I’ve had my wheelchair for 6 weeks. In that time, I’ve had to call out the Wheelchair Repairer three times. I’ve had and appointment with the Occupational Therapy Wheelchair Technician to try and diagnose the problem. After the third visit from the Wheelchair Repairer and several phone calls and emails with my Wheelchair Therapies, it was decided that my Kuschall K-Series needed to go back to the factory.
I had an appointment with my Wheelchair Therapist and the Occupational Therapy Wheelchair Technician on Friday to send my wheelchair back to the factory. I was glad my Wheelchair Therapist was there. When I saw the technician before, he tried to fob me off.
In the appointment, the Wheelchair Therapist and technical wanted to see the problems I’ve been having in person. I’d already sent them videos, which you can see below. The best way to describe the problem is that the right wheel isn’t responsive in the way that it should be. It’s kicking my arm back when I stop, which is jolting my shoulder. I’m also finding that sometimes I move the wheel, but the chair doesn’t move.
Then I developed a click, which you can hear clearly in the videos clips. I can feel the chair moving underneath me, Almost shifting from side to side. This is really worrying for a fixed frame wheelchair like the Kuschall K-Series. One night, I got out of my chair to sit on the floor. I noticed that my left caster wheel (the little wheel at the front) wasn’t on the ground. Dan moved my chair to get past. We heard a click and then the caster wheel was back on the ground. My theory is that something is moving in and out of place on my chair. When it’s out of place and my weight is further forward (like in the video on the slope), the left caster wheel will be on the ground, leaving the right main wheel off the ground.
To me, that would explain all of the problems I seem to be having. What’s moving in and out of place, I don’t know. But my theory seems more plausible than the technician’s opinion that I’m weaker down one side. I’m not, and this wouldn’t explain how I can move the wheel yet that chair doesn’t move! Ugh! I was glad my Wheelchair Therapist was there, so when he started down this line again she could steer the appointment in a more useful direction.
The Wheelchair Therapist and the Wheelchair Repairer have both been so helpful and supportive. Neither knows what’s wrong with my Kuschall K-Series, but both can see that something is. My wheelchair has been sent back to the factory to be either repaired or replaced. I’ve been told that this will take two months. I suspect this is because it takes two months to make an active wheelchair, so if it needs to be replaced, that’s the worst case scenario time frame.
In the mean time, I’ve been loaned a standard wheelchair, the Invacare Action 3NG. My Wheelchair Therapist tried hard to get me the assessment Kuschall chair for me, but unfortunately the powers that be, said no.
Apologies for the quality, these videos had to be taken quickly to be sent to my Wheelchair Therapist. You can hear the clicking in this video
I find this really hard to get my head round. After the first Wheelchair Therapist advised me badly and we went down the power chair route, I had to really fight for an active user wheelchair. The powers that be said that to have been eligible for a power chair I had to not be suitable for an active user chair. I had to see a consultant for him to okay the active user wheelchair and my new Wheelchair Therapist had to plead my case too. You can read more about this in my Wheelchair Services Update post. Yet it’s ok for me to be given a standard chair as a loan for two months? The reason I wasn’t given a standard chair in the first place was that it was agreed it wouldn’t be suitable for me.
My Wheelchair Therapist set the Action 3NG up as best she could for me. She managed to find one the right size, which at one point she didn’t think that she would be able to. My Wheelchair Therapist also changed the wheels so that I would have Supergripp handrims. This stops my fingers from bunching up when I self propel and means that I don’t have to grip as hard. She also made sure that my feet reach the floor, so that I can toe propel (moving the chair with my feet).
You can see the problem with the wheel kicking back from the front in this video
Despite the efforts my Wheelchair Therapist went to, I’m still left with a wheelchair that I will struggle to push myself. My Kuschall K-Series has wheels with a three degree camber (angle), making them easier to push. It’s also almost half the weight of the assessment Action 3NG and has an adjustable back rest. The Action 3NG only has one adjustment option, near the bottom of the backrest. It doesn’t give me the support I need. The caster (front) wheels are also catching on the foot rests, making moving around much harder.
Before I’d even entered my house with the loan wheelchair, I’d hurt my wrist. In the first 24 hours I’d had the Action 3NG, I’d subluxate my shoulder using a wheelchair that I’d been given by the NHS, despite them agreeing previously that a standard wheelchair is not suitable for me. As a result, I’m not able to move around my house as much as normal, because I’m only able to use one crutch while my shoulder recovers. I’m also in a lot of pain with my elbow, both hands and back from using the loan wheelchair.
