Report transcript in: Sally and Alex story about closed culture

Please Report the Errrors?

Yeah. So you're happy for me to record?

Um, do you wanna introduce yourself?

Yes. Hello. I'm Mark. I'm from Essex.

Um, a person who lived experienced mental health. I've got bipolar.

Um, also, I've got psychosis and, um,

borderline personality disorder.

So, Mark, uh, tell me about living in Essex. What's it like living in Essex?

Um, I live in Basden, Um,

to be perfectly honest, um,

it's it's quite weird because Basden is in

the Essex County Council part of Essex, because there's three parts.

If you lived in South End, South end would cover everything to do with social care.

Um and, um, everything that you would think a county council would do.

That's the same as,

And I live right in the middle. So I'm in the Essex part, So

I've got areas of or people I know that are getting

much better services in one side of me and the other side of me,

and then I'm getting my services in the middle Here.

Thanks, Mark.

You talk about services, so can you tell me about your experience of receiving, um,

care and support?

Um, care and support. I had a social worker. I've had four social workers in total.

Um, I wasn't classified because I I it was an s m I So serious. Mental illness.

Um, I wasn't serious enough even though that I'm serious mental health issue

to get personal budgets. So that was a big issue for me.

Um, however, my benefits were in the sense of that. It was, um

d l a then now p p

and

the old incapacity, benefit and income support. But now

E s a, um so,

um, but but but again, they said,

but that But then the benefits I receive passport we need in certain respects,

certain things like a bus pass And,

um, some other help. Um, but the personal budget side of it, Although I was told by it

several people on the mental health team Oh,

you'll be fine with a personal budget that that'll help you

and also was given the wrong steering information

because they were telling me about things like,

I mean, with my bipolar, if I'm on a low, it's very an anxiety driven

and they said, Oh, don't worry about that.

You know, the personal budget will pay for a cab everywhere,

and it was like

Oh, right, OK. And and of course, I found out that that wasn't the case.

It wasn't about that,

you know, the personal budgets there to use for,

you know, sort of getting a show for almost it was actually for you to get someone

that will try and help you sort of get over the anxiety, you know,

sort of move forward, you know?

So you talked about, um,

the kevin support that you got. So what, Kevin support

do you think would have, um

what kind of support do you think you need

now or then

Now, then? Yeah,

now probably less support than because, of course I've I've

I've

managed to, I suppose, really sort of educate myself and, um, know about things and

and and actually try and, you know, sort of get the into the the points of

If if I need something in that sort of direction, let's say, you know,

maybe it's transport.

I know where I can actually go to and actually ask and and and normally get

then when I never knew nothing, and I didn't have anything, and I was sort of,

I suppose,

like a little newborn baby to the services, you know,

sort of because that's how it feels like it's a bit like you.

You you're a baby.

When you're in sort of care,

let's say or in in hospital you come out and you're a

bit of a toddler and then you sort of grow as that.

That's how I see it as,

um But then it was it was

support in the sense of because, of course, I was straight. I was I was homeless.

That was one thing.

So I didn't have a an, um, an abode. Um, I was sofa surfing,

um,

which they they couldn't do nothing about. My services were were told that

Well, you know,

you'll have to go back into that because and And I had one psychiatrist say to me,

um, we can't keep you in hospital cos we're not a hotel.

That's what I was told.

Um, and the the local authorities were then also looking at things like, um,

community community care grants.

And, you know,

it's like the old community care grants that you used to get from social fund.

They don't have them anymore. They got rid of all those sort of nice things.

Um,

but when they they actually said because you haven't got on a boat because

you've not got a place we can't give you a community care grant,

because that's for things like beds and all that.

And what you're doing at the moment is is your sofa

with your family?

Um, so really, it would have been clearer

in them days. Clearer, um,

clearer knowledge about what I was entitled to,

um,

also, I suppose. Really? Um, a much more,

uh better. And also give give the information

in a basic language because

lot of them speak so,

you know, in their acronyms and everything and also,

sometimes they don't even talk to you.

They'd rather talk to your other care professionals. It's like I, you know, sort of.

I was having social workers talk to

my care team, my mental health care team,

and then all of a sudden, I was just told Oh, well,

we were speaking about that the other day and I said, Well,

should I be know about should I know about it?

Because it is about me

so much more sort of clearer. But now

you know, sort of. I've I've

I've become a little bit more stronger.

And I suppose sometimes, like that's why I advocate a lot

with other people to actually say that this is what you need

to do or this is who you need to speak to.

So that sounds really, um,

powerful that you're advocating for other people.

So I'm wondering about like, services. What role do services play within

helping people get what they need?

Well, it it's depending on what services you're talking about.

I mean, um, there's lots of things changing again because

within health and social care, it seems to change on

on a sort of like

or decade basis, sort of every 10 years. There's a new change.

