Health and Social Care Committee

Croeso, bawb. Welcome back to the Health and Social Care Committee. I move to item 3, and this is the eighth evidence session of the committee's inquiry into gynaecological cancers. In this session, we'll be hearing from representatives from Marie Curie. I'd be very grateful if you could just introduce yourselves for the public record, and your roles.

Thanks. I'm Natasha Wynne, I'm senior policy manager at Marie Curie Cymru.

Jo Hayes. I am a consultant in palliative medicine, working with Marie Curie and also Cardiff and Vale health board.

Lovely. Thanks ever so much for being with us today and for your advanced correspondence with us, as well. We've had some very powerful evidence to committee. I'm not sure whether you've had the chance to see some of our earlier sessions, but some were very emotional, I think, in terms of evidence provided to us in terms of women having a terminal gynaecological cancer diagnosis. But from our perspective, I suppose the question that perhaps sets the scene for this morning's session is is there sufficient community provision across Wales to ensure that women with a terminal gynaecological cancer diagnosis are supported to access palliative and end-of-life care. So, is that support sufficient is the question.

Are you happy for me to go first? First of all, I wanted to say thank you to the committee just for the opportunity to talk about palliative care as part of this. I can give a bit of the stats background, just to give some context of how many people this is affecting, before we think about whether community care is sufficient. We know about 450 women every year die from malignancies of female genital organs—

In Wales.

In Wales, yes. About half of those will be ovarian cancer and about three quarters of the 450 people will be people over 65. That's been quite stable, that number, over the past 10 years, but we are expecting the need for palliative care in Wales in general to increase a lot in the next 25 years, because the population is ageing, and we're expecting more deaths from dementia, but also from cancer. We're also expecting a shift from deaths in hospital to more deaths in the community, so at home and in care homes. It's important to understand the context that need is growing.

Where community care is now, we're in quite a good position in Wales with some of the data we have. DHCW, who I know you spoke to earlier, the value in health centre, part of the NHS collaborative, and some of our researchers at the Marie Curie palliative care research centre at Cardiff University have been putting together a last-year-of-life dashboard, which means we can look at, for anyone who's died in the last five years, all their interactions with the health service in their last year of life.

If we look at women with ovarian, cervical and uterine cancers, we can get some idea of how well community care is meeting their needs by looking at their interactions with unscheduled care. We pulled off the data from the dashboard for that group of patients for the last five years. You find, on average, they're having 13 interactions with unscheduled care in a year versus seven for the general end-of-life population. They're having eight emergency admissions in the last year of life, compared with four for the general last-year-of-life population, and they're spending 35 days in hospital after an emergency admission over the whole year, and again, that's higher than the general population.

So, it suggests something is going wrong with the community care available. Even though some emergency admissions will be appropriate, there seems to be something missing to support people to be cared for in the community. When you ask most people towards the end of life, they want to spend less time in hospital and more time in their usual place of residence, if that's possible.

I notice in your paper on that you said that women are less likely to want to die at home. Can you just perhaps expand on that a bit more?

This is based on some really early research that we've done, and really, there is more research needed in this area. My colleague Bethan Edwards at Marie Curie has led this really interesting project looking at the Marie Curie data in terms of preferred place of care and preferred place of death for people who used our services, and it looks like there is a little bit of a difference between the preferences of men and women.

We ran some focus groups to try and explore this. Again, this is quite small numbers of people—it really does need more research—but you hear women expressing concerns about being a burden. From healthcare professionals, we've heard concerns about whether men in a caring role are getting the support they need, whether they've been able to access it, or whether they're acknowledging that caring role. So, we've said that really, we'd like to see more of a gender lens applied to palliative care to make sure people are being given the service offer in a way that is going to meet the needs of their normal caring roles, or of their kind of expectations around whether they would be a carer or whether they would be a burden.

So, this is why, with the women and girls health plan at the moment, we think it's really important that palliative care is included in that, because we want a cradle-to-grave approach that really understands that quality of life doesn't stop just because you've got a terminal illness. We need to be thinking about it right until the end of life.

But as I say, this is quite early-days research, and really what we want to see is more research on that, so that the offer to people recognises differences that might be associated with gender or other characteristics that mean they're more or less likely to access the care that they need.

And how confident are you that sufficient capacity and planning in health and social care is going to meet future demand?

