Everything End of Life.
This podcast is dedicated to talking to experts and others about all aspects of death and dying. You know, that thing we don't really want to talk about!
As a hospice carer and former psychiatric nurse as well as writer and former Theatre director, I invite guests to talk about their roles in and what to expect in the last four weeks of life. What happens to the person dying, what help is there, what to do before and after the event.
Many of the families we go in to see have one thing in common and that is that they don't know what to expect. I thought that a Podcast may help and then discovered so much to explore that is of interest to people such as alternative funerals, what do Hospices actually do, what role do religions play?
So join me for the first interview as we begin this Podcast with Clinical Nurse Specialist Becky Rix where we grasp the nettle and discuss what happens to us generally in those last four weeks.
Time to explore "Everything End of Life".
Everything End of Life.
Jules from Treehouse Hospice: Celebrating Life and Joy in Children’s Palliative Care
Ready to uncover the heartwarming reality of children’s hospices? Join us as Jules from the Treehouse Hospice in Ipswich, part of East Anglian Children's Hospices (EACH), shares an eye-opening tour of this inspiring sanctuary. Discover how this nature-filled environment busts the myths surrounding hospices by offering vibrant spaces like sensory rooms and lush gardens where children can play and thrive. Our personal reflections in psychiatry highlight how mental health care has evolved, blending seamlessly with the holistic approach taken by hospices today.
You’ll be amazed by the array of events and activities available at Treehouse Hospice, from magical winter wonderlands and festive Christmas parties to the unique Tree Fest, a mini Glastonbury for kids. The crucial roles of volunteers, nurses, carers, and the wellbeing team come to light, demonstrating the extensive network of support provided to families. We highlight the thoughtful details, such as bespoke meals catering to diverse dietary needs and the far-reaching impact of outreach programs that bring the hospice's care into homes and communities.
Listen in as we broach the sensitive topic of end-of-life care for children, emphasizing living fully rather than focusing on the end. Touching stories like the joyful wake of a young man showcase how hospices can create meaningful, celebratory moments even in the face of death. We delve into the challenge of discussing death with children and the supportive environment hospices provide to bridge this gap. Finally, learn about the myriad ways you can contribute, from volunteering your unique skills to donating, and make a substantial difference in the lives of these families.
For those interested in what Palliative care looks like at home there is "The Last Kiss" (Not a Romance)
Available on Amazon now
https://www.amazon.co.uk/Last-Kiss-Romance-Carers-Stories/dp/1919635289/ref=sr_1_1?crid=13D6YWONKR5YH&dib=eyJ2IjoiMSJ9._59mNNFoc-rROuWZnAQfsG0l3iseuQuK_gx-VxO_fe6DLJR8M0Az039lJk_HxFcW2o2HMhIH3r3PuD7Dj-D6KTwIHDMl2Q51FGLK8UFYOBwbRmrLMbpYoqOL6I5ruLukF1vq7umXueIASDS2pO91JktkZriJDJzgLfPv1ft5UtkdQxs9isRDmzAYzc5MKKztINcNGBq-GRWKxgvc_OV5iKKvpw0I5d7ZQMWuvGZODlY.fqQgWV-yBiNB5186RxkkWvQYBoEsDbyq-Hai3rU1cwg&dib_tag=se&keywords=the+last+kiss+not+a+romance&qid=1713902566&s=books&sprefix=The+Last+kiss+n%2Cstripbooks%2C107&sr=1-1
Hello and welcome to Everything End of Life with me, jason Cottrellrell and guests and of course my lovely Debbie.
Speaker 1:Hello, hello.
Speaker 2:So this week I'm talking to Jules from the Treehouse Hospice, the children's hospice in Ipswich. It's part of EAPT, which is East Anglian Children's Hospices, but of course there's going to be hospices all around the country. So, debs, you've listened to the interview, but before you listened to the interview, how much did you know about children's hospices?
Speaker 1:Well, nothing really clearly, because luckily we haven't needed to use one, but obviously I knew they existed, but I had no idea of the ethos behind it or what the team were doing there.
Speaker 2:No know, it's an amazing thing. Well, I I mean think what most people think of when they think of hospice is lots of small bald-headed children going through therapy, sitting looking very sad in a hospice, and that is so not what this is and dying, I think you see children only there that are dying yeah, no, and this is an amazing thing. So you've got, when you listen to the interview, you've got to really clock that uh, support network, that this is this spider's web of a network that supports not just the parents, the family, the siblings, uh, from diagnosis to end of life.
Speaker 2:But the end of life might not be. Might be diagnosed when they're two and it might go on until they're 22 or 28 or just keep going, I don't know, you know, and it might only be weeks, days, and then I never really clocked that. We're now talking not just from babies, but from before birth even.
Speaker 1:I know, I know I had no idea.
Speaker 2:No. So, bearing that in mind, it's an emotive subject and, like you, I knew nothing about children's hospices and we kind of want to. You want to take a? You know, if anybody plays chess out there, you want to take this knight's move of thinking oh dear chess, children's hospices, head on the side, I'll donate some money. But, and yeah, do do donate some money, but you know the, the work that they do, the extensive team that they have. Wow, I was blown away and and by what I actually saw when I was there you know, what they provide is just unbelievable jewels.
