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    Wetroom and house adaption

    It seems incredible complex and slow for local authority to work out if or when they can help and who pays. Fortunately they now seem to be making process so it might be ready for when my mum needs it.

    #2
    Michael T A warm welcome to the forum, Michael, sorry about your mum's diagnosis.

    The next hurdle is to start works *before* your mum needs it because, as we know from many forum members, physical ability can sadly change quickly, and living conditions can become unsuitable, leading to a crisis situation - sorry for being so blunt... (Bear in mind that it can take a while to find builders etc.)

    Love Ellie 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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      #3
      We’re very lucky here in Suffolk. The council has a fast track non means tested grant system that is very efficient.

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        #4
        We've hit a crisis situation and it's a nightmare. Suddenly everything went wrong in 2 weeks. It's all so unpredictable. 😐
        when i can think of something profound i will update this.

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          #5
          I had quite a protracted "discussion" with my local authority (Wolverhampton) about why they don't publish their means testing criteria, because had i known what the criteria was I wouldn't have wasted 12 weeks waiting for a decision on installation of ramps and Geberit toilet. Both of which were desperately needed by the end of the 12 week period.

          Basically the rules for our age group here are combined household income of c£23k and joint (including adult children living at home) household savings of £6k. Rules differ in different areas.

          Had I been able to access this information i could have got both done, as it happens within a lot less time than 12 weeks.

          Upshot of discussion with the council is that the population is not capable of understanding criteria so they choose not to publish it.

          Not a good example of transparency in the public sector.

          Good luck with your application.
          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

          Respiratory and blood gases still within normal range.

          No speech but sense of humour still fully intact.

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            #6
            You are absolutely right MMG - the lack of transparency is absurd...

            Originally posted by MMG View Post
            I had quite a protracted "discussion" with my local authority (Wolverhampton) about why they don't publish their means testing criteria
            Did you ever get an explanation? 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
              Michael T- the council decided on the spot we wouldn't get a grant (similar criteria to MMG ) which was incredibly disappointing as I have lost my salary and have a large mortgage still to pay. They don't look at outgoings or dependents.

              However they did find a small "hospital discharge" grant that we were eligible for and it has helped cover some of the cost of ramps and wet room. But has taken 6 montgs to organise and work only started last week, by which time the situation was desperate.

              My advice is to keep on at them and investigate other possible grants too. Good luck xx
              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                #8
                Ellie Did you ever get an explanation? xx

                Only that its "complicated,"

                Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

                Respiratory and blood gases still within normal range.

                No speech but sense of humour still fully intact.

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                  #9
                  Originally posted by MMG View Post
                  Only that its "complicated,"
                  🙄
                  ​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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                    #10
                    Thanks everyone, I am still finding my mum's diagnosis very hard to take. Obviously it's whole lot worse for her.
                    After a lot of pestering the council have clarified that there is a grant from central government so the design of the wet room and lift can start but I think it will be 4 months before work starts. Mum has had the condition for 3 years (took ages to diagnose as several clear EMGs) and so far it is progressing relatively slowly fortunately.

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                      #11
                      Of course you're struggling to process the news Michael, you'd have a heart of steel otherwise - it's your lovely mum; it's a devasting illness.

                      Originally posted by Michael T View Post
                      Mum has had the condition for 3 years ... and so far it is progressing relatively slowly fortunately.
                      In the MND world, that is 'good news', if you can see it that way. Long may it continue as slow progression. 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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                        #12
                        Sorry for your mum's diagnosis, it's a really difficult situation to deal with. 🤞the progression remains as slow as possible and the wetroom and adaptions go smoothly from here on.

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                          #13
                          Thank you I certainly hope so!

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                            #14
                            Originally posted by Ellie View Post
                            Of course you're struggling to process the news Michael, you'd have a heart of steel otherwise - it's your lovely mum; it's a devasting illness.



                            In the MND world, that is 'good news', if you can see it that way. Long may it continue as slow progression. xx
                            Thank you! It really is an awful illness and very hard to watch someone going through it. Of course much much worse for the person themselves.
                            Definitely taking slow progression as good news and hoping it doesn’t accelerate. Also maybe the Amylix trial may help a bit.

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                              #15
                              Originally posted by Michael T View Post
                              Also maybe the Amylix trial may help a bit.
                              Yes, this phase (Phoenix trial) of AMX0035/Amylyx is the most anticipated trial for some time now - has your mum been put forward as a potential candidate?
                              ​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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