Report transcript in: Partners in Care and Health - Stories of Information and Advice 19th June 2024 Webinar

Please Report the Errrors?

and when you've needed

help and support and you've contacted them.

What's your experience been with,

you know, accessing the website. Accessing the phone line.

Accessing social services

very, very hard.

If you call them,

you are

press number one. Press number three Press number four.

You are in the

queue. Number 26. 28.

How long it will take? You don't know

Then when it comes to 1230

everybody has gone for lunch call later again.

You have to start the procedure from beginning

email. If you write

they Oh, we have received your email. Uh, automatic reply.

But the real reply No

due

or sometimes doesn't even automatic reply doesn't come to me

with everything. Not a social worker GP NHS

anybody you do, we are. We are waiting in the queue

for Ivan. How long you don't know?

Tell me why. It's particularly difficult for you with some of the,

um challenges you have after having a stroke.

I'm facing the challenge day by day because

nothing is going straightforward with my life.

Because whenever I want something,

I I'm trying to get help. But I don't get the help.

And then I I do mistakes.

I create mistake because

some are frustrated,

maybe angry.

And

my mistake. I do my mistakes. And when you receive information,

is it accessible to you? Can you always read it? Can you always?

No, I can't read it at all because they are very small

1000 times I have mentioned them.

Everybody. Not only soc

Uh uh, this, uh, borough council. But

NHS

anybody

nobody is bothering about. Uh,

I'm partially blind.

All the letters I will show you. I have whole file,

which I save all the letters from doctors GP

any other part? Nobody is giving me the

They're supposed to write a big letter. So which I can read.

Um, my mom is deaf, Fully deaf. She can't hear.

She doesn't speak

English. She only can communicate to people like me and my sister

with lip readings. And

my dad has been diagnosed for dementia. I think this

over a year now.

Um, and also my dad. Communication

is not very good.

He been living in the UK for a very, very long time.

I think he's been living in the UK for 5060 years.

But he always worked with the community people worked in a restaurant

where people, um, only speak their own language.

So since my dad has been diagnosed for dementia slowly, slowly,

things is getting worse.

You know, like

any dementia Do.

What you described was a really good experience of the diagnosis.

How did you end up being in contact with social services in the first place? Yeah,

it was through, um,

part of GP.

Um, when I made, I have made them concerned about the situation.

And the doctor said, I you know, we we need to refer you to the adult social care.

We need to refer you to all these services available,

et cetera, et cetera. To to get you needed help.

Because of that, I got contacted with all this support.

Um, so some of the support is not any good to help my mom with the washing

and the gardening once a week.

Um,

but again,

my mom doesn't want what was good to her because she said, Forget about garden.

I can't even

can't even deal with your dad inside the house because he is working.

Turning the gas on

turning the boiler off boiler on opening the windows, trying to wash his watch.

Yeah, it's just

they're not listening. My my mom's situation, they're not

They're probably listening, but

they have to follow. Probably those tick boxes. That what is said,

You know, your your dad is not eligible for full time care

because of until this has happened. So that's the thing.

So they need to assess my mom, not my dad.

My mom is not capable to look after my dad.

Yeah. What would make a difference?

Uh, yeah, III. I think the,

um,

things need to be

simple.

That's like when you need to get information,

advice or any guidance around mental health services

services in the community. Things that might help you with your mental health.

How easy is it to access via the

like council website, or

like, yeah,

other ways of

I've never accessed it like that. I didn't know you could

access it through council. I don't really know who to go to.

I've not been told anything about who you can speak to.

Mm.

What impact does that have on your mental health and well being

a lot. I don't believe that we should

be as people's mental health should be in crisis before we get help,

I think that we should be helped before we get there.

It seems to be that that's how they want you. They want you at

rock bottom before they're gonna help you.

I don't.

I don't feel like there's support out there.

It's part of people with severe mental illnesses like bipolar,

to If I'm in a manic stage,

I feel great

and that I don't feel like I need help. Or but actually I do,

and I won't engage.

