Jennifer's Story

Comput Hi Jennifer. Hi Kam. Nice to see you today. um

So we're gonna talk a bit about community equipment and um, what it means to you. Um, firstly, really, about. Do you use community equipment? Yes, I use an awful lot

You can see in my background that there's a piece of equipment just behind me. That's my standing frame. Um, and that enables me to stand every day

So it's a vital piece of equipment for me. But I use lots of a community equipment. I've got lots around the house, but that's the one you can see

Yeah. OK. And that is a vital

It's vital because to be able to stand, um, it's good for my blood circulation, my bone density, my, um, digestive system, my breathing, my mental health, my well-being. So it's, it's, it's essential. Yeah

Great. And how did, how easy was it for you to access community equipment? Well, it, it's variable. So some I mean some things have been really good, other things have not been

So with the, with the standing frame, I've had it a number of years, it's what they call, um, a secondhand one. So obviously it was returned. It's something that's called a special

So that's where the. Problems always lies with the specials. And, um, I've had a huge number, not recently, but over the years, I've had a huge number of problems with the standing frame

It was delivered to me, and I knew nothing then about standing frames. It was delivered to me with somebody who had one leg shorter than the other. And, um, so I've been using it for a number of years until I needed a repair

Um, so my hips were obviously wonky because the person had one leg shorter than the other. And, um, the physiotherapist who came to, to show me how to use it, etc. didn't know that

And obviously, it should have been serviced, and they didn't want to pay for it when I, when I got it. And it's only when something broke. Um, and with that, I got so fed up with waiting, um, I can show you, it's probably easier to explain

Um, there's a strap on it. Um, you probably can't see it from there. But you didn't cut the strap is individual

Um. But this is the sort of, it's a hoist, really. Yeah

Yeah, that crap, um, I, to start with, it didn't, it didn't come with one. So I had the machine and I wasn't able to use it. And it had to go through panel to get this strap

And then, and I was going mad about it. So I, and I happened to have 2 weeks rehabilitation at the spinal unit. And they told me that I could just buy one, tailor made to me with what I needed, which includes just sort of padding, which I didn't know, so you don't get pressure sore

And so I just bought it and got it really quickly, um, and sort of gave up with that process because it was just too, now it works as a separate company that, that, um. Um, services it cause they weren't servicing it. And I didn't get, and obviously, there's a lot of components, and you don't want to be stuck with it

So it's, um, now serviced every year. I've got a sticker on the top. So, but it's a process to get it serviced

So I have to then, um, get in touch with the specialist physiotherapist at the neurological rehab centre. They then have to raise an order. Um, with, uh, I if he has to go to pan or not, with, with the, the company that's got the community equipment, and then they raise an order with the specialist provider

And then eventually, the specialist provider is the same man who comes every year, will get the order to come out. Then if he needs to order a separate part, like this, for example, the strap needed to be replaced or wheels or something, he then has to go through a process before it's, um, delivered, you know, I needed. It's years old and it was secondhand to me

I needed new wheels or new, you know, things need replacing. Yeah. So it is quite a process

It sounds quite Lengthy process and quite. Um, It sounds to me like there's not one person you could speak to about it. Well, I could speak to the man who owns the company who comes out to service it, but there's nothing you can do without all these order numbers

So it's a really lengthy process. It's the same sort of process with the intercom that I've got, um, which I originally had when I came first, I didn't know, I needed these things, cause I didn't know anything about anything. And they put in an intercom

And, and it's, I suppose it's 13, well, it's actually today's 13 years since I went into hospital and first came on well. So it's sort of, um, bit of a poignant day. But I'm just looking there

I've got an intercom. It's very old fashioned because that's what 13 years ago, however long ago it was, that's what they look like. And now, obviously, you've got Um, tech has moved on vastly, but I can't get it changed, um, unless I was prepared to pay for that myself

And it does the job. And something like the ring doorbell doesn't do the job that I need. So the ring doorbell won't open the door

This will actually open the door and allow someone in. Right. But it won't allow me, it will allow me to talk to them, but it won't allow me to see them

Right, OK, yeah, yeah. That hasn't improved as such, but it, it does the job and it's not something I. And is that, is that part of the service then, is the intercom part of community equipment service, yeah

Yes, but it probably is, yes, it is. Yeah. So would you, would you think that

So you get a piece of equipment, but it's not followed up. There's no, like. Well, that is serviced every year

Um, but the standing frame I've had to nag about, and it's only because I have arranged it, um, that it's done like that. And last time it worked, um, there's a new contractor in where I live. It's not Medicip

