Official Report: Minutes of Evidence

The Chairperson (Mr McGuigan): I welcome Christine Campbell from the Macmillan cancer experience panel; Sarah Christie, national lead and external affairs manager for Macmillan Cancer Support services in the North; and Dr Cousins. This is not your first time here, Dr Cousins.

Dr Sarah Cousins (Southern Health and Social Care Trust): I am back.

The Chairperson (Mr McGuigan): You are welcome again. Dr Cousins is a consultant in palliative medicine in the Southern Trust and joins the meeting specifically to talk about regional last days individualised care plans for hospital wards.

We have 45 minutes for the session. You are all very welcome. I will hand over to you to give us a synopsis, and then we will have questions from members.

Dr Cousins: Perfect. Thank you. I will begin: we arranged that beforehand.

Yes, I am back again, this time in relation to regionalised last days individualised care plans. I had discussed that in my written submission, and I believe that it was Alan Robinson who picked up on it and asked a question. To summarise, the Committee wrote to the Department of Health to ask for an update on that. The response from the Department came back yesterday and was negative on the matter of a regionalised individualised last days care plan. That response falls short of expectations; indeed, it is stated at the top of the second page of the response that the request is not appropriate. That raises concerns about the Department's understanding of what I am asking for and what my colleagues have been asking for for a long time. The response does not align with expert palliative — medical, pharmacy and nursing — opinion or with current practice in England and Wales and, frankly, does not make sense. I am confident from my experience and that of my colleagues that this is appropriate. Three quarters of hospital trusts in England and Wales have one of these end-of-life care plans. The plans have lots of different names, but three quarters of trusts have some sort of end-of-life documentation.

This has been a useful clinical tool for many years — over 10 years now. Let me give you an outline. We are talking about documentation for hospital deaths only. About 46% of deaths in Northern Ireland occur in hospitals. That is the majority of deaths. For reference, about 4% of deaths happen in hospices, 20% in nursing or residential homes and 30% at home. The 45% figure, therefore, represents the most frequent place of death for people in Northern Ireland, yet it is where satisfaction around the dying experience is lowest. When we ask bereaved relatives, after the death of their loved one, about their experience of the death, home and hospice always rank highest for satisfaction — in the high nineties. Hospital deaths rank much lower than that at around 60% or 70%. We are talking, therefore, about a place where we have the highest number of deaths but the lowest satisfaction. We need to ask ourselves what our response to that is.

One of the key solutions is to have structured documentation to guide and improve care for patients who are dying during their last days. To be clear, that is not a recommended summary plan for emergency care and treatment (ReSPECT), a "Do not attempt cardiopulmonary resuscitation" (DNACPR) order or an advanced care plan. It is regional because, as one region, we want a standardised template that staff moving across trusts are aware of and trained from. It is "last days", because it is specifically concerned with the last hours and days, when the patient may be unconscious and the family may be holding a vigil — when time is short. I use the phrase "last days" because there is no standard definition of the phrase "end of life". According to some definitions, it is the last year of life, which does not really make sense. Professionals and the general public can be clear on what "last days" means; it is a good phrase to use. It is referred to as a "care plan", but it could be called a "template", a "pro forma", a "care bundle", an "assessment tool" or a "daily review". The document's name and the semantics associated with it are secondary.

What would really happen? To initiate the template, the multidisciplinary team, along with the patient or the family, would come to a consensus that, unfortunately, the person is in their last days and their time is very likely to be short. Nothing is definite, but we use the word "likely", stating that their time is very likely to be short. At that point, the priority is comfort and having a natural death. Remember, this is for hospitals, which is where the majority of deaths take place. It is in the hospital, and the healthcare documentation in the hospital is all computerised on Encompass, so the doctor or nurse would pull up the documentation, which is not written yet but would start with something like "People present in room", and a space to put the details; and then, "Patient goals of care", with a space to document that information. That would be followed by a prompt to ask whether the patient wishes to die at home, a prompt to guide a conversation about the practicalities of that and a prompt to review the patient's previous medication. There may be some medication that the patient can no longer take orally that needs to be replaced by a patch, an injection or a syringe pump. I suppose that those prompts are related specifically to anti-seizure medicines, Parkinson's disease medicines or anti-sickness drugs or analgesics that the patient had previously been on. There is a certain range of drugs that it is useful to replace for the patient, if they cannot swallow. There would be a prompt to ask whether the patient has been a smoker and, if they are, whether it is worth putting on a nicotine patch so that they do not experience cravings at a time when they are not fit to go outside to smoke a cigarette; a prompt to check that the not-for-resuscitation order is signed; a prompt to ensure that a natural death will occur; a prompt to ask the nursing staff about specific symptoms; a prompt to ask the family about the symptoms that they have seen in the past 24 hours; a prompt to ask the patient, if they are well enough — this is very much the final days and hours, so the patient may not be fit to respond — about their symptoms; and a prompt to examine the chart for the number of extra medications that the patient has required and whether those have been helpful for the patient.

