Why The System Fails Carers In The UK

0:00Hey there, it's Wayfair here, where delivery and setup are as easy as a few taps on your phone. You're relaxing in an old hammock, scrolling Wayfair's app, when you spot it, a brand new patio set. Next thing you know, Wayfair delivers it right to your patio and sets it up. Oh, you need a new grill too? Alright, Wayfair's got you covered. With Wayfair's room of choice delivery and fast expert setup on qualifying orders, life gets a little easier. Visit Wayfair.com or the Wayfair app. Wayfair, every style, every home. One of the things I love about Bold Politics is the amount of policy experts we get on to talk about their area.

0:37Today we're going to be doing things differently though, because we are going to be talking to policy experts, but experts in their own lived experience. There's a lot of conversations in the country right now and for the past decade or two about care. Why is it not funded properly? Why is it failing people? And what could be done differently? But rather today than talk to solely a policy expert, I wanted to make sure that we platform policy experts in this area, people who are actually or have been carers themselves. So today I'm delighted to be joined in a different studio by JC, by Edward and by Isabel.

1:09This episode is sponsored by Crowdfunder. Bring your bold idea to life at crowdfunder.co.uk forward slash bold. And to kick us off, I'm going to ask each of you in turn to tell us your own story and your own words and share as much or as little as you like. I'm JC. I cared for my mum for 12 years up until recently. So technically, I'm a former carer. My background is nursing. And yeah, it's been quite a journey. Thank you very much, JC. So I'm Edward. I'm 26 and I take care of my mum who has lupus. And I care for my partner who's got a muscular skeletal condition and a neurological condition. And we've done that for the last four or five years.

1:52Thank you. And then just sticking with you for the moment, Isabel, I mean, it's a very open question, but what's it like to be a carer? What's the kind of the impact of it on you? There's so much to say. It has been, it is rewarding. People do say it's rewarding and it is rewarding. I've learned so much from it. I'm kind of just towards the end of training as a psychologist. So I think I'm a naturally sort of caring person. And it's, I've learned so much as a psychologist in that way, but it's incredibly challenging and isolating at times. I think it's not something that I expected to happen. And my partner got progressively ill kind of over a couple of years.

2:34It took a long time to identify kind of what was wrong with him. And there was very little support. And there hasn't been that much support, even as we've kind of known what's going on. So, yeah, it's tough. But I'm kind of, I've learned a lot from it. I think JC and I were talking about how, you know, when you're kind of, I think now I've kind of got used to caring a little bit more and it's a little bit more stable. You're able to look back and kind of see what you've gained from it. But there are points in it where you kind of just think, yeah, where do I go from here? Who can support me? And it feels really hard to find out what can be done.

3:17And JC, you said you were caring for your mum for 12 years. How was that? Well, it was tough, but I think a lot of the challenge was within myself internally. You know, my expectations I put on myself. You've got your loved one there, you want to do the best for them, and you've got barriers that you face, you know. The system doesn't make it easy. Just coordinating appointments and everyone seems to be talking, not liaising with each other. So you're repeating, often repeating the same story. You want to get results. It's just a constant battle. A lot of it was a battle, which looking back, I kind of resent now.

4:06That relationship I had with my mum, with mother and daughter, I feel that was stolen a little bit because you're so consumed with the appointments, the you know fighting for things to be right and to be to be the best that they can be for your mum that you that relationship as mother and daughter is kind of a little bit blurred and you're you're you're a carer it's very task orientated so being with her and that connection we had I feel a lot of that was was lost looking back I really treasured the time we had together but so much of caring is unseen and invisible you know the the weight of that responsibility that we carry we carry internally it's not seen you know the the the sleepless nights the anxiety the fear the anticipation of that person not being well and you you not you falling short of the mark those are the things that I struggled with a lot and it did have an impact on my mental health and still, what, five months after mum has passed on, I'm still carrying that.

