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Guest post: Does your wheelchair meet your needs?

RachaelHackOnWheelsRachaelHackOnWheels Member Posts: 16 Listener
edited July 2017 in Guest blogs

My name's Rachael, and I want to talk to you about #HackOnWheels.

I was really shocked to discover how many people need a wheelchair but do not have access to one that meets their needs.

In order to give independence and freedom, a wheelchair must be fully customized to the body, lifestyle and environment of its user. With traditional design, manufacturing and distribution, this comes at a prohibitive price.

So I’ve been developing #HackOnWheels, which aims to enable all wheelchair users, wherever they are, to access a wheelchair that has been fully customized to meet their individual needs.

Group of people smiling, gathered around laptop on table

#HackOnWheels is the movement to create the first open source wheelchair. Crowd-sourced design challenges from wheelchair users will put the wheelchair user at the heart of the design process.

An online library of open source wheelchair designs, with a platform that allows online design collaboration, will drive innovation in the market. A design code for open source wheelchair designs in the online library will ensure that designs can be made from standard parts that are easy to obtain, making it cheaper for wheelchair users to repair their wheelchairs.

Even when people do have access to a wheelchair that has been customized to meet some of their needs, I have yet to meet someone who is totally satisfied. Whether that's because they want to change castor forks for when they are going over different types of terrain or they want their chair to look beautiful, when they're on a night out. 

Lady sitting on stall, three other adults working on wiring and computers

Manufacturers typically use specialist components that can only be bought from them, so if a wheelchair breaks it can be an expensive and long-winded process to acquire the spare parts needed to fix it.

When I was on holiday in Jordan, I visited the NGO Refugee Openware and they showed me a prosthetic hand that they had made for a Syrian boy who had lost his fingers in the conflict. They'd used an open source design to make it that's part of e-NABLE's online design library. They'd customised it to fit and adapted it so it looked like Ben10's hand because the boy was a huge fan of the cartoon. It had been 3D printed on a domestic printer and only cost them $39 to make! 

I was really excited by e-NABLE because what started with just one design has grown into a library as people have improved and adapted the design and shared their work. There's a hand for holding a violin bow and one for holding playing cards. These are the sort of highly customised products that would rarely go to market and if they did would have a huge price tag.

I asked whether anyone was doing anything similar with wheelchairs and they said they weren’t.

Man in wheelchair pointing at TV screen displaying a wheelchair

What inspires me, is that when wheelchair users, hackers, designers and makers hear about #HackOnWheels they want to get involved. I’ve been contacted by people literally all over the world who want to help. Whether it's by spreading the words, sharing ideas, coming to hackathons or developing designs, it’s the #HackOnWheels community that is turning the idea into a reality and that’s incredibly exciting. 

Our next makeathon is on 16 July and you can also join the movement. 

I'd love to hear your thoughts! 

What do you think of your wheelchair? Does it meet your needs? Have you been hugely out of pocket when buying it, or replacing parts on it? What would you want to change? 

Replies

  • UtopianUtopian Member Posts: 2
    I'd like a wheelchair that can get close enough to a door that I can open it 
  • kennykenny Member Posts: 77 Courageous
    My latest manual chair cost over 3000 pounds, why so expensive?
  • RachaelHackOnWheelsRachaelHackOnWheels Member Posts: 16 Listener
    edited July 2016
    Hi @Utopian, thanks for sharing. I'm feeding it back to #HackOnWheels HQ so we can investigate it at our next makeathon. What part of the wheelchair gets in the way? Is it the footplate or the small wheels or something else?
    And if your free on the 16th of July, it would be great to have you there! www.hackonwheels.org/events
  • RachaelHackOnWheelsRachaelHackOnWheels Member Posts: 16 Listener
    edited July 2016
    Hi @Kenny, great question! We're hoping that by putting wheelchair uses in control, with a library of open source designs and new types  manufacturing, we can change this. But it's our community that will help make it happen. I hope you'll join!
  • UtopianUtopian Member Posts: 2
    Hi Rachel, it's the footplate that gets in the way.sadly not free on 16th July
  • ShropkatieShropkatie Member Posts: 2
    Hi, I have an RGK chair that I self funded the NHS provided me with an electric one but where I live accessibility is poor that I need a chair that people can lift in and out of buildings as well as things such as going out in friends cars. A standard manual wheelchair would be to heavy to push as I have a hemiplegia.
    my chair was very expensive, why? Because companies can charge what they like as they know you need it! I needed a lateral support so that added onto the bill was it essential- yes was it worth £250 NO WAY. But I needed it so they could charge what they like. Then I have lost a cap that covered the nut for the castor fork, checked hardware shops and nothing would fit. So, I had to order direct through wheelchair supplier, they only sell in pairs and have set p&p which is also recorded. A plastic cap that looks like you could get from a hardware shop in the end came out at £10+ and why because they can! 