There would be a prompt to ask about spiritual importance, saying, "Is this person religious? Did they have a faith or some non-religious hope and meaning in their life?", and, depending on the answer, to encourage the use of the hospital chaplain or the patient's own spiritual leader or something along those lines; a prompt to ask about the patient's cultural needs at this time, because there is no crime in not knowing the needs of every culture, but there is in not asking; a prompt to ask specifically about the emotional state of the patient and their family; a prompt to look at mouth care; a prompt to assess hydration and encourage oral fluids and food for taste and pleasure, if that is possible, or consider other aspects of hydration; and planned prompts to think again about mouth care, whether the medication is right and whether we are doing anything that is unhelpful to the patient or there is anything more that we should do that would be helpful. This is not controversial. I do not understand how anyone would see those prompts as controversial; they are for guiding individualised care. The prompts ask the questions. There is a structure to asking them, because they are physical, spiritual, psychological and social questions that can be structured. The response is individual, and it guides personal care and gives a voice to the patient and their family. It is about asking the right questions.

I have shared with you a teaching tool that we teach F2 or second-year doctors. A lot of what I have said is based on that teaching tool. I want to be clear and transparent with you. This is open for anyone to see. It has been put through multiple patient and user groups before being put in place. I want to show you that it is transparent. It is not just about hand-holding and being nice and smiling; it is about specific things that are required to help in the last days. I respectfully ask for the opportunity to speak directly to those who advise the Minister, because I wonder whether a multidisciplinary team of doctors, nurses and pharmacists, by speaking to the Minister's advisers, would be able to clarify a lot of the issues in the Department's response. We want to be there with service users and members of the general public and to bring a draft template for discussion to show what a plan would look like. By speaking about it openly, we could answer a lot of the concerns that the Department highlighted.

Thank you for your continued interest. I will pass to my colleagues from Macmillan.

Ms Sarah Christie (Macmillan Cancer Support): Thank you so much. Chair, members of the Committee, thank you for the invitation to speak today.

Macmillan supports people living with cancer to live well and die with dignity. I will outline five key priorities that build on what Dr Cousins said. At the heart of this are people: the population whom we serve. Our priorities are shaped by professionals and by people living with cancer; they are not the opinions of Macmillan. It is about the people who are on the front line and who receive the treatment. The priorities are grounded in our written evidence and build on the themes that you have heard in previous sessions. We believe that, alongside other recommendations, they will help to transform palliative care. They are equitable service delivery; advance care planning; community-based specialist teams; workforce leadership and stability; and prehabilitation.

We will start with tackling regional inequity. Across Northern Ireland's five health and social care trusts, we see significant variation in the palliative services that are available. In the National Audit of Care at the End of Life (NACEL), four of the five trusts reported using advance care planning processes, but their infrastructure, recording systems and team composition differed widely, leading to a postcode lottery of care quality and outcomes. Patients in one trust may receive community physiotherapy and dietician support; in another, such services are absent. There are huge variations in access to community specialist palliative care teams across trusts, and a lot of the support required by people through palliative and end-of-life care is delivered by our allied health professionals (AHPs). Still, the AHP workforce has not grown in the past 20 years. Feeding into what Dr Cousins said, we urge the Committee to recommend a streamlined regional framework to set minimum standards for each trust and ensure parity of specialist services, medicine access and support teams.

Next, we have the embedding of advance care planning. Advance care planning is not a one-off form or conversation but a process that gives patients control over future decisions: where they wish to be cared for; what treatment they want or, importantly, will refuse; and who should speak on their behalf, should they lack capacity. When done well, advance care planning reduces emergency admissions and ensures that wishes are honoured. A daughter recalled, "Because we had documented mum's wish to stay at home, when her breathing worsened, we — mum included — understood what was happening, due to breath management training from the specialist team. The paramedics did not take her to A&E; they followed the plan, and she died peacefully in her favourite room." We should not underestimate the difference that that made. We welcome Diane Dodds MLA's calls for a clinical lead for palliative care. Such a role, backed by clear metrics, would drive advance care planning roll-out, audit uptake and continuous improvement across all trusts and provide oversight of the whole system.