5:20And you said that it's often invisible and unseen. Am I right in thinking you didn't realise you were a carer until quite like you were caring, but you didn't formally realise you were a carer? You know, I was working. I was a nurse. My thoughts of caring was very physically orientated, doing physical, personal care. For me, it was the emotional support and just coordinating everything. You know, the aim is just to keep mum well and keep her happy and keep her enjoying an independent life. It's not really something that you think about, really. Am I a carer? And we're speaking today partly because we reached out to Carers UK, an amazing organisation that link and provide support networks for carers.

6:06Is that how you then realised you were a formal carer? Or how did you realise? Did someone say to you one day, do you know you're a carer? Actually, I was walking past my local carer's centre, going to work and struggling and struggling, but not knowing what I needed. But I was struggling and there was a leaflet in the window. And I thought, actually, that's me. And I thought, actually, I'll go in. What's the worst that can happen? And as soon as I went in, I realised they did have an empathy. They did have that understanding. And I thought, I'm in the right place. I'm glad you found them. And Edward, if I can come to you, how's it been for you being a carer?

6:47I mean, like, thank you both so much just for sort of grounding and Zach, thank you for just giving the space for us to speak. What's it been like? So just for context, I've been taking care of

7:01I've had the, what's the word? I've seen a lot through sort of care services. So I was quite fortunate. I was in school and I believe my teachers picked up that I could be a carer and this is what, 2006. So, you know, we had the phone call. This was with Young Carers Crossroads. So this is in Lambeth. And, you know, we had to sit down. We identified these different things. And, you know, I was inducted. I went to a homework club. We went on weekends, weekends out, day trips. And then I remember this would have been 2011, 2010. Austerity. And all of a sudden, you know, you'd go to sort of young carer sessions and you'd be writing letters to your MPs, to your PMs, because we were at risk of losing the space that us young carers would come to.

8:02And I very much remember writing a letter to a previous Prime Minister, just asking if we could keep the centre open. And we did it, we didn't get to keep it. I remember 2014, there was another, and we have that conversation a lot about youth centres, another youth centre that we'd come to, again, appealing to local government to keep it open. and unfortunately losing out and then private services coming and taking over the space. Being a young person, caring for my mum, it was weird. I could come from the socials.

8:39I remember feeling very, and you said something earlier, there's an isolation to it. You'd be in school and it might be, oh we're going to the cinema. How do you explain to people you can't go in the cinema because you know so that's one side but also you know within the system there's teachers that don't understand the concept where it means to care and so oftentimes i have to keep my phone on um i need to have my phone on me i need to check it to see how my mom's doing and you know you get confiscated and then you're having you're having to tussle about why you need your phone. So as that, you know, you come to school late at times, your uniform is in, and teachers, you know, back in my, weren't able to pick that up or identify that.

9:25And so then I was, you know, being pushed into detentions, I'm getting excluded. And so that, you know, that emotional aspect where I need that support wasn't there. So you can imagine how, like, from all these different facets, I'm being filled. I have seen so many people come go my peers my community of carers where every time a new iteration of like a caring service would come up we would have lost other carers that have gone because you know the the networks don't remain the same and so it's it's been painful and I see I still see a lot of my friends who are still carers that have they haven't had those services you know JC like you said this is I'm taking care of my mum you know you I'm doing A levels and I remember I don't know if it was my English paper English lit the next day and um my mum used to sleep with a sleep Appenue machine and we were up trying to get it to work and because I've you know you use a machine to sleep I wasn't confident in leaving us I'm literally revising for my English paper while I'm sleeping it's like these are the things you have to deal with because then how do I ask for extra time or extenuating circumstances like what he's helping his mom go to sleep you know um and then going to university was a that was a big thing because I'm like hey I can't go I can't leave London because that someone needs to be here and you know I lived I live with my little brother he's now in uni and that was a whole thing in itself and luckily you know we were able to secure a carer for mum and so it was a lot easier for me to go but even then that there's always that tether you know um nose anxieties and then you know being a young adult where now you know and I'm 26 now and there's the issue around sort of care contributions or having to pay my mum to pay towards the carers.

