The Silent Why: finding hope in grief and loss
Claire Sandys is on a mission to see if it's possible to find hope in 101 different types of loss and grief (occasionally joined by husband Chris). New ad-free episodes every other Tuesday. With childless (not by choice) hosts, this podcast is packed with deep, honest experiences of grief and hope from inspiring guests. You also get: tips on how to navigate and prepare for loss, blogs, experts, exploring how loss is handled on TV, and plenty of Hermans. For more visit: www.thesilentwhy.com.
The Silent Why: finding hope in grief and loss
Let's Chat... Life in a hospice (with Maddy Bass & Kay Backhouse)
#107. Let's Chat... about what day-to-day life is like working in, or visiting, a hospice.
Let’s Chat episodes chat to guests who have experience/expertise in a particular area of loss. In this episode, I (Claire Sandys) chat to Maddy Bass (Director of Nursing) and Kay Backhouse (Clinical Administrator) who both work at St John's Hospice in Lancashire.
Maddy has wanted to work with people who are dying all her life and is passionate about her work and providing the best possible care, and Kay has experienced the death of her brother in a hospice and since then has started volunteering at St John’s. So they’re the perfect pair to give us an insight into what life is like working in a hospice, but also what it’s like as the family members of someone who is having end of life care.
In this episode we chat about how it works when you need a hospice, who pays for it, what the atmosphere is like, why they’re so important, what’s their role compared to hospitals, what would they want people to know about hospices, and how working around grief and death affects their own dealings with it personally.
For more about St John's Hospice in North Lancashire & South Lakes, and some of their own podcast, visit: www.sjhospice.org.uk
For more about Kay, and her book, 'Losing You, Finding Me', visit: www.kay.backhouse.com or www.instagram.com/kay_backhouse
And for the episodes I mentioned about our time doing work experience in a Funeral Directors:
'Wales, work experience, bitey flies, chips and Dave': https://www.thesilentwhy.com/podcast/episode/78783914/wales-work-experience-bitey-flies-chips-and-dave
Blog: Seeing my first dead body: https://www.thesilentwhy.com/podcast/episode/7af9430b/blog-my-why-seeing-my-first-dead-body
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Thank you for listening.
Hello there, and thanks for joining me for another episode of Let's Chat. I'm Claire Sandys, host of The Silent Why podcast, a podcast exploring how we can all find hope through grief and loss. In these Let's Chat episodes, I talk to a guest or in this case, two guests who have experience or expertise in a particular area of loss, grief, or maybe even death. And in this conversation, I'm chatting to Maddy Bass, Director of Nursing at St. John's Hospice in Lancashire, and Kay Backhouse. Author and clinical administrator also at St. John's. I actually came across this topic sort of accidentally, because I was having a chat with Kay about a future 101 Loss episode that we're recording with her soon, about the complex death of her brother in a hospice. And she said, 'I wish more people knew what it was really like in a hospice, because it's not the sad, scary place, a lot of people might imagine', well, that got my attention. And I said, Let's do a Let's Chat episode on that then, because I'd love to know more about life behind hospice walls. So Maddy got invited into as the director of nursing where Kay works. And here we are. Maddy has wanted to work with people who are dying all her life and is passionate about her work and providing the best possible care. And Kay has experienced the death of her brother in a hospice, not the hospice we're talking about today, and has since then started volunteering at St. John's. So they're the perfect pair to give us an insight into what life is like working in a hospice, but also what it's like as the family members of someone who's having end of life care. In this chat, we talk about how it works when you need a hospice who pays for it, what the atmosphere is, like, why they're so important, what their role is compared to hospitals, what would they want people to know about hospices, and how working around grief and death might affect their own dealings with it personally. Plus, Maddy offers to buy me lunch if I go and visit. So I've officially got that recorded and you're all my witnesses. And through these lecture episodes, I always want to capture something useful to help others from the conversation, a bit like the Herman's that we collect in our 101 loss episodes, pop over to the home and company.com For more on that. So from these I'm building a tool shed metaphorically of equipment to help us face and get through loss and grief. And at the end of each episode, I ask our guest what sort of tool their subject might be, then I add it to my shed. So far, I've acquired a very useful range of tools, and today I get two more that I don't already have. I'm just constantly amazed at how few duplicates I have in this shed. Now, when I recorded this interview, I was towards the end of my eight week cold cough dry throat thing. So thank you, Maddy and Kay for being very professional and ignoring me as requested when I had to keep muting myself to cough or blow my nose. But don't worry, I've edited out all my coughs and splutters for you that are listening. You're welcome. So grab a cup of tea or coffee or maybe a hot honey and lemon if you're also suffering with these cold, wet grey British spring days, and relax with me, Maddy and Kay as we chat life in a hospice.
Kay Backhouse:My name is Kay Backhouse. I'm based in Morecambe in Lancashire. And I am an author, author of 'Losing You, Finding Me', I'm also a clinical administrator at St. John's Hospital in Lancaster, and I am a grief mentor and transformational coach. But I'm also a wife, a mom, a sister, a daughter, and auntie and everything that goes with that.
Maddy Bass:I'm Maddy bass. I'm director of nursing here at St. John's hospice. So I've been here for 10 years now. But I've been a nurse for 32 years. And I kind of thought I'd know everything by now. But I think I'm just aware of what I don't know. So I live in Burton-in-Kendal, which is just outside of Kendal. We moved up here 10 years ago, 10 and a half years ago now, sort of career but lifestyle move as well, from Suffolk. I'm a wife, I'm a dog mum, daughter, aunt to a lot of surrogate children and just enjoy quite a lot of trail running and wild water swimming in my spare time.
Claire:So we are here today to talk about your work and what you do in the area of hospice, hospices? Is there a plural for hospices?
Maddy Bass:I think it's hospices. There's no hospi! I'm not aware, it's or hospex or anything. I think it's hopsices.
Claire:No, right. Okay, so yeah, why don't you both tell us a little bit about what your connection is and what you're doing in that area specifically.
Kay Backhouse:So my role within the hospice is twofold, really. So I work as a clinical administrator for the hospice at home team. So that's the community team. So that's where we can help people stay in, in the home when they were approaching end of life and support the families in the home as well. I also work on the inpatient unit in a similar role, and I'm also a volunteer in the bereavement Centre, which is called the Forget-Me-Not centre.
