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    #16
    I've since found online access to my medical records and every hospital letter to my Doctor’s practice for the last few years (half an hour at G.P. reception /office for them to sort the access level they asumed I had, as I was an early adopter of their online webpage system prior to the NHS App rollout and wasn't able to access any full details).

    I'm fuming, after 6 months this year of 'interim diagnosis' and no tangible support locally, until Regional MDT referral - I find reports from back in March when I had EMG after 15+ months of reporting symptoms:-
    "EMG seems to a lot worse than his clinical state. EMG findings were unequivocal."

    "Neurophysiologist unequivocal of active denervation and chronic reinervation in all four segments, compatible with motor neurone disease"

    Due to the absence of me having anything in writing, I've asked twice at my Doctor’s Practice in the last couple of months for letter copies and there's been a sorry, there don't seem to be any.
    Within 2 minutes online, I was able to access everything I need (The regional MND hospital clinic I now attend, send me courtesy copies of correspondence, compared to my local hospital).

    Will now see if I can add these to my PIP submission, as the reports to my G.P. include details of my limb weaknesses.
    2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
    Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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      #17
      Good luck Arcadian hope you succeed xx
      ​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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        #18
        Telephone assessment this morning, 2 and a half hours long.
        Assessor was reasonably empathetic and engaging, but had no prior dealings with MND.
        ​​​It went better than I thought it might, reasonable focus and time to describe symptoms impact and assessor to type notes.
        One area of discussion allowed for details around a pre-existing unrelated serious condition overlapping with MND inconvenience to be understood regarding impact.

        Now an 8 week wait to see what the decision maker interprates as an appropriate outcome...
        2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
        Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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          #19
          I've obtained a copy of the Assessor's report to the Decision Maker.

          "Long standing degenerative conditions which may further impact on function..."

          A bit surprised they didn't use 'will' instead of may.

          Apparently MND not considered terminal. (Even though I'm on GP 'end of life care plan'

          Review in 1 year

          DWP policy background behind change of 6 to 12 month 'terminal' definition, rather than flexible approach for illnesses like MND:-



          20230203_110835.jpg
          Last edited by Arcadian; 3 February 2023, 18:18.
          2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
          Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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            #20
            Arcadian I am speechless about the decision. I don't understand why given the diagnosis the pip was not automatically awarded. I hope you plan to appeal.

            My mnd nurse when she first visited me asked if she could do the ds1500 on my behalf. Which she did and I was given pip within a couple of weeks. And I am as active as yourself. Do you have a professional who could act on your behalf? X
            Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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              #21
              Cheers Zante my local disability advice centre are sorting the process of a 'mandatory reconsideration.

              They felt there were errors and detail missed (I have a transcript of my assessment and demonstrated evidence based detail which has been overlooked).
              2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
              Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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                #22
                Arcadian I am very pleased that you have an organisation helping you. There is also the mnda benefits line because there have been previous posts where they have helped members to get pip.

                I feel quite angry on your behalf because this shouldn't be happening. And there are people out there claiming these benefits that shouldn't ever be awarded and yet genuine people like yourself its a battle. Really hope u get somewhere xx
                Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

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                  #23
                  Arcadian I too am speechless and angry with this decision for you. Really hope you get the support to rectify this.☹️xx

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