Um, we had all lots of changes in 2012,

and and we're going through lots of changes now.

The lots of changes that we're going through now seems to well, look on paper

and look what we're being told.

You know, by anecdotal evidence, it's gonna be all fantastic, because

for some unknown reason, everyone's gonna talk.

You know, the health care service is gonna talk to them.

Sort of social care service, social care is gonna talk to the local authorities.

Local authorities are gonna be talking to these people. Do you see what I mean?

It's all gonna be very, very wonderful and seamless and whatever.

Um, I'm probably too cynical to say that that's probably the best,

and and probably that will happen.

Um, in in my heart of heart, it would be wonderful if it did. Because if it did,

then anyone who is undertaken or anyone who's

got health care issues or social care issues,

you're not gonna have no issues at all. You know, um, if you've got a, um,

a problem with, you know, maybe you have to go into hospital for a while.

Um, everyone will know. Everyone will help you. You know, your discharge will be

organised at point of admission.

There'll be things there are available in the way of when you are discharged. The so

you know, sort of social care. Will will then sort of be,

um,

in in. Put it to your care.

Um, the local authorities.

If you if you live in a council house or a social landlord,

they'll know about what's happening so they might be able to help

you with things like rent reductions or free weeks because you're not,

you know, sort of living in the proper state.

There's all this wonderfulness,

but again, you know,

that's that cynical side of it that's coming in the back of my head.

And it's like

I don't know whether this is gonna happen and I don't think that it probably will,

or if it will, or if it does,

it's gonna take a while. It's gonna take a good few years to get in place, because

at this current moment in time,

um, I I think it's a fear. I think what it is is what I've I've tried to find out

and what I I see myself. Maybe I'm totally wrong,

but I feel there's a fear because

you have health care.

Professionals don't really want social care to impede on what they do.

And then you've got the local authorities that don't wanna have, you know,

sort of doctors or nurses say, Well,

this is what needs to happen because S N y u telling me my job.

Do you see what I mean? It's It's like a fear and a fear, Um, a culture of fear

that seems to happen,

which is very odd.

And how do people

manage to get you know, the support they need? If all of that fear is happening,

well, that's the problem.

Because when you have that fear or that culture of fear happening,

then the person who is needing the most help seems to be left behind and also, uh,

in in the majority of cases,

if you're unwell and it doesn't matter whether it's physical, mental learning,

disability, whatever,

um,

you you you you already become very voiceless when you become unwell

as it is because

you you you know, you you you're much more.

Yeah, you're looking after what you're going through at that moment

and things regarding your housing or

things regarding your benefits or things regarding

your healthcare.

You know, you you think I can't really cope with it, and

it impedes on that, and and what you really want is someone

to actually be and and I suppose, really be sort of a,

um,

a gatekeeper for you to actually speak on your behalf or at least

be with you and actually advise you about what's happening at

that moment and advise you about what you should be saying.

um because

you you you become Even though you're at the centre of it all,

you become very tiny when lots of things happening when you're unwell.

And this is what I think we shouldn't have, we should actually become the

You're in the in the centre, but you you become very big.

Your voice is known, your voice is heard.

Um, I mean, if I if I hear probably the word or the phrase person centred care,

um, ever again, I think I'll probably puke because I hear it

on a daily basis where we're saying we we're putting in so much person centred care.

But they're equally not because when you actually speak to the person and say, Well,

how's your care going?

It's like, Well, I've not been told or anything about what's happening.

Uh, you know,

I've they've been they've been doing such and such for the last six months,

and they're still not included.

Me.

You see, that's not person centred, that that's just having someone and

and labelling them as a A as a as a health care issue or a social care issue

and just sort of speaking to them rather than speaking with them.

If you had a magic wand

and it was in your gift to change all of that,

what would that change? What? What would you do?

Well, it would be very, very easy.

It would be actually just opening up the communication lines. Um,

ultimately, the iPad's just moved there. Sorry about that.

Um, it'd be opening up the communication lines.

It will, Actually, the magic wand would just actually allow people

to speak with each other.

It's not about sort of putting x amount of thousands of pounds into social care,

or I mean, of course, I would actually put money into social care and health care,

but it would be in the right way.

It would be, you know, sort of a front line level rather than actually back room.

Um, but but I would love to have the magic one to actually say Start speaking

to each other.

You know, if you've got a client or a patient or a service user or all them different

ways, they they classify us now.

You know, I I always say, you know, classify me as Mark. You know, I'm Mark,

but if you want to talk about mark. Then talk about him and and he's quite happy.

You know, If I've given you permission to talk,

then then do it

and and you know, if you've got to er, you know, if the DWP need to speak about

housing, then housing can speak on on, you know, rather than actually saying, Oh,

well, that's a protocol that

we we can't talk to you, you know, that'll be my magic wand.

