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    Electric wheelchair

    Currently I am in a self propelled wheelchair which is great in the house but an electric wheelchair would help in shops etc.
    I do have access to wheelchair services but it took them 2/12 to do a home visit and then 2/12 to deliver a wheelchair by which time I had bought 2 wheelchairs one for upstairs and one for downstairs so not holding much hope they will be quicker this time.
    Any info/ideas would be great xx

    #2
    Honestly, for a powerchair, you're much better getting the ball rolling with wheelchair services, not only because of cost but also, as motor neuron disorders are progressive and can be challenging to keep up with changing needs, having experts evaluating everything is important. By "changing needs" I mean that, as we progress, our seating position, head rest, leg rests, foot rest and drive controls may need changing/adjusting/adapting.

    Enlist all the help you can muster up to plead and beg for a quick assessment and delivery - you shouldn't have to, of course, but your experience so far hasn't been great 😩😡

    If you could maybe rent one to tide you over until your funded powerchair materialised, that might be a solution?

    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
      Hi Ellie
      Thanks I will look at hiring one the Pallative care nurse made the referral today so hopefully will be quicker than last time.
      ****** mobility have electric wheelchairs but say they need assessment not exactly sure what that is but will pop in and ask.
      I know I am inpatient but nurse saying she is sure I will make September has made me speed things up.
      Odd thing is I am tired but do not feel unwell and it seems odd to think of dying especially as I planned to live forever 😀

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        #4
        Originally posted by bromleycross View Post
        ... especially as I planned to live forever 😀
        Didn't we all 😍😍

        Hope a nice comfy powerchair comes your way very soon. 😘

        ​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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          #5
          Wheelchair services will have a specialist OT involved to make sure that you get a suitable chair for your needs, spending time in a badly fitted wheelchair would be very counter-productive to your health and well-being. It is a bit of a postcode lottery as to the service you will get from wheelchair services, the contract is held by third-party providers (in my case in Derbyshire it is a company called AJM Healthcare). Wheelchair services are notoriously slow and your OT should be referring you nice and early because of the progression involved. The NHS has a standard target supply window of 4 months and an urgent supply window of 3 months (pretty crap really but the market is sewn up between two major wheelchair manufacturers and they really don’t give much of a toss when it comes to urgency).

          As an aside I volunteer as a forum member for AJM healthcare both regionally and nationally to help improve their end-user experiences, if any of you out there deal with AJM and would either like to volunteer yourself or offer feedback on your experiences please drop me a message.

          James x

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            #6
            bromleycross were you a member of a profession before diagnosis ?I ask as my mother was and they had a charity that helps with aids and other problems, the mnda has limited funds, but a charity might get you a private assessment much more quickly😊

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              #7
              Thanks for your helpful advice I have given up on NHS so will need to buy one - just want to maintain my independence just hate being pushed in a wheelchair

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                #8
                Originally posted by bromleycross View Post
                ... just hate being pushed in a wheelchair
                +1 I hear you 👍

                Choose wisely and give it a good drive test indoors and outdoors, if necessary - you want a chair that can adapt to your needs.

                Enjoy your independence 😘

                ​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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                  #9
                  I agree that you need a wheelchair service to assess you for a wheelchair because our needs change and they can update your wheelchair or change to another chair later. Worth the wait but not a long wait. Make a formal complaint if they won’t prioritise you. Good luck, Lynne x
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                  I'm staying positive and taking each day as it comes.

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