11:10And there was a whole, there was an error that had happened with adult social care. And you know, you have to fill out these really long forms of like proving that you're sick, you know. And I'd hear my mum on the phone to social care or to local government just, oh, like, you know, I need help with this. And, you know, I, and this isn't to brag, like, I have a master's degree. Like, I've been in rooms, I can speak. It's my mother that told me all of these soft skills. And to hear her on the phone to people that are supposed to help her public servants and she's being gaslit and it's so frustrating and there's that double labour almost of having to then do the admin.

11:43It took me like eight months and that's just because I had the networks to be able to reach out to my counsellors, reach out to other people that work in care to help me appeal this and that's just because I had the networks. I'm thinking about all these different young adults that have to do or cope with fighting. I say all of that to say that I'm very I'm speaking from that from that experience I'm also very happy in some ways to see you know younger younger younger carers now sort of have there's a lot more awareness in schools it's not enough but there are awareness now I see assembly I used to work in a school so we'd have caring assemblies coming and there's like a young carers designated lead but I know that's not the case for a lot of London schools you know and I'm happy that now there are people that don't they haven't necessarily had to miss out on some of the gaps that I have growing up.

12:33But there's still a lot that needs to be done, in my opinion. Yeah, I say all that to say that it's a beautiful community to be in with people. And there's a lot of ups, there's a lot of downs. I agree with what you were saying earlier, just about it's very invisible. You don't really see it. There's not a badge to say that, oh, I care. You know, there's just that weight. And again, it's a real privilege to be amongst carers, because then you can drop that temporarily. You can just be... When people get it, it's just like, OK, you don't have to justify, you don't have to defend, you don't have to explain.

13:09You just be. And the identity of being who you are, that gets lost. I feel validated, you know. OK, I feel guilty. Oh, I was irritable and I was a bit short-tempered. It's OK, you know. You don't feel judged. that's not very caring is it I always used to hold things inside because I thought if I say it to someone who doesn't understand they're going to think oh what a terrible carer she should know better she's a nurse these are the thoughts that I'm thinking internally so with carers and with Carers UK they care for a cuppa every Monday and we can just talk and we can just be I can cry if I want to cry I can rant if I want to rant I can just be and that is very valuable you know it's very very precious to me I'm instantly struck actually by how positive you all are about your experiences obviously that's not to take away from how harrowing and I think we'll get into some of the detail of that but um I know Isabelle you mentioned that it's quite beautiful actually to care for someone I would you were talking about the kind of peer support network and JC you're talking about the the care for a cuppa love that and something that's been coming up and thank you all for sharing all those I mean they're incredibly powerful um we've heard like already quite a lot of talk about the system i think all three of you at some point have talked about the system uh almost seems like a silly question to say is the system working i guess another way of asking the question is how is the system not working for me caring in itself is easy and hard just like any other job is but the problem with caring is that you have to do it 24 7 even when you're not with the person and if you're in a normal if it was seen as a job you'd have colleagues you'd have a manager you'd have someone to support you and the system I think should offer that through social care or through your workplace or the NHS the doctors but for me I kind of know I guess by being here I'm quite a what is the word like I'll look into things and I'll research I know what the system should do to support me and and I haven't found that that's happened so with social care I was in one borough and they kept I tried to arrange a carer's assessment which is basically where you can talk about I think where you can get carer's allowance but also they should talk about other things to support your physical and mental well-being and I was working part-time at the time and I tried to say can you call me when I'm not working because you know it's hard enough to to juggle work and they kept calling me we'd arraigned a day and then they just wouldn't call and I'd be waiting around all day which was so hard as a carer when you're just like there's so much you're juggling and they kept calling me on the wrong day and then they discharged me because they said it wasn't engaging with the service then I moved boroughs and I tried to get another carer's assessment and um I think they'd forgot about it or they lost it so I had to chase up so it's like always you fight so much for the person that you're caring for but then to fight for yourself as a carer is like it's so exhausting um and I had my carer's assessment uh and you know the social worker she was she was lovely but it was kind of okay well you don't qualify for carer's allowance because I'm a full-time student and we don't get carer's allowance and that's it and and there wasn't a kind of a follow-up it was oh do you know the local carer center yes I do they're the ones that told me to to speak to you but I you know it was beginning to have an impact on my physical health and my mental health and I expected there to be someone that would sort of have an eye on me or like to think about that and to sort of say you know if if I feel like I can't keep caring or if I need respite that was one thing I did ask for I just didn't hear back about whether I would get respite until I called and they said oh yeah no there There isn't really anything that we can do.

