Jen, details her experience as a caregiver for a male friend over six feet tall with motor neuron disease (MND). Jen describes the persistent and systemic inadequacies in the medical equipment provided by the NHS and its supplier, Medequip, which consistently fails to accommodate her friend’s height and physical needs. This has led to numerous challenges, safety issues, and increased physical and emotional strain on both Jen and the patient.
Initially, the only piece of equipment that fit her friend was a pair of crutches. As his condition worsened, he was given a walking trolley, but it was too short, pushing his center of gravity off balance and making mobility unsafe. Despite modifying it with help from a friend, they were forced to keep the alteration secret due to Medequip's policy against modifying equipment. Further attempts to find a better-fitting trolley failed, as advertised “tall” versions were identical to the original and just as unsuitable.
As her friend’s condition deteriorated, he moved to using a rotunda for transfers, but it too was ill-suited — the handles were too low and his size-12 feet didn’t fit properly. This made him unstable, and for five months he had to use it despite the evident risks and discomfort. Later, an Oxford Stand Aid was provided, but none of the slings fit his tall frame properly, making transfers feel unsafe. Eventually, a ceiling track hoist was installed, which offered some relief, but even then, the accompanying commode was poorly designed for his body length, making seating difficult until a tip-back model was provided. However, that too failed to support his feet due to non-adjustable footplates.
The most pressing and unresolved issue is the hospital profiling bed. Though it includes an eight-inch foot extension, it still leaves his head unsupported when he sits up and causes his feet to press painfully against the footboard due to foot drop. Requests for better extensions have been denied. Despite input from a Rolls-Royce engineer through the charity Remap offering reversible solutions, Medequip refused all modifications.
Jen expresses deep frustration at the healthcare system's inability to accommodate individuals who fall outside the "average" height range. She notes that while equipment is readily available for bariatric patients, tall individuals are effectively ignored, even though height trends are increasing. She contrasts this with healthcare systems in other countries, like the Netherlands, where taller average heights may necessitate more adaptable equipment.
Throughout the document, Jen highlights the emotional toll of these challenges, noting that her friend never complains, but the lack of proper equipment dramatically impacts his quality of life and their ability to provide dignified, safe care. Jen, a former nurse, has tried to raise awareness through MPs and direct outreach, with little success. She is determined to push for systemic changes so future patients—like her own son or other tall individuals—do not suffer the same neglect.
In conclusion, the document is a powerful, detailed critique of the NHS equipment provisioning system, underscoring the urgent need for inclusive, adjustable, and human-centered design in medical equipment.
Transcript
OK. There it is. OK. Jen, do you wanna tell me about equipment and how
Um, how it affects your life, what. OK. Um, I, since, uh, the last, in the last year, I've been looking after my male friend who's 6'3, who's got motor neurone disease
Um, and none of the equipment that has been supplied by the NHS fits him. It started off, um, when his mobility got worse, and he was given 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. Um, I actually took it apart one day to see if it could be, um, extended, and, um, he was very bothered about us doing anything to it because you sign a thing with Mediqui to say that you won't, um, alter the. You know, the equipment
Um, and he looked online and bought another trolley which claimed to be suitable for people up to 6'4. But surprise, surprise, it was exactly the same as the original trolley, except that actually it was worse because it didn't have a longer stem going into the trolley. So we went back to the original trolley and actually one of his friends did drill another hole, which made it
An inch higher, still wasn't high enough, but it was better because his centre of gravity was kind of pushed off. Um, because we weren't allowed to tell me quip that we'd altered the equipment, somebody will probably be given that trolley who's 5 ft and won't need the extension, but if anyone was 6'1, it would have been really helpful to them. Um, he then started not to be able to walk with a trolley, and so he was given a rotunda
So he could stand to transfer to a glide about commode. And when the OT brought the rotunda, he was stood up on it, and he couldn't get his centre of gravity far enough over, partly because the handles were too low, but also because his feet is, um, size 12. And she said, oh, your feet are too big
So for the next 5 months, he stood on a rotunda that he was not really very stable on because he couldn't pull himself up because the handles were too low down and he couldn't get his centre of gravity. More into the the centre of the rotunda because he's pretty too big. Um, nobody came up with any plan about how we changed that