Maddy Bass:As director. I'm kind of in charge of all the patient facing services, so Ward, community de services and bereavement. I manage the managers. I manage the budgets manage the policies and procedures. I'm the lead for control rocks. I'm the lead for safeguarding. I'm the registered manager with CQC, and lots of other things that go along with that senior role. So I'm a bit of an advisory support alongside many office based in uniform. I've been working on the ward today and try and do some clinical work every month in Ward and community just to keep in touch with the staff and chat there. Okay, it's a psychologically demanding job here at the hospice. It's not quite throughput that the hospital that the NHS has, but it is psychologically demanding with really complex cases in community and on the ward. And that's where really where the staff needs support.
Claire:Yeah. And you mentioned the ward there. Maddy tell us a little bit about what that means, because I didn't realise that Some hospitals have wards I was kind of picturing lots of rooms. So what is the physical layout?
Maddy Bass:So here at St. John's, we have 13 beds, we've got five side rooms, and then the rest of the beds are in little bays, so two bays have to obey of three. And that just means that if people feel more comfortable with a bit of company and feeling that they're not on their own, that can often suit them better. It also means if people are confused, climbing out of bed or delirious for whatever reason, there can be lots of reasons for that, that we can keep an eye on them in front of the nurse's station. So hospices are all built very differently. A lot of them have got side rooms, if they're more modern buildings, our buildings 40 years old. In fact, it's 40 years tomorrow, that the first sod was cut for the hospice. And it opened in 1986. So we'll be 40 years in two years time, but it's quite significant time of year for us this. So yeah, so that's inpatients so we manage that service, and we employ all of the nurses and doctors and then community patients are in their own homes or in care homes. And we'll support them there alongside their normal, other carers family or nurses.
Claire:So I think a lot of people think of hospices, and it's this sort of quite depressing people dying, lots of deaths on a sickness, lot of illness. That's kind of what I think a lot of people picture in their head a little bit scary, probably for a lot of people. So why on earth would you want to go and work in that kind of environment, and I suspect you're going to tell me, it's nothing like that at all. But tell me a bit about why you both chose this particular area to kind of go and work in.
Kay Backhouse:Juston what you just said there about hospice before I went to work in St. John's hospice, I also had not had any experience whatsoever in a hospice environment until my own brother got unwell with cancer. My thoughts about hospices before my brother got unwell, and needed one was the same, I thought, it's just full of sadness, it's full of death, but it's not a place I want to go. It's not a place even want to really talk about. So when we actually got to a point of my brother was ready to go into a hospice for care and support. I went in blind, which was actually, I would say, now more overwhelming than if I had have been introduced to what a hospice was and what people do in a hospice. So that's quite a significant sort of reflection for me just recently that I've actually been thinking about that. So my brother was in hospice for about eight weeks altogether. And throughout that time, my opinion of a hospice completely changed. But I would say it significantly changed when I decided to volunteer initially in a hospice, before I decided to work there. And it's absolutely nothing like what I thought it was going to be. It's like, if I wanted to go somewhere where there is like, the happiest, nicest, kindest, most welcoming people, that's the place I'd want to go. And I felt really like almost robbed of that experience before because no one had ever introduced me to the idea that that's what a hospice was, I think we're really lucky at St. John's, because we have a fabulous cafe. And we have things that brings the community in there. Even if you don't have any of your family or friends or anyone needing support from the hospice, you can go there and feel that you are contributing and helping something that's a significant part of the community. And it is just a wonderful place.
Maddy Bass:I'd always wanted to work with people who were dying, and I've no idea why really, even from when I was a teenager, it just felt something that I felt comfortable with. And I went into palliative and end of life care in 1996. I've worked in quite a few hospices now along the way. I think they are lovely places. I think, as I was saying to you, Claire before it's not about the throughput of patients like the NHS is, it's more about the intensity of the patient care. So we only have 13 patients on the ward, but we have a higher level of staff to patient ratio, so that we've got some really specialist skills from our medics and very skilled nurses on the ward, who were able to attend to everybody's needs, whether that's quite difficult symptom management or support for the family or both. And the most important thing is that you meet the needs of the person at that time, wherever they are, and we know that the NHS is stretched, there are some absolutely fine Fantastic nurses are managers in the NHS, but they're dealing with very limited budgets. And there's a lot of good nurses and a lot of good managers there. But we are able to, we have a small number of patients. So we're able to make to give really intense concentrated care on the ward. And we're able to work alongside the services in the community. So we're in an extra. And that's really important for people, we've got the time to be able to be there alongside, in probably one of the worst times of people's lives. It's really hard watching someone you love die really hard. And going back to what you said about hospices, you know, there must be really depressing, and people die. And people are ill, there's probably more deaths in the hospital than there is in the hospice. But it's a much more concentrated area of death. But having said that, 50% of our patients went home last year or to a care home. So it's not that everybody comes in and everybody dies, they may well die, but a lot of people stabilise or improve, and then they'd go back home, or they're discharged to a care home where they can get a bit more intense care.
Kay Backhouse:Yeah, and that's that's exactly what happened to my brother. So he actually had to two admissions into the hospice. One was for symptom management, pain management, and also to support us as a family from a psychological emotional perspective. And then the second time, it I think, we were pretty aware, I think, at that point, that that would be the last admission. So yeah, I agree with Maddy there that it's everybody thinks that that's it. Once you go to the hospice, that's it. You never leave. It's not it's not the case.
Maddy Bass:Yeah, well, if I go to the hospice, I'm going to die. Well, there's nothing that we do in hospices that speeds up or slows it down. It's not where you are, if you're going to die, you're gonna die. But it's about where you want to be at that point, that's most important.
Claire:So following on from that, what would determine whether somebody would go into a hospice or hospital? Because if you don't necessarily go in there just to die, which I think most people would think is the case, why would you not go to a hospital instead?