17:04And then with the NHS, you know, I because I've been in health care. So I really respect the social workers and the doctors and everything like that. But sometimes I think it's just doctors would forget about the impact it was having on me. So my partner was in hospital for about a month and it had been really difficult at home caring for him until we got to the point that we were in hospital. And I really hoped that when we were in hospital, that would sort of people would see it. And there were people, there were the paramedics and nurses who would see me kind of day to day. They kind of got it.

17:38But the doctors or I guess the system as a whole, they didn't really say, OK, now we're discharging him. We can see how hard this is. We can see you've been here 12 hours a day, every day for a month looking after your partner. The nurses haven't been, you've had to help with this. So now we can see that we could. let's do this to support you or let's come up with a plan for when now he's discharged and I was just told um I was told to call the police if I need you to support because my partner is like um because his neurological condition had some changes in his personality which obviously I wasn't going to do that didn't feel like the right thing for me and actually there was one thing they referred us to a neuro navigation service where we got an occupational health and a neuropsychologist who were there to support him kind of regain his independence learn how to do basic things like get a drink of water and things like that again but their funding was cut so and they they saw me they they paid attention to me they asked how I was but that was the only service that I really found that so um I just yeah I would go on the Carers UK website and sort of look at okay where can I get help like who can support me and what are they supposed to do and then I'd get to that space and I think maybe people kind of thought okay well it's it's a financial thing like we should do carers answer obviously that's great as well but it's also just I wanted someone to see me and I wanted someone to hear what I'd been through and what I was doing and recognize that I was doing that 24-7 even like you say when you were at school like when I was at work I was you know constantly worried or checking my phone or sending reminders and things like that yeah so I feel let down by the system basically I don't feel like I've been supported unfortunately and it's something I hear often that this isn't about the individual people in the system who are working really hard often with the best they've got it's kind of a structural issue is that your experience too Edward in terms of interacting with the NHS and the adult social care system?

19:44It feels very siloed there's no follow through there's no link you go to one clinic and you go to your GP but they don't have they've not communicated to each other um again local services you speak to social care they haven't commute like it's just like a big kerfuffle no one seems to be speaking to anyone um yeah no one's speaking to anyone's there and jc described earlier of having to tell the same story over and over again to different providers is that your experience too constantly constantly i mean you know i take for example where I mentioned earlier with Moana's contribution to care. I spoke to like 36 different people, like, and I have like this huge email thread spanning through different months.

20:27And it's just like you're saying the same thing, same thing. This person said this hasn't been passed over. This person has left the organisation. There are no notes. There are no receipts. You know, you're met with cold calls. This gets cancelled. It's, um, it just feels, it can feel very like a, it's not a chore. Chore's not the word I want. It's, it feels like a labyrinth. because you're dealing with those active situations where you're met with open hostility. So you've got that and then you have the gigantuan task of filling out a carer's assessment and then you're met and told you don't qualify for that.

21:00Or you don't qualify, you know, and then the person you're caring for doesn't qualify for this because they've missed out the fine print. So it's like there's no one available to help you fill it out. You do it yourself. You've been told you're doing it wrong and it's just like it's a cascade. I think people listening to this are like, that sounds like hard work anyway, even if you don't have other things going on but if you're honoring the emotional and physical toil of looking after someone or people and then add all the admin I can imagine how that's just horrendous um JC you've kind of got I guess several perspectives on this though because you've worked or you work within the health care system as well as experiencing it as a carer yeah I mean like um it's been said before we know the people who are working are working there with good intentions they're passionate they're dedicated but uh I think it's just the the infrastructure of the system, you know, things are so not human centred.