Um, but as long as he had enough, you know, upper body strength to get himself off a bed to standing, and then could sit on the commode, he, we kind of had a workout, and he, the glide about could get to the downstairs loo that he'd had put in and, um. So it was sort of OK at the point that he then couldn't stand up onto a commode, he was given a um Oxford stand aid and none of the slings fitted him. So, um, The OT came back, I think 3 times with 3 different slings
His body is actually, you know, his from sitting to the top of his head is about just under 3 ft. Um, but the slings just didn't work. You know, he felt very uncomfortable and unsafe
I mean, he's slightly nervous, but, you know, it was, it was much worse than I think it would have been if he'd been under 6 ft. Um, and so quickly, we said, actually, what we need is a ceiling track hoist. And we had several
Um, Different slings and the one he has is just about OK. Um, he's got about 1 inch clearance with his head from the bar. Um, and, um, but when he first had it, we still had the glide bank commode
And because his back was long, he, when we hoisted him, his bottom was off the end of the, of the commode, so he couldn't actually sit, sit himself because the commode was like this and his Yeah, you know, kind of body was like this. So, um, we had about a week with no solution to that at all, you know, oh well, you know, we'll we'll order a tip back commode for you. And he got very anxious because how is he going to get onto the commode because
The hoisting him with a sling didn't work. We then got a um tip back commode, which has been. Much, much better
Um, however, and, and mostly it's good, except that the foot plates can't be altered, and his feet, but he's got very long legs, and his, and his big feet, um, fall off the foot plate, but, and, you know, just can't be balanced properly. And as he's lost more and more function in his legs, this is becoming more of a problem because he can't. He can't hold his leg onto the foot plate
And um we've said, can this be altered? And they say no. But the major problem is his hospital profiling bed because it has A 6 ft mattress. They've put on an 8 inch extension at the base, but when he sits up, he's got a foot of himself above the mattress, and so he's got no support to his head at all
When he's lying down, he has to have his head about an inch from the top of the headboard, um, which actually isn't covered by, um, mattress. It's covered by a very, um, you know, a memory fault foam, very firm pillow, which kind of covers the two inches of the gap between the mattress and the headboard. Um, because he's got foot drop, his toes are basically hitting the footboard
We've asked if we can have a, you know, a different extension to so at least both ends. Um, they said no. Um, there's a charity in Leicestershire called Remap, um, which alters medical equipment, and the chap from Rolls-Royce came over and looked at the foot and said, oh, I could do this or I could do this, or I could do this
Um, all of which sounded quite sensible and, you know, reversible. And he said, but I'll have to check with Mediu, and Mediquip said, no, you can't alter the equipment. So basically, for the last, since September, I think he's been on the hospital bed, he's been on the bed, which I would say was too short for him by at least 8 inches
That's my story. Thanks, Jen. Thank you so much
What a tough time. I mean, it's just, I mean, he, he's, he's extremely uncomplaining, but it makes me really mad because my, um, a lot of my family are over 6 ft. My son's over 6 ft, um, my brother's over 6 ft
Um, the friend that I'm looking after is over 6 ft. Um, lots of teenagers are getting taller and taller, and I think what's the NHS going to do, you know, it's no good saying, um, people's average height is 5'9, because what about the people that are above that curve? Yeah. And one size doesn't fit all, does it? Well, you know, it's like, you know, when you come to
Something, especially something like, you know, um, you know, uh, a disease like um. Motor neuron disease, where there's muscle wastage. You would really think they would be thinking about design, you know, design, about different types of, um, diseases, different types of illnesses that equipment needs to support
Yeah. Well, I, I mean, one of the major problems with the bed, I mean, he hates the beds. I hate the beds because I, I think, you know, it's very uncomfortable for him
But one of the major problems is that the bend is at 2 ft. So, and that's just not changeable. So unless he's right up against the headboard, um, he feels like he's lying in a dip
So he's, he's not. Um, you know, even though it's a, a flat airflow mattress, um, it's actually is sort of millimetre critical, how he's lying in the bed. There's just no room for error
The other thing is that he's got very long limbs, and he can't really do this anymore, but he used to be able to turn from side to side. Um, but then his legs are out of the bed or, you know, the duvet doesn't cover his knees. And he said, you know, he said to me so many times, I wish I had a wider bed
And when we said to be, you know, kind of healthcare professionals, is it possible to have a wider bed? The answer is no, because you're not bariatric. I mean, he's very far from bariatric because he's just fading away. But if you're 25 stone, you can get a wider bed
