Speaker1: [00:00:00] We are all going to die. People doing bungee jumps and zip wires. What is a natural death? 44% of people dying in hospital. £8 billion to Treasury in lost revenue. We're surviving things that previously, only a few years ago, relatively, would have killed us. We need to talk about death. And you know what is the process that people go through when they are dying? 88% of people feel alone in their grief. Not a lot of people have the specialist knowledge. 1 in 5 people will die within 24 hours of getting into hospital. 

Speaker2: [00:00:31] Voices of Care, the healthcare podcast.

Speaker3: [00:00:35] James, welcome to Voice of Care. Really good to see you.

Speaker1: [00:00:38] Fantastic. It's great to be here.

Speaker3: [00:00:39] And a belated Happy New Year, if I may say so.

Speaker1: [00:00:41] And Happy New Year to you. It's great. Great to be with you. And thanks for having me on.

Speaker3: [00:00:45] No. It's great. When we first started talking some months ago, we discussed this whole topic of society not talking about death enough. And I think it was Lord Darzi in his report who said that it's time for society to restart the conversation about how to die well with dignity, compassion and preferences respected. We've had the assisted dying legislation and debate all before Christmas. Did that help bring that discussion to the fore, particularly with the focus on end-of-life and palliative care? 

Speaker1: [00:01:15] I think what we've seen obviously over the last few months with the assisted dying debate is a much stronger conversation in society about death and dying. But as you say, we're still not where we need to be in terms of embracing the fact that, you know, we are all going to die. And despite the wonders of the NHS and the marvels of modern medicine, unfortunately, you know, death is something that we've got to face. And actually, it's, you know, societally it's very strange still to talk about people having a good death, which is possible with the right planning.

Speaker3: [00:01:49] Sounds like an oxymoron. 

Speaker1: [00:01:50] It does, of course. But, you know, we need to embrace the fact that unless we are talking more about death and dying. Unless we're giving people the opportunity to plan effectively, providing the right sort of support and services for people. We can make a big difference to their lives. We can make a big difference to their family's lives. But also, I think increasingly we need to acknowledge the impact that that has on wider society and on the NHS.

Speaker3: [00:02:18] Absolutely. And that support, end-of-life care, hospice care, palliative care. I think the stats are quite shocking. I think it was over 100,000 people each year die with unmet palliative needs. So, it's a really big pressing issue that affects a large growing part of our population. 

Speaker1: [00:02:37] Yeah. And it's possibly even more than that, actually. The analysis shows that about 90% of people would benefit from palliative care, but only 50% of people receive palliative care. And certainly, that's a lot lower when you look at specialist support as well. So, we're not meeting the needs of people effectively. And, and that is a real concern. And you mentioned the assisted dying debate. The interesting thing there from our analysis was that 77% of people were worried that the lack of effective provision for palliative and end-of-life care and for end-of-life care support could force some people into seeking an assisted death because of that lack of support. And really interestingly, of those that were supportive of assisted dying that figure rose to 84% of people that were concerned about that fact. So, I think the assisted dying debate hopefully will lead us to a better conversation in society around the need for effective support for people and open up the conversation about how we put that provision in place. 

Speaker3: [00:03:46] And I think, obviously, hospices play a very important role in terms of end-of-life care by definition. And I think, the House of Lords looked at this question in October last year. I think Hospice UK talked about a £60 million shortfall of funding. But some good news, I think to come out of the assisted dying debate was, as you say, bringing this to prominence. You were very pleased, I think on record, Wes Streeting, Mr. Kinnock, Stephen Kinnock, some significant funding, £100 million plus to support hospices.