Shall I take that? We've got an ageing population, so more people are going to die, and the estimate is an extra 5,000 deaths a year in Wales. At the moment, probably about half of deaths in Wales are in hospital. That's not going to be able to continue, with the pressure on NHS services, and it's not the ideal place anyway for most people to die, in an acute hospital. So, more people are going to need and want to die at home, and nursing homes are the other area where there will be lots more deaths as we go forward to 2040.

My main clinical job, which I haven't explained, is specialist palliative care in the community for the Vale of Glamorgan, so that's what I do as my clinical role. We would look after patients who are dying, in partnership with GPs and district nurses, as a sort of triumvirate, if you like. There's lots of pressure on GP services, and so it's very difficult. There are shortages in district nursing, and difficulty with large caseloads in specialist palliative care as well. So, I would say we need much more resourcing to all of those roles to meet the needs of the population going forward in the next 10, 15 years. More people are going to need and want to die at home, and I'm not sure if we have quite planned enough for all of that.

So, you don't think there is enough planning to do that.

I think we're going to need to expand services to allow people to die comfortably at home with the support that they need.

Okay. Thank you. Members will probably dive in to a lot of what you've said in your opening comments, so thank you. Joyce Watson.

You referred to a palliative care and end-of-life dashboard and you say that will provide data on how patients with gynaecological cancers interacted—you started talking about that—particularly in their last year of life. Will it become a public, that dashboard, and can you give us any further insight into that data?

It's not our data. At the moment, it's not public. It's available to people with an NHS e-mail address, which unfortunately I don't have, so I asked a favour to be able to pull those stats today. It would be great for accountability if we did have some public sight of that data. There's a lot of work through the national programme board for end-of-life care to deliver on the palliative and end-of-life care quality statement. At the moment, I'm not sure what the performance indicators are around there. We'd hope to see some public data, so we can actually start tracking what care is looking like for people in the last year of life. But at the moment, I don't think that is publicly available.

In addition to that, it would really benefit from having some patient reported experience data in there as well, and trying to understand more about, yes, people's experiences. So, you know, was their pain managed? Were they given the support they needed for psychological, spiritual, emotional issues? So, previously, in England, there was a survey of bereaved carers that looked at those things, but we don't have anything like that in Wales yet. The dashboard isn't public, as far as I know, and there is still a bit of work to do to make sure that we have got a good picture of what's happening to people, although, these are some really positive first steps.

Okay. And could you tell us what the other research priorities for Marie Curie Palliative Care Research Centre at Cardiff University are at the moment?

Good question. So, having a look at this kind of data and systems issue is a big priority for them, and the safety of care as well. They do quite a lot of work on involving the public in research. And one of the things I know that is going to be a priority for them is around death literacy. So, actually, there is quite poor public understanding of what palliative care is and what hospice care is and what advanced decisions about care involves. And potentially, that affects how willing people are to seek out or accept that care. There can be quite a few misconceptions, and it can also create problems for when people are communicating as well with healthcare professionals—not necessarily understanding what a diagnosis might mean, not having it explained to them in the right way. So, I know that the centre are quite keen to look at death literacy in the population as well.

Okay, thank you.

Some of the other things that the Marie Curie research centre are focused on are outcome measures for palliative care patients in Wales, so, how we can evidence improvements or prove the worth, if you like, of palliative care services, which is tricky because these people are going to become worse and come towards the end of their life anyway, so, measuring improvement is a difficult thing to do. But they're working on that and they've introduced, or are about to introduce, a set of outcome measures across Wales where we can try and benchmark services, and the Marie Curie hospice in Penarth is probably going to be a pilot site for that. And also, they do lots of bereavement work, don't they, and have fed into lots of the Welsh Government national bereavement work.

Thank you. Should the dashboard be publicly available, do you think?

I don't know what the plans are about making the dashboard publicly available. I can't see why it couldn't or shouldn't be.

That's a clear answer, yes, thank you. We'll explore that, separately. Thank you. Sarah Murphy.

Thank you very much, Chair. Thank you all for being here today. I just have a couple of questions about pain management. So, in your paper, you say that women's pain is sometimes underestimated, partly due to gender bias. What evidence is there that women with terminal gynaecological cancers aren't getting the appropriate pain relief they need, where is this happening and who is responsible for addressing the pain and treatment needs of women as they approach end of life?