    I have had had a charity called remap make handles that be screwed into the existing ones so they can be screwed on when needed and my carer could push. For chairs of my style there's nothing on the market that solved the problem I faced-but its enhanced my life no end now.
    Hope this helps,
    katie
  • kennykenny Member Posts: 77 Courageous
    Yes all that you saybis true, no way my wheelchair cost over three grand to make! They charge what they want and no one says anything!
  • becca_bbecca_b Member Posts: 1
    Hi, I'm a mummy to 4 children, one being a wheelchair user. He is 8 years old with Down's syndrome and a few other issues. We also have a little one who has just turned 2, who needs a pushchair. I'm not able to take them out alone as I can't find any where a suitable product to cater for both children. Twin Pushchair weight limits are way below what my little boy is and there doesn't seem to be anything out there if you have a younger child as well as a child with mobility issues. Any suggestions would be greatly appreciated. Thank you 
  • buttonqueenbuttonqueen Member Posts: 1
    I have had to fund raise myself to buy my chair, it took me over a year. I've been stuck at home for 4 years slowly getting worse to the point where I couldn't go out without someone to take me in an attendant pushed chair. My new chair is absolutely fabulous, the rise & tilt functions make a massive difference to me. However having the leg raiser function would make me much more comfortable. But I just couldn't wait another 6 months or more to raise the extra money - I was just desperate! My chair also has lights on the side that I have bashed & broken a hundred times or more. They'd be better for me moved to a different position. So I've got lights, but one side are useles - bit pointless really! 
    I would like to say I'm eternally grateful to my friends who helped me raise the money. I've already started to fund raise for the next one as this has a 5 year life span! 
  • anaqianaqi Member Posts: 54 Courageous
    I'm a part time wheelchair user. The NHS loaned me a heavy manual wheelchair but I can't self propel it.  I self funded an electric chair but it's uncomfortable to use for any length of time.  I need a proper assessment of my needs but the NHS won't assess me for an electric chair because most of the time I can mobilise around my home on crutches, even though this causes me pain and injury because I have Ehlers Danlos Syndrome and hypermobile joints that partially dislocate. How can I get help? The local mobility shops have limited stock and I can't afford to buy a brand new chair.
  • darrenseikdarrenseik Member Posts: 1
    I have two manual chairs. On a waiting list for an electric chair. I found a stylish one for outside the house. My work paid half but it is too wide for inside. So I have a very thin chair for indoors. Both self funded. Now I am over the shock of being in a chair the cost is getting the better of me. These are things I need now but have to wait up to a year for an electri or pay for one myself. It is shocking.

    I want ant to do sports but now need yet another chair for that. Going to the beach yet another. One chair does not meet all the requirements of every day life and anything custom is slapped with an expensive price tag. Like an attachment to enable cycling to work and detatches after to be charged up. £2500. It's just crazy 
  • ShropkatieShropkatie Member Posts: 2
    becca_b said:
    Hi, I'm a mummy to 4 children, one being a wheelchair user. He is 8 years old with Down's syndrome and a few other issues. We also have a little one who has just turned 2, who needs a pushchair. I'm not able to take them out alone as I can't find any where a suitable product to cater for both children. Twin Pushchair weight limits are way below what my little boy is and there doesn't seem to be anything out there if you have a younger child as well as a child with mobility issues. Any suggestions would be greatly appreciated. Thank you 
    I have messaged you x
  • FRoggleFRoggle Member Posts: 5 Listener
    My son is 8 and uses a wheelchair part time. The major issue we have with his chair is the weight of it. It is prohibitively heavy which makes self-propelling impossible for him, and makes lifting it in and out of the car awful for me. His previous chair which was smaller, was also absolutely horrible to push because the handles were based onthe width of the back of the wheelchair which was, due to his age, very narrow. It made it physically painful to push, and in some scenarios, actually dangerous. 
    And don't even get me started on the impossibilities of taking out a typical toddler and older child ina wheelchair. Trying to do that has had me in tears before. Seriously, would it be so difficult to make a little shelf on the back for a toddler to sit on? I can't believe that it would. 
  • LindsayOLindsayO Member Posts: 1
    Rachel, Great idea making spare parts standardised. I'd also like to see brakes on manual wheelchairs, not just wheel locks, and gears on wheels with anti-roll-back for when you are going up hill.
  • LauraRutherfordLauraRutherford Member Posts: 16 Courageous
    I don't even know if this is changeable but what I find hard with our sons wheelchair is the things you can put on the back to stop them from tipping when rocking. They're handy to have but they stick out so far if you're walking with the chair they hit your ankles. 