Next, we have the elevating of community specialist teams and AHP representation. Community teams, nurse specialists and allied health professionals, such as our physios, occupational therapists, dieticians and social workers, are at the front line in preventing traumatic A&E admissions, yet none of the inquiry sessions has included formal AHP testimony. Those people's voices are vital. They work on the front line and bring extremely powerful insights. We recommend that the Committee meet the community specialist palliative teams to hear how rapid response visits, home-based breath management and social support avert crisis. Including AHP representation will ensure that policy reflects the full spectrum of care providers.

Next, we have securing and stabilising the workforce. That is nothing new: we all know the issues that our workforce faces. It is not just a UK and Ireland issue but a global issue. Too many key palliative roles are funded by charities and are deemed at-risk year to year. That precarious model undermines service continuity, and, as charities, we risk masking the gaps in services by propping up those services and absorbing risk and harm that no one else will. Macmillan calls for the core funding of specialist nurses, allied health professionals and therapist posts in the Health and Social Care (HSC) budget and mandatory palliative care training for all primary, secondary and community staff, so that every clinician feels empowered to identify needs and initiate advance care plan discussions. Only with trained, permanent teams can we guarantee 24/7 support and avoid the distress of service withdrawals.

Finally, we have introduced prehabilitation. Beyond crisis care, we must help people live as well as possible before an advanced decline. Prehabilitation, such as breath management programmes, targeted physiotherapy and diet optimisation, can strengthen resilience, reduce symptom burden and delay hospitalisation. Evidence from pilot services shows that prehabilitation can improve the quality of life and reduce costs, yet it remains rare here.

In summary, NI has the ambition and compassion to lead in palliative care, but we need regional standards to end the postcode lottery; a clinical lead to drive advance care planning as standard practice; allied healthcare professionals and community team voices in the inquiry and in future policymaking; secured funding for specialist roles in training; and prehabilitation services embedded in care pathways.

I thank the Committee for its time. We must work in collaboration to make those priorities a reality so that every person facing serious illness in NI receives the dignity, control and support that they wholeheartedly deserve. I will now hand over to Christine, who, I know, will provide you with a powerful testimony.

Ms Christine Campbell (Macmillan Cancer Support): Thank you, Sarah, and thank you, Sarah. [Laughter.]

I have been here before in another capacity, but thank you for inviting me today.

I am a palliative care patient and have been since April 2021. You may be thinking to yourselves, "How can you be a palliative care patient since April 2021 when it is now almost July 2025"?. I had a stage IVB high-grade serious ovarian cancer diagnosis in April 2021 as a result of an emergency admission to the Ulster Hospital.

What does "palliative care" mean? People have different ideas of what "palliative care" means. A lot of people will assume that palliative care is end-of-life care, but that is not necessarily so. There is that differentiation, as Sarah mentioned. What does "palliative care" mean to me? To me, palliative care is me living my best life with cancer, living well through my pain management, through my treatment management and having a holistic approach to what I need for my overall well-being going beyond my physical symptoms. Sarah talked about psychological needs, emotional needs and financial needs — all those things. Really, palliative care, to me, is part of my human right — sometimes this is difficult to talk about.

Sarah talked about advance care needs and advance care planning. I was initially diagnosed in April 2021. I have had chemotherapy and debulking surgery, and I have had access to poly-ADP ribose polymerase (PARP) inhibitors, which helped to manage my symptoms, but then they stopped working. In July 2023, I was given a terminal diagnosis of less than 12 months. You can understand how I felt at that time and the emotions that were going through my head. I have family — brothers, sisters, children: how was I going to break the news to them? Everything was going through my head, and I just could not process anything. The district nurse came out to me, and I said to her, "I would like to do some advance care planning. What do I need to do? Whom do I need to speak to about that?". She said to me, "Oh, you don't need to worry about that. I will deal with that along with your GP. We will make those decisions about end-of-life care". I said, "But what if I don't want to go into hospital? I don't want medical intervention. I want to be at home". She said, "No, we will sort that out". It was denying me, as a patient, control over how I was living but also how I would die.

I have had a lot of issues around palliative care. I have had some really good experiences, and Sarah talked about the things that are in place at the minute from a medical point of view and from a support point of view through Macmillan Cancer Support. However, at times, I have felt that I am battling against the system. I have bad problems getting access to my GP. The usual, "Phone at 8.30 in the morning". Cannot get through. Then, when you eventually get through, "No, there's no appointments". When I was given my terminal diagnosis in July 2023, I was given it on a Monday morning. I really struggled on the Monday. I did not sleep at all. On Tuesday, I got up at 8.30 and phoned the surgery and said, "I really need to speak to the GP. I'm in a real mental struggle at the moment", and I was told that there were no appointments. I said, "Look, I really need to speak to somebody now". "Phone back at 8.30 tomorrow" was the answer.

