Announcement

Collapse
No announcement yet.

Hospital visits.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Hospital visits.

    I'm just putting this out there and wondering how people feel about hospital appointments during the pandemic. Obviously it depends on how much we need additional help and interventions. I haven't been to the MND clinic for a year and I do have things to discuss , like everyone else.

    I do find telephone appointments hard because I just tend to say I'm fine. I have an appointment for next week but am worried about going. They rang yesterday to discuss arrangements and mentioned my regular consultant is shielding. When I pUt the phone down I thought as I am shielding is it worth the risk ?

    My husband ... I'm going to take a leaf out of Gary ' s book and henceforth name him as Stuart because .that is his name ( now I sound like Bridget Jones 🤣!!!! ) likes the reassurance that there's nothing else we can be doing to make life easier or safer. I suppose he feel the responsibility of being the sole carer. What do people think ?

    Our first grandchild is due next month and I just want to stay as well as possible so I'm possibly even more cautious.

    Take care and stay as safe as possible,
    Love Debbie x

    #2
    I understand your concerns Deb but I tend to agree with the now known Stuart in that it was more important to me that someone could see Ann so I could understand where they saw her progression. We didn’t go to hospitals for years but I did encourage Sarah our SALT friend and Charlotte from the hospice to actually visit as much as possible. Ann wasn’t bothered about seeing anyone but like I say it was important for me to get reassurance that there wasn’t anything else I could do. After all when the boiler needed work we let the engineer in.

    Comment


      #3
      It's a hard choice for sure Debbie.

      If you feel your concerns are pressing enough and can't be adequately addressed by video calls (does the Clinic offer video appts or just phone?) then, all precautions being taken, an in-person trip may be your best option, rather than, for example, losing weight or struggling with breathing.

      Could you wait until your jab immunity kicks in - that would certainly make it less of an issue?

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

      Comment


        #4
        I did not attend the ventilation team meeting sent my oxygen meter in and they sent me a new mask. Video conference this friday

        Comment


          #5
          When I went in for my PEG in November, the infection rate here was three times what it is now. I was in for four days. I was concerned but I've always felt safe at the hospital. I've got my next appointment at the end of March and it was going to be a video call. I don't like them, even though it's easier than the 1.5 hour round trip. I don't feel as though they get as good an assessment of your condition as face to face. I've asked if it can be changed to a face-to-face appointment. Also, for a hospital appointment your only obligation is to turn up on time. With a video appointment I feel the extra responsibility of making sure the laptop works and we're not in the middle of a power cut (had a few recently). I think apart from your own home, you're safer in a hospital than virtually any other indoor location.
          Each day is made easier with a bit of humour.

          Comment


            #6
            Hi,
            I have not seen my consultant since Jan 2019, have had regular phone conversations though, but I have been into hospital for physio sessions and just been in today to see hand specialist and come away with some rather nifty hand splints, and next month have appointment for my feet. (Insoles and splints).
            personally I’m quite happy to go in, they are a lot emptier than normal, no crowds in waiting rooms, (I was the only one there this morning) and actually they have more time to see you, I was with hand specialist for nearly two hours this morning. My physio sessions also last nearly 2 hours as opposed to the normal hour, so I’m taking full advantage of it and not being rushed through. I needed aides and got them, this illness just takes, so I’m not going to give in yet, whilst support is available
            COVID may have taken away my social life, it’s not going to take away my ability to more able bodied

            s
            As long as there’s golf and beer I’m happy

            Comment


              #7
              [QUOTE=Deb;n39054]I'm just putting this out there and wondering how people feel about hospital appointments during the pandemic. Obviously it depends on how much we need additional help and interventions. I haven't been to the MND clinic for a year and I do have things to discuss , like everyone else.

              Hi Debbie,

              As has been mentioned video calls should be available. I have had 2 with my consultant at Sheffield over the last year. As someone challenged with speech it my preferred method of communication. Make a note of everything you wish to discuss beforehand and don’t be afraid to ask probing questions. It may help to have someone with you just to make notes.

              Good luck and best wishes x

              I’m going to do this even if it kills me!

              Comment


                #8
                Hi Deb

                I had the same dilemma earlier this week when I had SALT coming to potentially upgrade my eye gaze. I thought that I have been shielding all this time. Why let someone in to do something that can wait. If possible I would ask for a zoom call and have a good list of questions ready and as Barry suggested have someone with you for moral support x

                stay safe x

                Comment


                  #9
                  Well here in Portugal things have been bad and I thought hospital appointments would be cancelled and replaced with phone appointments. Thankfully they are keeping the hospital open so im very pleased. I cant say i enjoy telephone calls and relaying answers backwards and forwards between doctor and Stephen. Its a long drive to the hospital but at least theres a better chance of discussion. I'm just keen to finish a phone call and forget what I want to say. Then of course there's waiting for the call. Things at the hospital have been well organised and feels safe. I don't have a problem with going. 😁

                  Comment


                    #10
                    I've just been offered a face-to-face appointment next week at the hospital instead of the end of March and I've grabbed it with both hands.
                    Each day is made easier with a bit of humour.

                    Comment


                      #11
                      Ohh Denise! Just been clueing up on Portugal...

                      https://www.youtube.com/watch?v=U-03...ature=emb_logo
                      Copyright Graham

                      Comment


                        #12
                        I'd rather that they at least look like they're having fun. I've never watched that series I might just give it a go. Thanks Graham xx

                        Comment


                          #13
                          Debbie, I’ve had a couple of online clinic appointments, not good either of them because of the hopeless NHS technology. When the screen was active the voices sounded like we were under water. But my neurologist had enough information from me because I’ve got into the habit of typing out a summary for her of all the answers to her usual questions. I email this to her. Then she can ask me to elaborate about particular points. She said that this is helpful.

                          I was called in for a face to face last time and saw the breathing team on another face to face appointment (after meeting them first in the clinic). I have my next appointment on Wednesday 24th February face and I’m meeting with the MND Smart team.

                          My clinic in Salford have their virus avoidance well sorted. For example when I got weighed last time Steve wheeled me into the small room where the scale is and the staff (usually 2 of them in this room) stayed outside at a good distance away. Steve weighed me. The staff called out instructions. Then when we had gone back to the waiting room one of the staff disinfected everything that we’d been likely to touch. All staff wore masks and kept social distances. Masks were provided for us (despite us having arrived wearing masks). I had been worried about the risk of picking up an infection at the clinic but after the strategy that I observed my worry reduced, although I am still very careful not to touch anything that I don’t really need to etc

                          I hope that everyone’s clinics have such good infection control, Lynne
                          Last edited by Lynne K; 6 February 2021, 13:51.
                          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.

                          Comment


                            #14
                            Speaking as someone who just spent two nights in hospital - Kidney Stones - I have to say they were well organised, I started off in A&E - they have Green and Red entrances and keep all patients separate, on the wards I was in my own room and guess the other patients were too, plenty of people passed through my room from Drs to food trolley etc..........all wore PPE..........I didnt want to be there obviously and for the 2 weeks after discharge kept thinking about it but once the 2 weeks was up felt clear that I wouldn't catch anything at that point

                            I have nothing but praise for the NHS staff I came into contact with............what lets the system down is the constant administration errors.

                            As you know Deb my husband is attending Seacroft at about the same time as you on Thursday - Its either that or wait even many more months for some kind of diagnosis, we have to go,

                            Sue

                            Comment


                              #15
                              I’m glad that you are now well and virus free Sue. Good luck for your husband’s up and coming appointment. I be hope that you get to the bottom of it all. Lynne x
                              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.

                              Comment

                              Working...
                              X