Dr McPherson, you referenced the impact of a lack of care packages and also the struggles in domiciliary care. What impact is that having on patients' ability to die in their own home?

Dr McPherson: I could give you anecdotes of difficulties that I have encountered with discharging my patients. I am told that it is not that we do not have the money for the care packages but that we do not have the bodies to fulfil them. There is therefore a delay in waiting for care packages. Please God that patients remain well enough that they can still get home. On occasions, we miss the wind or miss the boat and are unable to get people home, which is their preferred place of death. That is not a new problem, but, as we struggle more to get people home, it feels as though it is a worsening one.

I also feel that we are probably struggling more to get people into a nursing home now than we did before. We struggle to find enough available beds and beds that do not have huge top-up costs associated with them. Those are my anecdotes.

Mr Donnelly: A lack of care packages prevents people from being able to die in the place in which they choose to die. Their wishes are not being followed.

Dr White: May I add an anecdote? I had a patient in hospital quite recently who was dying slowly and probably had a few weeks left to live. We said that he needed a nursing home place, as he was not well enough to go back home. The social worker and the ward manager said that he would die with us, because there was not a chance of his getting a nursing home bed in the next five weeks. I said, "Really?", to which they replied, "Not a chance, even from hospital". A hospital bed is therefore used for that purpose for weeks because, owing to the backlog in the system, we cannot get a nursing home placement for patients. We then have people lying on trolleys in an ED, and we have the same issue in hospices as well.

Mr Donnelly: And in ambulances outside hospitals and at home while people are waiting for an ambulance.

Dr White: Absolutely.

Mr Donnelly: It tracks the whole way back.

This is my final question. We have heard again and again about the importance of taking a regional approach and about regional variations. How would such an approach improve access? Are there benefits in economies of scale? How do you see it improving access?

Dr McPherson: We need to simplify our systems and take a regional or one-team approach. We need to have a greater understanding of how to navigate one system. That would be a really good start. There probably would be economies of scale involved, but it would be good just to try to make things easier. I struggle to navigate my way through the system for my patients and to understand how to discharge a patient to different trusts, even after having been a consultant for 12 years. We are small enough that the system should be regionalised. Perhaps we could have individual trusts implementing and doing the operational work, but that needs to be driven centrally. Strategically, a central vision is needed.

The Chairperson (Mr McGuigan): It is rather depressing to hear that a senior consultant faces that struggle when trying to navigate the health system. That is a pretty depressing thing to hear, to be honest with you.

Miss McAllister: Thank you very much for your presentations and for answering a lot of our questions. Some that I was going to ask have been answered, but a few have not. Let me say from the outset that we hear your frustration and anger at the slow pace of change in policy and legislation. Hopefully, when we bring the inquiry report to the House and the Minister has to respond to the debate, it will again be an opportunity to shine a light, publicly, on the issues. Again, thank you for coming. Even though you may feel that you have been talking about the same thing for years, it is important for MLAs to hear it.

I have two questions that have not yet been asked. I want to ask David about the transition from paediatric services. In different fields of medicine, we have heard about children moving across to adult services at the age of 14 and the difficulties associated with that . Why is that happening at age 14? In palliative care in particular, why is there not a higher age limit for transition, given that palliative care and end-of-life care issues are so complex and sensitive? Have there been any requests made, or has there been a policy change made elsewhere? Is it normal in health systems for the age to be14? It is a very sensitive time for children to transition to adult services and lose all the holistic support about which you talked.

Dr Graham: NICE recommends that the transition process from paediatric services to adult services start at around that age. The NICE recommendation is to start the transition at 13 to 14 years of age. There is lots of guidance out there. There are different documents on how it should be done and how the meetings with families or people looking after the child should take place. Ideally, however, that should take place over a period of years. Part of the problem is that it is done at different ages for different services, such as moving from medical services to adult services or from child social care packages to adult social care packages. There are lots of things for people to get their head around, and that can be very challenging for the person who is transitioning and for their family.