I got into my car and drove to my GP. I went to the reception. I was in quite a state, and I explained that I really needed to speak to somebody now. They could see how distressed I was, and they said, "Look, we don't have any appointments. You were told on the phone to phone at 8.30." I said, "No, I need to speak to somebody". They refused to let me see the GP. I came out of the doctors' surgery. I thought that my legs were going to go from underneath me, and I got in the car and sat and cried. I thought, is there nobody there who will help me? After my sister phoned up and was quite vocal, let us say, to the practice manager in the GP's, I eventually got speaking to the GP, and the first thing that she said to me, without even listening to what I had to say, was, "Your sister's quite aggressive, isn't she? I need to think of my receptionist staff and protect their mental health". I said, "Well, I'm really sorry, but I'm more concerned about my mental health". When I eventually told her what had happened the day before, getting my terminal diagnosis, she apologised to me, but by then the damage had been done.

I have also had issues with getting access to my acute meds. I have taken numerous blood clots over the past couple of years. When I have been discharged from hospital, I get a — Sarah will probably know the name for it. It is like a prescription from the hospital that you leave in with your GP. When I left it into my GP's, I had been given enough anti-clotting injections for a week and was told that the GP would issue me with my prescription going forward. The seven days were up, and I still had not heard from my GP. I phoned and spoke to them, and they said, "Oh, you're not allowed access to acute meds unless you have a doctor's appointment". I said, "Could someone not have told me that?", and they could not give me an answer. I got an appointment with the GP the day after, so I had missed one dose of my anti-clotting meds. I sat down and explained to him, "Look, these are acute meds. There was a prescription. These are life-saving drugs for me at this moment in time", and I was told, "Well, you do need to see the GP". I said, "Can you tell me where on your website or in any of the information that you have available for your patients it says that this process has to be done this way?", and he said, "No, there isn't". I was able to effect change, in a way, because, after that, they listened to what I had to say, and there is now advice on the home page of the website, saying, "If you need your acute meds, this is the process that you need to follow". Anybody coming behind me will hopefully not have to experience what I had to experience: fighting to get access to my acute meds.

Anybody with a terminal diagnosis needs holistic needs assessments. As Sarah said, it is not just the treatment side of things. You need to look at what patients need at that particular time, whether it is emotional needs or whatever. There is one thing that Sarah did not mention, but I am going to raise it. My daughter is in the room, so hopefully she is not cringing with embarrassment. [Laughter.]

I went to my GP. I have had full debulking surgery etc and have been through the menopause, but I still have a pulse. I am still interested in sex, I am not embarrassed to say. I said to the doctor, "I am having real issues here. Is there somewhere that you could refer me to?", because that was one of my unmet needs. The first thing that he said to me was, "Oh, you are still having sex?". I thought, "Right, OK. Maybe I am abnormal; I do not know". We were able to have that conversation.

The advance care planning enables you to look at everything that, you and the professionals think, you will need. You may have unmet needs, but the professionals are in a place in which they can advise and guide you through that documentation. For example, I did not know the difference between a "Do not resuscitate" order and the right to refuse treatment. I did not fully understand. There needs to be information and communication to those who are in palliative care about what it looks like and information around those terms, because, as soon as somebody said "palliative care" to me, my first thought was, "I am dead. I am dying. I am not getting out of hospital". Nobody sat down and explained to me what palliative care was or what it entailed. I had to go and find that information out for myself.

In the Belfast Health and Social Care Trust, there is only one clinical nurse specialist (CNS) for ovarian and gynae cancers. She carries out holistic needs assessments for patients, but you have to request them. It is not done automatically. You get a comprehensive list of things that you might need going forward, such as counselling, access to a welfare or benefits adviser and those sorts of things. You have to tick 10. That is normal. You tick 10 of those boxes, and you are allocated half an hour to talk about what your needs are. That was fine. We filled out the form, but then she said to me, "I am really sorry. I am very busy, but I can only talk over three of those with you". I thought, "Why are you wasting my time by asking me to think about the 10 things that I need?". She then just handed me information and said, "You need to go and find that out for yourself".