Shall I take that? So, I guess I might come to you, Tash, to talk about the specifics that are in your paper in a minute, but I think, as you've probably heard from lots of people as part of this inquiry, some gynaecological cancers—ovarian, for example—the symptoms are quite insidious and not very specific to cancer and therefore it might take quite a long time to diagnose—things like that. Other gynaecological cancers, like cervical cancer, for instance, anatomically, because of where it is, can give you quite complex, neuropathic pain, which can be quite tricky to manage and often needs expert help.

Who's responsible? All clinicians are responsible for assessing and managing pain in the best way that they can and working with patients as partners in that. If generalists like general practitioners, for example, or clinicians in an acute hospital struggle to manage somebody's pain, then that's what people like myself and the clinical teams I work with are for: to give expert, palliative care advice, and that's a lot of what I do. I would have that role, not only in community, but I also work in the acute hospitals in Cardiff and Vale and would see people on gynaecological wards, for example, and give advice and help to manage care.

Thank you very much.

Anecdotally, there isn't a lot of research on this. That's kind of part of the problem, and that's why we are really keen for the women's health plan and the associated research budget to cover palliative care. Last night—. Marie Curie has a stories hub, where we talk to patients and they very generously share their stories with us, and you do see, particularly before palliative care are involved, repeated stories of women feeling like they've had their symptoms minimised or they've been misdirected. It's worth noting that, for women over 65 in Wales who die from these cancers, still only three quarters of them are registered with specialist palliative care. We can pull that from the dashboard. So, palliative care are experts in symptom management. You would think for the quarter of those women who haven't had palliative care involvement, we don't know their experiences, but you can kind of make some assumptions that when they haven't had that expert input, they might not have had the level of care we'd expect them to have, so we really need to understand their experiences, and we're just not at the moment.

I think there's also a misconception, sometimes, that palliative care is just for the very end of life, whereas I'm sure you've all seen in the suspected cancer pathways, palliative care can come in quite early and help to manage people along the illness journey, if you like. We'd like to be able to provide a good and specialist service much earlier for some people.

Absolutely. Thank you very much. My final question, then, is: you also say that women at the end of life can be prescribed sedatives, rather than appropriate pain relief and question the appropriateness of prescribing opiates to women. Are you aware of any research being undertaken on women's access to pain management medications? How would you like to see this issue being addressed?

I'm not aware of any research that looks at gender differences in response to opioids particularly. Strong opioids would be a mainstay of pain relief for people with advanced and progressive cancer, and that's the mainstay of our clinical work, if you like. There is lots of research about individual people's responses to medicines, rather than assuming that everybody reacts to things in the same way, and that's targeted cancer treatments. That's the basis of those. Yes, and there was some suggestion, as Tash has already said, in the paper that Marie Curie had written, about women perhaps needing to persist more with talking about their symptoms before getting an appropriate response.

This isn't specific, necessarily, to gynaecological cancers, but again, anecdotally, just talking to bereaved relatives, sometimes opioids don't work for people, and they need to be believed it they're saying they're still in pain, even if they've had a high dose, and I have heard—. I don't know if there's a gender issue there, but I do know of the care of someone who was a woman where the family really had to advocate, 'No. She's still in pain'. So, yes, we just need to believe people and properly listen to them.

Yes. I don't feel that anybody at that point is pretending that they're still in pain, are they? No, exactly. Absolutely. Thank you both very much, and thank you, Chair.

Thank you, Sarah. Gareth Davies.

Thank you, Chair. I'm going to ask my first question in Welsh, just looking at early palliative care. It can be initiated at any point during a patient's journey and can include the psychological, social, financial, and spiritual aspects of care. What's your understanding of why some women may not perhaps be benefiting from early palliative care in the same way as men?

I think it's hard at this point to necessarily say—

I didn't hear the translation.

Oh, I'm sorry—

It's looking at, obviously—

There isn't any translation coming through here.

—end-of-life care and the point during a patient's journey, the psychological, social, financial, spiritual aspects of care, and what is your understanding of why some women may not be benefiting from early palliative care in the same way as men, possibly?

So, I was going to say, from the evidence, I don't know if we know at the moment that women aren't benefiting from early palliative care in the same way as men. We know there are some potentially gendered norms in society that might affect how people are willing to accept that care, but it really needs more research, and the research I mentioned that was published before is really a first step on that.