Maddy Bass:Hospitals are great for people, if they're palliative, if there's something that might be reversible. So it depends at what stage people are in their disease process. So they might have a chest infection, they might not want to go to hospital. Or it might be thought that actually if you go to hospital, you're too poorly to respond to the treatment. So in which case, then you'd be considering hospice. A lot of people don't want to go to hospital, a lot of people had very bad experiences and will say no, when they come to us, or when they're under our services, we'll talk about what's the ceiling of care, do you want this to escalate? If something happens, and you deteriorate, where do you want to go. And most people say, I don't want to go back to the hospital. So in which case, we know then if there's any change, and then people become more unwell, no one's going to call an ambulance, they're not going to get stuck in a&e, they'll come into us if they need to come in, or we'll just make them comfortable at home do as much as we can. Our hospice at home team can do night sets. So we'll have a healthcare assistant can actually sit in someone's home from quarter to 10 at night till quarter, seven in the morning. That makes a massive difference for people. We all know what it's like, if you don't get a good night's sleep, everything is worse, where you build in all of that psychological and emotional distress as well. It makes a massive difference, having just one good night's sleep. So doing something like that helping with respite, supporting people helping symptom management, if you can keep people at home, then people will want to be at home. But it may be right to go to hospital, it may not be.
Kay Backhouse:Comes back to being right place of care at the right time for the right person, depending on what's happening with them in that stage. So my brother said he went into the hospice for the first admission, then they discovered there was an acute issue with his sodium levels being too low. So then he was admitted into the hospital. And he stayed on there while they got sodium levels under control. Then he went home. And then he went back to the hospital again. So again, he was sort of in the right place at the right time for what he needed.
Claire:Yeah, it's interesting, it must be quite a complex relationship between the two, you've obviously got to learn how to word it really be obviously got the level of knowledge or authority, whatever it is to have people there that are dying. It's not like you need to rush them off to hospital because oh, gosh, this is near the end, and we can't do this bit. But then obviously, you can't do everything there. Because like you said, like low sodium was something that has to go to somewhere more specialist. So you're constantly balancing who needs to stay who needs to go to the hospital?
Maddy Bass:Yeah. And the same at home. Really, it's about making sure when it's that's why it's good to have the advanced conversations with people. So we try and do something called advanced care planning, which is what it says on the tin. It's trying to get people to decide where they might want to be if they become more unwell. Who do they want to speak for him if they can't speak for themselves, and they don't have a lasting power of attorney in place those conversations, so if that situation arises, we can just check with him. Do you want us to do what you said. But we have people here on the ward that then go over to the hospital, they might need a chest X ray, they might possibly get symptoms of something like a blood clot so that might be reversible, but it needs confirming so they'll go over for tests. They might have fluid on the chest that can be drained. We can't do that here. And again, it's very much about weighing up what the patient wants at that time. And actually whether it's suitable some people are just too unwell to go across and have that done
Claire:Kay, because you're a bit more new to this area Maddy thing she's been in it most of her life, you will in the hospital with your brother, you saw your brother die. What took you back into a hospital because I'm guessing that's not what everybody's experienced, I must come and work here. Because I've been in one I've been through something awful. What happened there?
Kay Backhouse:He died in 2019, I didn't actually die in the hospice that I work in. So died in a different hospice. If you'd have asked me this, in the first two years, I would say following his death, I would not have said that I would want to work in hospice. It sort of came during the whole grieving process healing process, if you like that, I decided I wanted to be of service to other people that were going through the same thing, I just had this real feeling that there was something that I could do that was positive and constructive. And I could share my experience in a positive way, I had really complex grief, he had a very complex death. And that impacted the whole family, I can only really speak for myself. But my grief was very, very difficult to manage in the first two or three years. So when I felt ready, I basically joined the hospice as a volunteer. So I wanted to just put my toe in the water, and just see if I could cope being in that environment. And the very first day I walked into the bereavement centre, the forget me nots centre, I was just like, you just have those moments in life where you just got I'm supposed to be here, like, this is what I'm supposed to be doing. And being able to talk to people who are going through something very similar, and to be able to help just by listening. It's not even that you're doing anything necessarily, but I just felt, you know, just this connection, and it actually helped me heal. I was very, very frightened of death after my brother's death, because it was complex. By working in a hospice, I've realised that that not everybody's experience. And that doesn't happen to everybody. It's not a one off, because there are a percentage of people that have his experience and our experience, but working in the hospital has benefited me in so many ways through through that grief.
Claire:Yeah. And we're going to record an interview with you talking in more detail about that. So we can hear about how you've worked through that grief and what it's like to go through a complex death with a family member like that. What do you think our hospital offers the person that's dying, but also the family in that journey and as part of that grief process?
Kay Backhouse:There's a number of things and ways in which they supported us as a family. And this, this happens at St. John's and it also happened at the hospice where my brother died. It's it's like everyone sort of comes together to hold the family. So we had complementary therapies, which I had no idea happened within a hospice setting. And how that helped. For example, my parents had Reiki they've never had Reiki before. And they now have Reiki even now, so it was something that really, really helped them psychologically, it helped them with their emotions. During that time. We had all of the officers and medics with us, the nurses with us, we could ask questions with there were counsellors available to help my brother's son come to terms with the fact that his dad was gonna die, there was a lot of complexity there because he was 12 at the time. And he's, I never liked saying autistic because I'm not a label person. But he has some complexity that in that he can't necessarily process things the same way as everybody else. So there was all of that support as well. And all of this happens in the hospice setting where I work now. And nap hugely helped us. I think,
Maddy Bass:Kay's right, when she talks about holding the family, it's not just about seeing the patient or the person on their own, you know, the person's part of a social unit. And that can be blood relatives, not blood relatives, it can be friends, families, dogs, birds, it can be a multitude of things. It can be the milkman, the hairdresser, you know, and it's bringing in the people that are closest to them to be included in their care and to help them with making those decisions when they can. Every hospice offers slightly different things, but most will offer some sort of beds in the building, some sort of community support, and some sort of bereavement support. We offer day services here as well. So we do something called fatigue, anxiety and breathlessness. The Fab group as we call it, for people with breathing problems from disease and that can be a cancer or COPD, chronic obstructive pulmonary disease, or heart failure. So we offer those kinds of things as well. So we can get involved quite early on in the journey and encourage people to do that advanced care planning, and we can be there right at the end of life and going forward. Because you would want to know that the family is left behind or going to be looked after and Particularly, we see a lot of older couples where the children live away or the children may have died. And you know, they're in their 90s, they may still be together, and you've got someone who's left on their own after years of being with someone else. And they're as vulnerable as the children, other people that we're dealing with as well. So it's about carrying on the journey with the rest of the family.
Claire:I know that there are children's hospices that are different what is the sort of age range that you're catering for?