Speaker 2:What did you say about her when you said she was?
Speaker 1:I said if I was ever going to need to have my children put in that kind of space, I would want them to go to her.
Speaker 2:Yeah, because she's just lovely. Yeah, she's an amazing lady. All right, so without further ado and we won't do an outtake on this one um or uh, an outro, as we say I just want you to listen to this interview about children's hospices. And you know this is about it's not just about donating, but it is about volunteering. So if you're in that area or if you're in an area where you've got children's hospices near you, you know you can do a lot without, and if it's a scary thing for you, you can do a lot without actually getting directly involved. But you can do a lot and get directly involved if you want to. So, without further ado, here's Treehouse Jules and the Children's Hospice. An amazing interview. Hello and welcome to Everything End of Life with me, jason Cottrell and guests, and today my guest is Jules from the Treehouse Hospice in Ipswich, which is a part of East Anglian Children's Hospices. Hello, jules.
Speaker 3:Hi Jason.
Speaker 2:Hello. So, ken, for those who don't know much about the hospice, how about you give me just a very brief overview of this particular hospice, and then we might talk about other ones?
Speaker 3:Yeah, sure. So we're a building that's situated amongst beautiful woodland here in the middle of Ipswich. We are a fairly new building it's about 12 years old now and it has a grass roof and flat slanty bits.
Speaker 3:Yeah, it's incredible a of light, a lot of glass. We have a wide range of amazing activities we do here with the children. We have sensory room ability and we have a wealth of very well trained, very knowledgeable, experienced staff who support and welcome children and families to our beautiful gardens okay, and you've just shown me around and it is truly a beautiful place to be.
Speaker 2:Uh, there's a big wood set out the back, there's little gardens kind of everywhere you look, and the woods has little cabins in it where you can have breakout spaces, counselling spaces. But it is like literally being in the woods and it's a beautiful place. So that's the hospice and then we'll talk about what you actually do here and maybe some generic case sort of ideas, studies. Sure, but first we were just talking and both saying we both started in psychiatry. Yeah, I started, I trained in 1979 to 82. How about you?
Speaker 3:Yeah, I am pretty close along there. So I trained in 1986, 1986 I think it was okay and um. I think I was out in the world doing my thing in the sort of early 90s in the early 90s. Yeah, yeah 91, 19 91 and you.
Speaker 2:But you trained, I trained the several and you trained that yeah uh, and I mean we obviously, you know, if you know one of these institutions, you know most of them you know absolutely because patients are interchangeable. Uh and uh, we have transfers, or we used to. Several's is flat now and you say yours is all.
Speaker 3:Worley is now flats and a very expensive area to live. I believe yeah um not like the nurse's accommodation. Oh my god gosh, I remember shitting up drain pipes.
Speaker 2:I haven't forgotten my key to get me room for that sort of thing. Yeah, uh, anyway but, we digress, um. So I came here today really to talk about, uh, what the kind of services hospices um offer, uh specifically for children, because, as we said before, if it doesn't actually impact your family, your life, it's not something that tends to come up in conversation down the pub or over the tea table, and so I wonder if we can just explore this particular area sure so?
Speaker 3:um, children's hospices are still quite an enigma for many, many people. They really, as you say, only come across people's radar once they come across a diagnosis for themselves, their child or their family with some kind of issue in their body which means they are unlikely to make adulthood.
Speaker 2:Yeah, and by adulthood we're saying 18.
Speaker 3:We're saying 18, yes.
Speaker 3:And this can be really distressing for parents, because when someone comes up to them and says, oh, would you like to have a referral to the children's hospice anywhere in the country, most adults will think of rows and rows and rows of children dying.
Speaker 3:That's the image that comes into their head and you know, to be fair to people, it's probably partly because in their minds they might think of adult hospices being the same thing that you get referred to a hospice when you are at the end of your life generally.
Speaker 3:Now it's very different for children, because we can take referrals antenatally for children that have significant physical issues where they're either not deemed compatible with life after birth or that the complication makes them very vulnerable, and it doesn't mean that they're necessarily going to die right then, but that just they are more vulnerable than another child of their age. And so we have quite a set of criteria, but generally a child with a palliative diagnosis, and that could be a wide range of things from heart problems, liver failure, muscular dystrophy, various other genetic diseases, so it's really wide. Plus, children who have a cancer leukemia diagnosis are also eligible, but we would expect many of these children to outlive their diagnosis, so it isn't that the child is dying when they're referred, but that they have a bigger vulnerability than their other peer group that kind of a life limiting a life limiting illness.
Speaker 2:Yeah, that's a really good. Yeah, I mean it's a phrase that we use because I love it when consultants get it wrong.
Speaker 3:And so do we.
Speaker 2:Yeah, absolutely, I mean coming from that hospice sort of background. For the last few years I've seen it several times where relatives have said well they said they only have a week left and they're playing badminton.
