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    Problems accessing care maybe sorted

    I have been struggling so much with day to day things and despite social services awarding me 35 hours care when I was in the hospice mid February, to date not a single hour has been provided.

    After much chasing and stress and meetings it turns out the amount per hour social services offered to pay was at least £10 short of the care agencies, so no one wanted to help me. Once I found this out I was somewhat angry that social services knew this and have left me struggling. I can't even agree to a PEG procedure with no carers.

    Then I found out when my DS1500 was signed in early December, or when I was in the hospice, or when I was assesed for care.... apparently CHC funding should have been applied for? Which would have covered the additional costs. It seems everyone assumed someone else had done this.

    So I was visited Friday for a fast track assessment. Very quick. She asked very little and told me she knew nothing about MND and what was it 😬

    Since then someone I know who works for NHS has told me I won't get it anyway as my needs are all social not medical? I feel the rug is being pulled away again... should I qualify for CHC funding? I am beyond desperate for care and to finally get some trust back in this system!!
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

    #2
    People with MND do qualify for continuing healthcare. My palliative care nurse says I qualify now. We’re just getting ready to start care.
    There are certain criteria to meet (none of which are social). Basically my situation is that I’m nil by mouth, can’t speak and can’t use my arms so need assistance for just about everything. Typing is achieved using one thumb on phone, and eye gaze.
    Press for what you’re entitled to!
    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

    Comment


      #3
      PeterPan - thanks. May be I don't qualify yet? I keep thinking perhaps I'm not unwell enough yet. I'm in a powerchair, little use of left arm, poor speech and modified diet.

      I am just so desperate for help so my husband can return to work and the pressure is off my teenage children, plus I get quality of life back - not just sat in a chair remembering all my hobbies 🤣
      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

      Comment


        #4
        Hi Tiny,

        I qualified for my CHC budget last spring. My OT and social worker held off completing the application until we knew I had reached a point that I would pass the assessment.

        Initial assessment document is here:

        https://www.gov.uk/government/public...care-checklist

        Bullet point 15 tells you what you need to score in order to qualify for a full assessment.

        hope you find this useful, James x
        Foxes Never Quit 💙

        Comment


          #5
          TinyLady I so agree. You deserve to have a better quality of life. I haven't got a clue re chest sorry.

          They have blatantly lied or omitted parts which is still wrong.

          I just wish someone would help you and your family x
          Diagnosed May 2021 bulbar onset als.

          Comment


            #6
            JamesW - thank you. I tracked down a care agency who agreed to meet me and when they visited they were very shocked at the lack of support in place and got straight on the phone to my GP for a fast track assessment which was done Friday.

            I'm worried though as I fall through every crack. The fast track assessment didn't really ask me much and the community nurse who did it said she had no idea what MND was and asked me to explain it. But I was on the spot and no idea what I'm supposed to say. I was so upset by the number of lovely, but clueless people I encounter.

            I hope I qualify because then this care agency will support me at last. But I am so scared of how little say or control I have.

            shelly21- they simply didn't assess me. I think they all assumed it was done by someone else. Maybe the GP should have when the DS1500 was done, or social services etc. I think here the OT usually doesn't, but she is still off sick.

            Please keep everything crossed it is agreed and I finally get care. I discovered today I can no longer stand up from my chair without help which was upsetting and another piece of independence gone.
            Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

            Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

            Comment


              #7
              TinyLady good luck with everything. It sounds as if you’re having quite a battle. I, too, have somebody coming to assess me for carer support next week. Keep us updated on how it progresses.
              Take care.

              Comment


                #8
                TinyLady you are not alone in the loss of independence. I'm at a very similar stage. I'm bulbar onset so speech is very poor. Right arm useless, left arm ok but signs of major muscle loss. I'm in my power chair and over the last two weeks I've also struggled transferring without help.

                But all these things come under your need for care. You cannot do it safely on your own.

                I've got everything crossed for you. Xx
                Diagnosed May 2021 bulbar onset als.