21:55I got a text yesterday from my GP surgery saying, I believe you are a carer. Would you like to come in for some, would you like some support? And I could have done with that support. Thank you very much last year. But guess what? You know, I'm no longer a carer because my mum is linked to my account. So things are being missed. There's no, I mean, I think the GP surgery is a really good opportunity to identify carers. You're talking about, you know, recognising whether you're a carer. You know, it's just simple things like putting a little flag on your note saying carer, then maybe inviting you in to see what sort of support you need it's a great opportunity but I think a lot of opportunities are being missed you know and these opportunities could be very simple solutions right on our doorstep where you you do have that human connection and you're not a number you're not a postcode um because sometimes often it does feel like that and you know and that for me I don't feel valued at that you know I'm more than that much more than that but we're we're sort of peddling away hamster on the wheel you know 24 hours a day you know every day um and that that's hard I find that hurtful really when you don't feel I mean if it's not hard enough as it is just to have that recognition and to be valued and to think right okay if you're giving out so much then let's give something to you let's give you that support not rocket science really you know we carers need to be cared for and that's what's being missed there's a gap there and in terms of what you would like to see changed did you have an idea of what that looks like what what would good have looked like for you I think this recognition somewhere around this recognition and valuing I mean I gave up a nursing career um and I was um given um carers allowance um which is uh I mean currently I think when I started caring my carers allowance was 67 pound a week at the end of my caring journey it was about 82 pound a week that's in about um about nine years difference nine years difference um so that in itself um because carers still need to live and they need to survive sometimes care needs to be supplemented we sacrifice a lot and if there was any way that that could be compensated for that would be nice and And certainly this joined up thing, you know, the hospital to community, getting carers involved.

24:40You know, carers know the person they cared for. They're the experts. And that just seems to be missed. You know, I would be told my mum's having a procedure done and I wasn't informed of it because she had capacity. You know, get the carer involved. Get the carer involved from discharge to home so things do run smoothly. because in my experience it's like okay mum's discharged home right onto you now and then you're carrying that you know boxes have been ticked referrals have been made but you're alone with your loved one at home 24 hours at night the worry the anxiety what if something goes wrong what do I do it's it's it's intense it's intense so better communication between services conversations like this is invaluable yeah absolutely thank you um edward you're 26 i think you mentioned earlier that so you started caring when you were five or six years old what kind of additional things would you want people to know particularly for young carers i mean five or six years old i have to be honest it is unfathomable uh to me that a five or six year old would would have such a caring responsibility we need more sort of awareness raised in schools in particular, in schools and workplaces because equally for young carers or young adults that go into a place of work, they might not want to disclose that they're a carer because it might affect them from getting the position.

26:08So what kind of safeguarding could we introduce in schools for young carers, for carers? And then equally just, I guess materially, like what would it mean for a young carer? And I just wanted to shout out Lambeth Young Carers because they do amazing stuff. But is it a carer's card that young people can carry, you know, if they're out on a trip or in a public space? Could they carry that to sort of eliminate that whole confrontation of, oh, I'm going to take your phone away? You know, is it co-creating these experiences? Like, how do you bring carers to the forefront, young carers in particular?

26:45You know, and Zach, this isn't for you. Like, you know, just like public figures, politicians, wheel out, they wheel us out for photo opportunities. And then we take the picture, we take the snap, and then it's done. I'm very much interested, and I guess what I would like people to know is what does conversation, what does restitution look like after we've taken that photograph? What would it mean for young people to go to school and not feel like they have to sort of find new poles to hide their safety line? What could it just be like? Okay, you can hold onto your phone if they need someone to speak to.

