Report transcript in: Jade talks about her experiences good and bad of receiving care and support

Please Report the Errrors?

video itself be put on.

Say that again.

Will it be the video itself?

Yeah. Put on. Definitely. Yeah.

So do you want to introduce yourself?

Um, so, yeah, My name is Jade.

Um, I have had a direct payment now for I actually don't know how long.

Um, for about 8 to 10 years, Something like that.

Um,

yeah.

So, Jade, what's your experience of, uh, receiving care and support?

Um,

it's been pretty overall. Good.

I would definitely say, um, having a direct payment has been life changing

before. Um, I had one. I was incredibly isolated in my home.

I hadn't long had to stop work. So, um,

I was in kind of a bit of a dark pit in a way, Um uh, mentally as well.

Um, no one really expects to have to stop working in their twenties.

Um, and I'd, um, you know, done lots of jobs that I really enjoyed

had

was aiming towards working in,

um What I managed projects and that kind of thing and and really, really loved it

and thought in some ways I could go far doing that because I I loved it.

Um, and then suddenly, to realise

that wasn't gonna be the case.

You do feel like

everything that makes you. You has been stripped away.

Um,

you know, no one at school says, you know when they say,

What do you want to be when you grow up?

No one answers. Oh, I want to be sitting at home in pain all day. You know, so

and when your your career kind of is a major thing in your life. So,

um, it really helped me get out of that pit

by having someone who could drive me places when

I wasn't able to to get my wheelchair out,

which I found difficult

and all that aspect. So from that side, it's been brilliant.

But that's not to say there hasn't been challenges with it

in a variety of ways, particularly setting it up in the first place.

I found really difficult.

I was completely new to the social care world, so I didn't know the lingo.

I didn't know what I was doing.

Um, I just assumed I'd say I need this and

they'd say yes or no.

But I found it was actually not a particularly transparent process.

And when I'd say things like, Can I

include this in my budget? And they'd say No.

And I'd say, OK, can you show me the policy?

Because I don't understand what can and can't be included.

I'd find I wasn't getting anywhere, and I I didn't really understand that

having always,

um,

you know,

worked or been involved with things that always had some kind of written policy.

Um, I really didn't know how to fight that.

And at the time, there was a really good advocacy service.

Um, and they really helped me. It changed things completely.

They no longer are funded.

They vanished a year or so into my budget, tried to phone them one day,

and literally their phone had been disconnected,

which sometimes happens in the charitable sector

when they lose contracts and things.

And to be honest, from that point on, I've never had good advocacy.

Um, mostly my budget kind of potters along.

I don't ask for things because I'm scared to change things,

but I've had a lot of experiences this year where I

have had to ask for help and had a terrible time.

it's kind of coloured my experiences again,

thinking, you know, all the people that are out there having the same experiences,

and it's just not right.

That sounds really tough.

So you talked about, um, your previous experience being quite good. But actually,

um, you having to find out

the process all by yourself and and then not being

open and transparent. So I'm I'm just really struck with you saying about,

not wanting to ask things because of

I assumed fear of kind of, you know, service, you not responding.

So what could be done differently?

mean, the whole pro I I think that's something. A lot of social services, Uh,

people who work at social services don't understand, and it's not.

It's not a mean thing,

but I just don't think they understand how much fear there is in the system.

Um, I will never phone social services to ask them a question,

because I worry it will trigger a review.

And it's not that I've got anything to hide or I'm doing anything wrong.

But every time there's a review, there's that fear.

What if this is the time my care is stripped away?

What if they take something away that I desperately need

and I can't fight for it to come back.

And that actually happened this year.

Ironically, the thing I've been fearing the most.

yeah, suddenly, um, out of the blue.

I got an email after I'd asked for help, uh, for funding towards my wheelchair.

Um, they said I needed to have a review early,

and then they said I'd come up for monitoring,

which is something my council are currently doing at the moment.

And, um so basically,

my support plan was looked at for the first time since it was put together.

Originally

had the review, all went fine.

And then a couple of weeks later, I got an email out of the blue saying, Um oh,

by the way, we're cutting loads of things from your budget.

Here's a list

the email ended. I know you won't be happy with this. I'm going on holiday now

from my social worker.

the turmoil that caused the utter fear

when you think

you're on a even, you know,

all we really want with this care and support is to be able to live our lives.

And once you've got to the point, it might not be perfect, but even if you've got

something in place, which means you can do that to a certain extent.