Maddy Bass:So we're 18 plus, we will be involved with supporting people from 16 and 17. If they've not been involved with other palliative care services. What you're getting now more is, children's hospices care for a lot of children with congenital diseases. So things that they're born with, or they may develop in early life. And that's a very different model to what we do in adult hospices. So for those know, that are living longer, the 16 to 18 year olds are starting to come now into adult hospices, and it's a very different model of working. So it's difficult to help them with that transition. We're not there doing the respite in the way that children's hospices are, we're not necessarily there to do the play activities and support that they might have been used to. So there is a lot of work now on that transition period, when people are over 18, because they may live a lot longer than they would have done so. So it's a different model. It's a different setup, but hopefully we can work with with when they're transitioning from that children's to adult hospices, you know, children's hospices are more about respite and support and we're not with adult. So it's, it's quite a big change for parents particularly.
Claire:Do you ever get it so that a child would have to move from a children's hospice into an adult hospice, because they're sort of surviving longer, or would that not really happen?
Maddy Bass:They can do, you tend to find it's when they're in their late 20s or early 30s. Now, so depending on what what the problem is, and what the needs of that person are, they might stay with a children's hospice for quite a bit longer. And I know that some children's hospices still have people there that are in their 40s. But it's not deemed appropriate for them to come into the adult hospices because the model of care is so different.
Claire:So tell us a bit about what it is like day to day in hospice. So someone walked in now, what would they see? Again, you kind of picture either lots of little rooms or a ward and lots of people that look dangerously sick, and lots of people maybe crying at their bedside. I think that's the kind of image a lot of people have. And I know that we want to dispel that a lot today, because I've heard Kay talking about working there. And it just sounds like such a happy place. And I've heard other people talking about hospices in that way as well. So what would somebody see if they're wandering in having a look around?
Maddy Bass:Well, the nice thing about St. John's is when you come into reception, we've got a shop and a cafe. That's the first thing you say. So you see normality. And that's really important. I think for people coming in, you then go down a corridor, and you will come onto the ward, you don't see people sobbing at the bed. Some people are upset. But not everybody is. You might see people that poorly. But equally, you might see people sitting out in a chair, you might see patients walk into the toilet, fairly independent, but knit they're coming in to help the sum of their symptoms. Last week, we had the Salvation Army in for a lady who wants to see them with her wife. So they came in and play to their repertoire. And then she and a wife had afternoon tea. The week before that we have someone whose horse came literally into the building, stepped over the threshold, so he could stroke the horse's head. So there's a lot of very happy things. They're very emotional. They're very poignant. But there are a lot of things that the team do on the ward week by week, it's just normal afternoon tea celebrations, we had someone who sang got married and he wasn't well enough to go. So we managed to video link him up in the garden room, he was able to watch that then his son came with his wife the next day, they had a blessing in the summer house out in the garden, and a little reception afternoon tea for nine people. So you know, we do those, we don't ask for people to dip into their pockets and do it. We'll pay for a private ambulance for someone to go home or to go onto a trip that they want to for the last time if they're not well enough to do that under their own steam. It's about what's important for that person at that time. So that makes it a happy place. Because it's a satisfying place to work. It doesn't mean it's not sad. It doesn't mean it's not emotional. But it's not about grey walls and everyone in black sobbing and you know, mourning. It's about celebrating the life that people have still got left.
Kay Backhouse:My experience is very much very much that I work in their hospice at home team. So it's a little bit different to being on the ward. So there is basically an office that's upstairs and that has a group of clinical nurse specialists, and then their senior registered nurses, senior healthcare assistants, and coordinators, some community management, and we all sit up there in that what I see determined as a hub, but it's basically the happiest room to walk into. It honestly is I walk in every day and it is just all of us together. And I think to me, the hospice is where life and death meet. So it's not possible to sort of have meaningless conversations, they don't really happen very often, they're very meaningful. And to being part of those meaningful conversations with families with patients, you tend to do it with your colleagues as well, which creates this really strong bond. And this really lovely morale, where you all feel like you're there supporting one another, all the time. So even though we have sad moments, and I definitely have had phone calls in the community team, from patients and from their family members, and it could be a call to say that somebody has died. And the other person at the other end of the phone has literally just sat with their parent, their partner, their sibling, and watch them take their last breaths, and I may be the first call that that they make, it is upsetting. But at the same time, you feel really privileged that they're sharing that intimate moment with you, and you are able to hold them in that intimate moment. And that something that I feel, is just a wonderful thing to be able to do. And we have really good support services set up within the hospice to support everybody with, as Maddy said, the emotional side of things. So I have regular clinical supervision. So I'm able to offload whenever I need to, if I put the phone down, and I felt upset about something, I can turn around to a colleague and speak to them immediately about how I'm feeling. And we're all fully supportive of that. It's kind of like the norm.
Maddy Bass:And I think the thing that we all know, without breaking bad news in a bad way is that we are all going to die. And that death is the only certainty that we've got in life. And it may be early, it may be untimely, but it still happens. And you can argue that palliative care gives people time to think about it and say goodbye as opposed to sudden death, which is very different and is a different type of grief. And suicide. Again, there are all different ways. And some people might say, oh, I want to go I just want to go and sleep really quickly like that. And then I don't have to worry, but then the family do. And other people say oh no, I'd rather No, I'd rather have a little bit of warning. But then you may have symptoms and, and your family may see you suffer. And there's other challenges. So the only thing we can say is yes, we will all die one day and get your advanced care planning done. Now while he can.
Claire:It feels like, and Kay used the word that I hear quite a lot when people are talking about dealing with death and dying as part of their job on a regular basis that it's a privilege. It's a privilege to be with people at these big meaningful moments and the gifts that you can give people at that stage like you're talking about bringing in the horse and having weddings that you can be passed on, you know, they're they're just so meaningful, so beautiful, I can understand that you live in this world of of sad beauty all the time. And that is a privilege. And it feels like such a lovely thing to be part of. And like you said it's inevitable for all of us. So if you can bring a bit of that to people at the end of their life, then what an amazing thing to do have you both got moments that stand out for you as like highlights of joy, happiness, sadness, beauty, just moments that you look back on and think that was a really beautiful thing.