It's a different con, it wasn't Mipped 3 contractors ago, if you like, in, in Barnet, so there's been. You know, there's 2 other ones. I don't want to name names necessarily

It depends on them. It depends on the contract they've got. It depends if it's a special or not

And then both the standing frame and the intercom are subcontracted va. Whether it's Mediquip or whoever else it is, they're subcontracted. Um, so that's where the problems lie when it's a special and it's subcontracted

So it's complicated. It's not just going through one process, it's going through a number of processes. Yeah

I mean, I, I, I, I, I, I can carry on with the bad examples. I think I'd give a good example. So I, um, 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. Caters

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 he was an admin. He said he'd get one of the district nurses, uh, to sort it out for me

And so 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, because obviously, I can't necessarily reach things

It had a code on it, on the back, which didn't tally because it's probably too old with what was on her, uh, order thing. And then And she asked for the size, which was fine. It was there

And she obviously ordered it, and then two 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, but 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

Um, and I was like, oh, blimey, I didn't have to chase anything up. And, and she obviously, it was just, she forgot, and then the next person who came to change the catheter, I just didn't mention it to them because it was a traumatic change. And I just, I, you know, I just thought I can't, you know, I couldn't, I, I forgot

Um, shower chair. That's been very, very problematic. Um, twice, I think I've had it changed in the last few years when I, so I've got a special shower chair, um, to, to shower, to go to the loo with

And it's extra padded, and it has a right opening, opposed to most have a front opening. Um, and because it's a special, It has to go to panel, then it goes to a specialist company where apparently it's handmade, the padding bit. The rest is standard

And the last time I changed it must have been, I'm coming up to thinking, oh, I've got to change it again. Um, or, or at least change bits of it. And I just think, oh, no, no, I can't go through with that again

And so I have to get an OT to come out, even though I'm replacing like with like, um, so that they can check, and that obviously takes some time and this. It might be one from the council or it could be one from the neurological rehab centre and they change who does what. Right

So that's not straightforward to find out, and then they have a waiting list. And then they have to then put in a request to the panel because it's a special, it's not on the list. And somewhere between them putting in the request and it going through the Medi-quip or whoever it is who's got the contract, and then through to the manufacturer, things get lost

So I had the same, the padded bit of the seat delivered maybe 3 times of the wrong bits or the wrong. And it went on and on and on, and The first time that happened, I was starting to get a bit of a sore on my, um, backside. And quite honestly, the amount of time and effort, and the number of staff that came out, and the company who manufactured the thing, it would have been cheaper if they just listened to me in the first place, just ordered like for like, which is what I wanted

And, you know, I, I used The example, I, I spoke about it in front of, um, I think it was 3 chief executives ago of Care Quality Commission, uh, when did his retirement do about, you know, the stupidity of the system. At least now CQC do inspect, um, the whole council. So they, you know, community equipment presumably is one of those things under that umbrella

But at least now they can do that, whereas before they didn't have that power. Um, but it was ridiculous. And the cost to me, emotional time, you know, it didn't develop into a full pressure sore, but then it would have cost more to the health service, let alone what it, the impact for me

And the thought of about actually having to get anything reordered for that again. I ended up putting in a. A lawyer's letter is sort of under the, um, of being discriminated against

I did it to the company, the manufacturer, and I knew they weren't the people who had really caused the problem. It was somewhere in the chain. And by doing that, the company actually, you know, we found out where the problem was

They found out where it was. Yeah. And it's a, it's a lot of energy, isn't it? That comes from, from you to make that happen

Oh, it's huge. And I, I have got that energy. But so many people don't

And you hear the same stories over and over and over again. And it's about specials. And the specials are not that special

They're just things that are not a standard, um, piece of stock. The, the, I don't quite understand how it all works. And I think it's different in different, um, areas

And obviously, different, um, boroughs, county councils, ICBs, you know, system changes and changes have different suppliers and different stores, storerooms. Um, and I've got lots, some of it works well. I had a, um, An OT out looking at my posture

So I've got different OTs who, who, and physios from different teams, if you like. And the one who looked at my posture for my work. And she made a suggestion, because I do some of my work from the standing frame

And I'm like that, because, and so what she did was she ordered an, it's like an easel, but it's a, a, a special one. So that I'm sitting like that, and I can make my calls or do some work from that. And I, I'm sitting properly

So this easel, she She has a, had a catalogue, and then it has to go through a system. I don't know if it was a special or not. And she thought that would take ages

That one came relatively quickly. And the difference of my posture, and then, you know, she bought it for the standing frame, but I also used it then on the table behind me where I making calls. Um

