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    I can't believe this

    Stephen has been in hospital since 8 August. Yesterday I asked him what he had for breakfast and he said nothing they had forgotten him. I thought he was joking. I go in every other day to give him his midday meal and a few times/most times I've thought others seem to have a better choice than him. I was already a bit put out because the dietician had said he should be on a soft foods diet. I was furious he has no need to be and why not ask me not someone who hasn't seen him since spring. So I asked who decides what he has for each meal. If I asked him at home he'd say cheese sandwich. He didn't get it I'd cook him a big meal and he'd eat every mouthful and mine given the chance. But the food I was giving him was like omlete, cheese pie, when he could be having roast beef and all the trimmings. Also jelly and ice cream instead of fruit crumble and custard. So angry, but controlled, I asked why Stephen is saying he didn't have any breakfast? No one could confirm one way or the other which is a worry because someone should have fed him. I put forward that someone with Stephen's diagnosis needs to be fed like he's running a marathon everyday day. No cornflakes preferably porridge and a decent main meal and desert. It's going through my head how often has this happened because I was starting to think he was losing wait. I'm not sure I am able to make excuses for them but if he didn't have me to fight his corner I'm not sure how this would have played out. I'd like to know how much he weighs.

    Rant over 😀
    when i can think of something profound i will update this.

    #2
    I wonder if Stephen's swallow was assessed by the SLT since his admission Denise, and that's how the soft diet 'order' came through the Dietitian? If it's a professional opinion, it will probably be a case of My house, My rules, rather than what he quite happily manages to eat at home.

    That nobody keeps track of what he was fed or even IF he was fed, is rather alarming. He should be weighed, you're right.

    Would you speak with the Dietitian or to PALS? πŸ˜˜πŸ€—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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      #3
      His swallow has never been assessed. No one has been to see him here or in hospital.

      I've sent an email to mnd-NHS coordinator.
      when i can think of something profound i will update this.

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        #4
        denise bloomingheck Denise your still getting grief even with Stephen being in hospital. Has there been any meetings re Stephen's future care. I’d ask to speak to the nurse in charge re his care on the ward and explain your concerns due to his MND and also FTD. Xx

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          #5
          Hi denise - I went through similar for my husband - absolute nightmare! Christmas day and he is given a plain chicken sandwich - being diabetic he could not enjoy the sweet items on offer and was told that the sandwich was a full meal, he couldn't swap all the christmas trappings for another sandwich and he went without. He was told there was no fresh fruit and when told off by the nurses after his breakfast of toast because his sugar level was up, said - I can only eat what you give me! This was covid, no-one could visit to supplement his diet with items brought in. With no visitors allowed the only thing he had to look forward to were the meals yet he kept going hungry. I was beside myself and called PALS, the dietitians and their secretary leaving messages. The dietitian eventually got back to me and passed the buck to the catering manager. Fortunately she was lovely and said she would ensure he got to see a menu so he could choose for himself. The menus were taken to the ward but never handed out, 2 days later it's still the same situation with him going hungry, so I call again and this time the manager takes the menu directly to him, having to put full protective gear on to do this! He was amazed at the choices and eventually enjoyed some nice meals. He had lost nearly 2 stone in a matter of weeks. The full meal was actually soup with a sandwich and he was 'allowed' to have two sandwiches in place of sweet things - but what a fuss I had to make to get this to happen. It's not right - I wrote to the hospital CEO and have received apologies, but it shouldn't be happening. You feel so powerless. I would speak with the dietitian, PALS seem to be ineffective. xx

          Comment


          • Yes Denise, they would just neglect Stephen if you weren't there. I was neglected for most of the 700 days that I was in hospital.

            It's very easy to neglect people with no voice, they say nothing but expect to be assisted?!

            Thank God Stephen has you.

            Love and hugs xxxx

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              #7
              denise this is shocking. Definitely speak to the nurse in charge.

              Can the MND coordinator get Stephen moved to a neurology ward, where they would better understand his care needs?
              ​​​​​​
              Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder and hand function. Trying to be positive 😺.

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                #8
                Surely one of the basic needs of anyone in hospital is good, appropriate nutrition. Stephen's dietician should have advised what his needs are but I don't think she even knows. Its become apparent to me most of those on his so called team are not trained to deal with mnd so cannot pass on any expertise to any one else. Then again it would have to be appropriate to him not necessarily the same as everyone with mnd.

                When I was there one day there was a piece of chocolate cake in a wrapper under his bed and another day ginger biscuits in a sealed wrapper. He obviously couldn't eat either having no use of his hands. Makes me think hes just given things and as he hasn't eaten them its taken away as not needed.

                so much to relaxing knowing hes been cared for. Your comments have further added to my worries - so if they do find a home for him I get to start all over again worrying that hes not being fed and looked after.

                Hes wearing a bracelet with info concerning oxygen but I'm beginning to think he needs quite a few others pointing out other requirements.

                I'm going again today. Fingers crossed but I am going to ask for him to be weighed because he was 11 stone last time I managed to get him on the scales.

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

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                  #9
                  denise I think its time to ask for a meeting with a manager. Like you said re a person with mnd needs more calories etc.
                  Wish it wasn't like it for you x
                  Diagnosed May 2021 bulbar onset als.

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                    #10
                    Hes lost 9.6kg. I was right to be annoyed. That's a lot of weight. They are upping his food intake and adding a peg feed. Honestly who are we supposed to trust.
                    😀
                    when i can think of something profound i will update this.

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                      #11
                      denise how sickening and worrying for you. Well done for being so assertive xxx
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                        #12
                        Oh goodness denise. It's so worrying to think what would happen to Stephen without you to care for him.

                        Well done for pushing for care, even though you shouldn't have to. Hugs to you xcπŸ€—πŸ˜˜

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                          #13
                          denise I think you need to go into the hospital armed with a comfy chair and food and state you are not leaving until you have seen a manager to discuss Stephens care, lack of care. It cant continue like this and it needs someone high up now to get it sorted. thinking of you xx
                          Diagnosed June 2022. Confirmed MND. Limb onset. Symptoms started November 2020.

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                            #14
                            Originally posted by denise View Post
                            They are upping his food intake and adding a peg feed.
                            The good thing about having a nutritional supplement or a PEG feed prescribed is that it must be given, so make sure it's been prescribed and written up.

                            Really hope they follow through on upping his normal food too. xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            ​

                            Comment


                              #15
                              Might not help Denise but one of Chris's consultants says if he is admitted to hospital it has to be a critical care bed.
                              Can you formally lodge a complaint.
                              You don't need this xxxx

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