Kyle talks about what good care and support means to him, his frustrations when things aren't communicated well and how it makes him feel, and what would make a difference for him.

the record. Okay. I think you have to say that you want to okay with that. Excellent

And then just forget about the recording, right? It's not really recording. We're just having a chat. Yeah, so, yeah

Hi, Kyle. Just tell me a little bit about you. And yes, I met myself

Well, where shall we start? Our Tell me where you live, What you like to do. Oh, um, we live for it now. I live in Kingston, Norfolk, and the things I are like to do is to go out to, uh, common comes and, uh, just to dress up and have allowed with some, uh, friends and with some, uh, staff with a staff member as well

Brilliant. When did you last go to a comic cons event, then? Ah, last year. And what did you dress up as? I just heard The Joker

Brilliant. Dark knight. The Batman

The Dark knight. Yeah, I bet that was quite spectacular. Oh, it was

The costume was a bit on the pricey side, but I still got in the end, you have to do these things sometimes. Don't you do? What's your favourite character to dress up as, uh, the one before That was, uh, so skydiver out of, uh, Ugo. Well, you've lost me now

My kids would know what that is. Brilliant. I'm going to have to google that one later you go

I'm my eldest son. Used to watch that. I think so

Yeah. It is a two. It is a major cartoon of it, haven't they? Yes, I know that

There's quite a few cartoons and that and some, uh, cards. And I've got tonnes of off collecting all that. Yeah

Yeah. And you get people who goes with you to the events, um, usually get started. And, uh, it usually takes me out there

Yeah, uh, of my choice. A staff member of your choice. Is that important? Yes

And do they dress up as well? Uh, no, they don't know. They're just, um no, they don't know what to do. Just that

Uh huh. Yeah. Is that? Oh, yeah

Yeah. You can only come if you dress up. Would they say that, uh, to answer, like, I'm going to ask them that question next someone up next meeting

And so Isaac's just put a question in the chat. He says, Would you like them to dress up? Yes. Yeah, That would be just to just have a laugh and just just go with it

Yeah, that's good, because it's just Yeah. So important, isn't it? Um, so tell me a little bit about where you live, what it's like at the moment. It's really good, Um, were liberalised, uh, not far from town

And it's not far from, uh, the supermarket. Uh, Morrison's a court. Is that that's important? Is it? Do you grow up shopping at Morrison's? Yes

Yeah, yeah. Do you do that on your own or people? Um, both. Really? Yeah

And, um, who who supports you on a on a day to day basis? Um, that will be the company called Endurance Care. Are they a home care agency then? Or a Or is that the people that you own? The property that you live in? I know the property where I live in is under board land housing. Right? So the people who come in come in just to support you

Do they come every day? Um, from saturday. Yeah. And what sort of things do they support you with? Um, they help me with some, um, house cleaning and, uh, shopping

Mm. I'm not. Yeah, and And tell

Yeah, tell me a bit more about that. What? How How is How does that work for you? What's your experience of that support? Uh, let's see what shows. Um, the staff member are really good and not the, um, team leaders are very good

Well, if you go trying to get hold of them and the manager Well, on the poor inside, shall we say appalling? Yep. Very just say very bad. Very bad

Yeah. So what? What? I'm going to start by just asking you what's good about the staff who come into your home? Um, the uh huh. They are, uh, always good to have a talk

And now you have a chat. Just chill out. And, uh, if we can, uh, film now, we can, um, just chill out

Really? Uh, we'll carry on. Sorry. After when we've done our house chores, and now we can just sit back, relax and just chill out

Yeah, and they do. They do what? You what you need them to do or what you asked them to do, then? Uh, yeah. And so if you want to go out somewhere

They'll go with you. Yeah, yeah, yeah, that's that's good. And then I think you said the team leaders were were all right, if you can get hold of them

Yes, that's great. Yes. Do you? Is it important to you to be able to get hold of them? Uh, sometimes, Yeah

So that if they're not to busy themselves and that Really? Yeah. What? Why? Why is that? Why would you want to get hold of them? Oh, just in case F s. Um, uh, staff members were running a little bit later, or or in traffic or something