And it's not computer-based, and I'll have headphones on. And, and it's just so, my posture is so much better. So things like that, you know, if you've got, you need a, obviously a good OT cause I wouldn't know or even think about things like that

And she was looking at my whole setup here. She's a, so I've got, you know, she's in a vocational OT. So she was looking at different things to, um, another OT that would be looking at your transfers or Yeah, yeah

Or, you know, and I've had one that helped me to, to get the bed. I've got a bed, profiling bed. And then they put on special bars at the side to help me turn

Um, Yeah, and do you think, you know, that having different OTs obviously are there for different reasons, but actually, like you said about the vocational one, who's more holistic, if you like, looking at the hole. Do you think something like that, like a system where you haven't got. You know, you have one OT who looks at the whole situation

Would that. Make it easier. I think it would, but they don't necessarily have the skills or the experience for that

So, for example, in the spinal unit, um, the OTs there are really specialist in spinal unit, in spinal thing. And there's one who does wheelchairs. So the, so it's, there's quite different skills

got. And then the vocational one, that's talking about work, um, at work. So it's about, it could be for someone about energy levels

Um, she put in an access to work application for me. So the setup at my desk here, um, And actually, the, the way, I don't know, I've got a specialist, um, like mouse, which, I mean, obviously, that's not from community equipment, all of this stuff. But she and, and the little bits, like the easel thing I was talking about, that is bar, um, the community equipment by, but from a specialist company that provides, um, other things, which, so they would, they, they wouldn't necessarily all know

No, all about all of the different things. Yeah, I suppose it's quite specialist each area, yeah. So it is, it gets on my nerves because I don't know, I worked out

At one of these talks, I did how many different, um, health professionals that I come into contact with. Um, and partly because of that, you, or because of my condition, you have different ones from different sections, and the, say, the ones from the spinal unit don't do work in the community. So, from the community perspective, I've got the ones from the neuro rehab centre, which is, I suppose, based 20 minutes from where I live

I, you've got the council ones that do certain things. You've got the vocational ones. You then have the physios, um, Um, and then if you're discharged from hospital, from, uh, a different hospital, you've got those ones

Some of the specialist teams I'm under, um, uh, for different things have their own OTs, which might not be community-based. They might just be in the hospital. So it's a bit, is it like you need a a a PhD in navigating the system

Yeah. Sounds very complicated. It is

And it's almost as if you need one person who's kind of your person, who then coordinates with all of those people, which doesn't happen, doesn't happen. So I'm that person. And, you know, if I asked my husband to do something like that, it's, it'd be absolutely impossible

He just, he, he just, he couldn't. So it's down to me, and I've, I was talking to a friend of mine who's also I met her years ago in, in the spinal unit when I was there. And she, she's the same

And, and she, she, you turn detective or investigator, and it, and it, community equipment is only one of those things. You know, so, I don't know. And when it works, things work, it's, it's good

And I just think, if that standing frame didn't work, I'd then have to drive to the gym at Stanmore. I'd need someone to come with me cause I couldn't get on the piece of the standing frame on my own. And it's different piece of equipment, so I'd need a sliding board to get on it

And then they've only got one in the public gym. And I just, I can't, you know, I wouldn't want to live without it because it has such huge health benefits for me. Sure

Sure. Gosh. I mean, it sounds like when it works, it's great, but when it doesn't work, it's an absolute nightmare

It is. And, and it's, and I think that's why, you know, it obviously affects your well-being, because even when things work, it's at the back of back of your mind, they're not supposed to make your wheelchair services. But that's just another one of those things

And also, you know, I've got, um, I don't know. Another thing that I've had OT input for, which is not, um, is specialist, is I, I wear a brace. That's, that's not from community equipment

So there's a multitude of different health professionals, you know, including community equipment, if you like, um, as a supplier of some of these devices that come into your, you know, and just with hospital appointments, I counted, because I just Um, was using as an illustration. So the year, last year was a good year, and I only had 25, um, hospital type things. The year before, I had close on 100 because it was a really bad year

The year before that, I had 3 hospital stays. Um, and they were all planned. Um, and that was 2 operations as well

So it, life is not straightforward. No, not at all. And without the community equipment working, I can't get in and out of bed

And, you know, I really worry if there's a power cut and there, there was due to be power cuts, I think it was the year before last. And in the end, I just thought, I'm going to be really stuck because if my bed doesn't work, I'm stuck in the bed. I can't, it will be either too high or too low, and physically

I can't then use the sliding board to get out. I'll have to. So I bought myself a battery power pack