Kay Backhouse:There isn't like an individual standout situation that I kind of got all you know, that was I think what I'd like to say, though, about that is in the hospice environment, what I love to see is when families come together, and you witness the support surrounding that person. And that's obviously I've had that direct experience with that with my own family, and how we were brought together within the hospice and support and support in my brother the best best way we could in a situation we'd never been in before. That was you trying to handle your own emotions about it, and you're trying to hold that person as well. So that that's, that's really difficult, but I just think the same families where they come together and not all families are the same. And dynamics are quite challenging. And sometimes there are patients that come in who don't have any family and that for me, I find that really difficult sort of really really tugs at my heartstrings when I see or hear or we have patients out there in the in the community who don't have any direct family our support, which is where we can come in and actually fill that gap for them, which is amazing. So I think it's just that it's just the fact that you see the beauty in what humans can do for one another in those moments is really, really special. And they're often very simple moments. They're very simple things, but they're become the most powerful things for that person.
Maddy Bass:I think I've got lots, I've got lots where I might feel it was great in the family feel it was awful. The family might feel it was great, and I think it was awful. There's lots of studies around what constitutes so Good death. So being where you want to be having the people around you that you want, being able to choose what you want, and not going to hospital, those kinds of things that are key. And we know that sometimes it's not how people want it to be sometimes symptoms and end of life agitation can be present. And that can be quite difficult to manage sometimes. But what we will do is, we will keep trying, we will never give up, we will never stop hoping that we can get people comfortable and settled. And we will never stop trying to do what's right for that person. And I think that's what's different to us safe from some other services that are available. So you might have treatment, I don't know, say, for cancer, and you come to the end of the line for the treatment of the cancer. And we might be involved because the treatments not necessarily curative, but it is treatment that is helping some of the symptoms and the disease progression. But we'll be there in the background. And then when that treatment stops, we just take over completely. So that's when you want to make the hope, right really want to try and get people as comfortable as possible, and to give them hope that you're never going to stop trying to keep them comfortable.
Claire:Maddy mentioned hope there. How important is hope in what you do?
Maddy Bass:I think when people have had treatment either for a cancer or noncancer condition, and they get to the point where they're told to can't give you any more treatment. What they want to know is that it's not the end of the line for them that you know that that's a big change for them. And some people have treatment for years, you know, some people can have an incurable cancer for quite a lot of years. And cancer is becoming more chronic really, as treatments progress. People can have 678 Fline. chemo, well, when I started nursing and palliative care, if you got second line chemo, it was very unusual. So there's this hope created every time that if this doesn't work, there'll be something else and something else. And at some point, it stops. So what we want to then be able to say to people is okay, Matt might have stopped, but what we will do is work with you to look at what's important. Where do you want to be when you're ill? Where do you want to be when you're dying? Who do you want to be with you those whole things are prepared, we said what's good for you what's what might good death look like, some people don't want to talk about it. And that's okay. So that whole thing about hope is maintaining it, according to what the patient the family are willing to work with you on. And often the family are in a different place from the patient, patient might be further ahead and accepting the family aren't and it might be the other way round the patient isn't in the family are. So we're not there to gang up against the others were there to work and try and open up those conversations and get people to talk about it. And if they don't want to, that's absolutely fine. But what we want to do is maintain hope. And quite often, you know, I can remember patients say I will I'll go skiing next year, you know, I'm booking my holiday now and you look at them and think there's no way you're going to be going anywhere even in the next month. But for them that's important. So you have to maintain a little bit of not lying to them not pulling the wool over their eyes. But just saying okay, well, you know, let's talk about that a little bit more and explore a bit more. But sometimes it's more about just talking, they actually know what's going on, but they don't necessarily want to voice it hopes one of the most important things.
Kay Backhouse:I have a stone in my house that's got the word'hope' written on it. I've had it for about 10-15 years. And I had that in front of me a lot when when my brother had cancer, and at the time, his cancer had actually reduced. It had shrunk, it was looking like it was going away completely. And we had sort of a few years there where I was full of hope and full of it, there was just no chance he was gonna die. Like that's how I felt. And that's how he felt too. So I guess I feel I had a complicated experience with hope. Because then as he deteriorated, which was very unexpected to me, I started to lose hope. And it wasn't who I was. So it was kind of challenging who I was as a person. So I did go through a period where I lost her up, he lost her job, and we felt very deflated. And just kind of like we've lost the battle of what it was that we were battling with. It wasn't him battling the cancer, it was never that it was just us against the world. And we were going to, you know, we were going to win. So I feel Yeah, I just had a very complex relationship with it. But hurt now to me is the recovery from the depths of grief. That's that's where my hope is now.
Maddy Bass:And hope changes, doesn't it? Yeah, what you might hope for if you're first diagnosed with something changes, if that then becomes linked curable. And then if that then means that the treatment stopped. It's changing all the time. You're describing it perfectly Kay about the fact that it was you and your brother against the world. And when it didn't work out like that your hope was dashed. So then what we would try and do is work with you as to what a more realistic hope might be in that situation. It's really difficult. It's all part of that grief process. Everyone's grief is very different. But there are key things along the way and you when you're told bad news, your hopes are dashed course they are.
Claire:It's a lot more complex hope, than people imagine I think we use the word quite flippantly. Like, I hope this happens, but actually when you really need it, or when you lose it, it has a profound effect on you. And even with with us with childlessness, I remember having a chat with somebody wants another woman who's also childless. And she said, I don't want to lose hope I get that, but I'm finding it so heavy, like the idea of just carrying it that you hope something's going to happen. And it's kind of not going to and, and so I had to go through that sort of like, I want to have it but the moment it's what's damaging me because it's sort of I'm hoping in this and that might not be healthy. And it's really interesting Maddy that you said you help people to find more realistic hopes. And sometimes I think that is helpful, you do need to shift where your hope is to find something that you can hoping again, that might actually happen to someone you're hoping in something that's not necessarily going to happen. And that just gets it just weighs you down. And and then you end up losing it. So yeah, it's an interesting concept. And it's something we like to look at within the framework of grief and loss because it affects people so differently, some people lose it, some people never really get it back. Some people have clung to it. We know with everything they've got for the whole time, because all that kept them going. It's it's very interesting to see how people how people deal with that. If there was one thing about hospices that you'd want people to know that maybe they didn't know or think differently about, what would that be?
Kay Backhouse:That the hospice plays a part in the whole journey for that person in that family. So having hospice involved sooner, rather than later, as scary as that can be is better in the long run. Because what I've seen is firsthand, now, I've seen that people hold the hospice at half arm's length for quite some time. And then when it comes to the point where they want them involved, it's very, very late. And it's very, very difficult to get exactly what that person needs, and their families need, because they haven't talked about those things. So it's all rushed in the end. And it all feels very overwhelming and very panicky. And it then it feels horrible. So I, I would say that anybody who has a cancer or non cancer illness, that is shortening their life, don't be afraid to have a hospice involved early on, it doesn't mean that it's going to hasten your death.
