Report transcript in: Experiences of home care

Please Report the Errrors?

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,

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

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'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

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

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

the care gradually built up.

Basically,

was that your choice of that care? Being build up

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

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,

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.

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.

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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Author

cat@curatorsof…

Post date

31/01/2024