    Small grumble really but it's poorly designed. 
  • discodevilxdiscodevilx Member Posts: 3
    Wheelchairs are heavy and cumbersome . I have and electric wheelchair and find the following annoying and unnecessary:
    1. Too heavy to transport. The chair weighs about 13 stone or so. I can't see the need for such a heavy chair in this day and age. It should be easily dismantled for transportation. 
    2. They are generally made using poor quality materials and workmanship. I see them as my shoes, except we can't afford to replace them regularly so you would get the most durable. Regardless of cost the quality is rubbish! 
    3. My foot plates bent within a few weeks due to minor bumps- if I scuffed my shoes they might not look as pretty new but they. Would still be functional- my footplates aren't now adjustable or functional 
    4. The controls are not smooth and sometimes it has a delayed reaction so I hit things.
    5. Hands are used to control the chair and it wouldn't be beyond the wit to have a pouch next to your thighs for wallets and keys so personal belongings are not in a bag on the back of the chair.
    6. Why so expensive for such poor technology? People pay less for cars /Mac computers!!!
    7. Why do they look like trolleys on wheels? I like to look good too thanks. People buy a car because of looks and functionality why not chairs?
    8. Why do they only go on level terrain? Despite what manufacturers claim they cry and strain on any uneven ground, battery drains and you look a right Pratt when you are stuck! Then you have to find ten people to help you out of the uneven terrain because the chair is 13 stone plus your weight on top. 
    9. You need a chair for freedom but there isn't real freedom. Ok I appreciate man made obstacles but we could have so much more freedom if manufacturers actually thought about it properly. It's not beyond the wit of them.
  • bjme2bjme2 Member Posts: 1
    Wider wheels on the front as the normal ones get caught in dips in UK and Europe. I have drum brakes on our German one - Brilliant best ever should be standard on all.  Rear handle need to be adjustable in height, possibly an extra 120mm. Also 95 percent of Standard chairs are too short on the handles leaving you stooped over and aching after pushing. I pushed my wife's chair for over 10 years daily and I'm only 180cm tall and these points annoy me daily 
  • WheelyRachelWheelyRachel Member Posts: 67 Courageous
    edited July 2016
    The first main answer, No neither my manual or powerchair are great, but the worst has to be the manual. The back is totally unsupportive and the seat well after only 30mins it causes discomfort I've had to make a cusion from an old memory foam pillow to give me so comfort.
    the power chair well considering it was near on 12,000 on mobility it has next to no suspension so I feel every bump and crack in the paths. It also has a very thin foam seat. 

    The first main thing I'd like is a personal molded back so I'm fully supported and a better arm/hand support for the controller side.

    Id also like a shopping trolly that actually connects to a powerchair not just manual types /styles. As I live independently and have to do my Owen shoping
  • SussexgalSussexgal Member Posts: 7 Listener
    Over the past three years I have come to be a wheelchair user. At first I bought a wheelchair so that I could leave my house with family and friends then thanks to an O.T. Referral I have been given a new chair but it is still difficult to get about on my own. One thing that amazes me is that everything made for an adult disabled person is black, blue and occasionally green. Can I please have a wheelchair that is colourful And suits my personality?

  • CollyoftheWobblesCollyoftheWobbles Member Posts: 18 Courageous
    Hi,
    I'd love to upgrade my wheelchair. Got it on the nhs when I was 14, now 30 and I can't get it changed.
    I would love back support, the right height. One that will go through doorways (mine is too wide for normal single doorways)
    I would make the seat fit me, and maybe put a cup holder on the side. Or a acsessorise kit, like a hoover. You can switch up what you need depending on when you youes it. Attachable bag and so on. 
    Light weight and lockable wheels, oh and easy self propelling, maybe easy grip wheel rings.
    cosmetics and paint would be great but for now, what I would really change, acsess to someone who could fix it and tune it when it gets a flat or a wheel goes wrong.
    i can't afford to upgrade and no-one will replace or fix it.
    i'm very grateful to have it, just wish it was more useable. #HackOnWheels
  • kennykenny Member Posts: 77 Courageous
    I think all these comments prove that we who unfortunately need wheelchairs to live our life's are forced to pay well over what the wheelchair costs to make, my new one as I have said before cost over three thousands pounds. Again I ask the question why?????????
  • onmybiketooonmybiketoo Member Posts: 8 Connected
    My Hubby has just been supplied with a NHS Sunrise Salsa M2 Quickie, he is a high level SCI survivor with very bad scoliosis. He would change the following a controller with a big enough screen that he can actually see it, pre sets so that he does not accidentally & painfully use recline instead of tilt, a faster speed so that he can keep up with his friends in mobility scooters, more specialised options for his back rest to take into account his curvature, someone to take into account nuts / bolts / sharp edges that stick out, [painful for carer & him] and finally better designed footrests.When you are a full time wheelchair user you need your chair to be like the most comfortable armchair that you have ever sat in or slept in. Most fail miserably in this count.    
  • asdedsasdeds Member Posts: 7
    I have a basic manual chair which is nice, but my left shoulder is out of socket most of the time, so I find it really hard to push. The NHS promised me an electric wheelchair assessment before Christmas... So my question is, is there a way to very cheaply make it easier to wheel myself? I'm hoping orthopaedics can help with my shoulder so I can build the strength to move myself, but until then... Motors? Anything useful.
    i can't make it to any meetings, sorry.
  • WilfWilf Member Posts: 11 Connected
    May not be that relevant yet but this is an interesting thought for the future - standing wheelchair https://www.facebook.com/Upworthy/videos/vb.354522044588660/1270261416348047/?type=2&theater 

    Wilf, Life Support Productions
  • bexter78bexter78 Member Posts: 5 Listener
    I have a manual self propelling chair and an electric wheel chair that is just for inside and the garden which was organised through O/T. I'm awaiting an outside chair, already been waiting a year for it. 
    My manual chair, I wish there was a way to go up a hill or incline without rolling back I think there should be a form of break to make it easier.
    On both chairs I wish there was a bag that I could reach for my purse and keys
    on both chairs I cannot open the front door as I can't get close enough.
    the casters on the back stick out on my electric chair so much that the go into skirting boards and doors, I would also like a cup holder or a tray with a dip for the cup to fit in.