More generally, though, in terms of early palliative care access, there is still the misconception, even within healthcare professionals, that palliative care is for the last few months, and, as Jo has said, that's not the case. You can bring people in a lot earlier—and, potentially, their involvement with palliative care can snake in and out as their condition fluctuates—and provide that general support. And again, talking—because a lot of this is anecdotal, because this is underresearched—to some of the clinicians I know in palliative care, it's so important for gynaecological cancers to have that early involvement to prepare the whole family unit as well. And some of the gendered aspects that came out of my conversations with those palliative care clinicians were, when you think about, potentially, an older woman who has a gynaecological cancer, who might have a vulval cancer, who needs dressings changed, if she's got sons providing that care, or a husband, there are extra taboos there to do with gender, to do with women's bodies, and that early involvement of palliative care could be really beneficial to make sure that everyone's kind of prepared to not just provide that care, but to understand the emotional aspects—there's a change in relationship as well.

So, I think more research is needed, but I think it just shows the importance of early involvement of palliative care, the timeliness of it, and, where appropriate, to take a gender lens, or just to understand how other characteristics—like age, even, will affect the sort of offer of care that's needed.

Yes, and is there evidence—

Sorry, Gareth. Jo, could you just do a translation check? We'll just make sure it's working.

[TRANSLATION: 'This is the translator speaking. You should be able to hear me now. Okay, great, thank you.']

There we are. Lovely. Thank you, Jo. Gareth.

Thanks, Chair. Is there—. Sorry, I'll start again. Are women accepting early palliative care referrals, and is there data to say that there could be better steps to improving that referral process into palliative care, and ways to encourage women to accept some of those early interventions, in terms of enhancing the quality of the care that they receive once referral has happened? And, how can we best manage that in a way that's obviously respectful of the answer you've just given, in terms of how it can be a sensitive subject, and, as you said, it can be a taboo subject around body issues and things? So, with that in mind, can that, then, be translated into looking at how we can improve that referral process and get some early interventions put in?

So, there is data to suggest that lots of people who are referred to palliative care are only referred very late in their illness, and shortly before they die. And so, undoubtedly, we could be involved much earlier for lots of people. Having palliative care very early on in the suspected cancer pathway is great, but we do need enough resource, then, to be able to pick people up earlier and input into their care earlier on.

And back to your question that I didn't quite hear, to provide good holistic, physical, psychological, social and spiritual care, you sort of need a multidisciplinary team of palliative care professionals to be able to do that—so, properly resourced psychology, for example.

I think most women do accept referral to early palliative care if offered, but for some people, there are lots of misconceptions around palliative care, as we've already talked about. People may reject a referral to palliative care, because they think it's only towards the very end of their life, and either don't perceive themselves to be in that position, or haven't been informed that they're in that position, and then your referral to palliative can be quite frightening.

Yes. Do you think that comes down to, sometimes—. Because, naturally, our default method, sometimes—. We're generally quite glass-half-full minded, aren't we? Do you think that's a factor, with men and women saying, 'Actually, I'm hoping that there could be, perhaps, a treatment that would take them off the palliative pathway', if you know what I mean?

Yes. So, I think people, sometimes, see palliative care just at the end and that it's instead of oncological treatment or surgery, whereas it's not, it should be in partnership, and so there needs to be more promotion of—. I think people would benefit from much more promotion about what palliative care can do and that we work in partnership and help to control symptoms and provide support for people at any stage of an illness. There's a lot of supportive care work going on, which means that people with palliative care skills would become involved with patients who are not necessarily terminally ill and may be cured, but can help with things like pain and other symptom control, and the psychological support that they need along that journey, if you like.

And how equitable is access to early palliative care, bearing in mind that people from black and Asian minorities and different races, religions, et cetera—? How equitable and accessible is it in that sense?

Do you want to do the data bit?

We know from the wider research that there are massive inequities to do with ethnicity, and to do with age. So, I indicated earlier that older people don't seem to have the same rates of access as people of, say, working age. Socioeconomic status as well: people from poorer areas don't necessarily have the same access. Rurality is another big issue, especially in Wales. We have a bit of a data issue, in that some of those characteristics aren't always collected. So, ethnicity is a key one there. So, it's quite hard to say for definite, 'This is the size of the inequity.'

Do they tend to just be gender based on that aspect then?

No, so it all interacts—

Is it just that it's not specific enough to delve into a person's ethnic background? Is it just, 'It's either a man or a woman'? Is it quite polarised in that sense, or is there scope to look deeper into it and see how we can enhance that data on a better scale?

