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    Update on bed

    Well its become laughable re nhs bed. So 3 months ago I was told I was getting an nhs bed. That came. Unsuitable mattress they said. No assessment done blah blah.

    So toto mattress came last week only to be told the bed they gave me is wrong.

    So we start all over again. I'm so tempted to throw it out for the tatman.
    Diagnosed May 2021 bulbar onset als.

    #2
    What a stupid situation. Was it organised by the hospice OT? That’s where mine came from and it’s fine. I do hope they sort it soon.
    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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      #3
      No tissue viability nhs team. My hospice don't have an OT.

      Couldn't organise a p*** up in a brewery.
      Diagnosed May 2021 bulbar onset als.

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        #4
        Well that has inspired me to put off getting Stephen one of those beds. We both have electric beds which get him in quite a good sitting position so I can get him out of bed. I don't know how much of an improvement a hospital bed will be. I'm thinking what do I do with old bed if they bring in new bed, not exactly a lot of room in this flat but if theres a problem like you're having I might regret getting rid.

        Does anything go smoothly? 🙄
        when i can think of something profound i will update this.

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          #5
          Oh FGS, this has gone from incompetence to a complete farce 😱😱😱😱

          Please tell me they left the Toto mattress with you Shelly...

          Originally posted by shelly21 View Post
          So toto mattress came last week only to be told the bed they gave me is wrong.
          Ordinarily I wouldn't ask this basic question but, given the litany of errors to date, are you satisfied that the bed is actually the wrong type?

          This is from the Toto brochure: "The new Toto Platform is designed for compatibility with any bed frame in any profiled or ‘rise and recline’ position, allowing for universal installation of the product."

          Did the give you a prison bunk bed or what?? 😏😘
          ​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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            #6
            Originally posted by denise View Post
            I don't know how much of an improvement a hospital bed will be.
            If Stephen's bed is a single size with head and foot risers, the biggest advantage of a hospital bed is that the bed itself can be lowered and highered, making for easier manual handling for both parties and, if needed, hospital beds provide easy access for portable hoists. xx
            ​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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              #7
              Ellie they are saying that the side rails are not high enough for the toto in case it throws me out the bed! Guess its down to threat of a claim. Its still here but been told not to touch it.

              The mattress is utterly used and bottomed out. So we need them to supply a new mattress. I am tempted to just use the toto. X
              Diagnosed May 2021 bulbar onset als.

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                #8
                On the company's website Shelly, it says that the Toto turning system goes under a mattress, so it isn't a mattress replacement system 🤔 What type of mattress will you put on top of your Toto and will that need to be pressure relieving?

                Sorry, confused.com 🥴😘
                ​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 gave up with my alternating Air bed because of the noise. Now have soft foam and happy. 🤗♥️🛏️😴xx
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #10
                    Ellie we have a pressure relieving foam at the minute so I presume that goes on top of the toto. When I watch YouTube videos with a person on it they have no safety side rails up.

                    Might be naughty and set it up 😁
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      Curiosity would get the better of me...

                      Did you see the recommended height of side rails on the video, have you checked if yours extend?

                      Yep, no side rails to be see in the brochure either - that would only scream spaz bed, wouldn't it 🤭
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Ellie you made me giggle 😁. But yes not a great look one being thrown out of bed on the sales pitch video 🤣.

                        We can't raise the sides any higher. I'm normally very rebellious but once there finally sorted this utter fault pas then the toto will be put on under a decent mattress without safety bars x
                        Diagnosed May 2021 bulbar onset als.

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