Maddy Bass:And I'd say exactly the same as Kay, give it a go. Don't be frightened of it. You know, modern hospices are very different to how older people might have viewed hospices years ago. So give it a go. And we're here to work with you. And you don't have to come in and stay in, you don't have to come in at all, we can help you in your own home. Yeah.
Claire:Yeah, that's amazing. Because I guess there's a level of once I get a hospice involved, I'm admitting that maybe I'm coming towards the end. And I'm guessing that such a big thing to get to the point of admitting, and that just confirms it, I can see why people would hold it at arm's length. But I can also see how much that limits you and what you can do to help them from what you've said. So yeah, that's really important. And how important is language in what you do? Because we've spoken to people who have got all kinds of thoughts on talking about death and dying, some of our guests just do not use the D word. Some of our guests only want to use the D word. Some don't like the language that doesn't fully describe it or if you're throwing medicine they need to say someone has died not passed on or something cuz we need to be very clear. Is that something that you have to consider or have policies on? Or how do you just guided by the patient and how does it work?
Maddy Bass:Mainly guided by the patient, but we will, we wouldn't find someone that and say, Oh, I'm really sorry, your loved ones passed away or it because in that moment, it's a really stressful phone call and people can misinterpret it. And I had a relative of someone who was staying on the hospice who went her mum had died, had been told she'd gone to live with the angels. And she said it wasn't till she was in a 20 she realised a mum had died. So you know, it's, it's, you've got to be clear with people. And it's interesting how we're so against the D word, that four letter word, isn't it dead died death. If we went back 150 years, it was everyday language. We didn't cover it in nice spongy things and make it soft and unicorn like and sparkly. It's rubbish. It's rubbish for people experienced in it, and you put in a different name on it doesn't make that any less rubbish. So I think you need to be straight with people. You need to be honest, when you use the depth where people know what you're talking about, when you're honest with people that can open up very interesting conversations, very different conversations. I mean, I came into nursing because I just love people. I'm very, very nosy and most nurses are, but I'm really interested in people as well. And I've been very privileged to be part of some very, really interesting, very personal conversations with people over the years. And I would always say honesty is the best policy. But there's ways of saying things. It's not what you say. It's the way you say it. That's important. I believe you can say anything to anybody, as long as you approach it properly.
Kay Backhouse:Yeah. I would completely agree and I think people talk about death. I say death and dying and dead a lot. A lot more than I used to. So he's definitely changed the way I talk about it, I received quite a lot of bereavement training at the hospice, and that was talked about in a lot of detail. And especially when you're communicating with children, and young people, there is a need for them to fully understand the situation. And that Dead is dead. Because saying things like, you've lost someone, a child can interpret that as well. Where are they then when they're lost, lost were in the supermarket. And you know, so it's, it's very important to say the words, I'll say, from personal experience as well being in the hospital with my brother, this is why it's important to really understand the person and everything to be person centred, and around that family, because language and communication is so important to be tailored to that family. So my brother was very pragmatic, very practical, said it how it was, he was very funny, but he liked to just be told straight. And the number of people that did try and have a very fluffy conversation with him around death, did not connect with him at all. And it actually made that experience for him quite frustrating, because he just wanted to launch things at the door as they left the room. He found that really frustrating. He was like, what, you know, why are they fluffing around, he found that very frustrating. And that that was just one or two people that were like that. And all it was was they had not taken the time to understand how Syd like to receive language, how he liked to be communicated with. So I think language is extremely important when we talk about death.
Claire:But he said it's one of those things, we don't talk about it as much as we used to. And we have hidden it away as much as possible, really, which is why it's nice to chat to people like you and funeral directors and other people that we've spoken to who deal with it regularly. Because it's important, you know that that we bring it out a bit more if we were living in a warzone, there will be a different story because we'd be dealing with death on a daily basis. And we'd have to talk about it more. But we're privileged, I guess, in that we're not but at the same time, we've tried to hide it away. And I think that makes it so much more scary.
Maddy Bass:I think with when the NHS came about in 1948. I mean, what a fantastic thing the NHS is, but it talked about from the cradle to the grave. So I think that's when we started making death quite clinical and moving it into hospitals. Because it was hard in people's homes. It was you know, who would want to be at home when back then standards of living weren't as good as they are now. The community services weren't there, you would rather be in a building, but things have changed massively. Since then we've got great community services locally, people want to be at home standard of living a lot better than they used to be. So you know, we still get people that are living in very difficult situations that where it is much easier to come in. We had a gentleman last week, he lived in a caravan, no water, no heating, no electricity. That's how he'd wanted to live all his life. But he became so unwell. It just wasn't feasible for him to stay there. And he came in front of life care died very peacefully with us. But that was his choice. Some people do live in very difficult situations. But you know, we've now got situation where the NHS is so overloaded. It can't be dealing with that death and dying. So people would want to be at home, wouldn't they? If they could, not everybody can. But we will help those that we can. And when they can't cope, we'll bring them in.
Kay Backhouse:On that Maddy. And I'm sure I'm right in saying this, that most people are the high percentage of people do die at home and choose to stay at home. Absolutely. That's what I see in my everyday work. The only reason my brother chose not to die at home was because he was living with my parents and the idea of them being able to live in that house after his death. He just couldn't bear the thought for them. He said that's awful for them, they'll need to sell the house and I don't want them to do that.
Maddy Bass:And caring for someone at home. It changes the relationship and I'm thinking about your parents, Kay, caring for said, you're no longer a son, you're a carer and some relationships, that's the right thing and others that isn't you know, when you're caring for a husband or a wife, you want to be a husband and a wife. You don't want to become a full time carer. That's not you know, that's quite difficult for people. Some people want to do it, and it's the right thing. But for some it's not right. So you can maintain that relationship has husband, wife, parent, while they're in with us on the ward? Yeah,
Claire:Yeah, I'd imagine that it's really important that people know there's no shame or failure in doing that. If they suddenly feel they can't do it. Sometimes there's a lot of very good reasons why that should happen needs to happen or why someone selflessly chooses it. That it's so sad, I think when people have end of life stories where there's regrets, or there's sadness, or I failed them, because I couldn't do this to the end or whatever. And it's like, well, not everyone can do that. Not everyone should have to do that.
