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    Wheelchair services

    So my saga of disappointment of departments goes on.

    I was referred to wheelchair services last July. They dropped of a manual basic wheelchair. It wasn't used until a month ago. My small fold up electric chair started being temperamental so I started using the manual chair. My g.p referred me for a power chair. Waiting for an assessment.


    I thought it was a bit snug. I sort of got stuck getting out of it. Then I saw lettering namely the letter 'J'. They've only given me a child's chair.

    I emailed. They stated that it wouldn't bring my assessment forward. I said it needed escalating as to why a 5'6 12 stone adult was given a child chair and whilst waiting for my assessment I needed a adult chair. I was told they have non in stock.

    Its been over a week. I stupidly used the electric one yday as I so wanted a day out. Well it tipped backward and head hit tarmac. Luckily no blood just a very sore head. No concussion. I can't blame wheelchair services for me using a chair thats not working properly.

    But if my track record repeats itself im in for a long wait. My bed took 3 months to get sorted.

    we are going to ask the association for help re liaison with wheelchair services.

    Diagnosed May 2021 bulbar onset als.

    #2
    Oh shelly.

    Our disasters just keep coming. I cant believe they've given you a kids wheelchair but nothing surprises me. Is it possible to hire a wheelchair? Can you get a grant from mnd association for an electric chair? You might have only banged your head but it had a potential to be a lot worse.

    Love and hugs
    Denise xxx
    when i can think of something profound i will update this.

    Comment


      #3
      denise if they give me a manual chair I will at least be able to be pushed by tom. The electric chair is being repaired this week and that helps inside.


      The association did offer any help so we will ask them to liaise with wheelchair services. I know I'm in for a long wait but in the meantime I need a suitable outside chair.

      We are just fighting battles.

      Thank you xxx
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        Think you can hire from the red cross. I'm sure that's what we were told when they said there was a 5 month wait for an inside chair.
        when i can think of something profound i will update this.

        Comment


          #5
          £20 per week. Might be worth a call.
          when i can think of something profound i will update this.

          Comment


            #6
            shelly21 Did you not ask Tom that question - does my bum look big in this? I'm sorry, if I don't laugh, I'd cry.

            And then to be told to more or less make do because they've no adult chairs in stock 😲😟

            If you want to copy and paste the NICE Guidelines regarding provision of wheelchairs to people with MND to put in an email to Wheelchair Services to remind them, they are:

            "Refer people to wheelchair services without delay if needed. Wheelchair needs should be assessed and a manual and/or powered wheelchair that meets the person’s needs should be provided without delay. [new 2016]

            Ensure that equipment, adaptations, daily living aids, assistive technology and wheelchairs meet the changing needs of the person and their family and/or carers (as appropriate) to maximise mobility and participation in activities of daily living. [new 2016]"

            And I agree, get the MNDA involved., they have done a lot of work on the wheelchair front. xx
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              Ellie we laughed lots. I nearly wet myself laughing when tom tried to yank me out of it.

              Thank you for the info. They initially told me I needed to get my gp to tell them exactly what I needed in a wheelchair. I mean how would a gp know what a neuro mnd patient would need. Isn't that what assessments are for?

              My gp was great as I emailed him an attachment thats available on the mnd website. It makes mention of what you forwarded on your post.

              X
              Diagnosed May 2021 bulbar onset als.

              Comment


                #8
                shelly21 I don't know if it's nationwide or suitable but when I broke my foot a few years ago our local Lions group leant me for free a wheelchair to use for 8 weeks. At the end of the loan we gave a small donation I remember us going Xmas shopping and with all the shopping bags hanging off the handles I tipped backwards also! 😅

                Comment


                  #9
                  shelly21- somehow missed this post and just read about your wheelchair. I'm totally shocked. Definitely get MNDA to stick a rocket up their backsides. Actually, even better - go to the papers. They would love a story like this and it won't hurt. Worst case it raises awareness of MND.

                  The ONLY service that helped me fairly promptly was our wheelchair services (subcontracted out, maybe that helps) or maybe because I ended up in a hospice and they got nagged from all sides to provide it so I could go home. Either way, it arrived.

                  Shame we can't swap chairs.... took ages to make mine small enough 🤣
                  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.

                  Comment


                    #10
                    TinyLady I also found out today that my OT did my referral back in November last year! I have contacted local press and councillor.
                    but I'm waiting out for help with mnd association .

                    Also today the manual big person chair came!!!!!

                    I am taking a few days off nagging them but I've contacted my gp and care team via email asking for the matter to be brought up in my mdt meeting. X
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      shelly21 - you have MDT meetings where they discuss your needs? Can you tell me how you make those happen?

                      Glad you have your manual chair. Keep the pressure on!
                      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.

                      Comment


                        #12
                        TinyLady in the absence of an mnd nurse in my area, the palliative care team take over. So yesterday i asked them when my last and next mdt meeting was/is and my concern re wheelchair services. They confirmed wheelchair services are now part of the mdt meeting.

                        So who deals with you? Xxx
                        Last edited by shelly21; 6 July 2022, 19:28.
                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #13
                          I think that is the problem then.... I don't think anyone is dealing with me. Certainly no one has fixed my ongoing digestive issues, allergies or my inability to swallow my pain relief any more. I've asked my GP.... but I'm too complex for general practice apparently.

                          I eed an MDT team. I had hoped CHC funding would open one up to me....
                          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.

                          Comment


                            #14
                            shelly21 - do they come out to you? How often do they see/ contact you?
                            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.

                            Comment


                              #15
                              TinyLady don't want to gate crash the thread but my mnd nurse who I only met recently explained the mdt meetings to me..I think she said mine is in 2 weeks and they discuss everything from each department so gp, consultant,nurse, and others from referrals which have been done.. if u don't have an mnd nurse am unsure what u do have? A consultant must be in sort of overall charge of your care? I know there are Nice guidelines as to how care should be provided and I don't mean general day to day assistance but the mnd appointments like respiratory assessments and things, who refers u for those checks ? I wonder if u have mdt meetings but u haven't been made aware of them? Can u ask gp?
                              sorry off to bed now but really hope u might have mdt meetings upcoming xxx

                              Comment

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