Speaker1: [00:04:17] Yeah, absolutely. I mean, the Secretary of State and the Prime minister actually committed prior to the assisted dying debate that they would look at the issues faced by the hospice sector. And they committed, before Christmas to come back with an offer and to try and fix that. And I welcomed the announcement that £100 million of funding, in what I acknowledge is a really tricky financial circumstance for both the country and for the NHS. So, to commit that money to the hospice sector, I think is a really great welcomed announcement. And that's going to enable us to seek to make the changes that we need to help modernise the service and ensure that we can be supporting even more people to die well. And the hospice sector is, you know, amazing and diverse with independent hospices and organisations like my own at Sue Ryder, 80% of what we do is already in the community. And whilst we've got specialist hospice care with inpatient beds, the majority of work that we do is in people's own homes, which is where people tell us that they would like to be supported to die. And, you know, this funding is really welcomed to enable us to continue to do that great work.

Speaker3: [00:05:33] And it's actually an imperative anyway, because again, the stats, I think was your stats, I looked at, the palliative care needs or the demand for palliative care is set to increase by something like an eye-watering 50/55% in the decade from 2021. And I think the number of deaths per annum is going up from 650 to 780,000 over the next decade or so. So, it couldn't be more timely. 

Speaker1: [00:05:56] Well, absolutely. I mean, if you look at the success that we've had over the last sort of 75, 76 years since the, you know, the birth of the NHS in 1948. You look at life expectancy and we know that life expectancy has shifted. We're living 10 to 15 years longer than we were. And life expectancy for men was about 65 years in 1948, 67 years for women. And we now have life expectancy that's over 80 years. But those additional years are lived with an increase of multi-morbidity of long-term conditions and complexity in people's lives. Because of, you know, the advances in medicine, the advances in care and support, in things like vaccination and the ability for us to do amazing things like transplanting hearts and lungs and treating complex cancers. We're surviving things that previously, only a few years ago, relatively, would have killed us. But the survival of those things is meaning that people are living with that complexity in their lives. And actually, palliative care, the nature of palliative care is well suited to support people in society that are living with that complexity. You know, those people in later life. And actually, you know, the approach of palliative care, the approach of supporting people with symptom management, supporting people to live as well as they can regardless of what condition or disease they're living with, I think can be applied in a significant way to society that that will transform people's lives. 

Speaker3: [00:07:30] Absolutely. Now, Sue Ryder has been really a talisman for all of this type of care for over 70 odd years, 1952, I think 100 years last year, celebrating the birth of Sue Ryder herself. Just before. And congratulations on your appointment. I think it's been a hectic five months up and down the country, and personally, I'm a big fan. We had palliative care to support my father when he passed away, and we have Sue Ryder on our high street, so I'm a big fan of that. But this is an area which is also before we talk about Sue Ryder and your role there, which is very, very close to your heart because the last decade, I think you've had a national role at NHS England.

Speaker1: [00:08:08] Yeah. I was in NHS England for almost ten years. I was the national director of community health services and personalised care. Introduced social prescribing to the NHS as part of the NHS long-term plan and worked on how we could support people more effectively by designing services around them, you know, giving people choice and control over the way their care was planned and delivered based on what mattered to them. And that was a really strong mission that I had really to help transform the NHS and was really pleased with the fact that our plans for personalised care. I ended up reaching 10.8 million people, which was way beyond the 2.4 million that we fixed as an original target within the long-term plan. And, you know, prior to that, I was the chief exec of the Independent Living Fund, supporting disabled people to live independently again by focusing on choice and control. So, the privilege now to take that passion into the palliative and end of life care space, to support people, to enable them to, you know, have the best possible life that they can have, is obviously a real motivator for me in this new role.

Speaker3: [00:09:19] No, absolutely. And tell us a little bit about the scale of Sue Ryder. I think something like 672,000 hours of end-of-life care. And I think the mission is the one that caught my heart, which is that no one should die or grieve alone.