Not up. And does that happen sometimes? Yes. Yeah

And so you've not Then got anybody you can contact to say Where is so? And so I was expecting them to turn up to you. And how does that make you feel? Yeah. Uh huh

Pretty mad. Shall we say it's frustrating? Yeah. Frustrating to support it

Yeah. Yeah. And what would What would make a difference then? What would make that better? Um, just just contact me just say like, oh, they went and, uh, a little bit late

And or if not, you can, um, get hold of them and just see where about they are. Yeah, And that's not an option for you at the minute. No

No. And it sounds to me like that would be a really simple thing. Yeah

Even if they contacted you, even if it wasn't you contacting them? Do you have? Do you Are you able to contact your support workers directly? Uh, even as, uh, rule with the company. It's self and, uh, really? So they say if it's, uh, basically, I cannot Well, I can't bring them. But, um, a second step, uh, policy, Shall we say right and does that again

How does that make you feel? Um, a bit disappointed. Really? Does it? Does it seem like a Does it seem like a good policy to know that it's not Know why? Can you tell me why? Because, um I just say everything that's on the go slow. Yeah

So it slows everything down. Yes, it does. Yes

Even though if I try to look a day out and they're just leave it right the last literally closer to the day. And now when I try and call them up, um, they just say, Oh, the staff member who you had is is working at another house. Right? So you you just get told who's going to turn up? He was going to take them where you're not part of that conversation

And how does that make you feel when they change things like that? Like I said, it's very disappointed and no, very good, really. Especially if I imagine you are expecting a certain person to turn up and you've got your head around that and then to be told that somebody else. Yeah

Yeah. We're not even turning up, right? Does that happen? People don't turn up sometimes. Yes, quite quite a few times

And then they were just like they like, Oh, so we can't, um, stuff when we couldn't make We have to, uh, bank those. Excuse me. Um, those hours so you don't lose the hours just so they they just get banked

Yeah. So saved up, shall we say? Yeah, yeah. Do you think you could save enough to go on holiday? Well, apart from the naval, uh, suddenly put in from last year really annoyed me

And that's the Bassler. If there's any, uh, bank hours and now I have to or use up. And they said, Oh, I've got to use them up by the end of the month

And it's not always go. I'm sorry. And nobody tells me how to use them up whatsoever

Right? And so at the end of the month, if they haven't been used, you lose those hours. Yes, that's correct. Yes

I expect the organisation still gets paid for those hours. What? You don't get to us benefit from them? Yes, that's correct. Yes

I mean, I'm guessing there. I don't know if that is the case, but it would be interesting to find out. Yeah, yeah

Um, And so again, that's another change that they've made. It's not your fault if people don't turn up. Yeah, Yeah

It was a friend, uh, one time and nothing that was on and was, um So, uh, books and deck. I'm going to have somebody. And now, and nobody didn't turn out

So I haven't got the team leaders. And now, and they said, Oh, we're going to bank those hours for here. Um, And then on the first of January, um, instead of having my, uh, normal hours, they gave me an extra

I think it was 4.5 hours. Mm

And was was that a good thing? Well, thou asking me or whatsoever without not agreeing to it at all. Right. So it was a bit pointless then

Yeah. Yep. Yeah

Without without contacting me. I don't get no contact whatsoever, But you didn't have the option to say. Actually, I don't want them then, but could I have them on this day instead? Yeah

I don't get Yeah, I do not get that option at all. Yeah. Isaac's put another question, uh, chat about going back to the contact, being able to contact people

Um, And that policy, If if you were to write a policy about that stuff, um What what would it say? Mhm. Yeah. Um hmm

That's quite a difficult question. Um, uh, let me let me Let me ask that in a different way, then. So how do you How How do you think it should work? In a way that makes it better for you? I would like to say, uh, there's a so, uh, staff member, and now I would like to, uh, contact them on the, uh, number just in case after when traffic or something like that

So you would like to be able to contact people to find out where they are if they're late? Yeah, that makes sense. Because I want to be able to do that as well, and often do. If people are late for things, I think I would feel very it would make me feel, I think a bit out of control