What I would really like to see coming out of the inquiry is patients having more control and autonomy over how their palliative care and end-of-life care looks. I do not want someone saying to somebody else, "Leave it up to us. You have no control over it. We will decide for you". I want to decide for myself. I have decided how I have lived and how I am living. I am living beyond cancer, thankfully, at the moment, but I also want to have a sense of control over how and where I die etc. I want to see more flexibility around the pathways and criteria that enable you to access palliative care services when and where they are needed. As Sarah said, it is about avoiding people having to go into hospital through A&E. That is not acceptable. My time is precious. I do not want to be sitting in an A&E bed for 24 hours or whatever it happens to be. That time is precious to me.

I want to see less fragmented communication between a range of professionals, because there are so many professionals involved in palliative care, from physios to doctors and consultants etc. There needs to be less fragmented communication between them all, because it is confusing. I would love to go to one point and say, "Right, you are my key person. What do I need to do? Whom do I need to be referred to for this or that?". They need to push a key worker. I have now found out that my key worker is my district nurse, and I am four years down the line in my palliative care. I must admit that she is very good. She is there to coordinate any care or support and keep me informed, but that is not accessible to everybody across every trust. There should be consistency so that everyone has access to that key worker.

The big thing for me is that palliative care does not end at 5.00 pm on a Friday. That is unacceptable. My treatment has stopped at 5.00 pm or on a bank holiday a number of times. I get weekly treatment but not on a bank holiday Monday, because it has stopped and everybody is off. That affects me psychologically. I ask myself, "What if I do not get this treatment today? It is weekly treatment: what effect is that going to have on me? Is that going to give me one month less or six months less because I have missed one treatment?" There is mental turmoil that goes around that. We should look to extend the funding of the delivery of palliative care in the community. I go back to that word "compassionate". We all have a right and a role to play, but do not tell me that role, responsibility and support stops at 5.00 pm on a Friday.

The Chairperson (Mr McGuigan): Thank you all. During an inquiry — probably at the end — I always say to the witnesses that I hope that what we are doing does justice to the evidence that we hear. From your perspective, Christine, and from our perspective, having listened to you, it is absolutely key that we try to do justice to some of the things that we hear. Earlier today, we heard informally from family members whose loved ones had gone through the palliative and end-of-life care experience. We heard some positive things, but it is particularly important, when we hear the negative things, that we use this as an opportunity to fix things. I have no questions for you, Christine, but I really thank you for coming here today and sharing your experiences.

Before you gave your evidence, Dr Cousins, I jotted down a few things that I wanted to ask you, such as whether you were reassured by the Department's response. However, that is obviously a stupid question. The Minister is saying that there is no definitive data or research to suggest that the use of a template would improve the care provided to the dying person and to those who are important to them.

Dr Cousins: No.

The Chairperson (Mr McGuigan): I find that a bit bizarre.

Dr Cousins: In its coldest form, what study could you do that would prove that? You should not need to remind a surgeon, when they operate, to remove swabs and instruments from the patient's body. The surgical scrub nurse will still do a checklist and count those in and out. There are common-sense safety mechanisms in healthcare that we put in because sometimes, it is 3.00 am; sometimes, somebody is just back from maternity leave; or sometimes, someone has just transferred in from a non-Northern Ireland country. Life happens. Any evidence that I could provide would be tricky.

I have looked at the National Audit of Care at the End of Life, which looks at hospital deaths only. That has been changed and reconfigured this year. This year, it is specifically asking the question, "Does your trust have an individualised care plan template?". Is it just that, in the notes, it appears to be in some way individualised, or is there no template and the plan is not individualised? I am one of those people who try to mark those and make that value judgement. It is hard to make those value judgements. What I understand, however, is that what is coming out of the early data suggests that about three quarters —75% or more — of the hospitals in England and Wales that have been looked at have that template. That has been in place for over 10 years and is common practice. Safety mechanisms are there to prevent a problem, and that is common sense.

The Chairperson (Mr McGuigan): In your opening remarks, you mentioned the advice that the Minister is getting, and you made a suggestion. What would you ask us to do when we go back to the Minister?

Dr Cousins: I do not know who the right people are to speak to. I would hope for a multidisciplinary group of nurses, pharmacists and doctors — those are the main ones that I can think of for those key last days — with patient representatives. We will have co-created a template, having looked at the other templates' assessment tools or whatever you wish to call them from elsewhere and will be able to say, "This would be reasonable and would help in hospitals". We are not saying that there should be some sort of legal requirement for every doctor or nurse to use the template, but it would be available to them as a helpful tool. It would assure the professional that they were providing a good standard of care. It would also provide families with the assurance that an excellent standard of care — a hospice-level standard of care — is being provided in a hospital where home or hospice care was not possible.

