Report transcript in: Clenton talks about his experience with accessing equipment

Please Report the Errrors?

We call

OK,

there we go.

Um,

yeah,

so would you like to tell me a little bit about how

equipment helps you live your life?

Do I need to introduce myself or?

Yeah,

you can do if you want.

You can do a little introduction,

definitely.

um,

so,

um.

Hello,

my name's Clintonton Vargason.

um I'm a disabled person,

er,

a wheelchair user,

um,

someone who has spent

my life,

um,

advocating for

equality,

inclusion

and and co-production in health and social care,

um.

I would say um.

Uh,

when we talk about equipment,

equipment

for,

uh,

means to me

an aid to independent living,

um,

and that's what equipment,

er,

should do

to enable me to live,

uh,

a life,

and I include

in that assistant

technology,

assistive

technology,

um.

Uh,

uh,

um,

And equipment

aren't just.

And nice to have,

if that makes

er er sense,

um,

they are fundamental

enablers

um for.

Uh,

dignity,

choice,

control in my life and the lives of

so many others,

when we talk about equipment,

and for me equipment is,

um,

isn't

about convenience,

it's about independence and

participation.

That's how I

view

um.

Uh equipment and

I would say,

um.

My wheelchair

isn't just a chair.

Um,

it's a mobility,

it's my access,

it's my freedom.

Uh,

and without it,

the world would shrink.

It'd be a smaller,

smaller place for me to access.

It would just be my house,

you know,

um,

uh,

to access.

So beyond

my wheelchair,

there are a range of.

Assistive

technology that helps and supports me,

uh,

to engage fully with the world,

uh and um for me,

um,

That's um.

You know,

like voice recognition software.

I use a lot of that because of my dyslexia and my er

but which allows me to write

emails,

draught reports,

even engage in

what I call creative thinking using mind mapping uh

uh software

to er um.

To er to help me get

my thoughts out.

Um,

also,

um.

Smart home technology,

um,

for me has been a game changer.

and what I mean by that,

er,

I can now

close my er curtains,

er,

I can,

uh,

turn on the lights.

I can,

um,

uh,

even answer,

you know,

my front door

without needing assistance,

you know,

um,

which uh helps me,

you know,

um,

through my,

um,

to make me feel more

independent.

Uh,

makes me feel more confident and safe,

if that,

er,

um,

makes sense also,

um.

It's um

if we think about my

smart,

smart door

uh system,

it means I can,

you know,

I can see who's there.

I can communicate

with visitors and ensure that,

like I said,

I feel safe.

Uh and it all done

through my

er er phone

or my um tablet,

uh uh you know,

that's part of

er er um equipment.

Also,

I would say.

I've got automated um

shower system.

In,

in,

in my home that um

um enables me to

turn.

You know,

the temperature

er er er down,

it's got er helps me um

you know,

trans transfer

onto my chair.

I've got lots of different equipment

that enables me,

well I would say,

to have a little bit of privacy

with um you know,

and dignity without um

even though I I do need support,

but those

privacy areas of,

you know.

Personal care and cleaning and all that.

I've got control over that,

you know,

um,

er,

that would,

um,

also some equipment,

um,

other equipment I have is,

you know,

electric bed,

you know,

profiling bed,

that enables me um

to have a um.

A good

good sleep

and um you know um uh cos I have to have my feet up

in uh in the air causes a lack of circulation,

uh and it profiles at me it's

um.

It's

It gives me

Uh um

It helps avoid pain

er er er er as well,

and it and it makes that

daily living

more manageable,

you know,

um,

if that makes sense,

cos I've got it at a touch of a,

uh,

you know,

um.

But

That's brilliant.

Thank you for sharing.

And some of the things that I picked up on there is that

all of,

all of this equipment and the impact that it has on your life,

like you're feeling safe,

you're feeling independent,

um,

helping with pain and things like that.

What,

what kind of,

why are those things important?

Like,

hearing you speak about it,

to me,

it's understandable that those things are important,

because it's all things,

it's like a human right,

isn't it,

to feel

safe,

to feel independent,

and

To not feel pain,

but

what kind of impact does that have on your life,

being able to live a life where you are independent and you are safe and,

I definitely,

um,

you touched on,

er,

um,

human rights for,

for me,

the right equip equipment,

er,

isn't just a function,

if that makes,

uh,

it is about human rights.

It allows me

to work,

it allows me to contribute,

socialise,

uh and.

Uh,

thrive on my own terms,

you know,

uh,

I'm not,

um,

without it,

um,

most people

take,

uh,

things for granted.

You know,

for me,

these are just the,

the basic building blocks that I need

to be included in society,

that

er er makes sense,

that's why for me,

um.