Speaker1: [00:09:33] Yeah, absolutely. I mean, you know, that's a really straightforward, simple mission that hopefully everybody will agree with. Not easy to do. No one should face death or grief alone. We know that. And that's what we'd want for people that we love, people that we care for, and that's what we want for ourselves. You know, Sue Ryder has got a long record of successfully achieving that for people, whether that's in one of our specialist hospices across the country. We've got six key locations that we operate from, or it's within our community services, our community nursing services, also our national grief and bereavement services as well that we offer. But as well, a lot of people will know us from our high street presence. As you mentioned, we have we have around 400 shops across the country. And actually, those shops are serving local communities with goods and services and also providing advice and guidance to people as well, which gives us that opportunity of actually touching people's lives in various ways.

Speaker3: [00:10:39] Absolutely. Now you've got a number of campaigns that are close to your heart. Giving voice to people who are dying and grieving is one of them. But I wanted to touch upon the campaign that you have, in terms of fairer funding for end-of-life and palliative care, because maybe you can unpack that a little bit for people, because I found it remarkable that only a third of the funding, I think, here comes from the government. The rest is through fundraising. Quite significant numbers. I think the all-party parliamentary group, looking at end-of-life care in its report back in a year now, January, said this carried huge risk because obviously it's not certain. So, tell us about your campaign for fairer funding and where does that sit? What's the big ask?

Speaker1: [00:11:25] Yeah. The funding situation is really challenging. I mean, there's not many parts of the health service that are funded on just the 30% cost recovery basis. I mean, if you look at most other services and how they're contracted, you know, that certainly is a very unique funding model. And that 30%, you know, whilst that's an average, that masks the fact that some hospices receive a much smaller percentage than that. So, as a palliative care sector, we are having to raise huge sums of money every year in order to continue.

Speaker3: [00:12:01] 600 million. Is it more than that? Around 600 million?

Speaker1: [00:12:03] Yes. Across all of the work that goes on. I mean, it costs just over £1 billion to run the palliative care sector. So, you know, it's a huge sum of money for something that actually, you know, is going to happen to all of us. And as I said in the stat, 90% of people may benefit from palliative care at some point in their lives. So, it's a real challenge. And obviously, you know, as an organisation, we have fantastic supporters. I mean, we couldn't do our work without the amazing volunteers. We have over 6000 volunteers that support us. And then our fundraising activities, which involve twilight hikes and walks and people doing bungee jumps and zip wires and all sorts of creative and exciting things across the year within our calendar that enable us to raise money. And alongside that, all of the people that support us by buying a second-hand goods and new products that we sell in our shops as well. All of that money goes to contribute to people's direct care. And I mean, that's amazing, I think that whilst it's a challenging funding position, it's also an amazing statement on our society, isn't it? And just how prepared we are to really support this really important cause. 

Speaker3: [00:13:26] Absolutely. And just want to take the lens back a little bit. I know your passionate interest in social care as a sector very broadly. We've got an independent commission announced, it was going to report in 2028. I don't think it's going to cover end-of-life care. I'm not sure. But there's a bigger picture around funding for care in the community within social care provision, isn't there?

Speaker1: [00:13:47] Yeah, I think there's a huge challenge here. When you look at the infrastructure of social care and we know it's been well written about now around the deficits that exist. And actually, I think, you know, the real challenge within health and social care is how we can move care from downstream emergency transactional care to support that's upstream, that's there in a more preventative basis. And actually, you know, that's a big challenge for the ten-year plan for the NHS and for the commission, the independent commission that's going to be looking at social care. I mean, for me, it's always been about the opportunity to get to people much earlier in their health trajectory. You know, how can we rather than spending money on the 75-year-old that's falling over and regularly going into hospital as a consequence of regular falls and deterioration, how can we get to that person when they're 55 and they're starting, you know, developing long term conditions, developing care needs? How can we support them at that point so that they can actually prepare themselves and they can manage their life and manage their health in a way that prevents them becoming that statistic in later life? And when you look at the challenges at the front door of A&E departments and the challenges that we're seeing this winter that the ambulance service is having a lot of that is due to the lack of upstream support. But there's a huge I mean, it's a huge challenge of how we deliver both issues at the same time. Because of course, we also need to support people in hospital at the moment as well.