27:18is there a designated caring lead if not like what does it look like to i guess equip our systems our local systems our schools our workplaces with things that can aid carers so like that that weight is slightly slightly lessened um but also equally you said again like expertise i i i don't know why they didn't like inform me that my mom was having a surgery like we know we know best with our loved ones and it feels like there's again there's that conflict with you know health professionals telling you oh no it's this or they might shrug it off but you know that that's not the case so I'm just like again what does it look like tangibly what can be used to assist us does I guess what what's what's a commitment you can make to carers um what could your party do well I think it partly is this conversation about making sure that you're listening to people with a lived experience of caring and finding out first of all what are the problems before you start to look at solutions I think some of the wider solutions I'll get to more specifics but the wider solutions are all about austerity everything that you were saying earlier that we had kind of 14 years of austerity under a conservative government and i would argue a labor government are continuing that and i think until you invest in adult social care until you invest in the national health service far too often these issues are being pushed to local councils who are already struggling and then you're adding people who are already struggling to care for someone into a system that is not funded to care for them and i don't need to tell you guys this but to people listening like the amount um that it's saving the economy to to have people who are caring is often something that's totally missed if we're going to even look at economic terms never mind the conversation we should be having about on humanities terms making sure people are supported and cared for but i think that's the first thing is to make sure that these services are funded properly second i think the carer's allowance clearly isn't working and that clearly needs to massively be an actual allowance that can really really support people to do the work they need And then free personal social care is something that we committed to at the last manifesto.

29:15So making sure that as well as relying on unpaid carers, there are people who can also support with some of the basics to make sure that carers are getting a little bit of rest, play and time. Partly why I'm asking these questions about identity so they can run the who they are when they're not a carer and actually get some time to look after themselves. And then finally, as you've all alluded to, I think it's about the discharge service from a national health service. on how do you make sure that these things are linked up so people only have to tell their story once give the full detail so that's on a system that then can be shared with other health care providers other social care providers um and then sorry i said finally but also i think i'll say looking at the um young unpaid carers as well because i think that's an area as you've spoken about several times that really really needs support that i think it will be shocking to so many people that you have children aged five six maybe even younger who are having to get up several times in the night to look after an elderly parent or even a sibling and just aren't getting the support that they're required and no child should be having to go through that like children should be just that children living their life and learning and not having to kind of I hear about the beauty and the grace of looking after another human being but also at five or six for a child to be able to be a child and that not to be their their entire world oh thank you I'll hold you to it you can definitely hold me to it this episode is brought to you by crowdfunder There's a street in Walthamstow where nobody used to talk to each other.

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32:01Wayfair's got you covered. With Wayfair's room of choice delivery and fast experts set up on qualifying orders, life gets a little easier. Visit Wayfair.com or the Wayfair app. Wayfair, every style, every home. Before we started filming at the London Assembly, I've recently co-produced a report that's cross-party with recommendations. And one of the kind of key things that runs through this, I'm going to come to you, Isabel, is we have a cost of living crisis anyway. But if you are someone who's caring for someone during a cost of living crisis then just the problems are kind of compounded and did you say before you're not eligible for carers allowance because you're a full-time student?

32:39Yes so um well initially I was working um whilst trying to complete my doctorate and care so um I had to stop working it was quite hard to juggle obviously working and caring and care on the carers leave um was just introduced and it was quite hard I think to actually put that in place in the workplace and take time off so I stopped working and we were able to move in with my partner's parents otherwise I don't know what we would have done and yeah as a full-time student I can't claim carer's allowance so and yeah I mean that's it I think it and I think about you know young carers if you you know you turn 18 and you want to go to university and do a degree and maybe also continue to care for the person you're caring for you you then can't also get carer's allowance I'm so grateful that I've been able to continue to work towards my doctorate um because you know it's something I started before I became a carer and my my partner and all my family were really passionate for me to be able to to get to that place but it was only through their support that I've been able to do that.

33:50And yeah, I think it would make such a big difference to be able to support students, to support people who are trying to work and care. I'm going back to work in a few months. And yeah, I'm excited and apprehensive to see how that goes. But I think it's so, you know, we all have our things that we do outside of caring. And it's really important to be able to continue to do those things and so I want to pick up there actually because again it's a theme of something that you've all said which is around identity which is like part of your identity as a carer and then you have so many other identities to you how do you work to kind of keep keep yourself grounded and make sure that you kind of see through things while still kind of devoting your life or a huge part of your life to looking after another person I've got to work hard I mean I've worked hard and I have all my outlets that I do.