Um, but if you're about 9 stone and long, you can't. It, it's so regimented, isn't it? It's not, it's definitely not looking at the person or what that person needs. But I, I, I think, I think one of the things that is really frustrating is that, you know, there obviously are engineers out there, you know, that Rolls-Royce engineer friends who drilled another hole, who, you know, has modified the equipment to make, it wasn't perfect, but it was so much better
And we weren't even allowed to tell them that we'd done that, um, and then, um. Somebody has come and said, I can make this bed longer. I can move the footboard out
In fact, one of the medical, um, people who came to put a mattress on said, Don't tell on this, but, um, people do take off the footboard. Um, but the trouble is there's so much. There's so little, um, room for error because he's just so long
You know, the, the, the total length of the bed is 6' 8 with the extension. Um, and he's got, um, 7'2.5 of him with his feet dropping
So he's just not going to fit on the bed. You know, full stop. And, and it makes me really annoyed that people talk about good palliative care
I think if you can't lie comfortably on a bed, you cannot have good palliative care. Yeah. I have full agreement, absolutely
I mean, you should be able to. Be comfortable, as comfortable as you can be. And healthcare professionals and the whole healthcare sector should be aiming for that
It should be, you know, Well, I mean, I, I, I get the I, I get the impression that it's, you know, it's not the healthcare professionals, that it's somebody saying, oh, Well, me, you know, medicalquis under a contract, and they've just produced this, and you can't change it, and tough. But I, you know, I, 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? Why can't there be a range of, of sizes, you know, different sizes. I mean, you know, most, most things, you know, if, if you were 5' nothing, um, I don't, most of the problems that we've encountered, I don't think you'd encounter, because the rotunda would probably be the right size for you
The lide about commode definitely would be the chair the. The bed probably would be the hoists, you know, you can get them in small, medium, and large sizes, but it's just. If you're tall, you're stuffed
I just, I'm so shocked, cause it's such a kind of simple thing, isn't it? And it's just such an obvious, it's such a practical thing. You just think that it would be provided for. Yeah
Well, I mean, I, I, I've been really, I, I'm a healthcare professional. I worked as a nurse, kind of on and off my whole working 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 Streeting I've I live actually live in Scotland
I've Written to Neil grey, I've written to the MPs, and it was only when 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 ft 4. Um, 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 um. Yes
Because of red tape. Yeah, so much. It, it, it would have really changed, it would have really changed our lives to have had, well, 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 uncomfortably
And that seems, you know, you can't, you can't actually even buy one privately because we have looked to see if 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. Terrible
Mm. So in terms of, well, I was gonna ask you a question about accessing equipment, but you've answered that question completely about. That you can't even get it privately
I mean, it just seems. And whether you, whether somebody, whether it's just cornered the market or not enough people being aware of it, there must be lots of other people, like you say, you've got people, you know, people do the same thing. I mean, I, you know, I, I think, I think there are all sorts of things like, you know, I've adapted quite a lot of The things that make our lives a bit easier
Um, and I've looked for similar things on the net, and they just don't seem to be there. And, um, so actually what, what I've done for the end of the bed is to make a wedge, which his feet sort of sit up against so that his toes aren't jabbing into the end of the, uh, the You know, because he's not only has he got foot drop now, but he's also got toe drops, so his, so his toes get kind of trapped at the end. So being on the, on the slope, um
Has meant it's not as agonising every single day, but it's still, you know, it's still kind of millimetre control. And if, if he's too far down the bed by half an inch, his feet are, you know, he says, I feel like I'm sort of concertina into the bed. So it's just mad
It's just, yeah, I, I just don't, I. It's just such a practical, you know, you just Yeah. So that we've, we've had a new mattress recently
Um, and the, the chap who delivered it says, oh, you know, you've got the extension on the wrong end. And I said, we haven't got the extension on the wrong end because it's, so my friend was sitting out in his chair, because the mattress had been changed. And the medical man said, Well, you know, they do it like this so that you're, because the top 3
Ripples don't ripple because you can't get pressure sores on your head. And I'm thinking, yeah, but, you know, actually. By the time you're off the head of the mattress, your, your shoulders potentially could get um pressure sores, and, and that's not, that's not rippling because You can't get pressures sources in your head, so your head's not supposed to be a part of the end of the bed
And, and, and if you extended it, because you can get an extension privately for 8 inches at the top end, which would make it long enough. But then when you lifted the Mattress. You'd still have the same problem that you've got a, you know, no supports to your head at all