Um,

when I have the,

um,

right support,

I'm not

just

overcoming,

um,

anything.

I'm,

I'm just living my life

like anyone else.

And,

um,

and it's and I think what you're trying

to do with the stories they're really important

to tell those unseen stories,

you know,

uh and for me,

equipment isn't just

about a piece of kit.

You know,

uh,

it's,

it's enables me to do the things that most people take for

for er granted and feel,

er,

empowered,

uplifted to

take some control

of my life.

Thank you,

Conton.

And

talking about having access to all these different

bits of

Equipment that have such a

fundamental impact on how you live your life every day.

What is there any challenges that you've had to

face or anything that you've encountered in terms of getting access to these

bits of equipment and,

Things that you're using in your life to,

to live from day to day.

Yeah,

if I was gonna be honest,

um,

one of the biggest issues for er trying to access

er er the equipment is getting the right equipment,

not,

is not always straightforward

that you would think.

Um,

it should be straight forward.

Some of the things

that um the knowledge of the.

Uh,

uh,

people knowing about

the latest,

uh,

equipment,

cos one of the biggest things that I

struggle with,

I don't want my home,

and I use the word

home.

Resembling

a hospital ward.

You know,

uh,

I want it blend

blended in

aesthetically

that

it's part of that everyday

feel,

if that makes

sense and some of the

some of the um

equipment,

you're like,

why does it have to look like a hospital?

If that if that makes er er uh sense.

But also

the amount of administration or

er the battle with red tape.

To get um um you know,

just to get the basic

things that you need

to live

not

always that simple,

even though

the system and people say it's simple to,

to access,

you know,

um I have um

like nobody told me like with my wheelchair,

about,

you know,

um I need maintenance of my wheelchair.

Brake telling me I can get a a a a a wheelchair,

but if it breaks down,

you know,

cos I've got a a powered wheelchair.

You know,

I have to do all that myself,

you know,

so those are some of the

er er the the um

the basics.

Other challenging

er things are delays in

what they call assessments,

you know,

to have,

you know,

there have been times when I've needed

a new,

new equipment or repairs

of equipment,

um,

but the assessment process.

It's

too,

you know,

too slow,

and will do,

if that makes sense.

And for me,

it just,

um,

if I said

imagine needing a wheelchair for mobility,

but

waiting weeks

or months for someone

to approve it.

That's the reality of many

disabled people who have physical disabilities.

You know,

um,

also some of the challenges is,

I would say,

um,

postcode lottery.

Uh,

and what I mean by that,

um,

to access equipment

shouldn't depend

on where you live.

Um,

for me,

it,

um,

yeah,

in the UK and,

um,

listening to other,

uh,

disabled people,

different local authorities and NHS authorities,

you know,

NHS services,

often,

um.

Uh offer different levels of provision.

And some of er,

some are more proactive,

uh and,

and some aren't.

Others make you jump through endless hoops

to get

what I call

the basics

of,

you know,

human rights er er issue that others just take for granted,

but also.

Some of the equipment,

I would say,

lack of co-production in the design.

Um,

and supply,

um,

uh,

too often equipment is chosen

for me as a disabled person,

rather than with me.

You know,

um,

er,

someone's making a decision how I should live

or my style

of,

you know,

might not fit in

into their preconceived idea of that ideal

disabled person,

so one size fits all.

You know,

and I,

um,

hopefully break that stereotype,

you know,

um,

of,

um,

of,

of that also,

um.

Uh,

understanding what,

uh,

interdependency.

Often more people talk about

doing more for yourself,

and it's not necessarily doing more for yourself,

cause none of us

are independent.

And what I mean by that,

we all need someone in our lives

who will have skills and knowledge

that will help and support us to live

an independent life.

You know,

so,

um,

that,

um,

is in sometimes,

um,

I know for um.

For some,

er er when we have to,

er if we don't meet the financial

criteria.

There's a cost barrier

to some of the er er equipment that I need.

Um,

and that can,

er,

and not necessarily met in personal budgets or direct payments,

um,

you know,

uh,

and it,

it,

it means that,

um,

to give us choice,

but sometimes it doesn't stretch

enough

to give us,

you know,

real choice and control,

you know,

cause it's

financially based

and

um we're in a time where finance,

uh,

you know,

is.

Well,

we're being told,

especially for the most marginalised people in society,

it's,

you know,

cost,

and they're looking about cost savings.

So,

you know,

we can feel like a um a number,

but also there's a limited access to some of the

um smart um home solutions,

you know,

many smart technology like um

automated

door openers.

Um,

or curtain closers,

they're not necessarily

on.

As a,

you know,

uh as a um.