Yes, I think there's definitely scope to improve the data. Absolutely. And that's one of the things that I think we'd really hope was—. After the research on gender, that was one of the key recommendations, actually, that the data that's collected just needs to be better, so we can interrogate it, not just to look at differences between men and women, but just to understand, in the round, what's going on for people.

Jo, did you want to add anything?

We've got no evidence to suggest that things like palliative care are offered less to people from black and ethnic minority groups. So, there are probably lots of complex reasons why the take-up might be less. I think there's probably even less awareness of what palliative care is, and what it can do and that it might not be a scary thing that is only available to you when you're dying, in different groups of people. And Marie Curie have done lots of work to try to improve and increase access. But it's tricky, and you need the resource to continue with that. Yes.

Yes. Okay, Chair.

Thank you. Joyce, I think it is. Joyce Watson. Am I right?

Yes, you are. I just want to explore something you've said just now, and you said that access to palliative care, one of the determinants for not seeking it is poverty. You also said earlier on, and it's a fact, that older people, women, tend to die or need palliative care or end-of-life care as a consequence of cancer. So, I'm trying to link two things here. Have you looked at particularly why poverty? I link those two things because women on their own are quite likely, in the older age group at the moment, to maybe not have financial security in their own right. So, that's why I've linked those two things. So, why do you think poverty is playing a part? That's what I'd want to understand.

It's something that, at Marie Curie more generally, we've been trying to unpick over the last year, because, obviously, Wales does see high rates of poverty, and trying to understand its impact on care. So, previously, I think, there's sometimes been a perception that we need to just get everyone dying at home, but poverty, if someone's in a house that's maybe not suitable for care to be provided in, if it's cold, if it's multiple occupancy, we need to be looking at it through that lens as well, because it will really affect where is an appropriate place of care and potentially an appropriate place of death, and whether someone might need to go into hospital. It's a really tricky one, and it all does interact as well. How it interacts with gender, again, more research is needed, and I wish I could say more than that, but it really desperately is. But, yes, we know that that should be one consideration, an appropriate place of care. And because palliative care does try and take this holistic view of things, making sure people are in an environment where they can get all the support that they need, where they can do the practical things that are a part of dying as well, poverty should be something we should be considering.

That leads me on to the immense misconceptions of the terminology, quite frankly, and the difference between palliative care and end-of-life care. How well do you think that's understood by people—I can see you shaking your head—but also by the health professionals who might direct those individuals into those pathways?

So, in terms of the general public, I don't have the stats in front of me, but we did do a survey last year of people in Wales, just to understand what they know about death and dying, and what they think about death and dying, and we were quite shocked at how high the rates were of just being unfamiliar with terms such as 'end-of-life care'. It's not even that they didn't know what they mean, but they just weren't familiar with them, and it's even worse when you come to things like DNACPR—do people know what that is? Do they know how to go about it? And making advanced decisions, do people know what that means? Generally, no, most people don't. So, when it comes to palliative and end-of-life care, that's just looking at whether people are familiar; whether they've actually got the right impression if they are unfamiliar, we don't know. So, that is a massive issue. I think, as Jo has said before, that's going to impact on whether people feel like they want to have involvement from palliative care, because there's a perception that palliative care, for some people, is giving up, and it's not; it should be seen in addition to treatment, as adding value. It's about quality of life. Jo, I don't know if you've got anything to say about healthcare professionals.

Yes. I think, even among healthcare professionals, there is a perception that palliative care is only for the very end of your life. End-of-life care should be the last year of life, rather than the last few days, but then sometimes you only know the last year in retrospect, don't you? It's sometimes quite difficult to predict. So, yes, there are misconceptions amongst healthcare professionals as well and there's lots more stuff that we, as palliative care clinicians, could do to promote that.

I think, also, Cardiff and Vale health board is an example of where we have termed it 'supportive care', really, to be slightly less scary and threatening, to have much more involvement earlier on. This is focused on the non-cancer side, to be working in partnership with people who are treating patients with heart failure, and being involved at a very early stage—renal failure, liver disease and lung diseases. So, that's an initiative from Cardiff and Vale health board, which, I think, has lots and lots of potential to improve things for patients and families.

And finally from me, it is about terminology, and there is probably a misunderstanding from the outset, because if people are given a terminal diagnosis, it doesn't mean they're going to die straight away; people could have a terminal diagnosis that could go on for many years. So, is there a link between, at the very outset, what a terminal diagnosis means, and could something be done there to understand the palliative care that could help with that terminal diagnosis before we get to the end-of-life care, and is there any work being done, would you know?