It'll be, you know, talk to each other.

So in your life, if everybody talked to each other all these different

systems and services that you receive, what difference do you think it would make?

Well, I think it would be seamless. And that's what people want.

You know, I I i when I go to sometimes meetings, um,

you you have and and mainly this is for healthcare.

Um, they sit there and they go, Oh, well, we've got such and such,

and they've just gone through an f, C, p and an F.

C. P stands for,

uh, first contact practitioner.

Um, or they've gone through.

And it's all acronym based. And all this now,

you know, I've been doing it for a long time.

So I get all the acronyms and what have you.

But

what I normally see is that when I've gone through a door and

it's got that blue NHS logo or it's got that social care logo,

I just want to go in there

and get the services that that logo represents. So if it's healthcare,

I would hope that when I walk in there and it's got

that NHS that everything to do with my healthcare can be covered.

And that is what is what is needed.

It's not about, you know,

sort of all the all the internal politics or the internal sort of

primary secondary or this this trust does. This or

this organisation does that.

I don't need to know that as a as a user, I just want to go in,

have my services, what I deserve.

And it's all done

and it and it can be under one roof and and the politics internal or external,

that's their business, but not mine.

But you know, and, um,

that if that comes for a lot of people,

you know it would be just something where you walk in the door

and it's all done and dusted. And, um,

you don't feel like that you're being pulled from pillar to post.

Thanks, Mark.

So I know that you've helped us look at the

priorities for the regional priorities and the priority setting process.

I was wondering if and and I know that you were, um, someone that talked about

the priorities all being there, but the bit about people was missing.

Um,

I wonder if you would tell me about kind of what

you would hope in terms of the priority setting process.

Well, what I think that that, you know,

sort of I I said about people being missing because I think that

it it has been missed out, you know, sort of.

It's like, you know,

if we're gonna go through AAA change or if we're

gonna go through a review or something like that,

it's all good, then reviewing stuff and what have you. But

it seems to be really odd.

They missed out the most important people,

and that's the people that actually use the services.

So what I would like to see is that in every point of any review,

even if it's the point of

someone's reviewing or I don't know, Um, a leaflet even, you know,

like that they produce

that people are involved directly, you know, it's co-production.

You know, we we we hear this word or that phrase co-production

continuously all the time. Now, you know, it's the buzzword of the 21st century or

at least 2021.

Um, but the thing is, I I I really want to get some kind of

definition of the word and and sort of, I don't know.

I mean, I've I've got a nice bald head here and I've got no hair.

So really,

I could put the definition on there and just

sort of walk around with it and actually say,

Look, before you gonna involve anyone, read the definition, first of all,

because what are you doing?

Are you involving consulting

co-production,

or are you just actually sort of ticking a box?

And that is the big thing that I would love to have.

It would be that people go blank page approach,

have the definition of cop producing or codes designing

and go forward from there rather than actually as we've

seen and within the review we've got at the moment

where the you know we've been brought in at the last minute.

No, we should have done this.

You know,

it's that should or would have could have mentality and we need to get rid of that.

We need to actually say that any review,

the heart of it is the people and we work together.

But again, as I go back to what I said earlier,

I think it's fear. I think it's a fear process.

You know,

you've got some of these people who are quite high up in their organisations

and they sit there and it's like,

Oh, should we have such and such you use our services, be around the table with us.

Well, of course you should,

you know, you you You know, if you're in that position,

you've got our ear, the good, and you've got ear the bad and, you know,

sort of you can't keep on sort of saying, Well, our services are, you know,

gold standard when quite literally, they're not gold standards.

You know, they that you've got to hear the truth sometimes and it and it may hurt.

Sometimes it's great.

Sometimes people go along and say Oh, absolutely wonderful services with you

and that's great as well.

But, you know, you gotta you gotta go with the good and the bad,

and that's what we need to have.

Thank you. Mark. Do you have any other comments you wanted to add?

No, it's just just really, in a sense of just just the final comment is is that,

you know, sort of doing this process has helped me.

Um,

it's made me look back at certain things with

regard to services I've received care I've received and also

looking where we've come. I think we've come a long way.

I think we've actually moved a long way forward. I don't think we're in the dark ages.

Um, but I don't think we're in the wonderful Emerald City of

a yet either.

Um and, um, I don't know whether we want to get to Emerald City of Oz anyway.

Really, But I think that we need to have a little bit of

in between, but I think that we're we're better than we were, but but again,

it it it's a long time. It's a long process,

but it's been a a remarkable, um uh,

opportunity being part of this.

Thanks, Mark. Thank you. I'm gonna stop recording there.

OK?

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streetreporter

Post date

22/10/2021