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    Care in the community

    denise has asked me to post this on her behalf. It’s a government project looking into social care. People are invited to answers a series of questions.

    https://committees.parliament.uk/com...-for-evidence/

    #2
    It's a long read and we dont have long to respond so please everyone do your bit.

    Thanks, thanks Phil.

    I'm waiting for an ambulance. Stephen has fallen down 4 stairs. Hes ok I just cant get him back up. πŸ™„
    when i can think of something profound i will update this.

    Comment


      #3
      denise will do our bit. Hope ambulance comes quickly and Stephen is ok xx
      Diagnosed May 2021 bulbar onset als.

      Comment


        #4
        Hi Shelly
        thank goodness our neighbour arrived home and helped me get him up. 5 hours on the floor. He seems ok. Coffee and the rugby and hes happy. Probably want a fag next.πŸ™„
        when i can think of something profound i will update this.

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          #5
          denise ooh hope Stephens ok and you. It’s awful when they fall. I have just been given a”raizer” (with a z) which is a portable battery operated apparatus to get someone up off the floor as my husband is prone to falls. One person can manage it. It is fab. There are to side parts that go under the back and bars that are connected. It ends up like a high deck chair. Ask your O T. They came and did a demonstration which is really easy. I had to wait 8 hours the last time for a ambulance. Take care xx

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            #6
            Thanks piglet I will ask about that because the longer he is on the floor the longer it takes for him to recover. That's if he really does recover. It seems to destroy his confidence. Ambulance service said he needs to be kept moving if hes on the floor for long. I can appreciate that but I'm a lot smaller than him and I end up hurting myself. He was in the hallway too so not exactly a lot of space. πŸ™
            when i can think of something profound i will update this.

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              #7
              denise sorry to hear Stephen had a fall...hopefully no injuryπŸ™πŸ˜˜
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                #8
                denise

                Glad you got him up with neighbours help.

                It is horrible, I remember it well. Thomas only able to transfer from chair to commode etc. So no falls since he basically stopped trying to walk.
                He couldn't use aids as no power in hands.

                Looked at the questions and will fill later.

                Basically care work is poorly paid. So there isn't enough people for the people who need it.
                Government will not like the answer. A National Care Sector.

                Can't get anyone to cover one day off to see the parents.

                Getting I hope Direct payments to hire self employed assistants. But they can only do max 3 hours, which is fine normally.

                But I need to see my parents, 150 miles away. As their health is declining.

                Hospice will only take someone if they are coming for symptom control for a minimum of 72 hours.

                Thomas would feel abandoned and I would feel scared he wouldn't get back out.

                Good news (sort of)

                Parents coming to visit next week and stay at a B and B.

                Fingers crossed all goes well.

                Hope today is better for you and Stephen.

                Donna

                Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

                Comment


                  #9
                  DeeH I'm so glad you've solved the problem re your parents. Hope you enjoy your time together.

                  denise can you email your OT? I always think emails stand up better. Like an audit trail. Maybe put in when you request the raizer that the many hours paramedics time is taken up etc. Just add bit of beef to your request.

                  ​​​​​​​Yes falls especially 5hrs on a floor would knock all of us. Hopefully have a better day xx
                  Diagnosed May 2021 bulbar onset als.

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                    #10
                    Hi

                    His knee is swollen today and hes precariously getting about. I've just got him into daycare now I'm fearful I will get him there but I'm not confident I will get him up the outside steps to get back indoors. we have been waiting for news about a staircrawler but that was months ago. I feel an outside stairlift would be more appropriate because I don't feel I'm capable of controlling/balancing the staircrawler. I've only just been offered physio after a fall in January and it's at derriford and I don't feel I have the time to attend especially when mount Gould hospital is right next door.

                    Register as your partners carer they tell us. Not quite sure why it's so important because no one takes any notice. Neurologist wrote to Stephen's GP telling them I couldn't cope, in January, so they put it on file and ignored it. Funny how that didn't help.

                    So if I do this thing for the enquiry, which they want to be short and to the point, its going to be difficult because I have sooo much to say.

                    OT and social worker is coming Wednesday. Fine but with Stephen present it's going to be difficult. I'm contemplating putting my woes in an email before hand plus a copy to GP and MND people.

                    🀨
                    when i can think of something profound i will update this.

                    Comment


                      #11
                      Care in the community was when lunatic homes were abolished
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #12
                        shelly21 is right - emails are documented trails.

                        One positive about me not being able to speak is that HCPs, care provider etc have to email me, and their documented promises proved invaluable on several occasions over the years πŸ‘πŸ‘
                        ​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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                          #13
                          denise go for it. Be brutal. Re your injury and more needed. Can you get your mp copied into the email?
                          maybe use the 'gold standard of care terminally ill people are on.

                          Also maybe time to go to the quality care commission. Put it in your email that you will be doing this.

                          I really know how demoralising this complaining is. But go all guns blazing. Every time Stephen falls then gp notified.

                          As ex police I always had my work scrutinised and recorded everything. Your g.p should be doing the same.

                          Xx
                          Diagnosed May 2021 bulbar onset als.

                          Comment


                            #14
                            I agree with shelly21 & Ellie​​​​​​​ I'm telling all professionals to e-mail me as I'm unable to talk on the phone. Means I have a record of who said what & I copy people in so everyone knows. "Transparency" ...πŸ˜‡
                            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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