Speaker3: [00:15:25] Absolutely. Well, it'll be interesting to see what submissions are made to that commission. And of course, the ten-year plan, which we're going to come on to because I think you've got some very passionate views. Just before that, I wanted to cover part of the work that you do at Sue Ryder around grief and grief support. I think it was the national strategy for end-of-life in 2008 said that how we care for the dying is an indicator of how we as a society care for all sick and vulnerable people. The importance of grief support. I wonder if you could tease that out, because I think the stat shows that for every death, there are nine people that are affected by grief. And this forms a huge part of the work that you do. I was really moved by I think it's Debbie's story that said grief is a journey, a journey without end, which is on your website.

Speaker1: [00:16:12] Absolutely. I mean 88% of people feel alone in their grief. And, you know, we've all experienced grief in our lives, and we know that that affects us in very different ways. And actually, when you look at the impact of grief on society. It's also hugely costly. Whilst we can't fix all issues, you know, £23 billion is the estimate to the UK economy and £8 billion to Treasury in lost revenue as a consequence of grief. And, you know, we've just launched a new campaign, which is grief deserves better. And because we think it does, we think that we need to have a better conversation around grief. It comes back to what I was saying around death and dying, actually, if we start embracing better conversations around death and we start embracing grief more openly, we will enable people to cope better with grief and with bereavement. And I think that will, you know, not only support those individuals but actually bring about some big changes in society as well. And we offer comprehensive services that are all free, that are based on the charitable income that we raise whether or not that's support on online communities because peer support is really important. So, we've got a really extensive online community.

Speaker3: [00:17:40] Thousands of hours of online bereavement support.

Speaker1: [00:17:42] Thousands of hours. Yeah. With thousands of people involved in that as well. And actually, talking to people that are going through the same experience as you are is really, really powerful for people. And we also launched last year our grief kind spaces where we have people meeting in garden centres and hotels, football clubs across the country to talk about their grief. And we have lots of online resources as well. If people search "grief deserves better", they'll be able to see those resources. And obviously, professional counselling is also part of that, of that whole picture. But I think, again, it comes back to the fact that, that we need to talk about death, and we need to talk about grief.

Speaker3: [00:18:31] Can we learn from other societies perhaps?

Speaker1: [00:18:33] We probably can. I think there's, you know, there's lots of there's lots of things we can learn from other societies, other cultures around their openness to celebrate death as part of life rather than be fearful about it. And, you know, whilst this is, you know, a deeply tricky topic for people. We've got to get over that because unless we do, we are facing that really stark statistic that 88% of people are going to feel alone. 

Speaker3: [00:19:02] And I guess there is hope here, the brilliant work that you and others are doing in the sector. But I think you brought it out in a conversation which if we go back, turn the clock back 2 or 3 decades, I can remember that far back quite easily. The dreaded C word, cancer, or mental health. They were very hush-hush conversations, but today people speak very openly. So, I guess that's the trajectory part of your campaign for death?

Speaker1: [00:19:27] Yeah, absolutely. I've thought about the same thing if you think about that. You know, I can remember that growing up in the 70s and 80s, it was the C word. We used a lot of euphemisms. And I wrote recently about the euphemisms we use around death and dying. We avoid talking about death. We talk about passed away. There used to be euphemisms when I was a child about kicking the bucket and pushing up daisies and anything to avoid the fact that somebody had died. And actually, we shouldn't be afraid of a word. And the difficulties that we have in talking about it, I think will have that knock on effect of people not planning effectively for death. You know, we know that those people that have an advanced care plan, that have a will, that have lasting power of attorney, you know, that have all of those things in place that can support people, they will have a better death. And, you know, some of the stats show that people that have a plan, have a care plan in place, have much fewer visits to A&E in their last 12 months of life. You know, you can reduce the number of visits that people are having in an emergency if they've made an effective plan. And, you know, nobody wants to be bouncing in and out of hospital, as we see a lot that creates those problems as well for the NHS. Nobody wants that for themselves or for their loved ones. So, you know, again, that comes back to having a better conversation about it.