  • tayajaytayajay Member Posts: 4 Listener
    I am a wheelchair user and really would love a wheelchair that i can do sports and get to do things around the house like cooking without having to stretch, also wheelchair which is light weight so its easier to transport i.e. in a car.

    the idea that a wheelchair is designed for its owner is a good thing x
  • williamelawrencewilliamelawrence Member Posts: 1 Listener

    Trying to find a fully supportive wheelchair for my 5 year old daughter that will go on surfaces other than a flat path. We struggle to get it up our gravel drive let alone on country walks or a beach!

  • craftyinsomniaccraftyinsomniac Member Posts: 5
    I can't afford a power chair like I need, and as I can't use it around my house at the moment I can't get one on the NHS at the moment. It would be nice if wheelchairs were more portable e.g. for people who don't have adapted cars, and not so heavy for those too (because I have friends who I go out with and they can't have them in their cars, I also can't afford an adapted car as I can't get help with my living costs as I currently live at home).  Chairs are far too expensive and restrictive, they are awkward on different surfaces and uncomfortable and hot for long periods.  It would be nice if it wasn't that we always have to watch others having fun or doing things, it would be nice if our chairs could do more instead to allow us to do more and even just making them lighter and less expensive would be helpful!!  
  • melkadiamelkadia Member Posts: 3
    Wheelchair users have to negotiate various heights.  However the wheelchair 'seat' is fixed in the sense that it does not go up or down.  Would it be sensible to design a wheel chair where the seat can be adjusted up or down?   
  • lizzie8898lizzie8898 Member Posts: 1
    Why after 30 years do I still need 2 car batteries for my powered wheelchair.
    Why is the 'ordinary' back rest so uncomfortable -thinner than the last model, no doubt to save money and with a seam in the middle - level with my vertebrae.
    Why is it difficult to find a suitable back pack - VERY limited choice.
    Is all this because 'we' are a captive audience so not much needs to be done?
    Manual wheelchairs have improved some, not the powered ones though, my thoughts of ocurse.  You may think otherwise!
  • asdedsasdeds Member Posts: 7
    bexter78 said:
    On both chairs I wish there was a bag that I could reach for my purse and keys
    I would also like a cup holder or a tray with a dip for the cup to fit in.

    You might be interested, I found a bumbag that has a bottle holder online, it works as a cup holder and a purse. Not perfect, and not stylish, but works!
  • MerlynhawkMerlynhawk Member Posts: 1
    I use an electric wheelchair that I would like to be able to add/convert to a scooter fronted mobility device. Probably doesn't exist, but ...
  • bexter78bexter78 Member Posts: 5 Listener
    asdeds said:
    bexter78 said:
    On both chairs I wish there was a bag that I could reach for my purse and keys
    I would also like a cup holder or a tray with a dip for the cup to fit in.

    You might be interested, I found a bumbag that has a bottle holder online, it works as a cup holder and a purse. Not perfect, and not stylish, but works!
    Ow my god, where did u see this please ? 
  • bexter78bexter78 Member Posts: 5 Listener
    I can't afford a power chair like I need, and as I can't use it around my house at the moment I can't get one on the NHS at the moment. It would be nice if wheelchairs were more portable e.g. for people who don't have adapted cars, and not so heavy for those too (because I have friends who I go out with and they can't have them in their cars, I also can't afford an adapted car as I can't get help with my living costs as I currently live at home).  Chairs are far too expensive and restrictive, they are awkward on different surfaces and uncomfortable and hot for long periods.  It would be nice if it wasn't that we always have to watch others having fun or doing things, it would be nice if our chairs could do more instead to allow us to do more and even just making them lighter and less expensive would be helpful!!  
    Hi, 
    you can claim PIP even if you live at home as they are not means tested, even if you just get the mobility side it would mean you can get with an adapted car or scooter/electric wheelchair. Or you can use the monthly money towards something that will help you. 
    You can get pip if u work or can't . It's worth applying. Do you see an occupational therapist? They have got me my electric wheelchair. If you need to use it everyday, Iv currently got one that's for the house and garden, to get you use to it, then you get put forward for an outdoor one. It means you don't pay for them. 
    Dont think that just because you live at home you won't get help as it is not true. An O/T can help get you any adaptions that you need so worth getting in touch, I did through social services but I'm sure your GP can refer you. 
    Good luck 
  • LittleFrankLittleFrank Member Posts: 2
    What a wonderful idea!

    I have self-funded the cheapest possible mobility scooter, as I can't afford an electric wheelchair and can't get any NHS or PIP help (I don't need a wheelchair to get around the house, and I can't apply for PIP without the risk of losing the DLA care component I currently get and being left with no disability support at all). So I'd be very happy if at some point you were able to extend this project to cover mobility scooters too.

    After being mostly housebound for 12 years, it's wonderful to be able to get out again more independently. However, I've found that the amount I'm able to use my scooter is disappointingly very limited. One problem I have is that with no suspension I get thrown around a lot by pavement bumps and my back, arms and hands jolted, which is a big issue since I'm struggling with pain and fatigue that affects all my body. The biggest problem is that I have to hold a lever to make it go, and the lever is a really uncomfortable shape and placed in an awkward position that strains my already sore hands. Redesigning this little plastic lever should be a really straightforward thing, and if I weren't ill I could probably cobble something together myself that would sit better in my hands. But in my situation it's a big, frustrating barrier with no solution I can find.

