Curators of Change Collective are working with local authority in the East of England to explore experiences of care, in this case home care support to inform a new model for commissioning home care support services. In this audio track two people who have home care support share their experiencs, and one carer. The carer shares her frustrations about being excluded from the care and support decisions about her mum, and the way the home care provider responded. 

I mean, start just by tell Tell us a little bit about yourself. At least six generation muscular dystrophy. Um, my work when I did work was as a problem solver, which kind of helps what I did like doing was all sorts of things. Um, I like cycling, but I had to give up that up when I was 40

I like playing tennis, but I had to give up that up when I was 14. I like dancing, but that gave me up when I was 26. 27

So there's been just constant changes that you've had to adjust to. Sure, they used to like driving till about eight years ago. Um, somebody cast aspersions on my driving

So I took the advanced driving test, which is something I'd always wanted to do. Huge fun. Do it if you can

I got gold, so yeah, but this thing no, it's, um Yeah, and I used to like working, but I can't work anymore. What did you do? Graphic design. OK, friends tend to evaporate OK with you when you've got an impairment, right? Right

But it feels like in terms of the care, the care, they're providing it feels like it's more than just the care, you know, when you when when people are hoisting you on and off the toilet. Yeah, you're either gonna shut down completely. Oh, you've got to form some kind of relationship with them

Mhm. And that's what it's the only choice. And if there's one that, you know, you think what's going on with this person, then you know, that's that's the only one that I've that I found that with

And, um uh, fortunately for me, in a way, when I said to her because she actually lost control of this wheelchair, um, and could have, um could have hurt her colleague. Um, and I said to her, I think it's best for all of us. You included if you don't come back and, um And she went

She went out to the car and she came back again and tried to justify herself. I said, Look, that's between you and your supervisors. Nothing to do with me

It's been nice knowing you, and I wish you well. Um And then she went and she went leaving the door open, leaving the front door open and leaving the key safe open. Basically, uh, the transition again from person to person has not been easy because you get so used to someone dealing with your needs and your changes of how the Parkinson's progresses

Because that's the gift I keep given in the sense where there's always something that seems a little bit worse and that strips you, takes a little bit a piece of you, if you know what I mean. It's quite difficult, really, I I'm one of these people who's quite independent. I'm quite bright to do things by myself, and some of the carers seem put out by it because they're here to obviously help me

But I won't accept that help until I really need it, if you know what I mean, which I think is an important thing because you want to hold on to your independence for as long as possible, but at the same time getting the balance right that if I'm struggling with something, I really have to step back and say I do need help with like I wear pads. I suffer from incontinency the reason being because of the condition, sometimes recipient can come on like that to go to the toilet to have your bowels open to just having a normal we know. So basically, I rang Norfolk Council up, and that's when they decided to let me have carers come and assist me

And I felt as if I needed that care at the time. That was hard to make that decision because I've got a safe book and I've also got to look at sometimes if I suffer from freezing and dystonia in Parkinson's, which I do suffer from, I can get routed to the spot for about 20 minutes before my tablets even take effect. And when I can't get to them, I have to wait until that wears off

And I mean the thought of someone coming into the house and coming up to me and stuff and I can't move It's quite frightening, really. I can imagine. I can imagine it's quite frightening

So how do you How do you manage that or how you manage it is by not actually getting agitated by not actually getting angry by trying just to remain calm and cool and confident, And that helps when it started, I wasn't on carers four times a day. I was a non carers once or twice a day, morning and tea time. And then the need became greater and greater to help me put them to help do a meal for me or, if I was feeling tired or the care gradually built up

Basically, was that your choice of that care? Being build up a conversation with the staff? I felt as if there needed to be like there were times when I was finding it difficult to push myself out of a chair. I know it sounds funny, but I can push myself out of a chair. Easy now

But sometimes that's the case that I can't. I really struggle. You can have mostly, the car is for half hour sessions, so that's paid by the government sort of thing

I get help assistance with that, but I do. You pay a small amount of money out of my money, which is only understandable, really, But that's very fair for what it is. But I never I never try and because sometimes the carers come and they say to me we haven't done much and I said, but you've helped me with what you have done and not in that the level of communication

I haven't seen anybody all day, and sometimes it's quite isolating by yourself. Stuck in these four walls year and year, haven't pulled my hair out. And then finally, the package was picked up by a local company that fairly recently expanded into that area

And we kind of thought, great, This is it. You know, freedom, whatever. Um, but actually, what happened with that company was that they They kind of, uh, with the local

The local authority said, OK, these are the call times that you need to come. And, uh, they said yes, yes, we can do that. And then they just They basically just moved them and then said that they hadn't moved them