I have seen what can happen when the transition process is not done well. For example, a child who was at home, with a ventilator and tracheotomy having been done to help that child breathe and feeding support, had a full care package at home that included nursing staff. When the child moved across to adult services, some of the transition had taken place from a nursing point of view, but, for the particular patient of whom I am thinking, there had not been any real medical transition done. That patient ended up coming into hospital when they were unwell and finding out that, because they were over 16, they could not go to a paediatric bed but had to go into an adult ward instead. That caused significant distress. As well as that, no advance care planning discussion had taken place, and there was an issue with the approach that had been taken to the family and the young person who was in intensive care. When the transition process is not done well, it can therefore be traumatic for families.

I know of a young person from another family who, on their eighteenth birthday, got a letter from the Children's Hospice that said, "Sorry, you are no longer able to avail yourself of our hospice support, because you are now in the world of adults". There is a difference between the support that is provided in the Children's Hospice and that which can be provided in the adult hospice by way of respite packages, care packages and suchlike.

I may have gone a bit off-topic. Ideally, the transition process should start at 13 or 14, and the young person should move through that process gradually. In my mind, having read different transition document recommendations, I see there being some sort of transition team in place to help coordinate that process, and to coordinate not just the medical and nursing support but the social, education, psychological and spiritual support. The transition team should think about everything. That applies particularly to children with the most significant levels of complexity, who are the most fragile of all children and young people.

Miss McAllister: I imagine that the smoothness of the process differs across trusts.

Dr Graham: Transition is not done well at the moment. It is uniformly bad across all trusts. There is a lot of talk about it and about trying to move things on. Some trusts may be further ahead than others. I cannot think of specific examples.

There are problems, however. Each trust will tell us the same problems when we talk to it. From a medical point of view, there is no equivalent to a paediatrician in the adult world. Sometimes we think of GPs as being paediatricians, but GPs will often not have had contact with a child with complex needs, because the paediatrician and all the specialists in the children's hospital will have been managing their care. When children move into the adult world, it scares the life out of some of GPs, as they have to try to be responsible for managing everything. We have not quite figured out having some equivalent in the adult world, but if there were some sort of pathway for doing that, that would be good.

In other parts of the world, such as the Republic and in the area in Canada to which I referred earlier, there is a cradle-to-grave service in which there is palliative care specifically for children and young people with the highest level of needs. Adult trained doctors will be caring for and looking after paediatric patients. Children and young people will have access to specialist paediatric palliative care consultants who will provide that extra layer of specialist support from a paediatric point of view. That is something that I have seen work in other areas, but, in order for that to happen in Northern Ireland, there would have to be a massive change from what currently happens, and there would need to be a lot of thinking done about it.

Miss McAllister: That is helpful. It is something that the Committee should definitely focus on for it inquiry report and perhaps explore further with the trusts as well. Your answer has provided me with a lot more questions about the transitional arrangements and processes.

My other question has been answered, so I do not have a second question. Thank you very much. That was helpful.

Mr Robinson: I am conscious that we have gone over time, so I will be very quick. It was Dr Alan McPherson who said that it was a "list of shame". That comment reflects what we have heard in many of the evidence sessions that we have held as part of our inquiry. It could be said that it is similar to what we have heard in many Health Committee evidence sessions. Sadly, it can sound like a list of shame when many from the health sector present to us.

Much of the theme today is about how having better funding could help. I am conscious that Dr Matthew Doré said that it is also about priorities. There is universal acceptance across most of the political parties, if not all, and from the Minister of Health, that we are not funded to meet the level of need. I have been vocal in the past in Committee about having a personal fear that we will see much of the same, even on the back of all the work that has been done and all the good presentations that we have had from many of the experts who appear before us. That is a fear of mine, and I hope that it is fear that is respected.

On the back of all of that, we all crave good news and any glimmer of hope. People have talked today about low-hanging fruit. One of the consultation responses from a palliative medicine consultant talked about — again, forgive me if my stupidity is being exposed here — a regional, individualised last-days care plan as being something that would cost little money. As you know, we all crave that glimmer of hope. Is that just a different term from DNACPR, or is that consultant framing it as a palliative care strategy? Can it be explained to me?