I just don't think anyone can comprehend the fear of that just being ripped away

and to just suddenly get this email instead of talking about it to me, face to face,

treating me like a human being.

Um, instead of saying

we need to discuss this and the reasons why just to get this email being like, yeah,

sorry, it's all being cancelled.

And then almost a sort of goodbye,

good luck kind of attitude with this going on holiday now,

um,

I went into complete meltdown over it, and

I still don't know what the outcome of that is. Months later,

my understanding is it will be OK.

But as I've had absolutely no communication on it and it still hasn't been to panel,

I don't know.

And it's still that fear that's constantly beating on in the background.

And it's Yeah, it is hard to explain what that's like to people not

not using care. Um,

what

I'm wondering is, like, what changed? Has anything changed?

Meaning that you no longer need that care.

No, Absolutely not.

Um,

it was

the the social worker admitted that she hadn't read my past notes.

That was the sort of conclusion to it all.

Um,

some of the things that I've had included in my budget

are things that are outside the scope of a normal budget.

By that, I mean, it's not that they shouldn't be included.

It's that I had to fight for it to be included in the first place.

There are certain things, anything vaguely linked to health.

They don't like to be in your budget now. There's no rules that say they shouldn't.

Um, my understanding is as long as it meets your, um, eligible needs,

and as long as it isn't illegal, you can technically have anything in your budget.

Now, obviously, there's gonna be limits to that.

And at the time,

that was one of the things I'd struggled to get in my budget in the first place.

11 of these things. I'm talking about some treatments that I had funded.

Um, and this was when it was being set up just to be clear.

And, um and it was the advocate at the time that explained to me how to get

to put things in the right words to get that funded. So,

um, I had to get, uh, medical evidence.

I had to put together a letter that showed how it

met each one of my support needs and so on.

And it was all approved

and then 89 years later,

how long it's been I suddenly get the social worker who doesn't read any of that.

She just sees it in the support plan and thinks that shouldn't be there,

and I'm gonna remove it.

So she didn't look into it. She didn't research it. She didn't discuss it with me.

She just immediately had that shouldn't be in their reaction.

It wasn't just the treatments that were removed. There was all sorts.

There was things, um,

like around contingency hours that she said she was stripping right back.

So no, absolutely nothing had changed.

In fact, I have a degenerative condition, so I get worse year on year.

And that was another of my, um,

you know, annoyances that I don't ask for extra support and help even when I need it,

mostly because I just want to be left alone.

I just want to have that support in place that I need and it to just carry on in place.

And when I have the reviews, I just want them to say OK, it's still working Good.

Tick that box leave. Leave me alone again. That's kind of what I want.

Obviously that's not what I want. In an ideal world, this is

what I want in in the world we live in.

In an ideal world, I'd like to say, OK,

I need a couple of extra hours here for medical treatment or

I have some appointments coming up.

I need some help and for it to flexibly change to adapt that

when I say I want to be left alone. Just That's just the world we live in now.

Um so, yeah, I'd absolutely love things to be different.

Um, but yeah, absolutely. Nothing had changed. Just

just her attitude was what had changed.

So So you also mentioned a panel.

So tell me about like, did this panel know you How,

like what's this thing with a panel?

No. And I don't even think it's called a panel these days.

I think it's changed its name,

but my understanding your social worker goes to this panel of managers,

I believe and sort of puts your case forward.

They don't know you. You don't get to go there.

You don't get to know what's discussed at this panel.

Um, and eight or nine years ago,

my social worker went to that panel with the

evidence that I put together for my doctors,

uh, the letters from myself and so on,

Um explained why I needed this treatment and how it met my needs,

and it was all approved.

And that was the one of the things I found really upsetting

that if this panel of managers had said it was required,

it was needed in my budget.

Why can a social worker,

all these years later suddenly change her mind on a snap decision?

And at that time, there was no, um, we can discuss this or,

um you know, here's how you appear. It was just I'm removing it.

End of story Now, I

was able at that time to put an email together

to explain all this that it had been to Pan or it had all the evidence.

I don't understand. Nothing had changed,

and after some weeks of chasing,

she did come back to say that she'd gone

back to all those notes and evidence and found it

and, uh, realised it did need to stay in place so none of that needed to happen.

And it's also what about the person that couldn't write that email?

And I'm in that place lots of times. You know, I often find

I don't know how to put it, but when you can put a sentence together,

sometimes they think, Oh, you're OK, you can fight for yourself.

But that doesn't get across.

