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    CHC Assessment today

    I had my CHC Assessment today. It took nearly 4 hours. The MDT team were strangers except my social worker who I met previously. No one came to represent my health needs so I had to rely on my own ability to think of everything I struggle with and find letters as evidence.

    They were shocked I had no MND nurse or coordinator. I was referred to falls team in January but had never been seen. Had no strategy in place for if I choke despite being assessed high risk. Had no OT input so no help with transfer aids or a manual handling belt (which sounded scary but I'm assured isn't), no referral to pain clinic (as I have other issues that exacerbate pain), no Pressure Assessment... and the list goes on. So therefore hard to prove my issues or my 20%weight loss. They just looked shocked. I ended up in tears and said I was extremely scared by my lack of health support.

    I just don't think I can go through much more of this stuff before I withdraw completely and give up. I feel like writing HELP in blood on my forehead... but no one will notice.

    Fingers crossed I get good news. But it seems very hard to meet their criteria.
    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.

    #2
    TinyLady fingers crossed 🤞 for you that you get good news. I’d cross my toes too, but they don’t work any more.

    It’s not fair how badly you’ve been let down through all of this. Gentle hugs.
    Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

    Comment


      #3
      I'm glad that the people present got to hear how poor, unsafe and negligent you so called care is, and they also saw how this desperate situation had you in tears, so let's hope something good finally happens for you 🤞🤞

      If CHC is denied, appeal. Did they give you any idea when to expect a decision?

      Has that Social Worker got any clout?

      As for the manual handling belt - think of it as a somewhere for your husband to put his hands in while you both dance 😍😍
      ​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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        #4
        We found the manual handling belt really useful whilst hubby could still walk around. It provided confidence for him so that he could keep walking for as long as possible. I used to walk behind him and keep his pace, and sing along to "do the locomotion" He felt safer with me supporting him with the belt.

        It was also helpful in the shower as wet bodies are slippery, and provided something to hold on to.
        Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

        Respiratory and blood gases still within normal range.

        No speech but sense of humour still fully intact.

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          #5
          They said I would hear in 2 weeks. I had 5 High needs, a couple of moderates and a low need. Basically my MND interacts with a few other issues in a worrying way, which I needed to make sure they realised. To get much higher scores I needed to be in a coma and unable to move at all it seemed 😆

          Social worker has no clout. I just have to hope they can find evidence for everything.

          Quite like the sound of a manual handling belt... if only I had an OT to assess me for one 🤣🤣🤣

          Thanks for keeping fingers crossed. I really need some good news 🤞🤞🤞 so sick of fighting.
          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


            #6
            Apparently you only need one high score to qualify for CHC.

            we found that now we have qualified for CHC we get regular reviews and get offered all sorts, but we are very lucky with the community support that we get anyway.
            Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

            Respiratory and blood gases still within normal range.

            No speech but sense of humour still fully intact.

            Comment


              #7
              MMG- well that sounds hopeful. It said you needed a severe or priority level to get CHC but I didn't get any. You had to be in a coma, unable to take food or water in ANY format and on ventilator (not niven one) to qualify for those scores...

              Live your explanation of the belt. That sounds exactly what I need!! My hubby will enjoy tormenting me with the singing too no doubt 🤣

              Goodness knows why no one has suggested one before. Except obviously I do know why.... you need a real OT.
              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


                #8
                Really hope things go well TL xxx

                Comment


                  #9
                  Sounds such a difficult situation for you, really hope you get good news and the help that you need

                  Comment


                    #10
                    TinyLady on reading your second paragraph i picked out what I would deem life threatening. Choking for one. Meaning if you are home alone how can you be safe re eating/drinking. Then the weight loss. It is very detrimental in mnd loosing weight. Even more so for lunchtime care to administer a meal.

                    I hope they see how dumped by support you have been. They should raise concerns with the mdt. The award you at least mid week day care.

                    I'm hopeful for you. Stick with it lovely lady 💖
                    Diagnosed May 2021 bulbar onset als.

                    Comment


                      #11
                      TinyLady Don’t really have anything to add to what’s already been said, just wanted to offer my support and hope things get sorted out quickly for you. The lack of joined up actions is so frustrating but fingers crossed you now get the help and support you deserve.

                      Comment


                        #12
                        🤞🤞for some good outcomes xx
                        Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                        Comment


                          #13
                          It's shocking that you arent getting the support and care you need. I can't understand why you haven't even got an mnd nurse.
                          I am currently going through the CHC process myself and it seems to be dragging on for months now. I got 2 severes in my full assessment. This was mainly because of choking risk and mobility. I'm still waiting to hear from them ,but the criteria is just ridiculous.
                          I really hope all goes well for you and you get the the quality care you need. x

                          Comment


                            #14
                            I sent for a booklet called when does the NHS pay for care?

                            It's all about how to apply for chc. Free from alzheimer's society and it's not specifically aimed at dementia.
                            Attached Files
                            when i can think of something profound i will update this.

                            Comment


                              #15
                              Lythgoe81- interesting you got two severe. I am in a powerchair and unable to walk and one of my arms works buy the other doesn't- but to get severe I needed to be in a coma or totally unable to move any part of myself

                              I am high risk of choking and told that I must be supervised at all times when eating and drinking. To get a severe I would need to be completely unable to take food or drink either by mouth, by PEG or intravenously (surely you would be dead?) So it seems criteria vary depending on area too. The whole thing is frustrating.
                              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

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