    Even finding more money to get a more expensive scooter wouldn't help, as I need the scooter in order to access public transport, and the more expensive and probably more comfortable ones are too big and so not allowed. [I'm unable to access my local door-to-door transport service because I don't receive the required mobility benefits to qualify (even though I really need mobility component DLA/PIP and should qualify in theory, my mental health hasn't been good enough to fight for it).]

    I'd be really grateful for any advice you can give. Thank you!
  • LittleFrankLittleFrank Member Posts: 2
    I use an electric wheelchair that I would like to be able to add/convert to a scooter fronted mobility device. Probably doesn't exist, but ...
    This does exist, I've seen it - it clamps onto the front on an electric wheelchair, and has a big front wheel, and I've seen someone using one in my neighbourhood. I bet it costs a lot, but I wanted to let you know it's at least a thing :-).
  • asdedsasdeds Member Posts: 7
    bexter78 said:
    asdeds said:
    bexter78 said:
    On both chairs I wish there was a bag that I could reach for my purse and keys
    I would also like a cup holder or a tray with a dip for the cup to fit in.

    You might be interested, I found a bumbag that has a bottle holder online, it works as a cup holder and a purse. Not perfect, and not stylish, but works!
    Ow my god, where did u see this please ? 

    Amazon :)
  • bexter78bexter78 Member Posts: 5 Listener
    Why after 30 years do I still need 2 car batteries for my powered wheelchair.
    Why is the 'ordinary' back rest so uncomfortable -thinner than the last model, no doubt to save money and with a seam in the middle - level with my vertebrae.
    Why is it difficult to find a suitable back pack - VERY limited choice.
    Is all this because 'we' are a captive audience so not much needs to be done?
    Manual wheelchairs have improved some, not the powered ones though, my thoughts of ocurse.  You may think otherwise!
    I totally agree, plus with the seam going to the middle this is going to aggravate my scars. Even 8 years later they are so sensitive. I hope they change this quickly. 
    I wish they did upgrade the electric wheelchair so it can go in a car. We get this fantastic chairs and then when we go any where we can't use them?!
    good luck
  • bexter78bexter78 Member Posts: 5 Listener
    What a wonderful idea!

    I have self-funded the cheapest possible mobility scooter, as I can't afford an electric wheelchair and can't get any NHS or PIP help (I don't need a wheelchair to get around the house, and I can't apply for PIP without the risk of losing the DLA care component I currently get and being left with no disability support at all). So I'd be very happy if at some point you were able to extend this project to cover mobility scooters too.

    After being mostly housebound for 12 years, it's wonderful to be able to get out again more independently. However, I've found that the amount I'm able to use my scooter is disappointingly very limited. One problem I have is that with no suspension I get thrown around a lot by pavement bumps and my back, arms and hands jolted, which is a big issue since I'm struggling with pain and fatigue that affects all my body. The biggest problem is that I have to hold a lever to make it go, and the lever is a really uncomfortable shape and placed in an awkward position that strains my already sore hands. Redesigning this little plastic lever should be a really straightforward thing, and if I weren't ill I could probably cobble something together myself that would sit better in my hands. But in my situation it's a big, frustrating barrier with no solution I can find.

    Even finding more money to get a more expensive scooter wouldn't help, as I need the scooter in order to access public transport, and the more expensive and probably more comfortable ones are too big and so not allowed. [I'm unable to access my local door-to-door transport service because I don't receive the required mobility benefits to qualify (even though I really need mobility component DLA/PIP and should qualify in theory, my mental health hasn't been good enough to fight for it).]

    I'd be really grateful for any advice you can give. Thank you!
    My leaver to use came off in my hands, when they came out to fix it I was explaining the same problem with my hands. The guy then put a golf ball on instead and said try that. It so much easier to control now, and a lot easier on my hand. Might be worth thinking about. Good luck 
  • LsimpsondesignsLsimpsondesigns Member Posts: 1
    I had to wait for 7 months from the NHS but the problem is now the chair is too big - they knew this from the start but with cutbacks they stopped making my size and tried to put cushions in the chair and it is causing no end of problems. 
  • catherineevanscatherineevans Member Posts: 2

    Hi

    My 13 year old daughter isabella is a wheelchair user and I have been looking to convert her manual chair into an electric.  Being a pretty, fashion conscious girl she doesn't want a big electric wheelchair which engulfs her.  She wants to be seen before her chair. 

    We currently went to kidz to adults in Wales on the hunt for something suitable for all her needs.  Sadly we did not find it, what we did find was 3 chairs that's if incorporated into one chair would be perfect.  Firstly the style of her manual chair if great at its easy for her to get out of for transfers, secondly she would like to be able to convert it to electric for when she's out with her friends easily ( she can't have it permanent electric as she wouldn't be able to take it to her dads), also it would be great if the chair had a lift on it so she could sit at any hight for School and to be able to take to people at their hight to, also she would like this chair to be 4 wheel drive so she will never get stuck if she goes camping or to a festival with her friends. Lastly it would be great if it had a curb climber too. 

    I know all that in one chair would be impossible but it would be amazing.   

