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Report transcript in: Equipment Matters Short Film
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Equipment Matters Short Film
Please Report the Errrors?
Community equipment is built into every part of my day,
quietly turning what would once have been exhausting or even impossible
tasks into things I can now do with confidence and dignity.
The first thing I reach for each morning is to pull up bed frame.
It's a sturdy bar fixed beside the mattress that lets me leaving myself
upright without twisting my back or putting all my weight through my legs.
Disabled people aren't a monolith or
a
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.
In the last year,
I've been looking after
my male friend who's 6'3.
He's got motor neuron disease.
And none of the equipment that's been supplied by the NHS fits him.
It started off,
um,
when his mobility
got worse,
and he was on crutches which did fit him.
So,
you know,
that was the one thing that fitted.
Um,
as soon as he needed to move on to a walking trolley with uh,
with wheels,
the handles were about 3 inches too low.
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.
When we talk about equipment,
equipment
for means to me,
and added to independent Liddy.
Mm,
and that's what equipment
uh should do
to enable me to live
a life,
and I include
in that assisted
technology,
assisted
technology,
um,
And and
And equipment
are just.
And nice to have,
if that makes
uh uh sense,
um,
they are fundamental enablers
and for.
Uh,
dignity,
choice,
control in my life and the lives of so many of us,
when we talk about
equipment.
And for me,
equipment is,
isn't about convenience,
it's about independence and
participation.
You can see some of the stuff that happened
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.
I have something called a sliding sheet,
so that just helps you to literally slide when you're
transferring and I use it on a on a.
Well,
I've got,
um,
it's a banana board or whatever you might want to call it,
um,
onto the bed.
And I just thought it was time to replace it.
So that process,
again,
is a,
is a bit stupid.
So I,
that one is through the district nurse.
And I have a district nurse out every 6 weeks to help me with changing catheters.
So I asked her two catheter changes ago
to order the sliding sheet,
and I didn't get it,
so that would have been like 14 weeks ago.
And I,
I didn't follow it up.
It wasn't urgent.
It was to make sure I had an extra one to replace one that was
going home.
And then I suddenly dawned on me that nothing had happened.
So I rang up the,
um,
disunity district nurse office,
got through first time,
which is,
um,
you know,
and they answered quickly.
I spoke to somebody
who'd said,
Even the admin,
he said he'd get one of the district nurses
uh to sort it out for me as I thought,
oh,
OK,
so she then phoned me back within half an hour,
which.
Um,
which,
which was pretty good.
And she then wanted to check with me,
and I had one on the radiator so I could reach it,
cause obviously,
I can't necessarily reach anything it had
a code on it,
on the back,
which didn't tally cause it's probably too old with what was on her,
uh,
old thing.
And then she asked for the size,
which was fine,
it was there.
And she obviously ordered it,
and then 2 days later,
it was delivered.
And it was,
I was really,
that to me was really good,
and I was quite surprised.
So obviously,
the district nurse was just busy and had forgotten to do it.
Um,
it,
it,
it might not have been.
She might have done it,
and then it got lost within
the,
the contractor.
So that one worked well.
Well I was talking to a friend who said,
well,
what happens in the Netherlands,
cause everybody's over 6 ft,
you know,
do they have bigger beds?
And I kind of think,
well,
do they have bigger beds,
and if they do,
why can't we have them
in Britain?
My youngest son.
Um,
He's has got special needs,
and he uses,
he has orthotics,
orthotically made purpose made shoes.
Oh yes,
yes.
Now those are limited as well,
very,
very limited
in
style,
design,
whatever.
Now I managed to find.
A company that were making these shoes for the NHS.
And
it took me so long to get these NH shoes that I went straight to source,
right?
And we were talking and
the lady says,
Joshua,
but what sort of shoes?
And he said,
Batman shoes.
They made him.
Some
black shoes with a bit of yellow,
was it that man with the yellow,
yeah,
yeah.
And like,
and then got motives.
Oh,
and stuck them on the chute.
And this then went to.
This man went to the NHS because
by the time that they were doing this.
The appointment for the NHS came through and they were like,
how did you manage to get these?
His self-esteem,
you know,
he was,
he,
he sort of,
his shoulders went up and look at me,
I mean these,
you know,
and.
And he was taking photos of his shoes and sending it to everybody and anybody.
I've helped co-design some of my solutions,
you know,
and,
uh,
uh,
and like I say,
one of the best
experiences was uh when I'm working with
an occupational therapist,
you know,
um,
uh,
who actually listened instead of giving me
what they thought I needed.
Yeah,
they asked me about my daily routines,
my work,
er,
my aspirations,
you know,
uh,
and the,
the result
was that,
um,
they then
looked with cod juice the step
that cheeser actually made a difference in my life.
So,
um,
that was
good and also.
When
technology um
that evolves with me.
So in the beginning,
I was
very.
Um,
resistant to using equipment cause
it made me,
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,
Kurth beaters.
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,
or 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.
Some of the things.
That
I think to painful and loyd 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.
So I'm married.
How do you think me and my husband are gonna both sleep in a hospital bed?
Like
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
It's really useful but can.
Often be a little bit of a barrier as well.
When 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 find
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,
if I'm sitting,
if I get,
so I go into a meeting
and I need to put my 6 somewhere
and
because they have butt handles.
Uh,
they,
they don't hook.
Yeah.
Yeah.
So
I,
I,
therefore carefully balance them on a wall and somebody knocks them.
So I spend my entire life,
um,
with my sticks,
um,
falling to the ground and somebody needing to pick
them up cause I still can't bend down.
So
that,
and that is a major design fault,
I think,
and.
Um,
in the,
in the sticks.