Speaker 3:Now you know what's going on, Exactly Because it's a very unpredictable yeah area and also, you know, the advances in medicine and technology now means that children that would have absolutely died 10 years ago of a hole in the heart type of thing you know they're operating on a strawberry size organ, um now have every chance of living and surviving past that, which is incredible. However, that journey for parents, that uncertainty that um anticipated grief, is so important that they have people around them to support them through that journey, and so, really, I mean we've got so many different parts to our umbrella, but a big part of that is just walking alongside and supporting parents and adults of children with life-limiting conditions, who actually need a cohort of people that understand where they're at.
Speaker 2:Yeah.
Speaker 3:So we're here for the families, we're here for the parents, we're here for the siblings and supporting them.
Speaker 2:Having a brother or sister with a vulnerable um condition is also incredibly hard on the other children in the family they must go through such a range of different emotions absolutely not not just about, oh, I'm going to lose my sibling, but also a little bit of jealousy that the sibling is getting all this attention and love and depending on their cognitive ability.
Speaker 3:depending on their age, they won't understand certain things. So, you know, a two-year-old's idea of death and dying is going to be very different to a six-year-old's, to a nine-year-old's, to a 15-year-old's, very different to a six-year-old, to a nine-year-old to a 15-year-old. We've just done a really lovely supportive piece of work for a family who their child died before. The young lady who came here was a teenager, so well before she was born, and when she was a teenager she started to have a lot of questions about well, will it happen to me? You, you know, will I have the same, you know? And all of these things which actually the parents because they had moved on and they hadn't really considered those other questions that the children coming up after the event would also have, you know, will my children have this problem?
Speaker 2:You know, all of these things we don't think about and that's the beautiful thing about having this concentrated, or these concentrated areas of expertise is that you know, as you say, you've got all sorts of different experts here. It's not just you know your nurses and your doctors and a social worker but, a whole range of, so tell me about who the sort of people.
Speaker 1:Who's here, who's here who works.
Speaker 3:I mean, I need a map of the archers, yeah, the map of the archers, yeah so I'm part of the leadership team here, so I'm the well-being lead and there is a matron and there is a person who manages, so they're called the service manager and we're like a three-legged stool. So there's the three of us really supporting each part of that area yeah and then we have somebody who's the care manager, who sits to the day-to-day supporting of the staff.
Speaker 3:So we support the care manager okay and then the care manager's job is to kind of do the overall day-to-day running of the unit of this treehouse hospice. In addition to that we have otpt, which is occupational therapy and physical therapies. We have the hydro pool, which they support, and we help children and their families with their movement, with their positioning, if they can't move very much with braces and backbraces, you know all sorts of equipment and you showed me that what I loved about that was the moment you walk in.
Speaker 2:It just smells like every other swimming pool, every other swimming pool it doesn't smell medical? No, no, which you didn't sort of expect, really, wouldn't you Exactly? And it's a beautiful little space.
Speaker 3:Yeah, it's a lovely pool around really complex questions like is my child's epilepsy, dystonia or particular presentation, physical presentation? Is that due to the drugs they're on? Can something else be done? You know, is there other things like aromatherapy or massage or sound or sensory things that could support the child to kind of become calm?
Speaker 2:so now you've mentioned all of those different therapies, so do you outsource that or do you have people here specifically trained in those areas?
Speaker 3:so both really um, we don't outsource it as in buy-in, because we are incredibly lucky here at the treehouse and we have a wealth of volunteers as well, so we have people that will give us their time and their energy to support our events. We we run apps lots and lots. People have only got to google east anglia children's hospice look under the sort of family zone events and we run lots of events because part of what we want to do is to be here to support families in their everyday life, and everyday life for families is really hard when you've got a child with additional needs or who are vulnerable and they can't go to the normal. Let's go and see father christmas because actually their child might be immunocompromised so, or dragging oxygen bottles, or dragging oxygen bottles, or whatever, because we have such a wide range of children.
Speaker 3:So actually they don't feel safe to go out in big crowds or places where they feel their child might be looked at differently. So they come and we do those events. We do a winter wonderland, we do Christmas parties, we do pantos. We just had Tree Fest. Yeah, you said that, which was amazing where they had rappers and singers and dancers and just like you would if you went to a mini Glastonbury.
Speaker 2:Yeah, mini Glastonbury, that's what I was thinking. Yeah, yeah, and it was at the same weekend as well. That's awesome.
Speaker 3:So the volunteers and they do the gardens for us. They help with almost everything. They are so amazing. So sometimes we have volunteers that will come in and also support those activities, which is they are a huge part of our workforce here which is amazing, every hospice has volunteers and they are invaluable, invaluable, invaluable.
Speaker 2:Now that brings me on to something else. I haven't finished, sorry, oh my gosh, I'm sorry, Sorry because.
Speaker 3:I haven't even talked about the nurses and the carers. Ah, well. The nurses and carers that work here again are phenomenal. And we have our wellbeing team, which consists of chaplaincy. Spiritual care, consists of what we call a family support practitioner, who first meets the families in general, really finds out how the families are, what they expect, what they need. Not necessarily that we might provide that, but we've got a wealth of experience about who else might provide that, so we outreach so signposting yeah, into people's natural network.