Yeah, yeah, yeah, Well, me try not to call the, um, team leaders, at least that way that they can go, You know, like besides me passed to them or both there and not just say, Oh, who have I gotten? Would you, uh, contact them, or can I, uh, contact them on on their behalf or something? Yeah. So communication is a good thing. You will be that the agency or the organisation do communicate with you enough or Well, no, no, no, no

What do you think they could do? Uh, communicate, Just communicate and get stuff all nice. Shall we say good stuff on the ball? Not being on the go slow as it is right now. Do you ever sit down with a team leader or a manager and talk about the hours that you've got and how they might be used

Best shoes is always at the moment. Now it's it's been team leaders, not the actual manager, but they do They sit down with you once a month or every six months, or, uh, they used to do that at the time. They don't do that anymore now

So does that mean? Then how does it work? Now, then, Um, at the moment, uh, it's just a random guess, really. How many hours I'll get? Really? So do they just tell you this is who's coming this week and on what days? Uh huh. Yeah, that they, uh some start there

Yeah, and I always ask them before they leave. And I have I got you this next this coming week, and now they say yes. So, how many different How many different stuff visit a common support? You, Kyle, Do you know, uh, there's quite a lot

That's quite a few, Shall we say, Is that how the hell does that work for you? Um, so I'm getting some new, uh, new style and, uh, very clearly coming down here. Mm. And, uh, but the the original stuff

So not usually come down here quite a lot, but they don't do that anymore. Right? So they've moved that you've done, have they? No, that? No, they're still in the business. But there, working on another helps

Right? So would you. What would be what would be the ideal for you if if you were to have more control over who supported you? Yeah. I would like to see you like a few staff members that I have not seen for a while

Yeah. Yeah. Do you? So you don't get to decide who comes and works with you? Yeah

And do you get to let them know if there's people that you don't want to work with? Do you get a choice in that? Uh, no. I think it's a chance to do that anymore. No

And you talked a bit about the manager? Yes. What? What's the What's the issue there, then on the F? Um, last year I kept, uh, parking, huh? And just say, Oh, how many? Uh, also saved up hours or bank hours. I've got to say, Oh, um, I'll get back to you on that one

And she never does. Do you feel? Is that what she Is that what you've been told, Kyle? That you were booking them Or exactly what it feels. That's how it feels

That's what she usually says to everybody. That's her language. Uh, yeah

Yeah. Do you think she could communicate that in a in a different way? Yes. And the Yeah, because people are busy often

But to put that responsibility onto you feels maybe not right. Yep. Yeah

Yeah. And do you think it's important to be able to ask those questions or to have that information when you want it? Yes. So I think there was another time and I had to go to Who is it? Um, the Julian Hospital in knowledge and a range of, uh oh

Very true or not. Or the main office. And I asked what's the best way to get up to, uh, knowledge for my, uh, appointment and that she said, uh, taxi

Mm. Was that helpful? No. No, it was not

No. What? What would have been more helpful? Like I'm just okay. The one side, because the sun is Yeah

Okay. Okay. Um, like a pair of, uh, for her saying like, Oh, uh, and we just have a look and see if you can get a, um, NHS transport or something like that

Yeah. So basically, you can go up there, uh, for free. And, uh, apparently from another used to be another team leader and that but she don't do it anymore

And I asked her, What about the NHS transport? Uh, she said, Oh, I did not know us entitle to have the NHS transport. Right? And that's quite a simple thing. Yeah

Yeah. So the expectation was that you would pay for the taxi? I don't know. He was going to pay for the taxi

Exactly. But I did, uh, put that question to one side in a way to the mhm the manager from Park View. It is there such workers and that all the adults service

So I put them on the spot as well, or for this issue as well. So it sounds like you're really good at asking the questions that you need to ask. You always get an answer or response that's helpful from people

Uh, yeah. If it's coming back then. No, I don't I didn't get no questions

Come back whatsoever. No answers to your Yeah, that must be quite hard. Yeah

And you get I can I can I can see the frustration in that. Yeah, yeah, yeah. Um, where where you live, Kyle? Do other people live with you, or is it your own apartment? Flats? House got moon slot, Got other people living above me, and then some next door as well

So and your neighbours All right? Yeah. Do you see much of them? Um, sometimes, if I'm not too busy or going in late for, uh, like the descend from that. So what? What you've talked about comic cons and dressing up and stuff