Uh,

uh,

a support technology

to people,

you know,

and there's different,

you know,

I find that

more through,

um,

Speaking to other peer

er er disabled people,

oh you can get this er er er stuff,

you know,

I've learned through that,

you know,

from peer support,

um,

from disabled people,

um,

also I would say,

um,

Uh,

NHS and local authority,

you know,

the funding

issue,

you know,

uh,

means disabled people either go without

or pay out of pockets,

uh,

for equipment,

which is fundamentally

needed er for human rights,

in my opinion.

So you picked up on so many things there,

so interesting listening to the different topics that you brought up.

I think the first thing you said was about

like design and how a lot of the times the equipment that

you

bring into your home,

your space,

it looks like something out of like a hospital ward or like quite like clinical.

So,

how do you think

you could get around that?

Like,

what,

what do you think a solution to that could be in terms of

Making it more catered to your style and what

you want in your space and your living environment.

Uh,

this is where co-production,

I feel that

cos um.

If we could do

more within that space

um co-producing with people,

they will tell you what they need

and what that style might er er er look like,

you know,

and a classic would be

um how I got my shower room

done.

Yeah.

And and when they first came,

the er the choice I had was what.

And that was it.

And that was it,

and I said,

but it doesn't fit in.

With

what you can see.

So uh it was

um a lot of my time was

arguing with them saying,

why can't it,

I have a choice

in the colour it should be.

Surely

if you're putting something in

and you want more use,

people to use it.

I don't really wanna use it and they say well you should be grateful,

you know,

and I'm like.

I kind of,

yes,

I am grateful,

but surely it should meet my needs.

Yeah.

Uh,

you know,

so,

you know,

for me,

co-production and listening to,

uh,

what people want,

uh,

and shape

it to their needs.

Yeah,

I think it comes back to what you were saying before about like,

independence and choice over your own life.

Like,

why

shouldn't you be able to have whatever colour bathrome you're on,

like,

what,

what's the problem?

Absolutely.

It's a bit like one of the examples I said to him,

I know you think

I'm,

I'm being fussy over the colour,

I says,

but if I came to your house and I said to you,

um,

for your dinner.

You've got no choice.

I'm telling you you're having baked beans on toast.

How would you feel?

Well,

I like baked beans on toast,

but

I won't want it every night,

and I've got a absolutely hates them.

So that would be a bit more.

Absolutely,

and for me,

I don't like baked beans on toast,

you know,

and like you said,

some people would like it,

but

it wouldn't it be better that we have this conversation

to find out,

uh,

you know,

our likes,

uh,

you know,

our hopes and our dreams of

what that space

could look like.

That that is

a massive part of life as well,

isn't it?

Like having.

Your home reflecting who you are as a person and your individuality,

like.

Absolutely,

you know,

I don't want

a house,

I want a home.

And there's a difference

in,

in that uh for me,

so surely

um in my home,

I should be able to shape

what that looks like and feels like.

That's just.

Uh,

for me,

a given.

Definitely.

And so you mentioned co-production there,

so reflecting back on some of the other points,

I think you mentioned

the

difficulties with getting equipment repaired,

so like

you

initially it's.

Really helpful to get these pieces of equipment

in your life,

but when it comes to

Getting things repaired,

cause things break,

things need repairing,

what's that process like?

Oh it's uh

it's um mind numbing,

if I'm,

if I'm gonna be

er er honest that um

the

procedure that you have to follow,

uh,

you let them know,

they tell you

it's been sorted,

but no one,

but

how long the piece,

you know,

you don't

really know and it's.

It's a long time,

especially if you need a piece

of equipment

that you use every day.

You know,

someone might say,

well,

it's gonna take 8 weeks,

12 weeks.

That's a lifetime away er er er er for uh for me

and many others,

you know,

it needs to be,

in my opinion,

responsive.

You know,

and flexible to,

uh,

the person's needs,

it should be like,

if I wanted anything from

uh Amazon,

I can have it

within

24,

you know,

the next day delivery.

Yeah.

I don't understand

why er

you know,

certain things aren't um equipment,

just to get an assessment.

Can take ages to get that er equipment,

you know,

and,

um,

it's just

more awareness

about um it's,

you know,

it's not just about,

Numbers and and and needs between behind each number

and needs,

is a person,

is a person who's trying to live their life.

you know,

well.

You know,

not just surviving

or existing,

they're trying to live their life well,

and that piece of equipment might be a piece of equipment to you,

it's an enabler.

You know,

and it's that

needs to be um that's like right equipment,

right time.

He's really important,

they're not just slogans

to me.

Mhm.

Well,

and

so you said you wheelchair is a,

you a wheelchair user,

it's a big part of how you get around day to day and get your independence.

