Equipments Matters Because People Matter

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. So what equipment do I have? Lots of equipment, so I have like a perching stool. Which is 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? 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 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 if 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, I, I. 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, or 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 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

Yeah. Yeah. 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..