The Chairperson (Mr McGuigan): Sarah, you are clear about asks. We thank you, and we appreciate that. How frequently are cancer patients redirected to A&E or out-of-hours GPs, and what factors contribute to that?

Ms Christie: There are significant issues. We have touched on them already when it comes to having an advanced care plan. Number one is understanding people's wishes and where they want to be. When those community specialist palliative care teams have interventions with dieticians, for example, that can stop spikes in dehydration, which is a main cause for a person ending up in A&E. It is also about pain management. Access to medication is a huge issue. Recently, a colleague of mine who is, sadly, terminally unwell was trying to access their pain meds. They were getting pain meds every six days. Christine has already talked about the issues with primary care. They phoned their GP after that first six days and said, "I'm going to run out of medication. I'm in an awful lot of pain". They were reassured that the medication would be there that afternoon, but, when their sister went to that GP surgery, it was closed.

The Chairperson (Mr McGuigan): I said that I was not going to ask Christine a question. This may not be directly for her to answer. I found some of what she said a bit bizarre. I do not completely understand the system, but I would like to think that, if I were given a terminal illness diagnosis, one of the first people to be informed of that would be my GP. Is that not the case? Should that be the case?

Ms Campbell: I had to tell my GP that I had a terminal diagnosis. He had not received that information. That was in July 2023. That may have changed with the roll-out of Encompass; I cannot speak about what things are like at the moment. Then again, have all GP surgeries adopted Encompass?

Mr Donnelly: No.

Ms Campbell: You can understand how stressful it was for me, almost having a breakdown in the doctor's surgery and then having to tell him, "I've been given this terminal diagnosis. This is why I need to speak to you urgently".

The Chairperson (Mr McGuigan): GPs told us recently that end-of-life care in particular is their priority and that they will drop everything etc. You would expect them to know that information.

Ms Campbell: Philip, I am laughing, but I should not be, because this is my life and my experience. I have been told numerous times by my GP that I am red-flagged and a priority patient, but, at 8.30 am, I still get told, "We have no appointments left".

The Chairperson (Mr McGuigan): That is pretty disturbing.

Mrs Dodds: Thank you for the presentation, and particularly for the contributions from Christine. It is never easy to present, but that was very powerful.

I am sorry to plague you, Christine, but there are a couple of things that are worth focusing on. We heard earlier today from people who have recent experience of palliative care and how it works. It seems that, unfortunately, it is a bit like much of the health service: you have to go searching for information. You would think that, when you are given that awful diagnosis, everybody will come out of the woodwork, and you will be swamped with information and help. Today's testimonies tell us something different. You spoke specifically about end-of-life care and end-of-life plans, but those testimonies also tell us about the need for some kind of coordination and information for patients as they go through that journey. Maybe you will say a bit more about that. It is not necessarily only for those who have a terminal diagnosis and face an immediate issue but for those who are on that journey, which, as you said, can last however long it lasts.

Ms Campbell: Communication and information are key in advising people and giving them choices. It is that old cliche: you don't know what you don't know. Through my experiences, I am vocal when I speak to women's groups in telling them about ovarian cancer and raising awareness of it. I will tell them about how they can access the wig service or counselling, for example — things that they may not know about. One of the really key things, which is so simple, is having access to a Radar key. A Radar key gives someone access to disabled toilets. So many people to whom I speak know nothing about that, but it is important for somebody in palliative care. Unfortunately, I had bowel and urinary problems. Having that information or, maybe, an information pack to give to someone when they have been given a terminal diagnosis is important. Not everybody wants to know that information — I can understand why — and it may take people a while to process it, so it is important that they have access to information as and when they need it, whether that is through a website or a leaflet or by being given a number for Macmillan Cancer Support. It is about having the information there for when they need it.

I got my terminal diagnosis in July 2023. I was given treatment to manage my symptoms and the pain. That finished in February 2024. I had an appointment with my oncologist, at which she said to me, "There is nothing else that we can do". I am stating that bluntly; it was delivered better than the way that I am delivering it to you — sorry — but there was, more or less, nothing else that they could do. I came out of the room, and no one was outside that room to whom I could talk or who had made contact with me.

There is a disconnect in how the service is delivered. It is not always consistent. There are people who have had a really good experience, and, yes, I have had a good experience of parts of palliative care, but I want to see those issues addressed. Information is key. We need to give people information as and when they need it about what palliative care looks like, what you can do to empower yourself and make what you want to see happen and how you engage. Sometimes, medical professionals talk at you rather than talking to you or getting your opinions. No disrespect to Sarah. [Laughter.]