Maddy Bass:A lot of people do feel that, Claire, you're absolutely right. There's that feeling of well, I said I'd keep them at home and I feel I'm letting them down. But often the patient will say if they're still able to wish not let me down. You've done everything you can but it feels right to take the pressure off you now. And let me go into somewhere where they can cheer for all of us.
Claire:And that helps the grieving, I would imagine because you've released that burden in inverted commas. So no, it's not burden as such. But when you've released the caring, you can probably have meaningful time together. In a way that's harder to do if you're looking after someone physically.
Maddy Bass:Absolutely.
Kay Backhouse:That was my mom's experience in the hospice, staying with said she didn't leave the hospice. For those eight weeks, she didn't even put a pair of shoes on for eight weeks. And she was able to do that because they supported her knowing that she wanted to be the carer, but she wanted to be supported while she was caring for him. So she slept next to him for the eight weeks. And she said to me that even though that is the most horrific thing you'd ever think you'd have to do in your life, it still was the time that she had with him and the things that they shared and the conversations they had, she wouldn't change that. So that is so important to be able to support and hold people in so that they can deliver what they want to do for that person that they love.
Claire:How does it work with money? I know this is only going to be for the for the UK, or maybe only England, I don't know how it works elsewhere. Is this something that is on the NHS are their private options? Can you just phone up and say I need to come in what happens?
Maddy Bass:So hospices are part NHS funded, so some get as little as 5%. And some get as much as 50%. So it was local arrangements that have been made historically. So at St. John's, we get about 24%, from the NHS. And we have to raise over 4 million a year through donations, grants trust funds, we've got 38 of us going off to do a track in India, in November. So we're raising money so that that will meet the costs of the trip, but also to give some income to the hospital as well. So last weekend, or I think it might be this weekend, actually, we've got a colour dash. So people run a 5k route three mile route, and they get paint thrown over them at different points. So it's great fun, kids love it, families love it, all of that needs to happen to raise money. So it is an uphill battle. And obviously, as the cost of everything rises, the salaries go up. It's right that we give our staff a pay rise. You know, everyone needs to live in cost of living has gone up. But then we don't get that from the NHS. Every time we give a pay rise, we have to find that pay rise for our staff. Every time electricity goes up, we have to find that and we've got an old building an old buildings costs don't know. So we are looking to do a refurbishment. But that's not quite in the cards to share, because that costs as well,
Claire:Right. And then it's all free for the patients?
Maddy Bass:It's free at the point of care for patients. So we will always say if you if people say I want to give a donation then we won't ever say no, please don't. We will just say she's very welcome to give a donation, but we don't expect it. We get a lot of donations from families after people have died saying thank you for looking after them, which is absolutely lovely. And a lot of people then come back to volunteer for us. So like Katie's done because of her experience. She's volunteered. Now she's working for us and case great. She's just brilliant one have a great team of admin couldn't do without them. So it's brilliant. Given that care, it comes round to help us. But it's, yeah, it's hard work. It's hard work keeping us going.
Claire:Is there a private sector for hospitals thing?
Maddy Bass:No, not really. None of them are private. So we have had people say, Well, I'll pay but actually, it's done according to needs. So if people want to come on the ward, we may have a waiting list. We don't at the moment, but two weeks ago, we did have a waiting list. And we'll triage will look to see who are the most important people to come in. If they're in the hospital, we know they're in a place of safety. If they're in the community, we'll try and build in some extra support from our community team, whether that's night sets or a bit of day respite sitting with the nurses, so that they've got the support, they need to stay at home until a bed can become available. And sometimes they just say, actually, it's alright, we're managing at home. Now we've got that help we'll stay at home.
Kay Backhouse:When Syd was first admitted to the hospice. That was the first time I became aware of the costs associated because I sort of went into hospice and thought the same thing I thought, hang on Dad, do we have to, you know, do have to pay for this? I don't know how this works, because it's not a hospital. So it's not NHS, it's not free? Like how does this work? So it wasn't until we started asking the questions. And I was absolutely bowled over by how much it costs to run a hospice and how little they get from the government. And that that was that was quite a shock to me. I still am astounded as to how the hospices across the country continue to deliver the level of care and service that they do. And the fact that that is predominantly done by fundraising by the community is just insane. I am still volunteering and I do still volunteer and will continue to do so and especially now I know that it saves the hospice about a million pounds a year which is just unbelievable to get your head around. It really is and the people that I've met who've been volunteering there for 20-30 years it's, it's unbelievable. It's almost like once you're in, you can never leave. Because you just you, you so it just becomes I don't know, I don't know how to explain it.[laughs] It's not the best strapline though is it? No! [laughs]
Claire:Once you're in, you never leave!
Maddy Bass:Hotel California, you can check out, but you can never leave. I think I think it just, it just shows that people are really strong supporters of what we do here. And they really believe in what we do and as case if we can, but we couldn't be without our volunteers. They're absolutely amazing. You know, our bereavement volunteers. They're trained to be bereavement, you know, to do talking therapies and listening therapies, I mean, to give up your time to do that he's absolutely incredible. And we could not be without them. And I'll thank them all, you know, whether they work in one of the shops, because our shops bring in over a million pounds a year, you know, thank you to them, whether they're working here on the maintenance or out cutting the grass, which is what I needed to shut the window, you know, we couldn't manage without them. They're absolutely fantastic.
Kay Backhouse:It's, it's this unbelievable,
Claire:Hopefully, it'll be something that people you know, cuz you walk past all these charity shops sometimes, and you don't really look at what they're raising money for, you can you can sort of refer to them by the name almost, and not really realise that, you know, it's a hospice, or it's this charity or that charity. So hopefully now when people see hospice on the charity shop, they'll know where it's going and support that in a in a more encouraging way, knowing you know, how important it is to raise that money? Have you found that doing what like this has actually helped you personally, with your own grief and loss and how you cope with it? Or, I mean, you might be rubbish at dealing with it on your own outside of this and brilliant at your job? I don't know. But how does it affect dealing with your own grief and loss when you're dealing with other people's all the time,
Kay Backhouse:I think it's massively helped me just something that we haven't talked about in the way that it's helped me is the reframing of how I thought about death. And the fact that it's so close and similar to birth, just in reverse. And having worked at the hospice and being a part of it for over well, two years now I've been I've been part of the hospice, my fear of death is very, very low now. And that's, that's huge. Because I think people spend their whole life most people would say they are fearful of death. I wouldn't say I'm not at all because it's a mystery, isn't it? At the end of the day, we don't know. But I'm far, far less fearful than than I was before. And the birth analogy for me is what's what's helped me a lot. And I was just saying to Maddy the other day, that a little fun fact for you, that the average weight of your ashes after your death is almost the same as the average weight of the baby when they're born. And that was just another nice little add to my little toolkit of birth and allergies around death. And I think that we celebrate birth and we rejoice around birth. And we should do the same with death. Yes, it's sad. Yes, we don't want that person to leave. But there is a lot to rejoice, I think that we should celebrate that person and their life and what they stand for, and not hide away. And I think ignore it. And we're missing a huge opportunity to make a difference to somebody's life as they leave and enter whatever the next chapter is for them.
