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Accommodation Rant

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    #16
    This is through the council. In our area, all housing is through council including housing associations.

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      #17
      Ah I see. Yeh doesn't surprise me. We've been signed up to the various housing registered for 6 months, so most likely we'll be waiting much longer too👎

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        #18
        Tess, I love the way that you turned your frustration and understandable disappointment into humour. I’m afraid that I’m going to make your council look even worse with the following story:

        My granddaughter and her partner bought a new built 2 bedroomed house in Liverpool about 3 years ago. She told me to come visit so I asked about door widths and the accessibility of their bathroom. I was impressed to hear that every home on that site has wheelchair access on their ground floor, including the ground floor loo. The builders stated that they do this so that visiting wheelchair users are catered for. How sensible. When I visited I saw a well planned ground floor that wheelchairs can get around. These builders are obviously leaders in their field. Councils would do well to copy them and also make it law that on every new build there had to be one (small sites), two ((larger sites) or several disabled access bungalows with wet-rooms. Lynne x
        Last edited by Lynne K; 17 September 2020, 07:48.
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
        I'm staying positive and taking each day as it comes.

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          #19
          Hi Bexx, I've been wondering how you're getting on, I see you've had your hands full...

          Surely there's an appeals process? I wonder if your local hospice Social Worker (or whoever) could advocate on your husband's behalf? Or his MP? Sounds like you may need to make a lot of noise 😣

          Best of luck.
          ​​​​​​​
          Love Ellie.
          ​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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            #20
            Lynne that's very impressive! The dream x

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              #21
              Hi Ellie.
              Very sweet of you. I think of you often even though I don’t know you, I feel like I do through reading your posts.
              the thing is that’s the first property in a year that has been remotely appropriate. The ‘bidding’ on it ended today so it will be allocated to someone this week. There may not be another suitable property in time for my husband. He isn’t expecting to be here in another year. I will ask to be reassessed but it feels pretty pointless now.
              Every day is a battle but I’m pretty tenacious.
              I hope you are doing as well as you can be. It must have been a strange time for you having everyone home. Are your family back to work/education now?

              Rebecca

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                #22
                Tess, we are located in the south east so particularly hard to be rehoused. Hopefully you have more luck wherever you are. Hassle everyone you can as often as you can. MNDA will help if you ask.

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                  #23
                  I'm sorry about your accommodation is unsuitable for your husband, Rebecca - the situation is awful and adding so much stress to an already stressful life.

                  Thanks for asking about my family - the upside of lockdown was that I had the kids here everyday, a real Brucie Bonus for us all! My daughter went back to school in August, so far so good, and my son heads back to Uni soon. It's been nice having the other half here too but he may disagree!!

                  Hope your kids are settled back in school too - it's a bit nerve wracking I'm sure thinking of what they might bring home, but life must go on. I don't want my kids to have to worry any more than they do.

                  Look after yourself.

                  Love Ellie.
                  ​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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                    #24
                    I was just going to write something on similar lines, I have felt so stressed recently concerning accommodation. I have only been diagnosed a few months, but already the OT and the council adaptation team person have been out, and told me how bad my terraced house (which I am lucky enough to own) is for adaptation. I obviously want to prepare for the future whilst I can, but it is difficult because it is mainly my speech and hands that are affected, and my legs only beginning to show signs. But I am advised to move to wheelchair accessible accommodation whilst I can, it is a matter of months. I am told forget council for this, hopeless, and in this hilly city the flats rarely have lifts, and bungalows I can afford are like gold dust. If I can't get anywhere, I will be unable to get out of the house, and to get to the bathroom, only a lift up from dining room to bedroom will apparently do. I was wondering how you all manage!
                    Diagnosed July 2020, ALS bulbar onset.

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                      #25
                      Hi heather
                      i read the advice to move as soon as possible and wish I had taken it. Now we can’t move anywhere that doesn’t already have all the adaptations so our options are non-existent. A lift is not so bad though if that’s all you need

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                        #26
                        Ellie
                        I can relate to not wanting your kids to worry any more than they already do. They need a lot of reassurance in this time. I work from home now so that my husband is never home alone. I can’t imagine how you deal with your circumstances.
                        My daughters have just started back at school but today the high school have had a confirmed case of covid so that year group has to stay home. It’s not my daughters year but how long before it is? Thankfully she is in a separate building so hopefully not too much to worry about for now .

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                          #27
                          when i read about all the problems you guys are having i feel like throwing in the towel before i have even started.

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                            #28
                            Denise
                            People are always saying to me, I don’t know how you cope! You don’t get a choice, you just have to get on with it. Some days are harder than others but there’s no option of throwing in the towel. You just have to balance it as much as you can with moments you wouldn’t want to have missed.

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                              #29
                              denise Husband has been only diagnosed 2 months but have cared for parents with long term degenerative conditions. Get help from the phone line, contact MPs and stuff. Concentrate on what you can do and vent on here. Just found a phone number for Disability Rights 0330 99500404, not used it. Not religious but the Serenity Prayer is good to use as a flow chart, can you accept the things you cannot change (like the weather, illness etc) and the courage to change the things you can. Husband and I are eating like kings it is pizza and chocolate at the moment. Just glad he is here with me and can eat.

                              Good luck everyone

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                                #30
                                Pizza and chocolate sound good

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