I'm not gonna be the person to reach out and say Actually,

I need help because at that point in time,

I feel like I'm on top of the world and I can take on everything

when actually I'm really ill.

And when you've been in crisis and called the council Crisis team,

like what advice or support, like the crisis line has given you,

I don't phone crisis line. Not after I had the experience with them

where

they didn't seem bothered

and they just told me to go to A&E.

I went to A&E. I sat there for 12 hours

to have a nurse tell me that

the doctors are really busy. Um,

she's not gonna look me in my eye because she's too tired.

Tell me a bit about how you have found out about that information. And

yes, that good question. I

they do send us this, um,

kind of a booklet for the since they have got a new policy. Before that,

it was all verbal and direct payment team were very, very useful,

uh, to

inform us. But now there are a lot of changes have taken place in a,

uh, learning disability social work system.

And

recently they started

to have a quarterly

direct payments meeting at one of the places in Stockport.

And I attended two or three times

not all the time as and when it's suitable

with the carer's health, then only we can me and my husband go

and attend the meeting. And

before

there was support where they would meet you and it would be verbal,

they call it now a brokerage department.

We had a good rapport with the two or three people over there.

They have all retired now,

and and now there are a lot of

because of the top

management has put the restriction to them so they can't help much.

So what happens now? How?

How do you find the information and advice and guidance that you need?

I called them up.

Ask them because the once

once the user goes on a direct payment, they do not have a name.

Social worker and everybody in that,

uh, meeting are

asking the top management. Can we? Why can't we have a

A name, a

social worker? So that whenever we need it,

they are there to help us rather than a new

on duty social worker. When they talk, we have to start the

whole thing Whole scenario, whole history

of my daughter again and again and which is very painful

to us

mode

as a balance.

Can I ask you, what would you want to say to those people offering

information, advice and guidance and support around social care

to get it right? What do they need to do to get it right?

They're supposed to send me

all the documents properly, which I can read myself from.

I don't want in my mother lung

language.

I can read English. No, I can read English.

I can understand English. So just send me the letter that, uh, G

you are supposed to do ABC D

EFG you are not supposed to do

in case of emergency. Call this number

in case of anything email this number we will touch. Get in touch you within

five working days,

something is should be there Not after six months or seven month or automatic reply.

It's not acceptable at all Person like me

because I am 24 7 housebound.

I don't go out

ok. My dream situation because I have thought about this quite a lot

is that

you have someone who meets with you

when you first get your

diagnosis if you like.

If you

if you can define yourself as someone who is eligible for needs, you know,

then you don't wait for 18 months for someone to

come along and to confirm that you you know.

So So I suppose what I'm saying is that either socially or health wise,

you need to have

an immediate response. You need support, therefore you get it.

So someone comes along and says, I know that you've got this situation.

You need support.

Tell me what it is that you actually need. And if you say I don't know, that's OK,

I'm not just gonna go and say, All right,

I can't help you Someone who walks alongside you and knows what's available

but also is prepared to

help you set up what might not already be available. So I

after I'd done the partners course. I also did a support brokerage course

with the national brokerage network, and that was about

together. If you if you get sort of direct payments to get support

or a

individual service fund, you actually say right, if this doesn't exist in my area,

we need to create it.

Let's make it happen. Let's find that support.

Let's let's define it and get people in

who might be prepared to,

you know, set it up and help make it happen. It means being quite creative, but

that's that would be my ideal situation.

If I'd had that from when my sons were really young,

I think I could have

I could have had a much more pleasant experience of what life

was like as a as a parent of a disabled child,

and I could have felt less frazzled, Less stressed probably

would have been a lot happier.

And what would you tell to people that are developing information,

advice and guidance offers

to people like you like,

What do they need to know How What do they need to do different?

They need to be patient with us.

They need to think about the words that they're using when they speak to us

again. They just

need to

basically just show a bit of compassion.

Mm.

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Author

cat@curatorsof…

Post date

19/06/2024