Life in Halton: Experiences with Social Care and Health

So did you have a little box pop up then? No. Yeah, OK, it's being recorded. Excellent. So hi, Dawn and I You know I'm Kate, don't you? I did tell you that

Yeah. Cool. So, um, sorry my gonna be in Yes

Yeah. Um, and there will be a couple more, which we'll tell you about, um, when they're when they're sorted out. So, um, we just want to hear about what life is like in Halton

And you know what your experience of services is like, So it could be social care services, Or it could be health. Can do. You want to tell me just a little bit about yourself about maybe what services you access where you live? Um, who you live with? Just about

I live in a and they access, like social care services and most of the hospitals and stuff like that. And my health conditions, right. Did you say you live with your cousins? Yeah, that's lovely

How many people where you live? There was me and two others. I mean, Auntie. Right

That's nice. Is it a happy, happy household? Is it busy? I bet it is. Right

OK, so what Um What social care services do you access? Social care, Adult social care. Do you want to tell me a bit about that? Any good experiences of social care or been pretty bad because you've been left without any support and stuff. They come and then he said about the support and then he's actually left me halfway through without telling me that we had to take it again to get the support back

So who was that? Social workers. So we have social workers. So sorry

Are you saying the social workers left you or they arranged for some support and it didn't happen? Air balls. It was a bit of both. OK, so what? Tell me about the support that didn't happen very well

Well, we would. We We were. We were study

We got in touch with him for disability, nurse. But they said I couldn't have one because I had the qualifications. I didn't have a disability

They have a problem about qualifications. So they said that you couldn't have What? A disability nurse? Just out with medication and stuff. You got qualifications, right? It wasn't right

Support farming. And so what happened? Oh, IG gonna try and find my mother support to the mid part. So you still haven't got support Now? I suppose I got is, like, quite a girl half me

I really got most sports outsiders. Well, go on. You OK? So what's the support like there where you are with Gail? It's all good

Yeah, cos I've got two PAS. Rather me as well. I've got two different persons that take me through my appointments to the hospitals and stuff

They take me to where we need to go. So do those personal assistants come from Gale? Or do you work? OK? OK, so what else? Tell me what else you do. I ain't got I ain't got no

Just tell me what's good about the life you lead. It's fine. Fine

Just take your time. We've got plenty of time. It's just a chat

Oh, OK. I don't know, but it's OK with the sport I've got from. Yeah, but I'd like more support, if you know what I mean

Cos I don't understand medication and stuff sometimes. And the things that the hospital are telling me are a bit hard, but they sent me to get an injection. Do You know, I had to call us all injections, but you've gotta make liquid yourself

But I can't really do that myself, cos uh, I wouldn't understand what to do, so I just actually had to cancel that cos I couldn't manage the injections. So you're not actually having the medication you need? I'm on. I'm on the tablet

That was the emergency one in case I got really ill. Like, I go to a, um, a coma thing for hydrocodone, coma or whatever. If I don't get the right stuff and Gail's helping you, sort that Yes

Yeah, OK, so tell me about, um, some good, good things that are happening in service services for you. What's good in your life is yours. I just I sometimes Good, sometimes bad, So I don't know, right? So tell me the good things about the local hospitals

They're OK to go to you, but it's a bit hard to find a way round if you're on your own. Yeah, but what? There's also we have to go to SD blood tests and girls won girls probably wondering why we can't go to, like Halton and art for our blood tests. But they keep sending me ST John, and that's harder for you to get to

Yeah, That's why staff here have to take me to get them done. OK, so when things are going well in the hospital, what do they do? So if if you, um, wanted to tell the hospital things they could do to make services better for everybody, what would you tell them? Does that make sense? I think so. Oh, so that's not worth it's all right

Keep it in the in the back of your mind, you might think of something. Um, so, yeah, have you ever had any, um, difficulties getting apart from the one? The example you gave me about support to take your meds? Are there any other examples of it being hard for you to get the support you need? OK, I don't know if got cushions as well and osteoporosis, so I think that's a bit I think that's fine off to you as well, cos they don't know what I sort of thought to give me, so I mean mm. And who? Who helps you organise all this? Is it your aunt? No

These people. Yeah. A G plain cos my auntie's disabled and that so she got very well

She's not physically able to do that with me. OK, so tell me what you like about living in Halton. What's good in your life, what you do every day

Well, on a Monday, I got to move, and then I'm here three days a week, but it ontaria we're going to, uh, Kia on Friday. I was like my mum then weekends to relax All. So tell me about the voluntary work

What do you do? I do. I do admin Who's working, Photocopy and following things for G and that. Yeah

And how does that make you feel? What? Feel? Like I could do something? Get some motivation and stuff while I'm doing it. And so you do that one day a week, is it? Yeah. So, um, is there anything you'd like to do that you don't do? I'm just thinking, like more volunteering

Did you meet my daughter, Dawn? She was at one of the Yeah. So, um, I've got her, like, four different jobs, so she has to She has to volunteer a lot. Um, So I'm just wondering whether maybe you'd like to do more volunteering or work, or, I don't know, at the moment, I'm not really sure

