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    Suction machine

    We've had a suction machine delivered today. There isn't a probe with it. Are the probes normally delivered with the unit or do they come from somewhere else? We're going to get in touch with the OT tomorrow, but just thought I'd ask.

    It amazes me how they just hand out equipment with minimal training and expect you to figure it out.
    Each day is made easier with a bit of humour.

    #2
    Probe and spare tubes delivered separately. Just because it's an essential device doesn't mean it's going to be perfect. 😉

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      #3
      Well Louise has been phoning round this morning and getting nowhere. The social services people who supplied the pump said district nursing should supply them. District nursing said I'm not registered for care with them so they won't supply them. Waiting to see if OT can help.
      Each day is made easier with a bit of humour.

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        #4
        Depending on which council you are in you should have a community neuro team? They would have the necessary! 😁

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          #5
          Originally posted by GaryM View Post
          ... District nursing said I'm not registered for care with them
          Suction machine 'disposables' aside, it's worth being registered for community nursing - can your GP register you?

          Why is nothing ever straightforward 😟😟

          ​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
            Thanks for the replies Matthew and Ellie. I do have a community neuro team. I've contacted the OT and SaLT to see if they can help and Louise will be giving the GP a call. I agree with your sentiment Ellie, why does it have to be so difficult. You'd think registering with district nursing would be automatic, it's not like I'm going to get better.
            Each day is made easier with a bit of humour.

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              #7
              Gary, community health services have a responsibility to provide such equipment as a suction machine and the consumables that go with it, in my area the DN team would be responsible for that. Your GP should be able to advise you but whoever organised the suction machine ought to have sorted it.

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                #8
                Originally posted by SueM View Post
                Gary, community health services have a responsibility to provide such equipment as a suction machine and the consumables that go with it, in my area the DN team would be responsible for that. Your GP should be able to advise you but whoever organised the suction machine ought to have sorted it.
                It was arranged by the hospital via community health services, Sue. Thankfully, my OT has sorted it out. She told us that the respiratory physios should really come out and show us how to use it, but when we asked they said they're not doing home visits at the moment because of covid. Louise is finding it really hard having to deal with all this equipment at the same time as doing everything else. It was always my area of expertise, understanding machines and equipment. I could really have done with it today when I've felt like I'm being waterboarded with saliva.
                Each day is made easier with a bit of humour.

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                  #9
                  Gary this is so frustrating for you and Louise. If it helps at all in situations like this I used the phrase “at risk of” when talking to the medics. It almost always got the desired result.

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                    #10
                    Using the suction machine is simple if you do it yourself. It's amazing how quickly you lose the gag reflex. It's not so cool when others do it for you, think dentists. 😉

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                      #11
                      Gary, I know it's a poor substitute, but there are some good 'how to' videos on YouTube for most models of suction machines, even if they demystified the apparatus a little for you both x
                      ​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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                        #12
                        A bit of a result today. I had a return visit to Wythenshawe booked this Friday. I thought it was to check how I was getting on with the equipment. So, because I've not really been able to try the ventilator properly due to saliva we thought it made sense to postpone for a few weeks. Anyway when Louise phoned up she was told it was just to do a blood gas test on my ear while sat in the car. Louise said she wasn't happy going to all the trouble of getting me there just for that and the respiratory physio agreed to come to the house to do it. She will also bring a suction probe and show Louise how to use it. We couldn't really have asked for more than that, so smiles all round.
                        Each day is made easier with a bit of humour.

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                          #13
                          At last, Gary, somebody with common sense!! x
                          ​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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                            #14
                            GaryM excellent news 👍

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                              #15
                              Our suction machine was provided by the specialist respiratory nurse. I ring up when we need replacement nozzles and tubes. It sounds a bit yucky but we find that mould starts to appear in the tube! So nozzles and tubes need to be replaced regularly. The machine is brilliant as not only does my husband have profuse clear saliva, but has started to have sticky white secretions at the back of his throat as well. He has no use in his hands, so I need to use the machine but he has got used to me using it. We find it’s especially useful at night to clear any secretions at the back of his throat when he lies down.

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