                Comment


                  #9
                  Good luck Nowheatpete with your assessment. I hope you get sorted quickly. Let me know how you get on.

                  shelly21 - I'm left foot onset, but it went up my left side before starting on my right side. So I am fairly limited. I can just about wash myself and dress (got no choice), but it is not great and is totally exhausting. I have so much I want to do. So many simple wellbeing tasks I just have to accept won't happen. So many hobbies too. I just need a bit of help with everything - then I can have energy left for some fun and I can safely choose to take medication and intervention as needed!
                  Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                  Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

                  Comment


                    #10
                    Originally posted by TinyLady View Post
                    So I was visited Friday for a fast track assessment. Very quick. She asked very little and told me she knew nothing about MND and what was it
                    The fast track assessment should be short as the healthcare professional who referred you for the fast track, did so on the basis of need so, technically at least, you should have skipped a few steps - in practice, things might differ somewhat 😐

                    Originally posted by TinyLady View Post
                    I just need a bit of help with everything
                    A word of advice for CHC applicants: at the assessment, you never need 'a bit of help', you need a lot of help 😏 This is not the time for stoicism. This is not the time to mention hobbies. This is the time to win the lottery.

                    You need help for nutrition, fluids, maintaining skin integrity (pressure sores), managing your feeding tube (Tiny, get one), NIV etc etc.

                    I have everything crossed for you Tiny 🤞🤞 Were you told that you should hear in about 2 weeks? xx

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

                    Comment


                      #11
                      TinyLady I'm angry for you, I just can't believe people in the medical profession do not know about mnd or, given a task to assess you, did not find out the key symptoms and effects😕 My GP, when I was first diagnosed, had only seen a PLS case but sent off for a toolkit to ensure all bases were covered in terms of things that may need doing, and the mnd nurse linked to the consultant neurologist's MDT is contactable. This pot luck approach is lamentable. It's a measure of our society how we support our most vulnerable. You are using vital energy when you shouldn't have to... From what you describe, I would say you should get Continuing Healthcare Funding too. Keep battling, hoping you are almost there xx

                      Comment


                        #12
                        TinyLady i hope things get sorted out for you, you have basic care needs and should be receiving appropriate care. Hope to hear you get good news soon.

                        Comment


                          #13
                          Ellie - thank you. I'm not sure she really understood what she was doing and I have always felt such a fraud and that I don't deserve help, mainly because my experience so far has been so awful and un caring - I am still confused about my diagnosis and I keep hoping if I get poorly enough, eventually I will get the help and support I need. But I'm really not sure where the "poorly enough" line is, and sad that I am almost wishing myself worse, just so I can live a little!! You are right, I do need a lot of help. I physically cannot get myself drinks, for example.

                          They gave me no indication of what would happen next. She did say she would come back and see me. I asked her about my wheelchair cushion as I'm always in pain and I wasn't sure if it was a pressure cushion. I'm still not sure. Apparently it isn't a standard size so she might not have an alternative.... and that's where it was left.

                          Olivia H - thank you for your encouraging words. I do feel I have a tendency to fall down every crack available. I hate fuss and attention, but I feel very abandoned, which then makes me feel a fraud and undeserving of care.

                          ​​​​​​​Claireflo - I think my increasing care needs were identified months ago. But no one seems overly concerned about helping with them... as usual, I probably don't tick a box somewhere!

                          Not sure if I have carers starting tomorrow or not 😆
                          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

                          Comment


                            #14
                            TinyLady take a look at a website called ‘Care to be different’ lots of free advice about CHC.

                            💙😘

                            https://caretobedifferent.co.uk/
                            Last edited by LindaB; 8 May 2022, 09:58. Reason: Added link
                            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.​​​​​​

                            Comment


                              #15
                              I found that as soon as hubby had a DS1500 we didn't need to have a financial assessment for care funded by social care. The Local authority then arranged and paid for the care. The fact that it didn't work was a separate issue - I then went for direct payments and was very lucky to employ 2 lovely PA's. Still not got weekends covered though.

                              Now we are CHC funded, still have same process and same PA's and even had a "review" phonecall on Friday ( a month after initial acceptance) to see if we need anything else. Overnight sitters and respite offered but declined for now.

                              I believe you only need to score one "severe or High" to qualify for CHC. Hubby got that score for everything but cognitive ability.

                              It seemed quite straightforward.
                              Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

                              Sense of humour intact throughout.

                              Sadly passed away peacefully 2/9/22

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