Speaker 3:So you know, locally to them there may be an amazing service that they hadn't known about. Or do you know which m25 or motorway service stations can offer you an appropriate changing place?
Speaker 3:you know those kind of things we have families that travel to cornwall and scotland and they share this information between each other. Where can you go? That's an appropriate stop. Where can I go for my child that's got overload of sensory information and needs space to just be, without lots of noise? All of these things our families share together, which is incredible, and that pretty much is your treehouse lot. Oh no, I didn't miss facilities and catering facilities and catering.
Speaker 3:Facilities and catering, I mean we couldn't run without people doing all the work they do to provide incredible food for our staff, children, families and visitors, anybody that comes. If you want unicorn ice cream, we will give you unicorn ice cream.
Speaker 2:That's brilliant, do you know? Of course, my other job is providing cooking oil. I must leave you a card. I'm sure it won't be one of my biggest customers, but I'm sure, and I love cooking. Do you know what that's one of?
Speaker 1:the things.
Speaker 2:So I think there's a huge pleasure for me and if there's anything you know, if I was given a terminal diagnosis, one of the things I would just want to do would be to cook all the time, to get involved in creating, and I think that comes across here, that this is a really creative place and it's really nurturing to be offered that kind of environment where your own needs are met completely.
Speaker 3:Yeah, you know, when you go in and you think about hospitals and hospital foods, lots of people now just send their relatives downstairs to the Marks and Spencers and ask them to pick something up, and that's no disrespect to people that try and do catering, but the scale and the size of catering in hospitals is massive, whereas we are virtually cooking bespoke for the families that come. If they are vegetarian, vegan, they're gluten free, they're hell out.
Speaker 2:Whatever it is that they need, we will make sure that they get it see, now I'm going to get a bit controversial here because you're absolutely right about hospital food, uh, and I know when I go into some hospitals because I do service them in my other little job um is that a great deal of that food is ultra-processed food. And ultra-processed food has been really flagged by the likes of Dr Michael Mosley, by a whole range of different scientists, as being really not very good for you, absolutely.
Speaker 1:Full of sugar.
Speaker 2:Yeah. So I kind of think you know this is something that hospitals should really set up and take notice of is that they should be pouring money into their catering to provide meals specific to people's needs. I mean, okay, religious needs and diabetic needs, etc. Is one thing, but also, looking at that kind of holistic, how much fat is in this? How?
Speaker 1:much sugar is in this.
Speaker 2:You know how much extra processing has this meal gone through before it went into the microwave?
Speaker 3:you know. So, yeah, it's very tricky, isn't it? But here we here's.
Speaker 2:That's not the case?
Speaker 3:it's definitely not the case. We get deliveries daily of fresh food that comes the butchers and the green grocers and you know it all comes in and uh, our catering chef, our head chef and, and the team are phenomenal. I have to say this it honestly. I, most people here, have to go on an extreme diet after about a year because the food is something else yeah, I'm, yeah, I'm about to launch onto a diet myself.
Speaker 2:I've got to say this and I do need to do that. Um, yeah, so what I was going to say when I veered off because you know I do spark a bit sometimes was to notice how this is the physical building. We talked about this being a hospice and all the people contained within it, but actually your outreach type of programs are also quite huge. Yeah, and, and as we were saying, spider us, there's lots of little legs and arms. Yeah to that. So can you run me through a little bit?
Speaker 3:absolutely so. A lot of our um families don't really come to the hospice very much, but what is very, very important is our relationship with families. So, regardless of that, whether they actually want to come and make use of respite care, for example, or come to any of the events next week we have a band practice. Loads of families and their children come and they sit and they play and they sing and they have a great time. Some families don't want or need that and that's completely fine.
Speaker 3:You can literally pick what you want from the menu if you like, and one of the things that is a particular help to families is the outreach we do with both what we call our symptom management team, the long-term ventilation team, the-being team and our care team. So if a family needs some support within the home around their care, the emotional well-being of the family, the long-term ventilation they're having trouble because the child won't wear a mask or something like this and positioning. You know the child might be wear a mask or something like this and positioning. You know the child might be getting a bed sore or something. We actually go out into the homes. We will go and meet them.
Speaker 3:We also go out into the children's schools and deliver sessions. There. We can meet with families walking in a park. You know, we we are not rigid and I think that is a gift that we have as a hospice, unlike many other services which say you know well, you either come to our building or we don't see you. If you didn't turn up, even if your child was in hospital, that's it, you're off the books. You have to go to the bottom of the queue again yeah you know things like that because we get it.
Speaker 3:We get how difficult it is to have a child with these significant needs and manage your day-to-day life and that, actually, at any moment, your child might end up back in hospital. At any moment you've got to drop everything because, I don't know, they've had a sugar crash or they've gone into some kind of dystonia and you can't get them in the car and get them to a session, you know. So we we have this kind of conversation. What is it that they need, what is it that we can support them with, and where is it best to have that support?
Speaker 2:I think there must also be times for people when none of that is actually happening, but they're just so knackered from being a carer absolutely just go. Oh, I was supposed to be at the hospital today. Oh, I forgot to go and oh, absolutely, you ring up and say, oh no, you're back at the queue.