Speaker3: [00:20:56] Well, that leads me very nicely onto the last part of our conversation, which I think is really interesting. We have a ten-year plan in the offing for the NHS. Another one. The assisted dying debate definitely brought this whole issue of end-of-life and palliative care, and hospice care to the forefront. And you've been very vocal. Sue Ryder has been very vocal in advocating the need for a change in the way, as you've just talked about empowering patients, I think you've delivered a five-point plan. I was really fascinated about the 43% of people who die in hospital, and a third of inpatient care is devoted to people in the last year of their life. You've got quite a radical plan for a radically different population, I think you put it.

Speaker1: [00:21:41] Absolutely. I mean, you know, those stats are really stark, aren't they? 80% of people say that they would like to die at home. That's quite understandable. 44% of people dying in hospital is clearly demonstrating that we're not meeting that need that people have. 1 in 5 people will die within 24 hours of getting into hospital. And the Secretary of State's recently talked about this challenge as well. And when we face those downstream winter pressures in the NHS and all times during the year, we know that those beds that we have occupied by people who are dying are possibly not the right place for those individuals. And actually, those beds could be more productive if used for other patients. And we've seen, haven't we, the challenges of the elective care backlog. That actually if we were making those beds more productive, then we'd have a better chance of supporting people who are on those waiting lists as well. And actually, you know, this is just about rethinking the setting for people. So, one of the things that we've worked on alongside proposals is that we should be putting specialist palliative care in...

Speaker3: [00:23:01] Hospice wards basically.

Speaker1: [00:23:02] In hospitals, hospice wards in hospitals. Now, that might sound slightly against the grain. Because we also want to clearly move care into the community. But the reality is we've got to be practical about this. Many people are not accessing hospice care at the moment. And there's a real challenge with diversity as well. The people that are accessing hospice care aren't from diverse communities. And you know, there is an inequality in who is dying in hospice versus who is dying in hospital. So actually, can we fix the inequality issue? And can we assist hospitals to be more productive by putting the sort of specialist palliative care that Sue Ryder provides? And with our specialist teams right inside the hospital, so those patients that are inevitably going to end up in hospital anyway, we can provide them with a much better quality of death. We can support them in their final few days, their final few hours, and with the sort of specialist palliative care that they would have in one of our hospices. And that's something that we really want to see happen.

Speaker3: [00:24:10] I think Amanda Pritchard was on record as saying if we reduced the level of inpatients in their final year by 10%, it would be the equivalent of three new hospitals. So, this is not just a moral, but also a medical and economic imperative.

Speaker1: [00:24:27] Absolutely. You know, if you look at it from the cold facts of the economic aspects and the productivity of hospitals, it makes sense. If you look at it in relation to what people want and what their families want, it makes sense. And in terms of improving inequality as well, it makes sense. But it has to happen within a wider ecosystem. So, I've talked a lot about the fact that we need to really change the palliative care ecosystem, because it's also about shifting care into the community. I mean, the hospice sector already provides 80%, as I said, of support in people.

Speaker3: [00:25:06] How would the hospital hospice ward be funded just to touch upon that? I think you've proposed a different model so that actually the funding is sorted out as well.

Speaker1: [00:25:13] Yeah. So, there's a few things that I think.

Speaker3: [00:25:15] A fast track.

Speaker1: [00:25:16] Yeah, there's a few things that I think we could do. So, I mean, firstly I think whilst there's challenges in the hospice model and the charitable nature of having to raise money, I think there's a great opportunity for a partnership with government and the NHS here that actually the hospice sector can raise part of the money. It's a great deal for the government to be saying, you know, you don't have to fund all of this. We will fund some of it. There's a great opportunity for lots of partnerships there for the in-hospital model, for the community model. I think we need to look at reform of continuing healthcare funding and in particularly fast track funding. I think that if we were looking at fast track funding on a wider basis, I think that could benefit many more people. And that could fund greater levels of care in the community. So, you'd have this ecosystem where you would have a default being let's support people in their own homes.