So, I think using the words 'terminal illness' is really difficult and very scary for people, and probably isn't a helpful term. I think that there is work being done all the time on the ground by clinical staff to try and re-educate people, and in terms of formal education and things as well, we would always explain exactly what palliative care is and what our role might be, but we've probably got a long way to go in trying to get that concept across. Yes, it is about terminology, and I know that Marie Curie have used the 'terminal illness' phrase a lot, and it's now being looked at as to whether that's still helpful.

What's the appropriate phrase to use?

That's the question.

It's a debate that we're all having. Palliative care is about progressive and incurable disease, if you like. But, if you are a young woman with breast cancer and bone secondaries, that's probably not going to be a curable disease, but you may well be quite well for the next 10 years with modern treatments, so it's getting that across.

There we are. Thank you. Mabon ap Gwynfor.

Thank you very much, Chair. Can I check that the interpretation is working? Can we have confirmation of that?

We're all working. Yes, it is.

There we are. Thank you. And thank you for your evidence this morning, it's been very valuable, in my view. Going on a little, I just want to know your views on whether the Welsh Government is investing in the right services when it comes to supporting women with their end-of-life journey.

So, Welsh Government is supporting lots of different aspects of palliative care, and I know that increased funding for hospices has been made available in the last Government cycle, if you like. It's about how you best focus the resource, isn't it? I think resources will be best focused, perhaps, on community, because lots of people will need to die at home or in nursing homes. It's about education for generalist staff, GPs and district nurses, as well as the focus on specialist palliative care, and it's about social care as well. So, the reason why lots of people can't stay at home is because there's inadequate social care available, and social care staff, as we all know, need to be valued as an important role to have, but they also need palliative care education. So, that's what I would say about the resource. Did you want to add to that, Tash?

Yes. So, we are in a good position, in some ways, in Wales that we have a national programme board for end-of-life care with strong clinical leads. A quality statement for palliative and end-of-life care was published last year. It's very aspirational, and the work of the programme board has been very focused on doing a funding review, which is important, but it's whether, from a leadership point of view, they have enough capacity to be turning that quality statement into reality and progressing with the work streams that they need to. So, as Jo said early on, we're expecting a real rise in the number of people dying in Wales over the next 15, 20 years. The need for palliative care is going to go up massively as well. We really need a rocket behind this policy area now. So, there are good things, but it's getting the urgency there, to act on it and to properly resource it, especially when it comes to community care, as Jo has said.

Thank you. Therefore, from what you're saying now, the ambition is very aspirational, there has been progress in funding. But, given those aspirations and the needs that are on the increase, do you think that the funding in place for hospices is sufficient?

Sorry, that went off and is back on again. I think that hospices would benefit from lots more resource; palliative care across the board would benefit from lots more resource. I'm sure every aspect of everyone in healthcare would say that. But this does seem like a perfect storm that is coming to us, in that our ageing population are unfortunately not going to live for ever; most people will have a palliative care need at some point in their life, more towards the end of their life, and it's going to be a measure of the effectiveness of health and social care within Wales as to how we manage all of that.

We've got the programme board, which is trying to prioritise the focus for palliative care and how we can be our most effective, and the quality statement, to try to give us aspirational stuff to work towards. I know there are lots of intricacies and controversies about funding for hospices. In palliative care, I'm somebody that works in a hospice and an NHS employee, and work in an acute hospital. We are all trying to work together in an integrated way and work across the board.

I was interested specifically in something that one of you said earlier, that there was a lack of understanding regarding basic terms, for example, 'end-of-life care', and people just not having come across that term before, and therefore perhaps not understanding the concept correctly, but understanding the words, of course. Do you think the Welsh Government is doing enough through its strategies and the interventions they make to encourage the general population—our population here in Wales—to understand those issues, and therefore talk about death and dying and all those issues relating to that sufficiently, so that people can make the right choices for their end-of-life care? What are your views on that?

So, there are lots of issues with the terminology, as Joyce said. I think Welsh Government, clinicians, organisations like Marie Curie, we could all do much more to help the public perceptions of what palliative care and end-of-life care is and what it can do. I think, in society at the moment, death's quite a taboo subject, as Gareth said. Lots of us are glass-half-full people and we don't want to think about dying and the end of our lives unless we really have to. But, if we don't encourage those people who are unwell or elderly, have lots of co-morbidities and are towards the end of their life to plan, then crises tend to happen and people tend to end up in hospital, for example.