Dr Cousins: I am sorry. I have to apologise on behalf of medical professionals.

Ms Campbell: I am just saying that it sometimes comes across as if you are being spoken to rather than someone taking into account what you feel. If you had the information, you could look at it as and when you needed to and say, "Yes, I can contact Macmillan" or "I can contact such-and-such. They might be able to give me a bit more information". It is also about removing the stigma about palliative care and end-of-life care. As soon as somebody said, "You need palliative care", I thought, "I will not get out of this hospital. That is it". That is the thought that went through my head. Information is needed around what palliative care is and how it differs from end-of-life care.

Mrs Dodds: That is very powerful. It is for all of us to remember that we are talking to a person, not a disease. You make a really powerful point. We all, not just clinicians, could benefit from remembering that point.

The last thing that I want to talk about — I have a bee in my bonnet about it and have talked about it many times — is regional inequality. There is a really big problem in Northern Ireland. We are a small population — fewer than 2 million people — but we deliver things so differently. We may be able to deliver emergency drugs in one trust differently from another trust and so on. That is why the planning that you talk about is important. However, it is also important that we force the Minister and the trusts to adopt a policy that, no matter where you are, whether in Coleraine or Banbridge, you can expect the same care delivery. That may be more of a comment than anything else. It is one of the issues that our inquiry really needs to focus on, along with how we make the Department responsible for that coordination. I do not know whether you have any comments on that. It is really poor that we do not have that in Northern Ireland.

Dr Cousins: I do not know why it is not a priority for the Department to improve standards regionally. Specifically on the "last days" documentation, is there a concern about what the general public would think? Is there a fear? I find that the general public — Christine, you are an example — are pragmatic and sensible about the realities of life and death. Is there a fear that the public would, in some way, not understand a regional approach or a standardising of care? That is just not true.

Ms Campbell: May I jump in there? If the basics are there across all trusts, that can be built on, but, sometimes, each trust has its own interpretation of what the basic need is. There needs to be some sort of documentation written-down — not a policy, but something to say, "This is a basic need".

Dr Cousins: A standard.

Ms Campbell: Yes, a standard. Exactly. You had the words; I did not. There should be a standard that each trust could build on, depending on the needs of the population in that area.

The Chairperson (Mr McGuigan): I jotted it down when Sarah was making her contribution. She said that there should be minimum standards. That is what we are asking for. The minimum standards should be pretty high.

Mrs Dodds: Thank you. You are a powerful advocate.

Mr Donnelly: Thanks to all three of you for your presentations. They were all very powerful. I declare an interest as a nurse who has delivered palliative care for many years in the Ulster Hospital. I am familiar with all the issues that you raise. Certainly, we, like everybody who works in the health service, want to deliver the best palliative care that we can and want the patient and the family to be as comfortable as possible in those last few days.

It struck me, Dr Cousins, that what you were saying about the standardised approach is like an update of the Liverpool Care Pathway plan that we used to have, which was gotten rid of. In spite of some of its problems, it worked, because it had that standardised approach. Everybody was familiar with it. That is the sort of thing that we need. We use a standardised approach for lots of other conditions: the Glasgow Modified Alcohol Withdrawal Scale (GMAWS), malnutrition universal screening tool (MUST), the Braden Scale. There are tools that nurses are all familiar with. They are all regionalised and standardised to make sure that nothing is missed, nothing is omitted. When you go through a checklist and you go through everything, nothing can be omitted. That is important in this situation.

Dr Cousins: The Liverpool Care Pathway had some problems: I can list them for you. It had a problem with its name, because it implied that, once your name was on that documentation, you did not come off. We know that that is not true, but the name certainly did not help, and I may have alluded to something of the semantics. We would propose something useful, if it appears that the last days is likely the situation that the patient is unfortunately in. However, none of what I said is fixed or definitive in any way: if their condition improves, there is re-evaluation and hopefully, recovery.

Another problem with the Liverpool Care Pathway was a specific misunderstanding about food and fluids. The advice from our dietetic and speech and language colleagues now is very much that food and fluids are for taste and pleasure — enjoyment — if swallow is poor and someone is at a low ebb or very weak in the last days. There is also a lot more evidence about the role of drips of artificial fluid in managing, perhaps, delirium. Ten years on, we have evidence that would have helped to avoid those problems.

The third thing is training. It was almost unheard of 15 years ago to have all your training and education online in a standardised package across a region. Now that is standard, so everything — haemovigilance or blood safety, infection control and more or less every regional aspect of training and teaching — is provided by Learn HSC. It is standard to create an interactive learning platform to which staff will go at their convenience to go through the tests, videos and all sorts of other things that are embedded and then receive a certificate of completion of the training. That was unheard of 15 years ago.