So that, um, I've got that if any of these pieces of equipment. Not they fail, but the electric supply. So it's a whole array of things that don't make life easy

And it's, I suppose it's the everyday, it's the every minute, every hour of the day when you're reliant on that. And that may be um. The services which provide don't necessarily see that

No. And what really, really upset me on behalf of somebody else, if you like, is that, um, I have, um, domiinary care. And what I've had the same, some of the ladies that come in, they've been here almost 7 years

So, you know, we know each other on a, on a, obviously a personal basis. We don't have to discuss what's happening, you know, what needs to be done because it's such a routine. And one of the carers was very upset that a lady that she sees an elderly lady, her bed was broken, and she ended up sleeping in a chair cause the bed wasn't fixed in time

And I thought, well, she didn't. If that was me, I would have made such a stink that I'm sure it would have been done, but. And she didn't have someone to make that stink for her other than the, the carers going in

And I think in the end, they took over and made that stink to get it done. Um, and I certainly would. And the one time that my bed did break, they came out quite quickly and, and sorted it

Um, and I wasn't stuck on it. It was, uh, uh. So that, and they repaired, I think it was at a weekend and they it was the motor needed replacing

And it was done really quickly. But I don't have faith that that would happen. No

I, so would you say the sort of, when it works well, it's more of an exception? Well, I said not really, well, I don't know. I mean, I think it, it goes in blips. Right

Yeah. And I, you know, touch wood, I mean, I just say, touch wood. That it will carry on and things will work

So some of it's about equipment failing, which, you know, your car breaks down, you can't predict that. You have to deal with it. But I've got so many bits that the equivalent of the car breaking down, um

And that this, you know, like, like this, just this strap, I made sure I kept the old one. So if something goes wrong with that, at least I've got the old one, which might be a bit worn out, but it, it will do the job. I do

You know, I tend to squirrel, or maybe I shouldn't say that on here. Um, but, and that's what somebody else told me to do years ago who had a disability. So, just make sure you keep any spare parts so that if somebody, if something goes wrong, you, you know, the person hasn't gotten, you might, you might do

You might need it. Yeah. Oh, well, thank you so much, Jennifer for um sharing your um experiences with, with me and and for the project

um. I don't think. There is anything really ever to cover about it really

Um, we sort of talked about the process, we've talked a bit about the time to get it, and we've talked about the quality of it as well. Um, um. Generally, do you find the quality of it, the equipment is good? I suppose I haven't thought about it really, but I mean, I suppose it's it's fine

And I think it's a point that Isaac mentioned to me, and I don't see how it can look any better, but this is, this is essentially my dining room behind. And. I, and I've got that big piece of equipment there, um, which I haven't got any, I, it won't fit in my downstairs bedroom

So it's about the look of things and the fact that this is not really what I'd like to have in my dining room bit through room. But it, it does what it should do. But none of them look, and I think that, it also reminds me of Isaac, um, showing what he did to, to a hospital

I don't know if it was a hospital bed, but that sort of, of, of equipment bed that he did. Um, and I can't remember the term he used, and jazzed it all up and it looked beautiful. Uh, mine certainly doesn't look beautiful, and I wouldn't have an eye to do that, but they are functional things

They don't, they're not, don't add anything. Yeah, I suppose it's that. The balance of functionality and aesthetics

Um, But they function well. I mean, when they get up and, and, and which is more important to me, and I can live with them not looking, looking beautiful. But I just hope that, you know, that the, it's not just, I suppose, I hope that the, whoever commissions community equipment is, is the, uh, is your council, or it might be several councils together, that have the specification right so that they actually are specifying a high enough, um, spec

The call out times. Because I don't like having to wait in a whole day for something. Why, you know, you don't want to have a fortunately, the, the, the sliding sheet could fit through the letterbox

But otherwise, you're in between, I think, 8 and 6 p.m. or, or thereabouts

Yeah. And that's not always, you know, I've, I, I'm busy. I don't want to

I don't want to cancel my days out. And obviously, if it's your bed's broken or something like that, there's, you know, it has to be done, and the sooner the better, but. Yeah, servicing the, the call out times are a long, a long time which affects your, your day

Yeah, yeah. So it's about the sort of quality assurance of the, of the whole service. You know, how long things, time things take, what the customer service is like, you know, what people, how long people are expected to wait, how long people are expected to wait in, or, you know, all of that that goes with it, sort of

Yeah, I think the service. Yeah, and I've had some really appalling customer service where, um, I was really, really upset by one particular person who delivered. He was so unbelievably rude to me