Maddy Bass:Yeah, thanks, Kay. I think that's really, really well put, I would say dealing with grief as a professional is a lot easier than dealing with it personally, I think it's given me some skills to understand that the responses you get a normal, but it can be very confusing, and very, very different for everybody. So my father in law died. And then three months later, one of my dogs died suddenly. And I'd say probably, and don't anyone judge me for this grieved more for my dog than I did my father in law, because it was expected for my father in law, I think probably it was accumulation of grief. But I wasn't in a good place for quite a few months. And I couldn't get my head round. I thought, What am I going on about? And then I had to stand back and say, Okay, if this was one, if your friends or someone you were supporting professionally, what would you say? And so I've got those skills to be able to say to myself, right, stand back, what do you think I had a friend whose daughter died very suddenly, very unexpectedly a few years ago. And I really struggled to know how to deal with that, because it wasn't a professional situation. And it wasn't the situation I was used to dealing with. So I think as you get older, the more experience I have, sometimes the easier it's made it for me. And the harder it's made in other situations, just because she'd become much more aware of everyone's loss being very different. Everyone's grief being very different. And I'm less likely to go in now expecting that I know how to cope. I've been a nurse for 32 years. You don't know what you don't know when you start out. But as I get older, and the more experienced I get, I think I know a lot more about what I don't know. And that makes me much more cautious.
Claire:Well, thank you so much for all of this and hopefully it'll be really helpful because like I said, I don't know much about the kind of hospice area that's why I went and did work experience in the film directors because I don't know much about what happens here. And a lot of these places are a little bit hidden away and hospice is another one that I have on my list at some point I need to go and experience I think because if you're talking to people about death and dying, these things come up a lot. They have to deal with funeral directors, they have to deal with hospices, they have to deal with hospitals. And I just think the more I know around these areas, I feel like the more informed my conversations can be, so it's on my list.
Maddy Bass:You'd be very welcome to come here, Claire. If you're ever in this area, we'd love to see you here. It'd be great to meet you.
Kay Backhouse:Yeah!
Claire:That would be great.
Kay Backhouse:Yeah, we'd love that.
Claire:Brilliant. I will add that to my list.
Maddy Bass:I'll buy you lunch.
Claire:Oh, yes. I want the horse to be there with a horse be there? Because I do I do like the idea of the horse.
Maddy Bass:I can't promise! We probably find some a dog somewhere,
Kay Backhouse:We'll get the therapy dog in.
Claire:That would be good. Yeah. But I love donkeys. So I'm picturing like me in my hospice bed with a donkey being allowed in through the window or something.
Maddy Bass:Absolutely!
Claire:That would be great. But yeah, I think it's, you know, it's important to know about these areas. So I'm really hoping this has really helped people get an idea and dispel fear as well. Because one thing about these careers I want to show people is you don't go into this kind of career unless you love doing this kind of work and have a real heart and a passion for people. It's just not something that people go into for the money. So I want people to know that, you know, they might look scary, it might feel like a scary concept. But the people in there are the best people because they have the best conversations and the biggest hearts quite often. So I'm sure that's come across from how you do talk about it. And we're talking about hospitals as a useful tool to help people prepare in loss and grief. So going into my metaphorical shed, where I'm trying to build all these tools to help people face these things. If there was a tool in there that represented a hospice, helping towards the end of life, which the hospice as a whole, what kind of tool would that be for you?
Maddy Bass:I'd say it's probably rope rope is very versatile rope can hold people together, it can hold them apart, but together still in touch, but at a distance. I think it can help people climb out of difficult situations, or you can tie it around someone's waist so that they might not necessarily know that you're there. But you are the Latin word polyene was the word that that formed palliative, and that means to cloak so I thought about dashi or a tarpaulin, but it doesn't sound quite as nice as a rope. If you could get a hug from a tool shed, that would be what I'd want to give. It's about just being there for people a soft touch or it's hard touches it needs to be.
Kay Backhouse:I'd say scaffolding, or hospice holds that person and their family through what can be one of the most difficult, most traumatic, most complex time of their lives. And that scaffolding gets put up it holds that person holds the family until such time that we can start taking the scaffolding down and they're able to hold themselves.
Claire:Rope and scaffolding. Two things I don't already have. And fortunately, after the arrival of the paint mixing machine from a previous guest, I've already expanded my metaphorical shed so I can fit it all in very easily. And I haven't forgotten, but I haven't got around to it yet. I am going to do an episode looking at all these tools at some point, I just need to find a shed I can record some good rooting around audio in. And if we do go and visit these lovely ladies, you'll definitely be hearing an episode about that. Just like when we did funeral director experience, which you can hear in Episode 77, and my blog seeing my first dead body. If you want to find out more about today's guests and St John's hospice, you can check out the show notes where I'll put links, and as always, if you want to see their lovely faces, pop over to our social media and you'll see them on our episode artwork. Thank you so much for this valuable insight into hospice life Maddy and Kay it really made me see hospices in a different light. And I'm hoping it's done the same for you that are listening today. And a shout out to our newest venture at The Silent Why - Herman. You can now buy and send physical Herman's to people who are really struggling. These are small, blue crocheted companions made by yours truly and posted to you or someone you love to let them know that they're not alone. They're actually the perfect hospice companion to so if you know someone in a hospice are receiving palliative care, why not pop over to www.thehermancompany.com and send them a Herman to show that you're thinking about them. Thanks for listening to The Silent Why podcast today. If you've got a subject you'd like me to chat to an expert on, please get in touch via social media or the website or via email to thesilentwhy@gmail.com. And let's chat...