    Catherine 

  • InclusiveHomeInclusiveHome Member Posts: 2
    We're struggling to get the right wheelchair for my 5 year old daughter.  
    We really need a buggy or transit chair, (ideally with tilt in space but we think we can manage without this), compact enough to go in the boot of a family car and low enough seat position to do an assisted self transfer.  These criteria all seem to be mutually exclusive!  
    EJ is able to stand with assistance and is beginning to take assisted steps so we're really keen to get a chair that she can transfer in and out with a bit of help rather than being hoisted (particularly at school).  We're told that the only chairs which are low enough to the ground for her to do do this are self propel chairs, but we're worried about her trapping her hands as she loves textures and I think she'll love playing with the tyres! 
  • topsyjkvtopsyjkv Member Posts: 4
    My hubby and took a long time looking for and deciding on my wheelchair. We bought an Invacare Storm 4, ex demo model at a cost of nearly £7000.00. It looks like a tank but unfortunately is not very robust at all, which is not ideal when out and about. Not everywhere is easily accessible by wheelchair and if you touch a door or something with the leg rests they seem to bend out of shape. 
    Having said this it was a great improvement on my last chair at least it could cope with hills. It also had something which we had to pay extra for G Track. This should be fitted as standard as otherwise dealing with driveways and dropped kerbs is very dangerous. I ended up in the middle of a busy road with my old 1 one day. 
    Also you have to go through a dealer to get any parts making things more expensive. 
    I think nowadays days we should be asked about our needs before things are put in place. 
  • topsyjkvtopsyjkv Member Posts: 4

    Hi

    My 13 year old daughter isabella is a wheelchair user and I have been looking to convert her manual chair into an electric.  Being a pretty, fashion conscious girl she doesn't want a big electric wheelchair which engulfs her.  She wants to be seen before her chair. 

    We currently went to kidz to adults in Wales on the hunt for something suitable for all her needs.  Sadly we did not find it, what we did find was 3 chairs that's if incorporated into one chair would be perfect.  Firstly the style of her manual chair if great at its easy for her to get out of for transfers, secondly she would like to be able to convert it to electric for when she's out with her friends easily ( she can't have it permanent electric as she wouldn't be able to take it to her dads), also it would be great if the chair had a lift on it so she could sit at any hight for School and to be able to take to people at their hight to, also she would like this chair to be 4 wheel drive so she will never get stuck if she goes camping or to a festival with her friends. Lastly it would be great if it had a curb climber too. 

    I know all that in one chair would be impossible but it would be amazing.   

    Catherine 

    But why should it be so amazing, if 1 machine can do 1 thing why can't the incorporate lots of things in to 1 machine. We all are individuals so all have different needs/wants.


  • topsyjkvtopsyjkv Member Posts: 4
    Sussexgal said:
    Over the past three years I have come to be a wheelchair user. At first I bought a wheelchair so that I could leave my house with family and friends then thanks to an O.T. Referral I have been given a new chair but it is still difficult to get about on my own. One thing that amazes me is that everything made for an adult disabled person is black, blue and occasionally green. Can I please have a wheelchair that is colourful And suits my personality?


    I have blinged mine up with lots of stickers and jewels etc. 

  • melkadiamelkadia Member Posts: 3

    Hi Rachel - thanks for the invitation.  but l live in Malta.

    Regarding the comment whether  it is manual or powered well I guess that such a facility could be applied in both cases.  obviously there would have to be limitations to the height adjustments  but I believe that to optimise the selection of adjustable heights designers/OTs could work out home/work environments and establish the most common heights that a person would have to negotiate.  for example kitchen tops/sinks etc are often not easy for wheelchair users to negotiate.  this is due to the fact that since they are seated the hands of wheelchair users cannot function as effectively as when a person is standing. 

  • JenniferUJenniferU Member Posts: 124 Courageous

    Hi

    My 13 year old daughter isabella is a wheelchair user and I have been looking to convert her manual chair into an electric.  Being a pretty, fashion conscious girl she doesn't want a big electric wheelchair which engulfs her.  She wants to be seen before her chair. 

    We currently went to kidz to adults in Wales on the hunt for something suitable for all her needs.  Sadly we did not find it, what we did find was 3 chairs that's if incorporated into one chair would be perfect.  Firstly the style of her manual chair if great at its easy for her to get out of for transfers, secondly she would like to be able to convert it to electric for when she's out with her friends easily ( she can't have it permanent electric as she wouldn't be able to take it to her dads), also it would be great if the chair had a lift on it so she could sit at any hight for School and to be able to take to people at their hight to, also she would like this chair to be 4 wheel drive so she will never get stuck if she goes camping or to a festival with her friends. Lastly it would be great if it had a curb climber too. 

    I know all that in one chair would be impossible but it would be amazing.   