Speaker 1:And that's a bit unfortunate.
Speaker 2:But that doesn't happen here and I think that is you know, if you're looking at the family, that you know. So you know them on first name terms and it's not Mrs Smith down the road. Patient A, Patient A yeah, it's nice, you know it's julia. What happened?
Speaker 3:oh, just had a bad day, can I come in later. So it's that more relaxed sort of approach. Absolutely, absolutely. And quite often we have children who come for respite care that their parents are, you know, going to have a couple of hours off, a night off, two nights off, and they might ring up and say I'm so sorry, I'm running late and we're going. No, no problem, no problem.
Speaker 2:Don't worry. Don't worry, just get here when you can, yeah, so I mean, obviously it's a 24-hour service. But, like all services, that kind of dampens down at nighttime because all the main data it does.
Speaker 3:But you know, this is something else. That's really quite extraordinary is that we have our processes All good. Quite extraordinary is that we have our processes all good. Hospitals and services of any kind should have processes. Yeah, this is the normal way we do things. Referral can come in via the internet, so we have referral forms on the internet. Parents can refer themselves, professionals can refer into the service. So it doesn't matter who's referred, as long as you have permission from the parent or care yeah.
Speaker 3:Okay, so you can refer into the service and there's a process for that. So every Tuesday the senior nurses and matrons will meet and they will look at the referrals and they say yay or nay, depending on our criteria, and then on the Wednesday it goes to its locality. So that's either Norfolk, Cambridge or Essex Sorry, Suffolk and Essex and it's discussed and the processes go on and the family are contacted, etc.
Speaker 3:Etc. Now that's OK, unless suddenly on a Saturday night you give birth and your child has a significant issue and they say, actually, you know, we don't think this is life-sustaining. Would you like to go to a hospice with your child? And we do have those moments. And we, because we are open, we are accessible we're not always open 24 7, because there are times where we might be closed for training or something like that but we are accessible 24 7 and if at any moment we are closed, we usually close christmas day, okay.
Speaker 3:But for the last few years, christmas eve comes and christmas day we're open because people step in and they go. I'm gonna do this, I'm gonna you know, I'll change my plans, I'm coming in, I'll cover this, we'll do this and we open for at any point we do emergency transfer for people, because it's the child and the family that are the important things.
Speaker 2:Yeah, so I mean, you know, that's a bit mind-blowing really, one of the things that we have at St Helena. Down the road there is a thing called single point.
Speaker 1:Yes.
Speaker 2:And that sounds very much like you have that same ethos as them. Single point for them is anybody can phone up and get advice there, and then, or even a nurse come out, or if there's, you know, somebody's in pain, they can give them advice on what to do or signpost them to work 100%, and that is going on here, yes, it is so we have a symptom management nurse on call process where you can access that.
Speaker 3:If you've been referred and you're part of our hospice service, you get that number and you can access support 24 7 that's just amazing.
Speaker 3:It's incredible because you never know when you need that help and support. And a child anybody that's got children knows that no two children are the same, let alone children who have a different diagnosis for something. You know, what might be normal for a child might be x number of beats a minute, this temperature, that kind of respiratory rate yeah, but actually for certain children that's not the case. You know, we had one young lady who, um, defied the odds for several years. She had liver failure and, uh, her bloods and stuff came back and they were like no, she's really not well. You know, she might not make the next month, year later there she is tearing around in her wheelchair.
Speaker 3:you know, and that's what we provide. We provide the space for children to live their best lives.
Speaker 2:Yeah, I mean you can see that in every essence of the building, uh, and the grounds you know, is this stuff there to try to suit or be able to suit?
Speaker 3:we're flexible yeah, everybody, yeah we flex around the needs of that child and that family.
Speaker 2:Yeah okay, so you mentioned, um, schools. Uh, one thing I'm wondering is is there a outreach education program of some description, because that's a really tricky one going into places like schools?
Speaker 2:I mean, we have, uh, a friend of mine, brilliant lady emelda hodgkins, and she does the education outreach for the hospice, for the adults side of things which goes into care homes adults and even more adults, if you should call it that, and she talks about and educates on end-of-life care and what that looks like, and what the last four weeks might look like, what the last two years might look like, et cetera, et cetera. And I'm wondering does that happen for the children, or is that a really too sensitive?
Speaker 3:area. No, it does. It does happen. We don't do it in the care directorate.
Speaker 2:No.
Speaker 3:But we have our fundraising teams and our outreach teams under the fundraisers and they go out into a wide variety of situations where they're asked and you know they advertise that they do it and then we are kind of approached to go in because it has to be sensitive and appropriate, and we go out.
Speaker 3:We have echo the elephant all right is a mascot and he goes with usually if it's a younger sort of children, quite often into um adolescent kind of learning spaces and into workplaces and a variety of others. And then of course they run all of the fundraising activities to really try and open people's awareness of what a children's hospice is and how, how very much it's about living, not the dying not the dying part.
Speaker 2:Yeah, I mean, the dying part is the end game, and it's the end game for all of us.