There's a lot of work going on with advance care planning to try to encourage conversations about what people might want towards the end of their life, to talk about what's important to them, talk to their families and put some plans in place. As part of that, people may well talk about where they may want to die, but choices are quite limited, and, as I said, we need lots of provision in the community for people to be able to die, because I can't really see other places where that can happen for large groups of people; acute hospitals won't necessarily be appropriate, and hospices have only got quite small provision in terms of in-patient beds.

Just to add to that as well, I feel that there are good things happening around having that public conversation. Dying Matters Awareness Week is something that Hospice UK run, isn't it, and there are little things that happen that are, hopefully, moving the conversation forward a little bit. But there is a massive death literacy issue. There's a massive health literacy issue in general in Wales. It should be considered a public health issue, getting people familiar with those terms so they can be active participants in their care. And that is going to take time, and it really does need a bit more focus because there are so many communication issues, where people aren't empowered, really, to be properly involved in their care because they don't know what's happening. What Joyce said earlier about the poverty issue as well; if you think about just that general literacy point, we really need to think about how we can be getting people familiar with these terms earlier on, so they can be comfortable when they think about how it's going to apply to them when they're potentially in quite a vulnerable situation. So, there's still a lot of work to do, I think.

Thank you very much. Sorry, I am aware that time is scarce. I'm on Zoom therefore can't see the communication clearly. But finally on my part, if I may, this is your opportunity: what recommendations should this committee make to the Welsh Government to ensure unmet palliative and end-of-life care needs for women—specifically for women with a terminal gynaecological cancer diagnosis approaching the end of their life—are addressed? What recommendations would you recommend?

Jo, if you want to come in on the question before as well, by all means make a start on that.

I would like to recommend that all women with gynaecological cancers who are likely to have complex symptoms or progressive disease that will shorten their life would be offered early access to palliative care, and that there’s enough resource within palliative care to provide a good service to them.

And I think, as I mentioned earlier, when it comes to the women and girls health plan, palliative care should be included in it, because it's an essential part of women's health, and we can't shy away from that. Any research budget attached to that plan as well, there should be something ring-fenced for palliative care, because I feel, like I've said so many times today, we haven't got quite the amount of research we need, but we know anecdotally, so we need to properly be exploring that. And there is just a wider point about palliative care planning as well, and making sure, as Jo said, we’re ready for that kind of explosion in need by properly thinking about the community infrastructure and how that’s going to fit around not just women with gynaecological cancers but everyone at the end of life. So, yes.

And we're very grateful to have been invited here today, so thank you. But palliative and end-of-life care was missed from the original terms of reference of the inquiry, so it's just having an awareness of you always need to think about palliative and end-of-life care.

Absolutely. I think that's come out through the evidence session and quite powerfully as well, so thank you. Gareth, sorry, did you want to come in?

Yes, thanks, Chair. I just wanted to pick up, because, obviously hearing some of your evidence this morning, we spoke a lot about Cardiff and Vale issues down here, but have you got any data or specifics on different regions across Wales in terms of getting that research and what data we do have in terms of improving access to palliative care? Because, obviously, we've got different health boards, we've got different demographics and everything, and, in terms of that, do we have that access to look at those regional differences and compare different regions and look at best practice to see where we can learn lessons and see how we can improve things in different areas of Wales?

Yes. So, I think with the dashboard that I mentioned it should be possible to look at what's happening across different localities. I think you have locked on to a really good—

The dashboard that we can't see.

Yes, that people with an NHS e-mail address can see, but I can't see and you can't see. But I think you've locked on to a really good thing about best practice as well, because there is good stuff happening across Wales, and—I'm sure you've heard this in other evidence sessions—it doesn't spread very well. So, bringing that together is a really essential part of making sure we can learn from what's happening in different places, and where it's appropriate it can spread. But we'd really keen to follow up with you afterwards so we can talk about what's happening in local areas.

Just if I may, Chair, obviously you can only speak from a Marie Curie perspective, but, looking at how you with work in partnership with maybe smaller hospices as well, because I look at St Kentigern's in my constituency, and there'll be St David's in Llandudno and there'll be many of them dotted around other parts of Wales, so is there some partnership working with that in terms of the referral process and maximising those opportunities into palliative care if the need is there?