Yeah. So do you feel quite happy with the way your life is at the moment? Sometimes I do sometimes don't depend. You know how it goes with the spot or that because sometimes I don't get Yeah, good news

Sometimes I get bad news, which I don't know. I get dead panicky. And I get worried at panicky all the time and very hormonal

Yeah, it would just go. Right. So is that mainly about your health? Yeah

Extreme cushions on me. Huge gun, because I probably huge huge gun. So you would you say you rely on Gail a lot? Yeah

Yeah, on the so as well. And did the service is it called Gateway where you were? Gateway Did that, um, keep going through covid? I remember the How have they did. They did online books

Yeah, And you bought your workout. Do you help? You could do it at home while you were in here. He bought you some workout from here so you could do it while you're at home

Yeah, and he didn't pick it up when he finished it. OK, so tell me when um Dale spoke to you about talking to us about what life is like in Halton. Was there anything that you thought you wanted to tell us that maybe I've not asked you about? Oh, my Well, because she was so well, I don't think so

I don't think so. That's all right. It's fine

Let me ask you something else, then a bit a bit different. So Halton saying that they want to coro with people? Yeah, by which they mean work together. So when they're deciding about what support people need, they want to work on that with the people who access the support

Yeah, and that's what those workshops were were about. Um is there anything you think would help, um, Halton to do that work with you and the people you know at Gateway? What should they be doing? Oh, it's hard one. Just think this is an opportunity to tell the big boss is what you do

Because sometimes my words got a bit wrong. I'm just trying to work out how to say it. What to say

There's no you can't say anything wrong. Don't worry. Just don't name any names

Don't tell me any names of people you think about in services. I. I think I need more social workers out to help people

I supposed I hard they've left. They've come to me for a couple of times and he said, That's it. Not my C but you anymore

They left me. But Girl thinks I need the support that support back again. Then you need the support

So what? What do you want the social workers to do? Like if I was a social worker in Halton? What? What would you want me to do? Cos you You can tell them and then we can see They called to even think about whether they could do that. No. Uh, no

There's lots of guys out. They'll just be able to get me other support and happening board of education and stuff. But now they're saying you can't do that because they give you enough support

You know what I mean? I don't know. Find it. I text, please

Has anyone ever done any planning with you? Like it's It's called person centred planning. Um, but like thinking about the future and what you want from life. Has anyone sat down and asked you what you think? I can't remember

Can't think. I don't think so. If you had a magic wand and you had all the money that you needed and you could do anything, what would you really like to do? I don't know

And a cough thing you said in a moment. OK, don't worry about it. So we'll stop talking in a minute

Um, So I'm just gonna ask if if there's anything you want to say to the bosses in Halton that you haven't already said because it's like a chance for you to do that. Um, Or any any more thoughts about working with people, you know, working together, Um, or what you thought about the workshops? How they could have been better. I really enjoyed the work chops

OK, what did you like about them? Do team work and things like do teach team work would be different the way people were put their things across. Right. So it was good

Like working on tables together and thinking about things. Yeah. So are there any things in Halton that you think, um, the council or the health services should work on like that

Have you got any ideas about things they need to think about? What? I No, I haven't bought Walmart. You said finding your way around a hospital was hard, so that might be something. Yeah, OK, it's just hard travel to yours as well

The bosses and stuff. So who takes you one of the staff from Gateway to? Yeah. OK, right

Listen, thank you so much for your time. Uh, Dawn, I'm gonna stop the recording. And then, um, if we get Gail back, we can talk about, um because I think she's got some more people who want to speak to us

Is that OK? OK, I'll just hit if I can. If I can find the record button. OK, cool

So it was just It was brilliant what you were saying just now. So good to capture it. Just tell us how you've got to work with dawn

And like I said, dawn, I I'd known Dawn since she was 16. She I worked with her when she very first left school, but we kept in touch over the years, and then we set up the inspire project. Um, which dawn found out about and wanted to come on board with because we had some free places

So she came on board with us. Um, but at that point, her Cushing's disease, which she's already had the tumour removed from her pituitary. Um, it it it had come back

It had grown back and was starting to give her problems with sights and things like that. Wasn't it done? So she'd been back to the hospital, and they said it needed removing again. Um, so she went in for surgery

I think it was the first year you were back with us, wasn't it? Um, she went in for surgery, but after the surgery, because they had to take so much of it away. It can cause a condition called incipit diabetes. And with that, what happens is the body can get dangerously like life threateningly dehydrated

And and they can actually die from it. Um, so she wasn't giving her medication straight away. They they were aware as well that she had learning difficulties

Um, we'd made sure of that, and we made sure they were aware she had learning difficulties, but nothing really was put in place for that. Um sent out with no medication. It took a while for the doctors to even know their own GP

To know what medication didn't. We were waiting for the hospital stuff to go to the GP, weren't we? And we were on the phone to the GP. I mean, the GP did help Quite a bit, didn't she? Doctor Arnold helped out quite a bit to try and get it in place

This medication, but she hadn't been given any documentation even. Um, So we were We were the ones that were trying to translate what the hospital had told them. Um, so anyway, she didn't have the medication, and you didn't have it sorted for a few weeks