Speaker 3:Yeah, it is absolutely.
Speaker 2:We're all going to get there I mean, this is why this podcast is is uh, I'm able to do it because nobody wants to die specifically. So you know, and that's the horrid bit, but everything leading up to it, you know, can be a lot better if we're a bit more savvy, a a bit more educated, and even after it, for all our relatives, you know, I mean, we had I talked about it before but we had a young man who had a funeral in as much as he had his wake before he passed, he knew about three weeks beforehand. In his garden he had a burger van, he had jugglers garden, he had a burger van, he had jugglers, he had a band. You know he had invited everybody from all across the country and the world to come in say hello and say goodbye and he had all of that.
Speaker 2:Uh, and, all right, you might think that's just his memories for the next three weeks, because that's as long as he's got. But when I met him it was the day after that particular thing. He was just made up with all the photos he'd taken, other people had taken for him. And that last three weeks was made much more special by having had that particular time to say goodbye to all his friends and I'm wondering uh, you know, with how much of their is their self awareness for kids in adults is something they can psychologically deal with, but for kids.
Speaker 2:How does, how do you handle that?
Speaker 3:that particular bit. I think it's very difficult, um, but totally possible, because often people want to protect or shield children.
Speaker 2:Yeah.
Speaker 3:And actually a bit like natural swimming. Children will swim naturally.
Speaker 2:That's a beautiful way of putting it.
Speaker 3:The anxiety is actually the adults, not the child's.
Speaker 1:Right.
Speaker 3:And the anxiety is my child will be so upset when they hear this. I don't know, I won't know what to do with them. And generally, and there is a lot of literature, there's lots. I mean we've got a bookcase here full of books and stories for all age groups and all cognitive abilities that describe dying, death, ending life, finishing, type of you know, somebody being sick, all of that sort of stuff, the emotions that come being sick, all of that sort of stuff, the emotions that come up and and all of that journey.
Speaker 3:So the actual issue isn't generally the children. The issue is genuine, the adults. How do we support the adults around the children to talk to them naturally about this naturally occurring event? It's one that they didn't want to happen at that time of that child's life? Absolutely, we have a culture where we don't believe that children should die before adults. That's that's that's where we're at. However, children do die before adults. That does happen and it happens now and again. We have have between maybe out of the big cohort we have over 100 families. We may get six deaths a year.
Speaker 2:Right.
Speaker 3:You know, it's not all the children, A lot of children. More children transition from our service than die.
Speaker 2:Which is really lovely to hear, which is great, isn't?
Speaker 3:it Right, but we still need to talk about it because it's a reality that happens yeah so, actually, what we find is how do we support the adults to be around the children to talk about this? Because children are great, they're like, oh okay, so their life will end. What does that mean? Their body stops working, the heart stops working. Well, where do they go? And then the adult goes. I don't know, I don't know what I'm going to say, I don't know where they go.
Speaker 3:And then we so the work we do quite often is with the adults first, when they ask you this question what is your belief? Because it's not for us to say there's a heaven, there isn't a heaven. They go somewhere, they don't go somewhere. Yeah, that's not our, but it's for that family to say this is what we believe in our family. This is to say, this is what we believe in our family, this is our culture, this is our belief system, this is what our friends and family believe. And quite often, if a parent can do it well, they'll say I believe this, but sometimes other people believe this do you know, I've.
Speaker 2:I was talking to a taxi driver who was um muslim and he was telling me about the, what they believe and the fact that, uh, when you're dead, you have two angels come down and they ask you certain questions and if you've led a good life, then that's, you know. You can, on you, on your way, on you go, and uh, and I, and he said, and even some muslims who don't you know, can't answer those questions because they've not led a good life, nobody's all, we're not all perfect, uh and um, and that's what we believe. And he said and what do you believe? And I went, I'm a bit stumped. What I believe is I believe in the power of belief, so I don't believe what you believe. I don't really believe in, you know, in in an afterlifelife myself, but I'm not sure. I know that. I will only discover that when it happens.
Speaker 2:So, but I also know a lot of people who do believe. Some of my hospice friends are devout Christians and some are devout Muslims and you know, their belief systems are theirs and so it is about looking at what they. You know, when we're facing death, I might suddenly get very Catholic. When I'm faced with the end? I'm not quite sure. I want to definitely come in here and I've got things to confess. You know, when I'm about to pass away, I'm not sure, but I think that it is so important, isn't it, as you say, that people are allowed to express their belief, but to children, not to impose that belief, but to say this is what I believe, exactly and and that there are other options.
Speaker 3:there are also some beautiful books. Badgers parting gifts is an example of a really lovely book where he goes around, he knows he's got the end of his life and he talks to all his animal friends and he leaves them little gifts and you know, that's the Hair-Shaped Hole another really beautiful story. I mean there are thousands of them. People have written the most beautiful stories that children can really connect to. So the issue is never about the child, it's usually about the adult, and that's one of the things that I, you know, I think about myself is what sort of death would I want?
Speaker 3:yeah and I'm going to ask you what sort of death would you prefer?