Dr Doré: It is different from DNACPR and ReSPECT. It is a form that highlights when we think that someone is approaching end of life — is dying — and takes a holistic approach to their care.

It is about getting all professionals on the same page and bringing them together to try to provide care for the patient holistically: psychologically, socially, spiritually and physically. The document has been hanging around for a long time. You may have heard of NACEL, which is the National Audit of Care at the End of Life. NACEL was born of the Liverpool care pathway (LCP), which was used inappropriately many years ago, as you may remember. It documented a pathway that people were put on that was one-way, so, in some instances, they did not get proper care . There was a big inquiry, out of which came NACEL.

NACEL was designed to audit a document, such as an individualised end-of-life care plan, that every patient whom we thought was dying should get. We are doing the audit but, ironically, not against the document, because, again, it has stalled at various levels. Where it has stalled is not apparent. I know that we are going over time, but I will say that I worry — perhaps this is speculating one step too far — that "good" management does not progress it further, and I wonder whether being a "good" manager, as part of the whole system, keeps people quiet, which means that these things do not go higher up and thus change is not instigated at the many levels that such things have to go through. That is just a perspective for the Committee to look at.

The issues have been raised in the Department of Health over at least a decade. We are talking about a document that would be regional, especially now that Encompass is coming in across Northern Ireland, and that would set and enable the auditing of best practice in end-of-life care for, to use the WHO definition, dying patients. That would improve care. The RPMG is looking at that, and I do not want to speak for the RPMG, but there is unanimity on its being a good thing. It is also very low hanging fruit.

I will challenge you, Alan, on priorities. I know that there is not enough money, and I find that surprising, because I also know that, through the Barnett formula, we get more per head of population than anywhere else in the UK. It is about where palliative care sits in your priorities, however. We have just heard from the Department of Health that ReSPECT was not a priority, and that is a recurring theme. Why has nothing happened? We are never prioritised. We are seen not as being essential but rather as being some sort of icing-on-the-cake service. I challenge you to find a doctor who will say that, but that is the general perception, despite the fact that, throughout COVID, the palliative care community got feedback that we were the vital service. This is our frustration: priorities.

Mr Robinson: Matthew, would a three-year — a multi-year — Budget bring some benefit?

Dr Doré: I do not know anything about a multi-year Budget, but I do know that £100,000 from Westminster did not reach the palliative care community in Northern Ireland. Rather than lots of pockets?? of money being given out, there needs to be a long-term investment plan and a regional approach. Simultaneously, as I keep reiterating, we need service specification. You need to know what the services are and accurately identify them before you can commission them appropriately.

Mr Robinson: Chair, is there merit in our pursuing with the Department what we have just discussed: a regional approach to an individualised last-days care plan?

The Chairperson (Mr McGuigan): We can ask questions, but the purpose of the inquiry is to take forward such things.

Mr Robinson: I get that, but can we do so in advance of reporting?

The Chairperson (Mr McGuigan): We can have a conversation once the evidence session is finished. Are you finished, Alan?

Mr Robinson: Yes.

The Chairperson (Mr McGuigan): OK. We will have a wash-up discussion following this session. I appreciate your giving up your time. We spent a lot of time on the session and could have spent a lot longer. I have a list of other questions that I could easily have asked and would like to have asked. We have heard excellent evidence and have your written submissions.

May I say just one thing, Dr Doré, about priorities? We are not the Health Minister or the Department. We are the Health Committee, and we have prioritised this matter. That is why we are conducting this inquiry.

Dr Doré: I really thank you for that.

The Chairperson (Mr McGuigan): You are not far down the list of our priorities. From the Health Committee's perspective, this is certainly a priority, which is why we are taking so long to listen to so many people's evidence to our inquiry. We hope to be able to produce a report that will give you hope, Dr McPherson. Thank you very much.

Dr White: Thank you very much.

Dr Doré: Thank you.