Report transcript in: Kyle shares his experiences of the support he recieves in Norfolk

Please Report the Errrors?

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,

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.

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.

And do you think it's important to be able to ask

those questions or to have that information when you want it?

Yes.

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?

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.

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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cat@curatorsof…

Post date

15/02/2023