Speaker 2:okay, I would like a beautiful death yes all right, that's how I want. Uh, I mean, I have seen this event occur for so many other people so many times now.
Speaker 2:It's. What I would like to happen is that, yeah, my appetite goes and I, you know, I might not want to eat as much over a four week or a few weeks period, and then I want to sleep more and more and I want to feel comfortable. I don't want to feel anxious, um, so if I'm getting a bit anxious, I'm quite happy for somebody to get me a bit stoned. I'm. I'm not gonna complain, I'll have that on record now, okay, feel free, um and uh, and yeah, I want to just slowly, slowly sleep, which is what a lot most of the time is the way that it happens. People just slow down I've called it the unwinding clock, yes, and then they just stop description yeah, yeah, yeah, we want a pain-free gentle death.
Speaker 3:We want to step out of this life into whatever it is you believe yeah, in a gentle and fluid way. That's what we want, right? Yeah?
Speaker 3:and we want that for anybody, whatever age they are, and so a big part of what the symptom management team and the well-being team do, together with the care team and facilities and the chefs and everyone else, is to provide that, if it comes to it, yeah, which often it doesn't, but if it does, we are extremely expert in helping and supporting families, adults, children, aunts, uncles, grandparents through this process of movement from life to death in as pain-free, gentle, relaxed way as possible.
Speaker 1:Yeah.
Speaker 3:And that involves a lot of support for the family usually yeah rather than the actual child who's dying do you know?
Speaker 2:you asked me, which was a brilliant question you know how would I want to see my death? Uh, what I never thought, never, never occurred to me, was to think about anybody else. How selfish is that?
Speaker 1:I just, I just something, and that's how I thought, actually I'd like my wife to uh have gone before me, which would be quite nice, so that she was to think about anybody else. How selfish is that? That's a hard tool.
Speaker 2:I just suddenly thought, actually I'd like my wife to have gone before me, which would be quite nice so that she doesn't have to grieve, and I'd like my kids to be away on holiday having a great time. That'd be fabulous, and they'd just send me a little TikTok of whatever they're doing just before I pop my clogs, and that'd be. You know, I'd like that. So I wouldn't want to have people being unhappy though I know that part of the grieving process is they're going to be.
Speaker 3:And that's okay. You know that is an assumption for this Western society. Yeah, very much so, but actually, we have been part of some really beautiful endings. Well, of course's, it's devastating and that's upsetting, but the more prepared you are for it, the less you have a crisis around that time. So, if you can be supported, have thought through what is it going to be like. You know, we had a young man who, um was a very active member of the community, um in one of the outlying regions, so not not in ipswich but, further out and um, quite a colorful character, shall we say, and he had cancer and he died.
Speaker 3:Now, he spent quite a lot of time with his family and with us preparing for that, so the actual time where he left his body, where he died. However, you want to describe it however you want to describe that the actual hours and before and after that was very calm for everybody.
Speaker 3:Yeah, because there was a lot of preparation, a lot of understanding. A lot of you know exactly what you've said. I mean, it's lovely that you've talked about people don't want to eat because their body is slowly closing down, and for parents that can be really tough. Well, it's oh, I need to feed them. I need to feed this, you know, and actually it's going to do them more harm than good.
Speaker 2:they'll probably be sick if you try and put food or one of the things we have to get to, uh, impress upon people is, you know, if you're going to try feeding somebody that they might very well choke, it's going to go down the wrong hole exactly they'll become more distressing exactly than you trying to give them a lasagna.
Speaker 3:Yeah, exactly, and that they will sleep more and they will be less conscious. And but actually it doesn't mean to say that you still can't play favorite music or talk or read stories, or however it is that you want to connect with your child or that person. Yeah, that prepares you as much as it prepares them, because if you asked your children, you said, oh, I'd like them to be on holiday. But if you asked them, they'd probably say, actually, I'd rather be around. I want to support my dad, I want to be there with him through this journey.
Speaker 3:Or they might not. They might say no, I'd rather be an Ibiza.
Speaker 2:So you know You're sending me an inheritance, but it's fine.
Speaker 3:It's having that conversation? Yeah, absolutely, and we don't, as you say, preparedness.
Speaker 2:And that's very interesting because that comes up in so many of the other podcasts is that and I've said this before I was another friend of mine who was a taxi driver and he's from Uganda, and I said you know, mate, are you immortal? Is it all black people? Are you immortal? He said why? I said because I've worked at this hospice for four years and I've only seen one black person come through our doors. How does that happen? No Jewish people, no Chinese people. You know where are you all? And he said well, because culturally we're all different. And you know, I've got brothers and sisters and uncles and aunts. I've got so many that if my mother gets sick, there's about 15 different phone calls within 10 minutes saying what can we do, what's going on, what's? And they're, and they've lived because they're. There's so many of them. They see death more frequently than we do in our nuclear family, because most of us, let's face it, you know, statistically we don't see anybody die until we're around about 60, 70, hopefully, or 50. Because we don't have those huge connections.