Yes. So, Hospices Cymru brings all the different hospices together across Wales to have those conversations at a high level. I know on the ground hospices do work together really closely, don’t they, in different services.

Yes, and within the clinical communities we are in constant contact with each other. And I think, as Tasha's already said, we've got the quality statement that gives us aspirations to work towards, but how you do that in separate areas of Wales might not be the same. So, I didn't mean to just focus on Cardiff, and in fact I'm—

No, no, I was just trying to broaden the conversation.

I'm from Rhyl, in fact; I'm sorry my Welsh isn't good enough to translate myself. But, you know, the rurality in north and west Wales makes services sometimes more tricky to deliver and sometimes they need to be delivered differently. They might do more virtual working, for example.

And when it comes to those questions as well about death literacy and involving people, I'm working with Hospice UK at the moment and a photographer based up in Flintshire. So, we are collecting people's stories about what matters most to them at the end of life, and some of those have been women at the end of life, some of those have been people who cared for women at the end of life. It's not women focused, but we have got a lot of women's stories, and trying to unpick some things, like rurality or just making sure that not everything is focused around Cardiff, is really important to us as well.

Yes, thanks.

Joyce.

Have you been able—? Again, I know it's going to come back to data, but the collection of data between who will ask for palliative care more frequently, and is it more likely that a parent of a child who has a cancer diagnosis or a terminal diagnosis will ask for palliative care for their child—I'm talking about adults, of course—or is it less likely, the other way around, that children would seek it on behalf of their parents? I'm just trying to get my head around this, because you talk about an ageing population, and you're right, but the children, very often, are still advocating because of that longevity that didn't exist before. That's why I ask the question.

So, that's partly death as a taboo subject, and we're all expecting to live longer and be healthy to the very end of our life. Paediatric palliative care does exist as a separate specialty, and the numbers, fortunately, are very small in terms of children coming towards the end of their life. There is the same resistance, sometimes, from parents, though, to palliative care referral, because that means everything's bad and time is very short.

I was just going to say, thinking about adult children as well—

That's what I meant, really, was adult children.

Sorry.

I'm not sure of much research in terms of acceptability and whether it's sought out, but the research that was done looking at gender and end of life was looking at Marie Curie data, but did split under 65 and over 65, and you did find different preferences in the younger people. So, I think they're more likely to want to die in a hospice than at home. There were slight different things—small numbers in terms of the differences, so, again, it needs to be explored more. But I don't know if that's because they've got relationships with their parents advocating for them, or perhaps they're parents themselves and don't want to be at home if they've got young children so would prefer into a hospice. But age is definitely a factor that needs to be considered when you're trying to figure out what is the most appropriate care for someone, and what matters to them, because they're going to have so many other things going on in their life. Someone who's 85 might be in a very different position from someone who's 35.

Exactly. That's why I asked the question, and I'm sorry I didn't—

No, I'm sorry that I misunderstood.

—make it clear. But it would be interesting to look at.

I think what we don't have good data on—I was just thinking as you spoke—is the number of people who are offered and decline palliative care. I think that would be interesting data to have, really, and why—that's more on the research side, isn't it—why people might have declined.

Okay, thank you.

Why do you think that might be the case?

I think perhaps because of the way it is put across. We've talked a lot about misconceptions about it being at the very end of life, so not good awareness about what we actually do, and lots of us bear the responsibilities for communicating that, don't we?

Absolutely. Okay. Well, thank you for coming to us this morning and for giving us evidence. We appreciate it. We'll give you a transcript of the proceedings, but please feel free to add to anything you've said this morning if you think that's going to be helpful to our inquiry. But this was the last session ahead of us having our final session with the Minister in September, so diolch yn fawr iawn. Thank you very much for being with us this morning.

Diolch yn fawr.

Diolch. Thank you again for including us.

Item 4, there are a number of papers to note this morning. There's correspondence with the Welsh Government on dentistry and hospital discharge guidance, there is correspondence with Health Education and Improvement Wales and the UK Government on gynaecological cancers, and information received from Professor Mark Llewellyn regarding the evaluation of the Social Services and Well-being (Wales) Act 2014. So, the papers are all set out on the agenda. Are Members happy to note the papers? That's great, thank you very much.

I move to item 5, and I propose, in accordance with Standing Order 17.42, that the committee resolves to exclude the public from the remainder of the meeting. Are Members content?

Yes.

Yes.

Thank you. In that case, we'll now proceed into private session.