34:45I mean, connecting with the carers community is part of my self-care, number one. I don't do it enough. Just having this conversation today is just very inspiring and it's giving me energy. But I do my things like I do my mindfulness, I do my dancing. and I just surround myself with people who can check in on me and say, take a break, how are you doing? It sounds very simple, but just having those people who are my sounding boards and when I need to have a little bit of steam, sometimes it's like survival and you have to, it's like you said, it's just like this constant fight or flight repetitive cycle and to have that those people around you to ground you and to check in on you is um yeah it's it's non-negotiable really for a kind of final question and take this however you want i guess there's two questions you can answer both or either um if someone's listening to this what do you want them to know that they might not know about caring and obviously i'm sat here listening to him a national political leader what would you want a politician to know so that might be the same answer to both questions or it might be different but I just wanted to kind of end by giving you all the floor to say whatever it is you think people need to hear really you know I'm checking on them ask them how they're feeling it's not you know just get get an understanding of what their day might look like you know it's not just doing a bit of shopping or you know washing someone's hair get an understanding Don't assume that you know, you know, and it's not about self-pity.

36:30It's not about pitying off, you know, your Carol, lovely love. No, it's just really recognising the strengths and recognising the love that drives what they're doing. And maybe putting themselves in that person's shoes. If that was your loved one, you know, what would you do? you'd fight like anything to make make sure that person stays well what what would you do how would you feel how would you feel if your world was turned upside down in an instant you know and just get an understanding you know and also how are you feeling not what you're doing how are you feeling I've heard a lot I don't know if you heard this in your time but people often say to me wow you're so strong and you're so resilient and at first I found that difficult because I felt like it was me and them we were separate you're so strong keep doing what you're doing on your own that's how it felt to me now I can hear it I'm a bit I feel better in myself and I can hear it for what it is I am strong you are strong we are really strong as carers so I think if you think that and if you say that great follow it up with what can I do to help how can I take something off your shoulders if you're a friend I mean I've got a mate really lovely friends you know who can cook an extra meal for me or you know say can I do a bit of laundry for you like you don't have to care for the person because it can be hard and we know we've learned how to do it but care for the carer if you're an employer you will have carers in your workplace think about how you can support them when they ask for help give it to them don't make people fight more because we fight so much for the person that we're caring for so fight for the carers that you know obviously if you're a politician then you know you've got a lot of work to do to support i'm hearing that a lot yeah absolutely and i'd totally take that feedback as well of like if you're going to admire someone's resilience or strength then follow it up with yeah how can i practically help or what needs doing a really good piece of advice my friend said to me is i kind of said to him in the hospital and i just can't stop crying every time the doctors speak to me because like that's all I have left she said crying is a communication so I would say to carers if all you can do is cry at people then cry at people because at least they'll see how hard it is and maybe maybe someone will be able to step in to help so don't worry if that's that's all you can do.

38:57Isabel and JC said it they said it all but I just say to anyone listening just you might be a carer and I think if you are that ask yourself the hard question and find out like what's available to you um a lot i think we are a nation that carers um and i think it's important that we you find out and see how you can be helped and join the community um that's what i'd say this episode was brought to you by crowdfunder what's your bold idea start it at crowdfunder.co.uk forward slash bold a huge thank you to our guests and don't forget this week is carers week this is vital for several reasons it's a way of making sure we're supporting care in the community We're supporting people who are doing this vital work to care for loved ones and recognizing what they're going through and looking at how we can support them.

39:44We've heard several times today not to just tell people they're strong or they're resilient, but actually see what we can do to help. And finally, to make sure that carers get the recognition that they deserve. And so there's much more awareness in a whole system about what carers are doing. So check out Carers Week online.

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