Announcement

Collapse
No announcement yet.

MND regional MDT centre

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

    MND regional MDT centre

    What a difference, accessing a regional multi-discipline team clinic centre, compared to my local provincial hospital (in terms of resources, focus and patient-centered communication).
    A little frustrating that this could have been done 6 months ago, if GP resources, awareness and local hospital departments had greater overlap.

    Maybe some may feel initial MDT clinic may be a bit intense, or a lot to take in, but after 12 months of ambiguity, I'm just glad I have an interface where queries or symptoms progression can be reliably addressed.

    With MND diagnosis being somewhat drawn out by the nature of the illness anyway, I wish I'd been able to access this earlier.
    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)...

    #2
    Glad you got there in the end buddy and hope you can make the best of it ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š
    Foxes Never Quit ๐Ÿ’™

    Comment


      #3
      Arcadian Yes, it's more than frustrating than you weren't transferred to the MND Care Centre following the diagnosis months ago.

      As well as having the one stop shop MDT experience in these clinics, they're where you'll get clinical trials.

      Out of interest Dan, do you know how often you'll be seen at the clinic? xx
      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      โ€‹

      Comment


        #4
        Symptoms are either 'early' or at present slow - additional respiratory and sleep function tests will be organised by another part of the hospital due to some additional concerns.
        Consultant said he'd normally go for 3 to 4 months, but wants to see me in 2 months after additional input from other clinic practitioners.

        With experience of unrelated complex / serious health issues from 15 years ago, I am comparatively baffled by the whole MND diagnostic and referral process in the context of the present.
        My GP made a text-book / NICE g42 referral in March (due to limited diagnostic options syrongly pointing to MND) and despite prompt EMG and Neurologist assessment, it just seems to have 'lurked' in a local hospital sphere of ambiguity and admin, despite reasonably clear EMG parallels to physical symptoms and me reporting additional progression and concerns to GP / out of hours and 111 insisting on an A&E escalating attendance (arguably unnecessary).

        I really pity anybody in different parts of the UK hitting 'gatekeeping' barriers to onward professional medical interpretation and care, together with the 'variety' of professional medical understanding of co-morbitity presentations.

        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)...

        Comment


          #5
          Originally posted by Arcadian View Post
          I really pity anybody [...] together with the 'variety' of professional medical understanding of co-morbitity presentations.
          I agree. I think you and others with co-morbidities have a particularly challenging time. ๐Ÿ˜ฉ
          โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          โ€‹

          Comment

          Working...
          X