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    Adaptations misery

    Well since waiting since Aug/Sept last year for my adaptations looks like I won’t be getting them done 😡 apart from the lift which is half done. Phil has just been on to the council who are saying they can’t get contractors to do the work 🤷‍♀️ Obviously it’s because they don’t pay them enough it’s a joke. I’m so annoyed right now 😤😤😤
    Janette x

    #2
    Hi Janette..
    is it worth getting Phil to talk to somebody senior in the correct department(get name and email address)10 months wait for person with MND is not acceptable.Also once you get a name and email could your OT also ring/ or email to give them a push.( or hospice nurse..or any professional involved with your care)

    Also mention the lift is no good to you half done whilst coping with a progressive disease.
    You could mention you will contacting local councillor to investigate when they intend to progress the work.?
    Also you may intend to put in a formal complaint and ask for a copy of the complaints procedure to be sent to you by council.

    The council won’t like it if you ask local paper to run the story either.
    Good Luck Janette..I know having the lift and my wetroom done has made life so much easier for us both.
    Best wishes
    Mary

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      #3
      Oh Janette, I don't know what to say 😪😪

      I know builders etc everywhere are very busy after lockdowns, but I wonder if Phil could use his FB skills and post your 'story', maybe some contractor with a heart would take it on. IDK if you'd go to the local media, it's privacy v necessity.

      Big, big hug 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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        #4
        Hi Janette,
        you could also mention to the council you intend to approach the local ombudsman for the council and social care about the lengthy delay which in turn is leaving you unable to use lift to access upstairs?? Add how awaiting agreed adaptation is affecting you..ie can’t use bathroom etc.
        Hope you don’t mind me making suggestions
        Mary

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          #5
          Hi Mary, we’ve tried all sorts we’ve had Wythenshawe on to them MND on to them the OT, our local MP.
          Phil spoke to the senior manager this morning he told him to put a formal complaint in but it only goes to him anyway 🤦🏼‍♀️So Phil has sent one anyway. The rest of the lift is being done 11th august that means we’re still waiting for ramps doors widened and wet room. So I think the next step is the papers thanks Janette xx
          Janette x

          Comment


            #6
            Originally posted by Ellie View Post
            Oh Janette, I don't know what to say 😪😪

            I know builders etc everywhere are very busy after lockdowns, but I wonder if Phil could use his FB skills and post your 'story', maybe some contractor with a heart would take it on. IDK if you'd go to the local media, it's privacy v necessity.

            Big, big hug xx
            The media is the next step Ellie 🥴 x Janette
            Janette x

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              #7
              Desperate situation, desperate measures, Janette.

              Best of luck xx
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Oh Janette, what ridiculous Council you have. I went through similar when we came to this flat. Our wet room wasn’t usable because water ran into our hall every time the shower was on. The front door and ramp were too narrow. This was supposed to be an adapted ground floor flat. Anyway I exhausted my patience ringing the repairs department, started emailing higher ups. Eventually put an official complaint in stating that I would next be contacting my MP and the local paper. In the end I was contacted by the most senior manager of the repairs department (he’s an ex Councillor so knows his way around) and he was amazing. He got all jobs done, gave me his card and said if I needed anything else then contact him directly.

                Those who shout louder tend to be heard. Good luck with a quick response after your complaint is sent. Love 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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                  #9
                  Hi Lynne they are a joke, Phil has been in touch with everyone including our local MP the next step is the media. I was completely housebound until a good friend made me a small ramp in the back so I could at least get in the garden, I have to use next doors path if we have to go out anywhere 🤦🏼‍♀️ Glad you got sorted Lynne 😊 I can’t help feeling it will be too late time is running out 🥺 xx
                  Janette x

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                    #10
                    Stay Strong and never let the Bstards grind you down. We are always here for you. 👍🤗😍😘xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #11
                      Oh Janette.. how awful for you ! You must be so fed up and that's putting it mildly !

                      Its totally unacceptable that you have to contact the media and forfeit privacy to draw attention to this situation.. shocking ! I think I'd do the same, however.

                      Sending you big hugs ,
                      Love Debbie x

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                        #12
                        Thank you both 🤗 xx
                        Janette x

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                          #13
                          Nettie Hi I echo what others have said. I work for a L.A. and the minute we get a councillor enquiry we drop everything else and prioritise.
                          Sounds like you've been given the run around big time! Shame you're left with the only option of the press. Hope it's resolved soon 👍
                          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                            #14
                            Janette so sorry that you still have to fight for this. Best of luck with the press, let us know if what the press can come up with, and we'll have fingers crossed for progress. Love, Heather x
                            Diagnosed July 2020, ALS bulbar onset.

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                              #15
                              We got a response from the council earlier this afternoon and they said they’ve given the original builders 2 days to come back with a quote for the work 🤔 we’ll see but I’m not holding my breath 🤨 thanks for all your responses love Janette x
                              Janette x

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