Report transcript in: Equipments Matters Because People Matter

Please Report the Errrors?

Which,

which has been very um whiny and whingy today.

So I hope he doesn't disturb us.

So Isaac,

would you mind telling me about the equipment that you use,

how you use it,

and

how it helps you?

Yeah,

well I'm not sure if I use it in the right way,

but I'll give it a go.

So I'm I,

I live in East London

and

I use a lot of equipment because I live in

chronic pain.

A lot of people know that I talk about my mental health more than I

do my pay cos it's something that I don't feel as comfortable talking about.

what equipment do I have?

Lots of equipment,

so I have like a perching stool.

Which

something I can just use to kind of,

um,

do everyday things like cooking.

Um,

and it just

means

that I don't have to stand and get

really fatigued or be in pain whilst doing stuff.

I have a shower stol,

um,

which

just means the same thing,

I suppose.

Um,

And

for toilet raiser,

because toilets are always too low.

I don't know why they make them so low.

Um,

but I do have a toilet,

toilet razor,

so the seat is higher.

And

then I have,

I have lots of equipment thinking about it,

just different things.

So adjustable bed.

Um,

which is great.

And

I used to have like a hospital bed,

but now I have an adjustable bed because somebody,

um,

gave it to me.

It's cost thousands and thousands of pounds.

Um,

so it's like,

bends to your body sort of thing.

So it means you can get a really nice,

comfortable sleep.

Um,

Grab rails,

all sorts of things just to make like living a little bit more

easier.

And um

Do they make life easier?

I mean,

is there anything where you think

it is actually a challenge to use the equipment?

So in the beginning,

I was

very.

Um,

resistant to using equipment cause it,

it made me.

And I suppose there was lots of stigma around using equipment.

It made me feel

like,

one,

my home became like an institution.

And you know me,

Kurt Peters.

I do love a bit of home furnishings,

and I don't like,

um,

white,

and I certainly don't like brown.

Um,

so.

I was a bit resistant,

but it does make my life a lot easier.

It makes

doing the things that.

Everyone has to do,

everyone has to

eat at the end of the day.

Well most people eat at the end of the day,

finish work,

have something to eat.

And just things that you said,

like,

feel like,

oh my God,

I'll get to the end of the day,

and then I've got another mountain to climb,

which would be to make a meal,

etc.

feel a bit more easier.

Um,

I think a lot of

the time

I've had to find things along the way,

not necessarily knowing what would make a difference.

Um,

and

some of the things.

That have

That's been painful and annoyed me

is there have been arguments about

the cost of equipment

from the local authority,

so they,

and it really annoyed me.

So I had a hospital bed.

It's like,

I'm married.

How do you think me and my husband are gonna both sleep in a hospital bed?

they were not having it.

um,

and

then

I was fortunate that somebody

who had a double

bed that did the same thing,

gave it to me,

so I was really lucky.

And I think often.

Equipment

Is really useful but can.

Often be a little bit of a barrier as well.

Yeah,

I can see that.

I mean,

that must be really difficult that.

Not to consider.

You know,

that someone

has a partner that you've,

you got,

you know,

have a partner and it's just,

you want to carry on your life as

as a as a married couple.

You know,

it's just,

yeah,

it's.

It sounds simple,

yeah,

you just think that people would think that wouldn't you,

kind of like.

It's not considered,

is it at all?

No,

and you don't ever get to meet the people that make these decisions.

So people make decisions about

what equipment's available locally.

There's a catalogue,

um,

there'll be a,

an assessment.

And I've had,

like,

different experiences,

some positive experiences of assessments,

some

not so positive.

I worked with a lovely occupational therapist that recommended all this stuff.

And I felt like really sad because she,

what she recommended

was outside of what was available.

Then she had to go back and fight

the system to get it

and you think.

This is not a good thing.

This doesn't enable people to have choice control

and

live good lives.

I also think equipment

isn't

seen

like personalization sounds and feels a bit sexy,

doesn't it?

Technology sounds a bit,

oh,

it's a bit edgy.

The equipment's a bit,

oh,

yeah,

equipment,

it's not,

it doesn't have the same prominence.

I don't think the same importance is placed on it.

I think there's a lot of.

Assuming it's just for older people,

um.

And actually,

most people would never know the things that I have to do

to just have like a day that is just relatively

like yours.

Um,

and

something like,

for instance,

if I'm in a really

bad space,

and I would say bad space with my fatigue,

having a commode,

like,

that probably costs,

I don't know,

30,

40,

50 quid.

Has meant I haven't had to move from my house.

And I remember this one person saying,

why don't you just move to a more accessible place?

And I was thinking,

why?

I love where I live.

I love the people around here.

I've got a great support network.

And

no,

um,

it just isn't something that I wanna do.

So I think

for me,

equipment matters because people matter.

And many more people could benefit from it

they have those conversations.

That's great.

Is it,

thank you.

Is there anything where you see

um.

Any improvements?

I mean,

you've talked about improvement in terms of personalization.

But are there any sort of improvements,

say,

for example,

the equipment that you have.

Is there anything where you go,

I just wish it did this,

or I just

wish it did that?

