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    Appropriate wheelchair

    Good evening all, we’re having a bit of a nightmare with our local wheelchair service provider. My wife (Caroline) was assessed for a motorised chair back in February. It was approved and funded, a further assessment was made to ensure the chair would be fit for purpose and to meet Carolines needs. Obviously it took a while for it to arrive but when it did we had high hopes that it would improve things for her and me as I currently use a manual chair that we purchased to get her about and having a permanent back injury makes it difficult at times. The the new chair is a Quickie Q400, it looks great however….
    despite being measured for it and highlighting her lack of use in both arms the technician/OT tried to make Caroline fit the chair and not the other way around. This ended in tears and frustration. The chair was taken away to be ‘modified’ a month later it was returned this time with a 4” deep cushion that is 20” wide, all well and good but it had been forced into the chair that was only 19” wide and now made the arm rests sit a couple of inches above the cushion. Needless to say, more tears. What made it worse was the technician/OT appeared to blame this on Carolines worsening condition!?! Rather than admit the chair modifications were wrong or hadn't been done.

    So now we have an expensive chair that we cannot use and the service provider want a further review, this is getting us nowhere.

    May I ask those that have motorised chairs, what you have and any adaptations for specific needs like Carolines that have been added, as we really want a chair that meets her needs and not one that she is being encouraged(?) to accept.

    Sorry for the rant.
    Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

    #2
    Ah, that's utterly appalling service for Caroline, shame on that so-called wheelchair specialist 😡😡🤬🤬 It's no wonder you're fuming...

    Can I take it back a step Martin - the MNDA, in conjunction with 2 manufacturers, have come up with a Powered Neuro Wheelchair which have specific specs more suitable for progressive neuro conditions (chairs are the Quickie Salsa M and the Ottobock B4) Of course, there are lots of other chairs, but I wonder if either of these were mentioned?

    Anyway, you are where you are, so do you know if it's a basic Q400 M, a Lite or a Pro? Caroline needs a chair for a high enough clinical need, for example, tilt in space function.

    The cushion: oh for goodness sake, a 20" cushion is clearly *not* going to fit a smaller seat frame. Is the armrest not height adjustable? It is not safe for Caroline to have nothing by her hips to stop her leaning over or falling out of the chair - that's simply unacceptable.

    They will have to return and either fit a proper cushion and make the necessary adjustments *with Caroline sitting in the chair* - how on earth could they justify adjusting the chair without her present 🤔

    I am sorry for my ranting, things like this really annoy me. I'm afraid you're going to have to be like a dog with a bone on this and not take No for an answer.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Rants are good for the soul 👍😍😘🤗xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Originally posted by Ellie View Post
        Ah, that's utterly appalling service for Caroline, shame on that so-called wheelchair specialist 😡😡🤬🤬 It's no wonder you're fuming...

        Can I take it back a step Martin - the MNDA, in conjunction with 2 manufacturers, have come up with a Powered Neuro Wheelchair which have specific specs more suitable for progressive neuro conditions (chairs are the Quickie Salsa M and the Ottobock B4) Of course, there are lots of other chairs, but I wonder if either of these were mentioned?

        Anyway, you are where you are, so do you know if it's a basic Q400 M, a Lite or a Pro? Caroline needs a chair for a high enough clinical need, for example, tilt in space function.

        The cushion: oh for goodness sake, a 20" cushion is clearly *not* going to fit a smaller seat frame. Is the armrest not height adjustable? It is not safe for Caroline to have nothing by her hips to stop her leaning over or falling out of the chair - that's simply unacceptable.

        They will have to return and either fit a proper cushion and make the necessary adjustments *with Caroline sitting in the chair* - how on earth could they justify adjusting the chair without her present 🤔

        I am sorry for my ranting, things like this really annoy me. I'm afraid you're going to have to be like a dog with a bone on this and not take No for an answer.

        Love Ellie.
        Thanks Ellie, I’m pretty sure its a Q400M with tilt and recline functions. The arms have been raised as far as possible but this is still not enough as they are too short and positioned at the back end of the chair therefore giving little or no support to her forearms that dangle lifelessly over the edge. We were promised ‘gutter’ arms but they did not materialise. I have adjusted the control arm, but in fairness this has not helped much, Caroline can turn the control stick left and right but hasn’t the strength to push forwards or backwards. There is an additional ‘attendant’ dual control on the rear that I use although it’s very difficult to steer from the rear.
        Husband and carer to my wonderful wife diagnosed with ALS Oct 20.

        Comment


          #5
          OK, so that chair should be pretty much customisable to Caroline’s needs, if it is not, it is incumbent on the provider to find a solution - walking away as they have done is simply not an option.

          I had a look at the spec for the Q400 M:
          Armrest is supposedly adjustable to 38cm high, which, allowing for a 10cm cushion, *should* allow the armrests to sit well above Caroline’s hips. This height cushion is not unusual, my own one is the same height.
          Armrests of 40cm are available - I wouldn’t rush for the gulley type armrests as they are unforgiving moulded plastic and can lead to pressure areas on elbows, arms and wrists, if muscles shrink and lose their padding properties. Padded are best, though obviously they need to be the correct length... (As a comparison, armrests of 41cm are available on the Quickie MND Neuro chair.)

          Hopefully someone with a Q400 will reply, or someone with a Salsa might have had a similar issue with their armrests.

          I had strength issues driving my Invacare chair and, with a change of joystick (those rubber pleats interfered with my hand position) and by swapping the armrests to the other sides, bringing the drive control about 6cm nearer to my hand, I could drive the chair using solely shoulder strength. I know Caroline’s chair is a different brand, I’m saying that solutions don’t always come from the User Manual.

          Bottom line is, they need to come back and sort it.

          Love ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Hi Martin,

            I can't believe that they have left you without sorting this out. I have a Salsa mini and I have had lots of adaptions to it as I have progressed. It has been my legs, hips back etc that has been the problem and I have had different cushions, backrests, footplates and side padding. Wheelchair services come to the house and appreciate it would be very hard for me to be without my chair. On one occasion they changed the footrest and later I decided I liked the original one best and they came back and changed it back. ( lots of coffee and cake ready for them !) They also came out very last minute to change the battery when we discovered it wasn't airline friendly.

            Surely it is up to them to solve the problem.. Our MND effects us differently so its not a one size fits all. We don't know what will work , is comfortable or available until we've tried it for a few days.

            Good Luck to you and Caroline,
            Love Debbie x

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