Yeah. So the only way that he can actually sit to eat or drink is to sort of be bolt upright with something behind him, which pushes him away from the, the mattress, because otherwise, he can't swallow or I I don't know what's gonna happen when he can't, you know, when he can't do that because. There doesn't seem to be a solution
It's, it's terrible. I'm so sorry that you and your friend, well, your friend's going through this, but you're, you're having to go through this because, you know, it's. I mean, it's heartbreaking that someone's having to go through, you know, I mean, that, that's why I'm, you know, I'm so pleased that you're trying to do anything because honestly, I, I haven't
I haven't kind of felt that anyone is trying to do anything. It's just like it's, oh well, it's not really a problem. You know, you're a bit odd because you've got too, or your feet are too big or, you know, oh, it's not like thinking, well, people are getting taller
You know, uh, I don't, I don't know what the curve is, but if one person's being diagnosed with MND every 6 minutes or something, or, you know, um, Then we're gonna have a lot of people in the UK with neurological diseases that they can't move about and a fairly high percentage of those are going to be tall. But even if it was only 10, why are we making 10 people lie in a bed that they can't fit in? That's the thing, isn't it? And that's what I think. It's just, it doesn't really matter how many people it is
It's the fact is that you're providing equipment to To take care of somebody. And if the equipment is. Not performing
It's not quality. It's not. There's no quality assurance
The the thing that I think the question is about, is where is the quality assurance in all of this? You know, particularly where there should be quality assurance for health. No, is that person who's going through this, getting the best that they can get? And I, I would, are our health authorities. Doing that
I, I would absolutely argue no. And I, and it makes me very upset that if you're bariatric, you actually get better care. Than if you're just a normal size, but you happen to have long bones
But, you know, that, that actually seems to be how the provision is that, you know, now when you go into a surgery, you can, you sit on a bariatric chair. If you need a bariatric ambulance, they send one, you know, you've got people with bariatric stretches, bariatric, this, that and the other. But if you're a normal height and weight, but you're at, at the top of the curve
Yeah, you're not. Yeah, yeah, you're not cater for that, and that seems really bizarre. Yeah
And it's, uh, it's where they, they're not really thinking. Where you have a provider is just providing and it's just the tick box kind of, you know, we've got this, we've got these, we've got that, and obviously costs but not thinking, not having. Some sort of Well, quality control, quality insurance, somebody in that company, in Mediqui
Why are they, they should be proud? Surely everything that you produce or you do, you want to be proud of. How have you ever been proud of, of cutting for undercutting so badly? Well, I think the other thing is to Be to be so draconian about doing modifications, which could be reversed, because that's the thing that has really stymied us. You know, this is a problem
We've got a Rolls-Royce engineer who says he can solve it. Um, it, he's suggested three different solutions, and you won't let them do any of them. And, you know, when When I was talking to Angela, she said, oh, I think I, I've heard of your friends, you know, and we'll make sure that this is, um, you know, kind of followed up
But, you know, as far as I'm aware, absolutely nothing is, it's not like anyone's sort of Got more soft-hearted and said, oh, yes, you know. Of course, we must, you know, I mean, this man's terminally ill. How many, but how long is he going to live for? And how many more months does he have to live on a bed that's, you know, I, I mean, I'm strong and I can move him
But when I'm not here, um, his sister or another friend is here, and they're not as strong as me. And I, um, he, he wouldn't complain. But I don't know that he's as comfortable because it is kind of millimetre precision that we have to do to get the best result, which is, I think, poor
It's just not right, is it? It's not, it's not right. It's not fair. It's not human, is it? This is the thing
Where is the humanity gone? Where is, where is the, the thought of what this? So it's kind of, I, yeah, I, I just get the impression there's a factory and there's, you know, the just making things. It's not really thinking about what the end product is. Yeah
Well, I think, I mean, maybe it's been fine till. Somebody sticks their head up above the parapet, but that's, you know, I've said to him, I am really determined to make a difference, you know, if it's the last thing that I do, it may not be in time for you, but it, Johnny has to be in time for my son or, you know, his contemporaries. Yeah, because
Yeah, it's not OK. It's not OK. Thank you so much, Jen
Uh, I really really appreciate your time to tell us, tell me this, this, your story and your friend's story. I'm gonna stop recording though, if that's OK, unless you have anything else to say. No, that's fine
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