Some of it is a bit

hospital social care y,

and I wish

I open up these lovely books and don't ask me how I've gotten

to these lists where I get these magazines that come through the door.

So I,

I know self-unders.

And people with a bit more money than I do

can access

the same stuff,

but it just looks like everyday.

Stuff,

you wouldn't know it was like a

inclining chair,

or you wouldn't know it was,

had the same functionality as a hospital bed,

and actually there's something really important about

not

having a home that looks like a hospital,

something important about,

And I often talk about the environment for me is like really important.

So,

like,

softness is really important.

Things blending into

the

kind of everyday environment,

but also

that it has to be really practical and it has to be,

like,

really.

Functional or if that's even a word,

like there's no point having something that

looks good.

And

something that,

um,

doesn't work.

And actually,

what I realised is that you can get both of them.

They just cost a lot more.

Um,

so we don't get the option,

we often get,

um,

the option of,

like,

the basic.

And now,

the basic sometimes is a bit

colder,

um,

the texture's not quite right,

it's a one size fits all approach.

And we aren't all the same people.

Um,

and what might work for you,

might not work for me.

And

I wish there was much more of an investment into,

or kind of thinking around

how do we support individuals to get what they need around equipment,

rather than having,

and it is a catalogue,

like,

this is a catalogue,

this is what we're gonna choose.

And I think commissioners of equipment

need to have groups of people that inform what they put onto the catalogue.

Um,

then equipment providers,

if they're

in-house or external providers need to offer a wide range of,

um,

equipment.

And then

back to the manufacturers,

they need to do better at involving people with lived experience in designing,

testing,

um,

equipment.

And you can see some of the stuff that happens

in other places in the world where you think.

Wow,

like that's so different from what we have here.

Um,

I think

there's more opportunity to start to have those conversations,

um,

because

I think

now.

We have lots of disabled people living longer,

lots of people

getting older,

lots of people that might need equipment,

and I think people.

Are starting to think about it

as much as

or should be thinking about it as much as personalization or tech.

OK.

That's great,

thank you.

Really summed it up,

nailed it,

I'd say,

yeah.

OK.

Any other questions?

Not really,

I don't think so.

I think that's.

I think that's it.

Talked about the challenges,

you've talked about how it could be improved.

I think it's really good the points that you put in there about

co-designing.

You know,

co-designing it with people who,

you know,

disabled people

so that

they can get it right,

you know,

rather than it being some able-bodied person sort of trying to.

But also it's like

in no other

design process

would you not involve the very people

that

are

gonna benefit from

the,

the product.

But somehow in,

you know,

are they really involving people?

So I talk about like a commissioning triangle,

so you have

those that purchase,

those that

will manufacture

or provide,

and then those that

are gonna benefit from it.

Like they have to be equal partners and work together

to ensure equipment meets the needs of many different people

and disabled people aren't a monolith or

Homogeneous group of people,

like we're different,

we're different shapes and sizes,

we like different things,

we have different needs

and what might be right for you might not be right for me.

And sometimes the clinical arguments used and I'm like,

yeah,

I understand there's a clinical element to some of this stuff.

But there's a human element as well,

so the human and clinical together

can really make a difference.

And I don't think one is

more or less important,

but always the clinical and the cost argument,

um,

I think win.

Yeah.

So,

nothing about us without us.

Equipment matters because people matter.

And

just think of yourselves

as the next or the waiting generation of equipment users.

Um,

and I say users or people who will use equipment to live

coordinary ordinary lives are gonna be UCAF,

are gonna be the people watching this film.

So don't think about it as someone else's problem.

All of our problem.

Yeah,

yeah,

absolutely,

absolutely.

And it is just about like that living your ordinary life,

isn't it?

Yeah.

Just like getting being able to,

you know,

go to the shop and buy something,

be able to get into a car and out of a car,

you know,

or on a bus or off a bus,

walk down the street,

you know,

those things that keep

people independent,

keep people.

In control of their lives,

keep people.

You know,

they're well being good.

It's not,

you know,

it is,

it's so important.

For instance,

I think

no one would say,

not,

no one would ever say

take away someone's wheelchair.

No,

don't give them a wheelchair.

That's gonna be,

you know,

it's something that I'm not gonna benefit from,

but I have heard arguments,

do people really need that,

or is that gonna,

and I'm like.

If something helps someone to live independently as possible,

why not?

To,

like,

the expectations of

disabled people.

Have to and have changed.

Like,

we,

we don't,

we aren't like in institutions,

we are living in our own homes.

We are

wanting to do everything that everyone else does.

And something as simple as.

It gets to 5 o'clock,

and you know like we work together so you know like I

fidget a lot,

I'm often really tired,

all that kind of gets to 5 o'clock.

Do I just stop having a life at 5 o'clock,

or do I just use a perching stool

to have a bit more of a,

a life?

And

that

would make sense to anybody.

Like,

I think.

Um,

and I hope

that people can see

themselves

in the future

being

someone that would use equipment,

because if they were,

and they were thinking about it in that way,

they would want the best.

They wouldn't want.

The worst

Absolutely.

Thank you.

I'm gonna stop recording now.

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Posted By

Author

Kath

Post date

11/02/2025