You know the impact just, for example, the impact that email had.

I was in bed for two weeks.

My condition flared up. I was in absolute agony.

Um,

I was, you know, depressed. Anxious. Um, it is. It's hard to explain,

just you know what an impact that has.

And so someone might listen to me and think, Oh, well, you can fight for yourself.

But that isn't the case, not not all the time.

And that's That's where I worry about other people, too.

You know, you shouldn't have to

fight for yourself. The system should work.

There should be those checks and balances and pipes that one person

can't just come along and rip someone's care away from them.

Really powerful.

And you mentioned fighting. What impact does

I'm sensing that you always have to fight to get what you you you need

What does impact does that have on your on you?

I think you know,

um what A lot of people don't understand that being disabled is a full

time job in itself because you are fighting these battles all the time,

and that's on top of how the condition actually impacts you.

And

at any one time,

I've got numerous battles going on to keep whatever it is I've already got in place,

whether it's medication treatment, that I need my wheelchair care

and it is just exhausting, and you reach a point where

I give up because I don't have the energy to fight anymore.

So as I've mentioned, there's been this battle going on with my wheelchair.

At this point, I need to put a complaint together

to document everything that's happened in the last year,

because the how I've been treated has been horrendous.

But I just can't bring myself to do it Every time I sit down to do it.

I just don't have the energy to put

it into words and summarise everything that happened.

And for someone who doesn't know me to read that

and for them to understand how it's impacted me,

um, I was asking for some funding towards my wheelchair.

At this point. I

I've given up on the funding. I've I've managed to

sort it with other routes, but it shouldn't have come to that.

Um, what I was asking was incredibly reasonable.

Um, a case was put together

by my social worker who understood it as well,

and that she thought that she backed it.

So did a, um, occupational therapist.

So it wasn't just me on my own saying this was needed

and, um,

I yeah, you just get to that point where they wear you down so much

that you do give up and and in a way, it feels like that's what they want you to do.

Um and yeah, it's it's just exhausting, I

and and it would help if you had places to go to get support,

like a good advocate who knew what they were doing.

But that just doesn't seem to be existing at the moment.

Pink, jade so powerful

Have Where is your relationship with your social worker now?

Like I'm I'm conscious that talks about

this misunderstanding or, you know, social worker,

not reading all the backgrounds and

what

effect that has on your life and your support. Where where is where are things now?

Well, ethics works in a funny way, And I know some other, um,

councils do this that you don't normally have an assigned social worker.

So this has been quite an interesting time because because this battle

has been going on with my wheelchair for quite a long time.

Um and also because of covid, I think having a big impact on how they were working,

I've actually had the same social worker for three years, which is the first time

that's ever happened.

And up until a few months ago, that had been a really positive experience.

Um, having the same a review with someone who already knew you knew your condition,

you didn't have to start from Day one had been really, really good.

The fact I could just email her and say Here's an update and I

didn't have to go into the background like you would normally was great.

However, at some point that relationship changed and that wasn't from my side.

I don't know what happened. I don't know

if, um,

there's financial constraints going on and that wasn't communicated to me.

But it's left me with absolutely zero trust now, not only zero trust.

I wake up every morning

with a lot of anxiety in my chest until I've opened my email.

I've now become terrified of my emails, thinking,

What's it gonna say today?

What if I've got a random email cutting my care or with more bad news?

Because most of the communication has been by email lately?

I've always had that feeling around post, uh,

usually because of the benefit system.

Um, but now that's translated to almost my little safe space of email,

uh, where I'd normally be talking to friends or campaigning or, you know,

doing things that I enjoyed.

And now it's kind of invaded

that space.

And

the thing that I've always feared happening is

my care getting cut very suddenly happened,

and as far as I know it's going to be OK.

But that doesn't make it OK that it happened,

Um, and at this point,

I haven't responded to my social worker in some weeks because I don't know how to

I don't know what she's put in my notes and I There's just so much fear there.

And every time I try and reach out in another way through different channels,

I just don't get anything back to social services.

I mean,

um and so yeah, it's really, really impacted me, because now what was

an anxious time waiting for a review is now gonna be

tenfold. Um, every every time. Um,

yeah. So just the trust has has gone.

Yeah,

I'm so sorry to hear that. And, um, that's must be so difficult.

What?

What would you want to tell that social

worker and people like that social worker about

kind of,

you know, getting it right for people. You know,

I would love to sit and have a chat with her because

I don't think she's a bad person.