So they basically they they kind of took on the package and then constructed it to suit them. It is effectively what to suit what their schedule was rather than as a person centred, Um, thing which meant that actually, myself and my brother and and by this time, my sister had got involved had to do almost as much as we had been doing before less personal care, because they would come. But but still having to do it, having to use a stand aid to get my mum out of bed onto a mode because she really wanted to do that, having to do ex, you know, Physio exercises with her all the time, having to move her into a chair, having to cook all of her meals apart from breakfast

You know, pretty much, you know, the the the full thing and and the way that the the care Company communicated with us with the management was that they basically didn't communicate with us. And what happened was, you know, my mum would say, Oh, the carers said I'm not allowed to use the standard aid anymore and we'd go, Oh, OK, phone up the office. What's going on? Oh, yeah

There's been some concerns raised. So we've we've withdrawn it. And you go, Well, So you didn't Why didn't you tell us? Well, we told the carers, um and they told your mum, you know, So So that's sort of that's and and the attitude from the management is kind of like you are a problem phoning us up, hassling us about stuff like this

So and and so that basically has gone on for a year, and it's been my responsibility to do all of that interaction with them because that's just the role that I end up having in the in the family. But, uh, at this moment now, uh, so a week ago, I had a phone call from the head of the company. This is after we'd had a a review meeting with the worker and that and and agreed certain things in this meeting that the company would would, um, communicate better with the family that decisions like withdrawing the standard aid would be there would be a process that that would go through rather than a kind of fait accompli

Because because the withdrawal of the standard aid had a massive effect on my mum's health. Because although we could, we could. We were allowed to get her out of bed because we're allowed to do what we want, right, because we're her family

Um, the carers wouldn't and therefore the whole business of using the commode. She's then back in into pads. Then she's got another pressure saw

Then you know, and there's just this accumulative and also just her feeling of failure. You know which was massive, actually, Um and it was because they were going a bit too fast. She'd had covid

So she was a bit weak and they just kind of didn't take any of that into account and just kind of went. That's what we didn't do. So And they did that management did that without coming out to visit

They just took one carer's kind of opinion and went OK, that's it. And and made this decision anyway. So those th they said that they would have a process about those decisions and that there would be more communication

Uh, we agreed that we would look rook at the times of the of the of the calls, one of the issues being that they would send out a a roster to us saying, These are the call times and then But there is a 30 minute Lee way you go, OK, but the but the call time, for example, a bed call would be eight o'clock in the evening and they always came at seven o'clock every single night and you'd go, Why are you sending us a roster with eight o'clock and and coming at seven o'clock and they go, You're being very confrontational. Um, and so that's that's been the situations. So a week ago, I got a phone call from them saying we gave notice on your contract two weeks ago, um, to social services

But the social work has been off sick, so they haven't told you. So, um, and it runs out tomorrow, and that was just completely baffling. And then the the social worker came back, that was renegotiated

So now we the the the contract ends, Um, the middle of next week. There's nothing else in place whatsoever. Uh, and there's no prospect of anything in place because the area where my mum lives, there's very little coverage from companies

In fact, the company that are dumping us, um are, uh, I think have probably wiped out a few little carers in that area by kind of T hoovering up all of the all of the work and then throwing it back when they want. And and talking to the social worker, it's like I'm saying so can they do this? Can they just hand the package back? And she said, Yes, they can, because if it's not financially viable for them. They can hand it back as long as they give notice

So it feels like the social services are employing people who are entirely working for their own benefit. Um, and who have no responsibility for what happens to that person when they walk away from them? No, None at all. Um, because they're a private business

Uh, they offer profit, um, and they the Therefore, if my mum is not making them profit, then they don't want her. Um, and that combined with their, uh, such a missed opportunity, I think that to work with a family like ours who are really hands on really engaged, really wanting to work in partnership with the carers, to treat us as a problem which they've done all the way through. But actually, because we're actively engaged, I think I think they're preference would be for somebody who is alone and vulnerable and that they could turn up when they want

You know, I think that's their preference because because if it's a financial model, then you run it as a financial model. You're not running it as a as a a responsible, caring service because that's not what it is. It's a way of making money out of disabled people as far as I can see

And so the fact that all of the work from Norfolk, uh, is is put out to people like that seems to me just a fundamental massive flaw. And in the middle of that are people like myself and my brother who have lost just masses and masses of work lost, uh, you know, completely. Our social relationships are like in tatters, uh, with our own family, Children, et cetera, et cetera

Um, because we've had to throw ourselves at this at this scene because the only thing that is offered up is your mum can go into a care home against her expressed wishes. You know, she absolutely doesn't want to. Not that she's not a difficult person

She's just afraid. And she's got good reason to be afraid. You know, there are

There are very good reasons for being afraid of being so helpless in an institution where you don't know you. How do you know who to trust and and and what's going on? Especially when the experience of home care like and hospital have been so untrustworthy.

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