What? What you enjoy doing during the day? Um, just, like, uh, go to the, uh, forward centre. Is that good? Is that a good place to go? Yes. What do you get to do there? Um, we'll get a chance to meet, uh, new people, Uh, with people have got a blend of glory and disability

And, uh, and and the day is so like, um, different activities. Mhm. What sort of things? Like after nitty cooking

That's one of them. Uh, music finished in a play. Oh, Drama

jokes, say. And what What do you like to join in with? Um, I love to join anything. Really? Don't probably you like to join anything? Yeah, Anything

Yeah, that's something I enjoy. People enjoy it. And no, no, we'll enjoy it, too

Yeah, that's what's nice is no. Sometimes just to be around people enjoying things together. What are there things that you would like to do during the day that you don't get the opportunity to? Mm, uh huh

Um, like to catch up with some, uh, with some friends and just to have a catch up with him. These people that you don't get to see. Yeah, yeah, yeah, yeah

So go out for a coffee or Yeah, a lunch. And, uh, yeah, yeah, that would be good, but you don't get the opportunity to do that. Uh, as much as you know in the week

Day nine. And what you do? Did you say you don't have any support on a Saturday? What do you do on Saturdays, then without windows need to be around. Um, I just Yeah, um, just chill out

I'm not really know if there's any friends are not coming over and not usually go to, uh, see them. Really? If the come live in that one weekend. Yeah

And again, is that Is that your choice not to have the support at the weekend? Yeah. So a bit of a bit of space. A break? Yeah

Yeah, that's that's good. And it's been brilliant, Kyle. 11 more

One more thing I was just going to ask you about is going back to the conversation that we were having at the partnership board last week about this er ethical framework. If What? Well, not if we are going to work with people to write something about how better to support people or how people want to be supported. What? What are the most important things for you that we should include in in that framework or whatever it ends up being? Um, I like to say the, um, the manager and that they come out once a week and just to have, um, just have a catch up Or or if there's days out and now I can, uh, do and so, uh uh, 121 hours

I'm not really That's that's what that's really, really important people to hear I think so. You don't want the managers and the and those people to be distant? Uh huh. Yeah, yeah

And being more like on board. And besides, not leaving it to not leaving it too late. And I think so

Correct me if I'm wrong. There was something else in that about you being able to have more control over the support and who and when. Yeah, yeah, but recognising that, we have to compromise sometimes

But being more involved in those conversations would be important to you. Yes, Yes. Is there anything else you would like to tell us, Kale? And I'm just gonna see if Isaac's got anything else he would like to ask as well

Is there anything else you want to say, Kyle? Uh huh. Oh, yeah. I did, uh, one time bring up the office, and not as well

Basically our managers or managers Earth. Uh, I think that was, uh, one time, and I just say you forgot my, uh, want fun. She said the Oh, can you please stop? Uh, bringing up the office

Um, every day, please. Mm. And I thought I was playing Boo Mhm

And Andy. Everyone was the because I got a higher doors. No

Everyone else, um, outside my, uh, flat. That's quite a pathway to the paradores. Um, I finally call it in the in the end

And, uh, but I've got just, uh, hang up the manager. And I told her these two dates because I had to meet in, um in town and T shirt. Oh, I can't come to it because I got too much people work to do

Mhm so of law. Firm excuses. Mm

And again, how does that How does that make you feel? Quite annoyed. What would you tell managers they need to do And small people like you, Um, the baby on board and then get things sorted out? Um, properly, besides leaving it so long. Mhm

Mm. Do you feel like they value you as a person? Uh, before these excuses and that didn't know? No. I think that's how any of us would feel in those kinds of situations

He looks It's not just myself. Pissed the team leaders as well, and the staff members as well. So they started

They asked the, uh, visual question and that they Rachel never gets back to them at all. So it's not just myself. It's everyone

Yeah, yeah. Do you feel people who support you day to day value you as a person? Uh, yesterday you do much more than the actual manage traitors. Mm hmm

That's that's hard. Yeah. Yeah

Isaac, did you have anything else you want you to? Just so thank you so much for being a pleasure listening to Yeah. Is there anything else you want to say before I stop the recording? Uh, I shall stop this thing.

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