    Catherine 


    Well done @Catherineevans

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  • SteveOSteveO Member Posts: 4 Listener
    edited July 2016
     

    Hi, my name is Steve and I would be interested in your meeting except I live in Manchester. There are several fundamentally wrong with mass produced wheelchairs, I'm referring to electric or powerchairs. As a wheelchair user who can't provide enough strength or grip to use a manual, electric is the only way forward for me. Of course one of the main problems is the ridiculous price being charged for outdated, underpowered and mostly uncontrollable pieces of steel, plastic and rubber. How on earth can companies in this modern day continue to get away with using the lead batteries that they insist on installing? There is a much more efficient type of battery that can be used today, the Lithium Ion battery, if used correctly, that's without an inbuilt BMS. These batteries can last for many miles without charging and can be used for up to 10 years. Also the way in which the power modules or controllers are programmed makes the chairs very clumsy to control. If you want to reprogram your chair, you have to have knowledge as I do or it's tough luck. They build the chairs out of mild steel which makes them heavy them put on a thin layer of cheap paint and use steel nuts and bolts that start to corrode within a year. They use high priced, grey tyres and unbelievably still use solid tyres in some cases???? What's wrong with 6ply tubeless Kevlar lawn tyres? Why do you think car manufacturers use them? Because they're safe, have less punctures and provide a comfortable ride. Why don't they also install stainless steel, sealed bearings with cost pennies more than the cheap rubbish they currently use. They could also put the users seating position at the centre of gravity above the rear wheels which would in turn stop the front castor wheels from getting stuck if you drive onto soft ground. Whilst you putting the new tubeless tyres on, which should be black by the way, why don't they make them wider? Say 6 inches, easily attained by turning the battery pack the other way round meaning the wider tyres don't make the chair any wider. Also why on earth do they make the chairs have a max speed of 4mph? I want mine to travel at the highest speed allowed by current laws. Make the all chairs capable of doing this. You may have already guessed that my own chair already has all the above but only because I made it so. I used things from eBay that were designed for something else, I've used automotive parts and I've adapted the rest. I've also reconfigured my wiring so that I can charge my batteries within 1hr, I can also charge it from my car. Imagine what could be done if the industry could be bothered? I have a lot more to say about how chairs could be made better and I hope your initiative does some good.

    Regards

     Steve Ollerhead

  • SteveOSteveO Member Posts: 4 Listener
    edited July 2016
    JenniferU said:

    Hi

    My 13 year old daughter isabella is a wheelchair user and I have been looking to convert her manual chair into an electric.  Being a pretty, fashion conscious girl she doesn't want a big electric wheelchair which engulfs her.  She wants to be seen before her chair. 

    We currently went to kidz to adults in Wales on the hunt for something suitable for all her needs.  Sadly we did not find it, what we did find was 3 chairs that's if incorporated into one chair would be perfect.  Firstly the style of her manual chair if great at its easy for her to get out of for transfers, secondly she would like to be able to convert it to electric for when she's out with her friends easily ( she can't have it permanent electric as she wouldn't be able to take it to her dads), also it would be great if the chair had a lift on it so she could sit at any hight for School and to be able to take to people at their hight to, also she would like this chair to be 4 wheel drive so she will never get stuck if she goes camping or to a festival with her friends. Lastly it would be great if it had a curb climber too. 

    I know all that in one chair would be impossible but it would be amazing.   

    Catherine 


    Hey @Catherineevans, all that you've is already available in many wheelchairs now. Obviously though it does come at a cost!!!!! Wheelchair are an individual thing and some of you ideas wouldn't suit me. Rather that a clunky curb climber it's much better to have the centre of gravity moved back over the drive wheels. This would also help when she gets stuck on mid or soft grass because it's usually the front castor wheels that cause the problem as they do nothing except get stuck. Try looking at some of the larger companies on the web and you'll soon see something more suitable for her.
  • WheelyRachelWheelyRachel Member Posts: 67 Courageous
    @Catherineevans, look up handy are their chairs are fully modifiable from child to adult and are also on the mobility schemes 

  • tayajaytayajay Member Posts: 4 Listener
    Hi All, 
    I've been a wheelchair user since 2006 and what strikes me is how dull and boring wheelchairs are. Yeah sure we can bring them up with wheelchair guards which can cost a tidy packet. Wheelchairs I agree should be designed for the user of that wheelchair and designed around activities we do also. The prices are also extremely high especially for what it is. I researched recently how much it was going to cost just for a bog standard wheelchair and the price difference between companies was astonishing. I know what I need in a wheelchair but finding a wheelchair close to it is impossible. 
    Surely in this day and age when everything is so advanced technology wise etc are wheelchair still in the dark ages.