Speaker1: [00:26:12] A safety net being actually, let's have support in hospital for those people that are that are inevitably going into hospital so we can give them a better support and better care. And then of course, within that we will still need specialist hospice care as well for people. But that hospice care increasingly can work with people on a much longer timeline. Because one of the things that the hospice sector is seeing is that people are accessing hospice care at a much later stage in their lives. And actually, that's then, you know, creating the situation where people miss out on the sort of support that we could provide them with on an ongoing basis. So, you have this ecosystem where you've got immediate response in the community, supporting people in their own homes, a backup and safety net in hospital, and specialist care to work with people on a longer trajectory. And that's all backed up with better guidance and information and better planning.

Speaker3: [00:27:10] And this is part of the five-point plan that you've submitted to the government as part of their ten-year review.

Speaker1: [00:27:15] Yes.

Speaker3: [00:27:15] A couple of final quick points on that just to tease out, because this will have quite a big implication, and it sounds like an amazing vision. Part of your plan obviously talks about the training needs now that are going to be required in terms of you need the right, a slightly change in terms of the training and skills for the people in this new ecosystem.

Speaker1: [00:27:32] Yeah, absolutely. I think, you know, training of healthcare professionals, whether that's doctors or nurses or care home staff is really vital. We find that not a lot of people have the specialist knowledge, including, you know, what is a natural death? You know, what is the process that people go through when they are when they are dying? And actually, I think that lack of training leads to a lot of overmedicalisation in the final few days or hours of people, which can be traumatic for those individuals and their families. And actually, it is something that if we embraced knowledge of death and we improve that knowledge that people have, I think we could really change those circumstances as well. So, you know, the point around this new ecosystem is that this is absolutely not about the hospice sector trying to say, you know, give us more money. You know, we want to be dominant. This is about us working alongside government and the NHS and saying, look, we've got some specialist knowledge here. We could be doing more. This isn't about huge sums of money. It's about rethinking the way in which we spend resources, rethinking the approach at various levels. And I think we can really do a great job on changing society, supporting people to have better care and saving money for the country as well.

Speaker3: [00:29:00] What's not to like there? I know you're a trustee of the Reading agency encouraging people to read, so I hope the government are going to read the five-point plan. One final point, I guess, that all of this comes back to, I think it's the final point of your five-point plan, is empowering patients and making sure they've got the information and actually the space to express their preferences.

Speaker1: [00:29:20] Absolutely. I think greater knowledge, greater awareness. I mean, that's why our grief deserves better campaign is out there. You know, we've got to get society talking, recognising that grief is important, recognising that death is important. And if people are planning effectively and there's you know, we've got some great resources at Sue Ryder to support people through this process. If people are able to focus and think about, you know, the choices that they would like, the decisions that they would like to make when that inevitable event in their life comes, that they can just get on with their lives. And it's fascinating really, isn't it? We spend a huge amount of time in life, don't we, planning for all sorts of things. But planning what new toaster we're going to buy or planning a holiday or looking at travel arrangements. But actually, this is something really significant that we avoid and completely understand the reasons why we avoid it. But if we just took some time out to think about it, I think we could really change the way in which we live. 

Speaker3: [00:30:27] On that very passionate note, James Sanderson, thank you so much for your wisdom and sharing your clear passion for this subject.

Speaker1: [00:30:34] Thank you Suhail, it's been a pleasure to be with you.

Speaker3: [00:30:36] Thank you. If you enjoyed this episode of Voices of Care, please like, follow, or subscribe wherever you receive your podcasts. And if you want to find out more about how we're turning the dial on health and social care, please visit newcrosshealthcare.com/voicesofcare. In the meantime, I'm Suhail Mirza. Thank you so much for joining us, and I look forward to seeing you on the next podcast.

Speaker2: [00:30:56] Voices of Care, the healthcare podcast.