If.

In terms of like getting repairs to your wheelchair,

is it,

is the approach like

responsive so when something happens,

you'll have to

wait to get it fixed,

or is there,

is there a way where

you're offered like,

You know,

like an MOT that you'd get on a car,

you go and get it checked

once every so often just to,

to keep tabs on what needs

changing,

what needs fixing.

I to pay for that.

OK,

OK.

I have to pay for that,

you know,

um,

I have to pay for that,

um,

I have to take out insurance.

uh,

and it cos,

um,

it should be as responsive as,

you know,

the RAC.

You know,

the RAC,

if your

car broke down,

you should be able to,

uh,

but not for wheelchair services.

It takes ages.

I and broke down

last year,

uh,

December

in December,

and then I and then broke down in the middle of uh a shopping centre in Birmingham.

Uh,

I phoned the other and they said um

they couldn't come out.

To me,

till 2 weeks.

Wow.

So you essentially in their brains,

you're stuck in the shopping centre for 2 weeks.

Absolutely,

and I said,

so what am I supposed to do?

And if it wasn't for the er the shop,

the shopping centre borrowed me the chair,

you know,

a manual chair for uh my PA to get me

into the vehicle,

we took

the er um.

The chair back uh to the manual chair back to the

uh supermarket.

Yeah,

so I could get home,

but I was then stuck

in my own home for two weeks.

Yeah.

Cause I couldn't

uh uh uh I didn't have a an electric chair.

These are

some of the everyday issues that

uh uh wheelchair users have about,

you know,

um,

you know,

just.

It's not responsive,

you know,

and er and I suppose

um.

A lot of people don't see that in their,

in their life,

and they wouldn't,

they would think.

There was something responsive like

RAC or er you know,

breakdown service,

but it's,

it's not.

And

Just reflecting on some of the other things that you spoke about.

So,

I think

cost like you

mentioned.

That's a big

factor in terms of.

The cost that you've got to fork out for yourself out of your own pocket.

And

obviously that brings up.

Loads of issues in terms of.

Inequality and what people have access to in their own personal lives.

So,

yeah,

could you reflect a little bit more on that and how that impacts what?

Equipment you have access to.

Yeah,

it,

it does because the uh um

the costing now er

now certain equip uh because of disability or impairment or health conditions,

there seems to be

an extra cost

to that,

to having a disability.

Now if you are

um if you can

access,

you know,

public er er funding.

You get a kind of basic

level

of,

you know,

which I would call more clinical

looking equipment.

Yeah.

You know,

if you can afford

a different,

you will go and buy,

you know,

like a self funder by certain things to adapt

to your environment,

cos you

might have that um you know,

uh access to

to that money.

So we've got a growing

inequality gap.

You know,

all based on whether you've got

money

or you haven't.

Now to me,

that's not equity.

You know,

and that's not fair.

You know,

and that's some of the

inequalities within the,

in the system

and

other inequalities.

If you think of um

disabled people who can

access PIP

and might get the Motability part of PIP.

For a car

You know,

um,

Some people,

uh,

within that,

you might need to um

get um hoist

er er elements of

your,

your car,

but if you're working,

you can

access that

from access to work,

but if you're not,

you've got to pay it yourself.

So there's a

inequity in the sys in the system.

You know,

and,

um,

and that's what disabled people are constantly

dealing with

in their life.

Yeah,

um,

what,

like,

disabled people,

the constant battle that you talked about there,

like,

the things that people are dealing with,

what,

what kind of impact does that have

on you and like your well-being and

what your life is like day to day.

It has a massive um.

Implications on your wellbeing because

er er stress has a big

factor,

uh you know,

because you're constantly

fighting to

er er to prove that

you are somebody,

you're visible to a

to a system that sometimes

doesn't feel compassionate,

you know,

or doesn't show any empathy to your position,

you then become more of a number.

You know,

just data on a spreadsheet

or a number

that they er reference you

um but by,

but not as a human being

who has aspirations,

hopes,

dreams of,

Just being part of society.

You know,

doing the things that most people take for granted.

I don't think it's quite um.

Understood.

You know,

and,

um,

that's,

you know,

for me,

some of that is,

um,

awareness raising,

education,

um,

and,

and also what type of society.

We want,

we need that conversation more and I think

um.

Personal stories.

Can evidence that,

but it's also about um

you

the solution

of what needs to change,

you know,

for me,

I've talked about red tape.

um faster,

more person centred,

er er er access

to assessment should be quicker,

uh,

designed around the individual actual life,

not just the

tick boxer uh

exercise.

Posted By

Author

Georgia Davenport

Post date

17/02/2025