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Accommodation Rant

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    Yeah like pizza and chocolate


      Another month passes and still searching.

      The new problem we're finding is the one suitable accomodation is an absolute sh*[email protected] In a dodgy area. So the new argument would be is that there is technically accomodation but nothing decent.

      I need to win a lump sum right about now. Trying to be open minded and not a snob about it but there's no chance we're moving to a high rise with a bad reputation that the online he's tells us it was set on fire 2 years ago.

      I cannot leave someone who can't defend themselves or run from danger by themselves l, in a dodgy accomodation.

      I hope others are having more success than us right now.


        My thoughts are with you Tess I hope something turns up xxx


          Tess you need to insist on a house or a ground floor apartment. This horrible disease takes away your ability to walk and anything other than a house or ground floor apartment will make you housebound. Wishing you well.



            Tess, you're in Scotland, I think? I presume you've tried their advocacy service?

            I really feel for you and just hope something turns up soon and, as Richard says, ground floor is the only viable option.

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


              Originally posted by Tess View Post
              Another month passes and still searching.
              I feel for you, I am still searching for a private rent with ground floor bathroom. Given up on Bungalow in Wales, as they are being snapped up very quickly.

              Viewed in Northumberland and Cumbria (they have 2 floors but downstairs bathroom - cheaper and we are going to use some of the PIP for short fall), driving hundreds of miles and leaving husband with sandwiches and protein drinks.

              OT and physio, agree that our terrace house is unsuitable but their hands are tied, as we have told them we are moving out the area. So we can't get riser chair or bidet as moving, surrounded by boxes. Now worried that lock downs will halt things.

              Husband has bruise on back from bumping down the last 5 steps.

              And I can't find were I put the hair clippers so he is looking like a grumpy, wild man.

              It takes our mind off things.


                Oh Tess and Dee,

                I really feel for you. Its outrageous that carers have to battle unsuitable accommodation as well of the stresses of MND. I really hope you get sorted soon. It's so important to be on the ground floor and not be reliant on a lift.

                Fingers crossed,
                Love Debbie x


                  Never appreciated before how much wheelchair accessibility is lacking, you really have my sympathies. The most vulnerable and stressed least able to make a lot of noise about it. x
                  Diagnosed July 2020, ALS bulbar onset.


                    I sometimes think how nice it would be to live in a society that looked after those in most need, instead of one that seems to reward the selfish and greedy. We are fortunate to have moved into our dream house two years ago, but it's going to be very difficult, if not impossible to create a downstairs bathroom without ruining the kitchen. I think I'm going to end up in a tin bath in the kitchen. Although my wife did say that in summer she might just put me in the garden and use the hosepipe. Seriously though, I wish those of you trying to find suitable accommodation the very best of luck. Life shouldn't be this hard for people who have done nothing wrong.
                    Each day is made easier with a bit of humour.


                      I've not been on here in a wee while.

                      Accommodation update!!

                      We have been accepted for ground floor accommodation with move in approx mid December. Kinda came out of the blue and all of a sudden we're so comfortable that neither of us wanted to jump at the offer- but we really needed to and have accepted it. Waiting for the housing folk to give us the 4 week notice and hopefully we can do a week overlap so I can go paint and move furniture in etc.

                      Downside it's not in our hometown and so family will still have to travel 30/40 mins to us, but upside is it's a ground floor flat, wet rooms shower, wheelchair adapted and brand new. December will be the first time he leaves the flat since March (time to feel the fresh Scottish air) and will definately need to organise a wheelchair for this.

                      But good news in what seems to be a grim year already on top of MND.


                        Oh that's fantastic news Tess, sounds ideal accom too - and brand new, woohoo!!

                        Has your partner had a wheelchair assessment or is he waiting for a chair to be delivered?

                        Congrats again to you both.

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


                          Thanks Ellie. No he hasn't- simply just myself doing an observation assessment hahaha. I walk with him from bedroom to computer to bathroom and so I know going from the flat to a car will be far too much. Not enquired yet as we've not been given confirmation date for move in. They said we'd get 4 weeks notice so we can hand in the notice here. They said they hope to have things sorted by mid December for us, but there is a chance that it may be January.

                          Will need a two man team to carry him down the stairs here too, or maybe a one man team if I build strength lol. But a little bit of light. Always a bitter sweet with everything.


                            Good news, Tess.

                            If you're struggling to get a wheelchair in time they can usually be hired by the day.
                            Each day is made easier with a bit of humour.


                              Good morning,

                              I've just been skimming this thread which I can't believe I haven't seen already.

                              I've been deep into the Act to Adapt campaign that the Association is starting – see here


                              I'm counting my lucky stars that we had the combination of slow MND, a perceptive occupational therapist and equity to play with that allowed us to move south with enough money to do the work we need to do (I hope).

                              I hope because we are having real trouble getting anybody to quote for the work we want done.

                              I have significant frustration that all 3 sectors of housing in the UK – public (including housing association), private rented accommodation and owner occupied accommodation all have their different and significant barriers to helping people with disabilities find appropriate accommodation.


                              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                              "Things turn out the best for people who make the best of the way things turn out"


                                Tess I am so pleased for you. It's so wonderful that someone has such good news.
                                Denise 😗