Speaker 3:It's not part of our day-to-day experiences. And you might be sort of 15 or 16 and your grandparent passes or something like that, but you're not usually actively involved in their death, and so you're right, but you're not usually actively involved in their death, and so you're right. It's not until we come to a point, usually when we're older and our own parents or partners die, that we really have that experience and that's why it scares us, because it's the unknown.
Speaker 3:Yeah, it isn't really about the death itself. It's the unknown. What's it going to be like? Will Will they be screaming, writhing in pain and you know all the rest of it and actually, because people are part of our hospice, they get the support, they get the medical intervention, they get the you know, the pain relief. They get everything they need, or aromatherapy and music, or sound or light, whatever it is they need that's going to give them the peaceful place they need to be.
Speaker 3:That is what they get and I would say that's about five percent of the 95 of the 95 of the stuff that you do here, absolutely, absolutely, but the reason we do the 95 bit is for two reasons one, because we would have nothing else to do for the rest of the year, and two, more importantly actually, is that we want to build that relationship with our families.
Speaker 3:We want them to know us and we want to know them. We want to know that little Johnny loves Batman and when he comes in for his care, his respite, for his visit in the daytime, for a quick fly pass, for the open gardens. We want to know that little Johnny loves Batman so that we can say, wow, look what we got for you. You know, here's a comic, here's a Batman cartoon to colour in, here's a whatever. You know, because we want to. Each of our families is individual.
Speaker 2:To us they're not just a number.
Speaker 3:Yeah.
Speaker 2:That's just. You know, it's an amazing thing Now, okay, so let's veer off completely and get administration here for a second, Because we talked about East Anglian Children's Hospices, which, you know, the acronym is EACH. And I think that's one is EACH as an individual, and that's just lovely, isn't it really?
Speaker 1:Yeah it is how coincidental might be.
Speaker 2:So how many roughly? I mean just generally how many children's hospices are there, let's say in East Anglia? I mean, would you know?
Speaker 3:Yeah, well there's, we have three. That covers most of East Anglia. Yeah, that covers most of East Anglia. And then, once you get, you've got Essex. So you've got Little Havens in Southend and they cover that side of South Essex right up towards Colchester, where we sort of take over the other side. Then you've got London, and in London there are many more. So there are quite a number of children's hospices in London, like three or four, I think because obviously the population is very dense, yeah, so it's different.
Speaker 3:And then you move out to sort of bedfordshire and so on. So every county generally does have a children's hospice. Um, I'm saying that with almost certainty. Um, scotland's slightly different. So there are a few in scotland, but again because a lot of it's very rural and there is not as many per square mile, if that makes sense. But some countries don't have hospices at all and really the standard, the plethora of things that we offer in East Anglia Children's Hospices is wider, more than any of the other hospices, and so quite often we are asked to give advice, support and reach out to the other hospices. There's a hospice called Hummingbirds in Australia that was built and we were very much involved in supporting that development over there. Were very much involved in supporting that development over there because I talked to you about the?
Speaker 3:outreach, the transition we do for young people when they reach 14. We start transitioning out with two of the hospices in st helens, where you have that close affinity, and with st elizabeth's here in ipswich, and they run this amazing service called Zest where our staff with their staff begin to link together and the families and the children and young people are invited there for activities and care and support and conversation so they get to know the different services too. So hospices as children's hospices are not as many as adult hospices.
Speaker 1:I don't think.
Speaker 3:But there are usually one in your locality as well as some countries, but there are some countries that don't actually have a word in their language for hospice.
Speaker 2:And yeah, I mean it is quite a European sort of British white culture thing that is beginning to spread, and I think it is a good thing that it does spread, because even if you have families who are looking after their own relatives because they've got such an extended family, there are still things I think that we can learn from them and that they can learn from us, specifically from the medical side, but also from the um, just just emotional supportive side so um, so yeah, like listen, I'm gonna have to bring this to an end.
Speaker 2:I could sit here all day and there about this, um, but it's been an absolute pleasure. Uh, jules, speaking to you, and how do people get in touch if they want to volunteer or donate?
Speaker 3:they want to volunteer, then and they want to donate, there's a website and you just go onto the website. There's a lovely contact page and they can just put their details in the contact page and I can absolutely assure you that that gets looked at every day and they will get a response and they will be diverted to wherever. Now, if they want to volunteer, there is a whole volunteers page describing some of the volunteer roles we have here. What would they like to offer? And they can apply to be a volunteer and go through that process as well, and we absolutely need all of our. Whether you like gardening, whether you like doing the washing up, whether you like cooking, whether you like painting, whether you like helping out at reception and doing admin stuff, whatever it is that you like cooking, whether you like painting, whether you like helping out at reception and doing admin stuff, whatever it is that you like doing whatever expertise you've got to offer, we will make the most of you.
Speaker 2:That should be a tagline, wouldn't?
Speaker 3:it. That should be a tagline we will make the most of you Because you're amazing. Oh, thanks, Jason.
Speaker 2:Oh no, an absolute pleasure and hopefully I can come back in a year or so yeah, please do and we'll see. You know where you are then yes, absolutely.
Speaker 1:All right once again, thank you very much, jules, you're welcome. Bye, thank you, I'm going to go ahead and do that, thank you.