  • buffalobuffalo Member Posts: 19 Listener
    B"H My current wheelchair was the last one of its kind off the production line.  the local NHS wheelchair service has frankly told me they do not know how they are going to meet my needs when the wheelchair comes to the end of its useful term in about 6 months time.  I use wheelchair all the time _ do they expect me to stay in bed all day?!
  • Chris_AlumniChris_Alumni Scope alumni Posts: 695 Pioneering
    edited September 2016
  • monkamonka Member Posts: 10 Listener
    My son has a permobil wheelchair which was bought for him after a fundraising stint.  It is his second permobil wheelchair (the first being really good) and on the advice of the rep this time he went for the midwheeldrive.  It has been a disaster,  it will not climb up even the smallest ridge, the suspension is terrible and over the slightest of rough terrains it bounces so much that his hand is being shaken off the controller all of the time.  The problem with this type of chair is that you can't really try it out until it is built and then it is too late to retract your order.  We withheld the final part of the payment from Permobil as we were not satisfied with their commitment to getting the chair right and they sent us a debt collectors letter.  Pretty disgusting really as we were then forced to pay for the chair and have never been satisfied,  we are now having to consider fundraising again as the chair is totally unsuitable.
  • SeachySeachy Member Posts: 7 Connected
    Unfortunately to get the right chair you have to spend a small fortune. I want to teach my daughter to ride a bike but my everyday wheelchair is not good designed to travel at speeds and help do this. To buy the chair I would need to raise £8000 yes £8000 so I can travel quickly and through the rural countryside that I live in (Norfolk) with her. It is a real shame everything is so expensive to get a decent custom chair :-(
  • SteveOSteveO Member Posts: 4 Listener
    monka said:
    My son has a permobil wheelchair which was bought for him after a fundraising stint.  It is his second permobil wheelchair (the first being really good) and on the advice of the rep this time he went for the midwheeldrive.  It has been a disaster,  it will not climb up even the smallest ridge, the suspension is terrible and over the slightest of rough terrains it bounces so much that his hand is being shaken off the controller all of the time.  The problem with this type of chair is that you can't really try it out until it is built and then it is too late to retract your order.  We withheld the final part of the payment from Permobil as we were not satisfied with their commitment to getting the chair right and they sent us a debt collectors letter.  Pretty disgusting really as we were then forced to pay for the chair and have never been satisfied,  we are now having to consider fundraising again as the chair is totally unsuitable.
    Unfortunately your biggest mistake was  taking the advice of the rep. He unfortunately doesn't know enough about you to give you any advice at all. He's probably taken a few one or two day training courses which inevitably lean more toward seating configurations and the like. A wheelchair is a very personal thing but one thing you've learnt is that rear wheel drive is the best option for most users. Even so without exception every wheelchair comes programmed badly so that your granny can't hurt herself, for some reason the manufacturers seem to think that wheelchair users don't have the mental capacity to keep themselves safe. Imagine buying a 150mph car that the manufacturer had limited its speed to 70mph and altered the steering so that it only turns with a sligh delay? No you couldn't and they'd soon go out of business!!!! Well that's what wheelchair makers do as we're a bit of a "captive audience" so they can get away with it. Most things can be sorted with software programming but you need to know what you're doing and most of the companies won't sell you what you need. Check out this website (it's not mine but I am a member) you'll find lots of info you can use and also look at the message boards. www.wheelchairdriver.com
    Hope you find what you're looking for and good luck.
    Steve
  • monkamonka Member Posts: 10 Listener
    Thanks Steve,  my son had a front wheel permobil in the past which he had for many years and he has no complain't with that.  He used it at uni and when travelling and it performed perfectly well.  The trouble with having a complex neuromuscular disability is that you don't really know if it is suitable until they build it and you try.  At this time it is too late to change your mind at they have already had a pile of Money from you.   My son has struggled with the new penny and Giles controller also and has been told that they no long make the one that he had on the previous wheelchair so pretty much tough luck you have to have the one that is available now and that is the only one that is compatible with this chair.  Again they have you over a barrel.  The suspension in this mid wheel drive is terrible and it does not have the ability to drive over even the smallest ridge in the pavement.  My son is being shaken about all of the time and the suspension is such that he can't keep his hand in the very inferior controller.  Nightmare,
    Seriously considering fundraising and approaching charities again but I am not sure what time scale this is allowed in. 
    I will check out your website and thanks for pointing us towards it, many thanks. Monica. 
  • SteveOSteveO Member Posts: 4 Listener
    monka said:
    Thanks Steve,  my son had a front wheel permobil in the past which he had for many years and he has no complain't with that.  He used it at uni and when travelling and it performed perfectly well.  The trouble with having a complex neuromuscular disability is that you don't really know if it is suitable until they build it and you try.  At this time it is too late to change your mind at they have already had a pile of Money from you.   My son has struggled with the new penny and Giles controller also and has been told that they no long make the one that he had on the previous wheelchair so pretty much tough luck you have to have the one that is available now and that is the only one that is compatible with this chair.  Again they have you over a barrel.  The suspension in this mid wheel drive is terrible and it does not have the ability to drive over even the smallest ridge in the pavement.  My son is being shaken about all of the time and the suspension is such that he can't keep his hand in the very inferior controller.  Nightmare,
    Seriously considering fundraising and approaching charities again but I am not sure what time scale this is allowed in. 
    I will check out your website and thanks for pointing us towards it, many thanks. Monica. 
    You're very welcome, it's not my website. It's just one that I came across whilst trying to find answers to problems I was having. The forum they have is a great source of info. You can't buy anything from it and it doesn't promote any particular product but everyone on it is different and have vast experience to help you make better choices for your individual circumstances, they also tell you exactly how it is as they've been there and done it. I hope it helps point you in the right direction, I don't know much about fundraising but I'm sure there isn't a timescale. Hopefully you can raise enough money and also sell the chair your son currently uses to fund the right chair for him. I do believe a company called Gerald Simmons will allow you try certain chairs to find the right one but of course if your son requires a special order then maybe not, however, if anyone can it'll be them.
    good luck

    Steve
  • RomanpoelRomanpoel Member Posts: 1 Listener
    edited February 2020
    I bought power wheelchair for my dad and he is was surprised but through one months later said me - thanks! Very comfortable to drive around the house. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @Romanpoel and thank you for sharing this. :)
    Community Partner
    Scope

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