I don't think she's evil or has gone out to

upset people in her job.

You know, in previous conversations,

she has fought hard and put the case together correctly,

and I'm sure she does that with lots of people.

However,

there has been certain things that she could have

changed that would have made such a difference.

So, talking to me like I'm a human being, like I said earlier,

um, it is that

dropping the bomb, which, you know, bad news,

whatever it might be and just leaving to go on holiday.

Why didn't she just wait until she was back from holiday?

Why didn't she discuss it with me in the review face to face?

So I understood what where she was coming from.

I could have immediately addressed those concerns because they

were all things that I could answer quite easily.

And I wouldn't have been left with that massive impact that,

you know,

it has impacts on every part of your life.

Unfortunately,

when when you have a disability that's already

fairly complex and difficult to deal with.

Um,

there is such a link between the brain and the body.

Um, and so

every time something happens, that's negative.

It does impact Absolutely everything.

Um,

I I did have an experience two years ago, Um, where Essex County Council invited. Um,

me, uh, people lived experience to a meeting with social workers,

and I really found it a positive experience.

Um, we were able to have just little conversations.

Um, you know, there was no pressure there.

And the most important thing is there was no power and balance there.

No one was there. That could go, right.

I'm gonna remove your care based on something You've said it. It wasn't about that.

It was just about sitting and talking 1 to 1, like,

you know, like friends going out for coffee or something.

And we were able to have some of these conversations.

Like I I explained to some social workers at

the table how fearful many disabled people find reviews,

and their reaction was quite interesting.

They were immediately like, But why you're you're entitled to those reviews.

And I explained to them, but that's it's not how we feel.

We don't I'm not speaking for everyone,

but many people feel that they're not this positive thing.

Or like, yeah, I'm having a review soon. It's more like, Oh, no, what's gonna happen?

What if they take something away?

What if I say something wrong or there's just a lot of fear around it?

And

I think, have those conversations really did change something?

Because I think they went back.

I gave them some tips. Like, you know, come in smiling. Be nice.

Um, explain to them you're not there

to immediately say it. I'm not here to cut your budget.

I'm here to look at how we can help you.

Just simple phrases like that straight away can put people at.

And I'd like to think that really did have impact on the next reviews. They did

so if we could expand those conversations.

So it's lots of different people who've lived experience and

different backgrounds having those direct conversations with social workers.

I think it would make such a difference.

Thanks, Jade. Really important.

Do you have any final comments that you wanted to share?

Oh, I don't know. It's

the system needs to change. However, I think when

the higher ups, the power, the decision makers hear things like that,

they think we're saying

you need to spend more money,

and that's not what we're saying.

Um, you know, sometimes money might be needed in some cases,

but one thing that would change things for so many

people was us having more flexibility over our own budgets.

So I'm not saying again. Give us an unlimited budget.

But the big budget they already give us allow us to

say where that that needs to go. At that time.

My support plan, like I said, was written 89 years ago.

You know how many of you are sitting there now

that your life is exactly the same as it was 89 years ago?

Most people's change, even even in minor ways.

But we don't seem to have that ability to be able to say

right today. I need some more p a hours, So I'm gonna use some hours there

next week. I don't need so many, but I really do need some orthotic shoes. Or,

you know, whatever it is you need, um,

I know a council over, uh, lockdown gave, um their, uh,

uh, service users or whatever. The expression is the ability to

have that flexibility over the budget.

And I heard someone, for example,

upgraded their internet and bought an iPad so that they could have, um,

1 to 1 conversations with people whilst they couldn't go out,

they could join groups,

and they could join online art classes and that kind of thing.

And

another thing is some councils allowed people when

their P A couldn't get in during lockdown

instead to use, um,

some of the money towards ordering a meal from just eat or something like that.

And it's these innovative ways that, um, you know, each person is different,

and that's the whole point of a budget.

But instead budgets seem to want us to put us in a little box,

and we all have to tick the same boxes and be treated exactly the same way.

But even two people with

the same condition and have completely different life stories and and needs

so just giving us that power back to say we can direct our own care,

it can be personalised towards

us.

I'm not saying

no checks or balances, but just let us

live our own lives. And that will make all the difference in the world right there.

That's not the only thing that's wrong with the care system.

But just that one change would would make such a difference to people.

So, yeah, I think that would be the main thing.

Thank you, Jade. I really appreciate your time today.

I'm gonna stop recording

Toggle

Posted By

Author

cat@curatorsof…

Post date

30/10/2021