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    ACT referral

    Hi all. My speech is on the way out. Expected so I asked my SLT for a referral to ACT. Unfortunately the one in Birmingham are not taking on new clients & I've been placed on a waiting list. Normally they do prioritise ALS patients however due to covid back log they can't and I've been told it will be a long wait.

    I don't want to put the frighteners out but those with bulbar/voice loss issues i would ask for early referral because without the assessment funding is virtually impossible.

    hopefully less densely Populated areas there is a better service.
    Again feeling the strain of a postcode lottery.

    Diagnosed May 2021 bulbar onset als.

    #2
    Morning Shelly. What’s’ACT?’ Please excuse my ignorance 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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      #3
      So long as your hands are okay I would recommend that you use a boogie board. I find keyboards difficult to use as my fingers don't always go where I want them to go. 🤔😁🤗😍xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Lynne K its access to communication.

        Matthew I can only type one handed as right hand useless.

        I have been so lucky to have found a 2nd hand eye tracker & system on this very forum.

        Its ok saying that you should not fund your own communication system but the reality is you do.
        Diagnosed May 2021 bulbar onset als.

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          #5
          Originally posted by Lynne K View Post
          Morning Shelly. What’s’ACT?’ Please excuse my ignorance x
          ACT = Access to Communication and Technology. Sometimes the ‘A’ stands for Assistive or Augmented, but basically it’s the same thing. 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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            #6
            Thanks Ellie and Shelly xx
            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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              #7
              Ah that explains it! When I have seen ACT referred to, I think in terms of acceptance and commitment therapy! X
              Diagnosed July 2020, ALS bulbar onset.

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                #8
                Originally posted by Heather R View Post
                Ah that explains it! When I have seen ACT referred to, I think in terms of acceptance and commitment therapy! X
                A service user would be very confused if referred to the wrong 'ACT' 🤩😏 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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                  #9
                  Could also be useful though! Xx
                  Diagnosed July 2020, ALS bulbar onset.

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