Um, it's a long time ago. Um, but I still remember, and I know he'd been exceedingly rude and, um, to other people, because when I mentioned it to one of my lovely carers, they knew who I was talking about instantly. And the person also made some kind of really inapp

Appropriate sexual comment, um, to one of the one of my, not in front of me, it was in someone else's home, but I, I heard about it. And I did raise it with the OT. I didn't feel comfortable to raise it directly

The person obviously knows where you, you live because they're delivering to your home. Um, and it had a big impact on me. And, uh, and the other people that apparently, I, you know, it's hearsay

Um, so that makes a big impact. Yeah. And the other thing that they don't do is regularly check on equipment

You know, they do the PAT test. Um, but it, it's just checking, um, you know, to, to make sure it's still safe. So I, I do get an, you know, when the OT comes out, um, sometimes they do an annual review of everything, just to have a look and check

Yeah. Yeah. Yeah

But it and there's even the PAT tests, because the equipment hadn't come here at the same time. I haven't, it hasn't happened recently, but I had them come out 5 times. And I said, after the 2nd time, I said, Look, if you're gonna do that, please, could you do X, Y, and Z equipment at the same time? No, I said, No

The computer says no. And I said, Well, just do it. I said, I'll ring up or whatever, but please take you, you know, it's just ridiculous amount of time for you coming out 5 separate times and you wait

Yeah. And just get them all at the same time. You know, so yeah, you're servicing

Instead of, instead of having it, um, pack tested for a piece of equipment, it should be pack tested for the person. What? And then you, you look at the person and what equipment they have. And then you go and do the test for that

So it's kind of. Some methods which could just be. Made more streamlined

Yeah. And I don't know whether that's still I mean, I'm, that's historic, so I don't know if that's still the case now. Um, and I've got, I've still got, because I think two of the pieces of, well, they're from different, different suppliers check them

So it, it also gets complicated. The standing frame has an electric component. So does the, um, intercom, and so does the bed

But it's 3 different companies that will do the same thing. And so it just Yeah, yeah. So whether that's possible because it's 3 different suppliers, I really don't know

Yeah. And what would make it sit, it would, it's almost like there needs to be, yeah, it's a system in place, like a, a coordination system, which coordinates all of the equipment to the people. And then you can see

All of that in one space, but I doubt if that, that, that happens. Oh, and you just see, oh Jennifer's got this, you know, 10 pieces of equipment. Just, you know, every year, doesn't matter if one's only done, been done 6 months

So, eventually it all, you know, it's all more or less at the same, you know, 11 visit to look at all of it. Yeah. And It's probably because um it is across different

Um, Contractors, there's somebody that needs to be able to take responsibility for it, yeah, you can't, but I'm just gonna hang this back up because I mean, that's the question is, is there someone? Who's accountable? You know, for the service. And I I mean, I just phone the call centre. Yeah

Um, so I, I really don't know. Mm. Because if there was somebody who was accountable for the service, then you could have someone to actually go to or department to go to who would be responsible

But I suppose there isn't that. I don't know. And I haven't

I mean, wheelchair services. Um, I got involved and I got on a task finish group with the, um, Specification and with the actual helping with the tender process, um, because I've made a big fuss. Um, I haven't had any involvement at all in anything like that locally for anything, which so I don't know if it exists or not, but that would be quite, quite a good thing to have, um, to have local people involved

Um, so I don't know. Um, Cause I think it would be, you know, useful. I don't know what, if they may have a, a, a group of people who draw on care and support who use community equipment that are involved, um, cos it's important to give that feedback

Absolutely. Yeah. So, in terms of improvements, you would say that that would be one of the things that you would advise in terms of improving, to have a sort of local board, uh, a, a, a group of people who are local, who are able to give feedback in

Well there may be. I, I mean, I'm not if you like there may be already. I don't know

I'm not saying I'd advise it. I'm saying that maybe there is one, but I think it's a good idea to have some kind of forum, um. But there may be already

I don't know. Yeah. Well, certainly I'm not involved with it

Thank you so much Jennifer, I really appreciate it. And, and so do, so what happens? You, you edit it and put it together. What we'll do is we'll um edit it

I, I might um. Pass it back to you to have a look at, and then you can say what points you really think are very important. And you, if you wanted to, you could give me the time codes and then I can, you know, so you kind of choose, I found that quite difficult to do before, don't worry

I'll let you, you do it, no problem. And the other thing I didn't know that is, um, Isaac didn't explain to me, do I put in a claim to you? Hold on, I'll just stop recording one minute. Right, OK, yeah

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