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Report transcript in: Life in Halton: Experiences with Social Care and Health
Please Report the Errrors?
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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