You can see the problem with the wheel kicking back from the side in this video
I don’t know what I can do from here, except suck it up for the next two months. I’ll have to only use the loan wheelchair when someone can push me. It’s clearly not safe for me to use independently. I’m very thankful that I’ve got my scooter, otherwise I’d be housebound again. I’m not looking forward to going to Dan’s school musical. I don’t want the kids to see me having to be pushed most of the time. I can’t remember what the floor is like. Hopefully most of it is laminate flooring, so that I’ll be able to manage around the theatre independently. I’m concerned about our holiday in March too. I doubt I’ll be able to use my scooter round the hotel. So I’ve have to rely on being pushed most of the time, which is no fun at all.
Hopefully now that my wheelchair has gone back to the factory, it will be repaired or replaced quickly. But with my experience of wheelchair services so far, I don’t expect it to.
You can see the problem I’m having with the wheel moving but not the chair, when on a drop curb, in this video
If I’m honest, I’m not sure whether I would prefer my wheelchair to go back to the factory to be fixed and my wheelchair be returned sooner, or whether I’d rather wait longer and get a new chair. My worry with my chair being fixed is that I could have the same problem again in the future. I know this is unlikely, but I haven’t exactly been lucky with my wheelchair so far.
Update: My wheelchair was returned to me after 4 weeks. Unfortunately, the tires were low on air (they weren’t when it went away) and the left break hadn’t been put back properly. The break closed lightly on the tire, but not enough to stop it from moving. I found this out when on a slope. I put both breaks on, but started to roll downwards! The force of the left wheel was enough to pull the right wheel along with it, so I suspect the right break should’ve been on a little tighter too. The wheelchair technician came out to fix this, but it was disappointing that my chair was returned from the factory in an unsuitable state.
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Oh for heavens sake, I bet if the technicians & nhs wheelchair team had to use one and had EDS etc, they might understand. Do people listen anymore?
I think not, most of the time. Im still waiting for a referral re my spinal pain, each hospital keeps passing the back due to funding. If only we were rich eh? It seems the wealthy just stay healthy. So hard when you have to rely on an ever crumbling ohs.
i do hope you get your chair fixed soon, and that you don’t hurt yourself anymore hon.
H x
It’s so frustrating. My Wheelchair Therapist is great, but it’s her bosses that have the final say. I get the impression they sit behind a desk all day looking at budgets. The struggle to get the active chair and then being given a standard loan chair is a complete juxtaposition. But what can I do!?! From now on, I’ll only be pushing myself on completely flat surfaces and relying on other people for everything else.
I’m so sorry you’re stuck in the system too, all because of money. I’m starting to wonder whether it’s why I’m waiting for a couple of referrals too. It’s not right. We have a hard enough time as it is, without having to push so hard for the care we need. The really silly thing is that the NHS could save itself money by helping us as early as possible, before things get worse and we need even more help! Xx
So sorry for this Tania, it’s awful. I hope your wheelchair is fixed soon and you will be able to enjoy your everyday life and your holiday in March. Do you know how long it will take them to fix it?
Yiota
Thank you so much! They’ve advised that my chair will take two months, so I won’t have it back for my holiday. I’m hoping that’s a worst-case-scenario, incase they need to make a completely new chair. Xx
My NHS chair is the same one, Action 3NG, it weighs about 15kg and is impossible for me to push. Mine lives in the shed as a spare in case something goes wrong with my own. Its the lightest medium-active chair there is and NHS just won’t do active chairs. The NHS policy on wheelchairs is batshit. Fitting only for current “medical need” and not looking at social needs; or even more stupidly the fact that with conditions like EDS the wrong chair can cause more irreparable damage and need replacing in a year anyway.
I wondered if the chair you were given was the Action 3NG. I remember you saying that the wheelchair you were given lives in the shed because you can’t push it yourself. I’m really thankful that I live in an area that will fund active chairs. I’ve had an awful experience with the service and had to work out the best chair for me without their help. But I’m so thankful that they have funded it. The best advice in the world is no help if the funding isn’t there to get the fight chair.
I’m still struggling to get my head round how different areas have different rules and can fund different things. The active chair brand offered where I live is Kuschall, but in the county next door it’s Quickie. But I don’t understand how or why.
I completely agree with you that the fitting only for ‘medical needs’ is stupid. When I was fighting against the power chair, I was told that it didn’t matter to them that it wouldn’t go in our car. They were happy to trap me in my home town and leave me to have to rely on an unsuitable wheelchair and other people for everything we need a car for. Which is most things, because we live in a small town. My argument is that ‘social needs’ affect psychological well being and therefore have a significant impact on ‘medical needs’. But arguing this is net to impossible. The system is broken and needs fixing. Xx