Some of the challenges that the Department commented on are not there any more, but the finer details of that can be discussed. We are talking about something that has been used in England and Wales in various forms for more than 10 years with great success. Perhaps the Department is not aware of that updated information and is working on outdated data.

Mr Donnelly: I can certainly attest to the training regime's having changed dramatically. I have sat in front of computers for hours doing those courses. Everybody does the same ones, and we are all familiar with the same processes. A lot of things are being done. When "comfort care" is documented in somebody's notes, it will be given, but there is no standardised programme, and that is the thing.

Dr Cousins: It relies on the clinician's experience: they might have just qualified, or they might work in a ward that does not see as many deaths as other wards. Deaths do not occur on wards in equal numbers, of course. It is about standardising across wards and hospitals so that, wherever you find yourself in hospital, you will know that somebody in a hospice has looked at the template and said, "Yes. This would elevate the care towards the hospice level that we aim for on our wards".

Mr Donnelly: What difference would that make to the patient and the family?

Dr Cousins: In terms of a template?

Mr Donnelly: Yes.

Dr Cousins: We want the care to be individualised and personalised, but, to do that, we need to give the patient and their family a voice, so we need to ask the right questions. We use the template to ask the right questions. As I said, the questions on physical, social, sexual, spiritual and emotional needs are fairly standard: the answers that come back are personal. It is the equivalent of a birth plan at the other end of life. A woman's birth plan is individualised and unique. Are you telling me that we should discard the midwife's templates that are used to check for domestic violence and all the other checklists that the midwife goes through? Are you telling me that caesarean section checklists in theatre should be abandoned because we want to focus on individual and personal care?

Of course we want to give individual and personal care, but, to do that, we need to give the patients a voice. Christine is, perhaps, unusual in that families and patients do not volunteer information until they are asked. I recently asked a husband, "Is your wife religious? Is religion important to her? Does she have a faith?". His answer was, "No, no, no", but there was a pause. As you know, when there is a pause, you can jump in or you can wait, and I chose to wait. For her, it was about crystals. When she was awake and alert, she had crystals everywhere; that was a huge source of comfort. It does not always have to be about religion; it is about bringing in sources of hope. If I had not asked the question, would the husband have felt encouraged to phone his sister to ask for the crystals to be brought in and put in his wife's hand so that she could have that comfort? No, because this is healthcare; this is authority; this is an unusual and alien environment for people. This is to give people a voice, but we do it through the process of asking and directing others to ask through a template.

Mr Donnelly: Thank you very much for that. Christine, I have heard you speak several times over the years, and it is always incredibly powerful. You are a huge advocate, especially at this time. It is fantastic. Thank you.

Ms Campbell: May I ask a question? Danny, you said that you come from a palliative care background: is there formal training for those from a medical side who participate in palliative care? Is there formal training like an NVQ? Is there specialised training for you, or was that a role that you grew into and were interested in and therefore took forward? Are there professional qualifications for palliative care?

Mr Donnelly: There are specialised qualifications. My background is nursing, and I worked on a lot of hospital wards where people had terminal conditions, went through palliative care and passed away. There is a palliative care nurse, which is a specialised designation for which you can do extra training, and they are amazing. They really are fantastic. When they come to assess a patient on the ward, the comfort that they bring to the patient and their family is phenomenal and highly valued. Their expertise and knowledge are incredibly valued.

Ms Campbell: Thank you for that.

Mr Robinson: Thank you all for your presentation.

Christine, I have said multiple times at the Committee and in the Chamber that personal testimonies always add value, and you have certainly added value to our inquiry today, as have those whom we met this morning.

Dr Cousins, I have found you to be a breath of fresh air. Sometimes, people from the health sector come before the Committee, and you can see that there is a reluctance to volunteer ideas for fear that, in some cases, they are in contention with the Department. Therefore, we very much value you.

Dr Cousins: Maybe they are wiser. [Laughter.]

Mr Robinson: No, I would dispute that.

Diane mentioned regional inequalities. On 12 June 2024, exactly a year ago, the Minister said that one of his priority areas was regional inequalities, and here you are proposing something that would help to address those. There is an irony to the Minister, on the one hand, telling us of his priorities and, on the other hand, giving a response like that.

The Chairperson (Mr McGuigan): Thank you very much. Your evidence is really appreciated. As I said, I hope that we can do justice to all that we have heard. Thank you.

Dr Cousins: Thank you.