Really? A couple of weeks, wasn't it? Yeah, but in that period of time, Dawn started getting severely dehydrated, and she got really, really poorly. And then I mean, II, I we don't work on a weekend, but Dawn has my contacts. So Dawn contacted me to say she wasn't feeling well

Um, and luckily she did because I mean, she was severely dehydrated. She wasn't talking coherently or anything, you know. And dawn Dawn lives around with with with an Auntie and that

But you know that she's disabled as well, so I can't really help her. Um, So I ended up going and picking her up on the weekend, and I took her to the hospital, and we were there until gone 10 o'clock, wasn't it before you got seen? And we were there for quite a while, and it turned out she was, like, dangerously dehydrated because she hadn't had no medication or nothing. You know, we we would, like, go and, like, don't drink more, drink more when she was in with us

But that was yeah, but yeah, she wasn't herself at all. Totally not there. So anyway, that got sorted

Then in the end, didn't it? But since then, you know, like this week, she was meant to go. She had a talk with the doctor online, which is not ideal sometimes either for people with learning difficulties. You know, um, she had a meeting with them and they said they're gonna give her this injection now, which is an emergency one

Should she ever get severely dehydrated. But now she's had this condition now for three years, and it's the first time you've even mentioned anything like that, you know? But when we she got sent through the appointment and on the appointment, there's a video showing you how you give cos you've got to give yourself this injection, which is OK if it's like an EpiPen, but it's not. When you watch the video, the video shows you how you mix up the medicine and put it in the syringe yourself and then inject yourself

Now John's got I mean, I'd probably struggle with it. You know, John's got LA difficulties, and also Dawn and and Dawn will agree with this. I'm guessing when Dawn's a bit worried about something, she gets very stressed

Their anxiety levels rise, don't they? Hey, so when she gets very anxious, she worries about stuff terrible and she cries, Yeah, And so just to say to her, right, you've got to give yourself this injection when when you're really dehydrated. Dawn would panic over that. Oh, not you

What would you be like if that was you? If that happened, when I that's that's what we'd be getting, asked them questions all the time. But when should I take it? That's what she'd be like. So we got in touch with the hospital, and we said, She's we're not bringing it for that appointment because she cannot manage to do that

So if we'd talk Dawn to that appointment and show, let her see all that, how she does it and everything and they give her that medication that would send dawn into a massive panic, you know, So it's better. Dawn doesn't go to see what what they want her to do and telling her things because she'll worry over it now she can double her medicine as well is another point. If she gets like ill, if she's not well because with Cushion, she has a very low immunity, Um, she can get ill quite easily and quickly, so that but nobody else is there managing this

We are the only support that Dawn has, and we're like a training provider. Can I get a nurse? Can I? No. We tried to get it under the learning disability, but they told us she hasn't got a learning disability because she's got a qualification

That's what they base their their their decision on, you know, because we answered it because even it was one of the ladies who was on our workshops with us, who who'd said but dawn through for assessment with us and, um, we did. But it wasn't her who made that decision like someone else, then makes that decision once assessments have been done, some panel somewhere that I've probably never met Dawn. You know, and and this is the issue, really, is that there's people making decisions, whether these people need support or not based off a piece of paper that somebody else has filled in

So what do you think? What sort of support do you think would help in Dawn's? Well, I think, I think definitely in Dawn's situation. She should have like like an LD nurse. You know what I mean? She should have somebody with a little bit more medical training than what we have, because we try our best to help her

But, you know, we found no reason to go. Well, you have dawn double up on your medicine, and and I don't think Dawn knows whether to do that or not either. Do you know she doesn't know I'm a poorly enough to do that, and we don't because we're not medically trained, But it's kind of being left up to dawn to make them decisions

Do you know what I mean? And and this has been No. But I mean, it's not even a case of whether you're good with it or not. Or, you know, she doesn't know if she's ill enough to have to double her medicine

And if she doubles her medicine, Is that good or bad? You know, nobody's really explaining this, are they? No, but there's no continuous medical sort of support for them, if you know what I mean. And it's quite serious. You know it it when? When she like when she was really poorly after her operation, she got really dehydrated

It means she was really poorly. And I was Yeah, did I. I know one of my wife

No, you didn't. OK, thank you so much for sharing that. That's like the most important thing, really, isn't it? Because Dawn, you know, Dawn is able to do things for herself, aren't you? And she is quite a play for Gail, you know, in some areas

But when it comes to things like that medical stuff I mean, it's confusing enough for us when we haven't got difficulties sometimes. Yeah, but for dawn, it's like they always phone her up and go, Oh, you've got an appointment or we need to talk to you about this. Dawn doesn't know what they're talking about half the time, half past 4 to 1 of them, you know? So it needs really like like a a learning disability nurse or something that is there and knows Dawn and knows her case

So if she needs appointments or she has to do things like that, she has that support of somebody who understands it, you know, understand hair and air condition. And that's really I suppose what we're trying to get at, isn't it? You know, and we've tried to get her that support, but it's not happening. OK, I'm going to hit pause again

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