And my daughter has this had
had cancer and has cancer
and she
needed a stick for balance after her femo,
and it was in America and it's a nice curved handle.
Right?
So,
so much easier cause you can hook them everywhere.
They stay stable.
And,
and there's an assumption with the sticks,
I think that you
You only use them,
that that that is your life using those sticks and and while you're doing that,
they're fine.
And,
but if you,
if you try and do anything else,
I mean,
shopping,
it is the case in point time,
push a shopping trolley.
I therefore don't need a stick.
But I need a stick to go and get the shopping trolley and take it back again.
And,
uh,
and they don't hook onto the trolley.
Yeah.
Yeah,
they are,
that's my only complaint is,
is the design is the design of the handball.
I'm a healthcare professional.
I worked as a nurse kind of on my whole work life.
Um
And,
um,
I have been really shocked at the
kind of lack of provision which and
and actually trying to find somebody to take this seriously because I've
written to West Street I've I live actually live in Scotland.
I've written to Neil grey.
Written to the MPs.
Um,
and it was only one I found,
um,
Angela's
name on,
on the Mediu website that I
got anywhere because everyone,
you know,
everyone's just either not responded at all or said,
this isn't my problem.
It's a,
you know,
health authority or,
you know.
Providers
thing.
And I really don't think it,
I think,
um,
I,
I've got another friend who looked after
an M and uh,
you know,
somebody with MND
in a different county.
And I,
and I was talking to him and he said,
we've had exactly the same problems.
And it's,
you know,
the equipment that is produced by Leicestershire can't
cross a border into Derbyshire or vice versa.
And that is just mad.
Because
if you knew that you had a trolley that
would fit somebody that was 6'4,
and it was,
you know,
1 mile down the road because you're on the border,
as we are in Leicestershire,
we cross 4 borders and you can't get it across to them because what?
It's
because of red tape.
Yeah,
so much,
it would have really it would have really changed our lives to have had.
I mean,
the thing that would change
my friend's
life would be to have a bed that he could actually
sit in comfortably and lie down or uncomfortably.
And that seems,
you know,
you can't,
you can't actually even buy one privately because we have looked to see it.
There's a way of
just making it
possible.
And he would,
you know,
be able to fund that,
but it just doesn't exist.
They shrink the routine obstacles so I can focus on the bigger goals.
Perhaps the greatest impact is psychological.
Every device,
however,
small,
tells me you can do this on your own terms.
That message feeds resonance and keeps me engaged in my
own recovery instead of feeling like a passive patient.
In short,
community equipment
doesn't just make daily living possible,
it turns daily living into living fully.
With a few carefully chosen supports,
a bed pull up,
a walking frame,
raised seating and a steady handrail,
I've exchanged
dependence for control,
fear for safety and limitation for opportunity.
It's helped me
getting about getting about the house
and getting upstairs and
and just
generally making me confident that I can walk about.
And what,
and why is that important?
What,
what does,
what impact does that have on your life,
feeling like you're
able to get about and you're more confident in,
in moving around?
What
different does that have on your life every day?
I'd,
I'd rather,
I'd rather
be out and be my normal self
this than this.
Uh,
than using the all this equipment,
but at the time I'm
very appreciative of it.
And actually there's something really important about.
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.
Who is,
uh,
I'm
grateful when they
use that because
I feel I'm a bit too much
for the poor little carers to
try and help me
in and out of bed and
whatnot.
Well yeah,
and you,
you're not feeling as strong as you were.
So you can't help yourself as much.
No,
not very much.
um I don't do anything,
hardly
myself.
That uh gave me greater
uh
uh support and enabled me and made me feel
less frustrated if that makes,
uh seats,
which in turn
gave me more.
Energy to focus on
what really matters,
you know,
and,
you know,
kicking head.
And she's still talking to other
uh disabled people
about
their experiences
on how they use the equipment and
and and then go.
I mean obviously you could do that.
and that's why I think part of that
should be part of the solution.
So,
I think,
for me,
equipment
matters because people matter.
And many more people could benefit from it
if
they have those conversations.
Cause I think it would be,
you know,
useful.
I don't know what,
if they may have,
uh,
a group of people who draw on care and support,
who use community equipment
that are involved.
Um,
cause it's important to give that feedback.
But what I really,
really wish is I wish that more companies.
Whatever you're making.
Would think more about accessibility,
usability,
accessibility.
In fact,
I wouldn't even call it accessibility.
If they're making products,
and it could be something simple
or something complicated.
I think let's
call it inclusive design for everybody
from the outset.
And when I say inclusive design,
I also mean accessibility.
Whether it's uh using a synthetic voice or braille,
or both.
Mhm.
I think that's,
that's really,
really crucial.
I mean,
for example,
I love,
um,
a lot of nice aftershaves and toilettes and aftershave balms and stuff like that.
Now
there is a French company and they've got a few outlets in London or
or you can get their stuff from John Lewis and Amazon called Oxitan.
Oxitan en Provence.
And now what they have.
As part of the
Design
of the box.
Is they actually have
the name
of the aftershave or perfume or or the toilette,
shower gel,
etc.
They have it in braille as part of the design of the box.
OK.
It's not something I actually added on,
it's there.
It's standard of the exactly.
Yeah.
And that I think it,
that is just so.
So sensible.
Yeah.
In this day and age where we are.
Saying that everything is to be personalised.
Yeah.
Why can't we personalise some of the equipment that we're having to use?
Just ask for help
with equipment that could make a difference,
um,
to you on a daily basis.
Uh,
we all know that tech is out there,
but it's not all about tech,
it's about the practical,
very small things.
Even down to,
um,
I have problems with my hands,
you get a stand for your kettle,
things like that.
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