Medical Records - altered/missing

Wibbles
Wibbles Community Member Posts: 3,726 Championing
in Talk about your impairment

My GP records are missing heaps of (previously there) attachments and worryingly - An important event - in which I attended the surgery and was sent straight to A&E with "heart failure" in July 2024 is completely missing !

The records are still there in NHS records to a limited extent - so I am copying them all to my PC - But why would an event be completely wiped out ?

Comments

  • Mary_Scope
    Mary_Scope Posts: 5,741 Scope Online Community Children and Family Specialists

    That is strange @Wibbles, maybe it was an admin error on their behalf? Have you queried it with your GP?

  • Doglover2
    Doglover2 Community Member Posts: 476 Pioneering

    @Wibbles funny you should mention missing medical notes.some of mine are too.. including counselling sessions from a few decades ago, and consultant reports also decades ago re Painful bone growth i have in each hand that I was born with.

  • JessieJ
    JessieJ Community Member Posts: 1,386 Championing
    edited July 26

    Just about all re my spinal fusions are missing. My GP knew my main problem was my spine, but she didn't know much about it until I went through it all with her. My hips are now going & I was sent for a DEXA scan, she actually mentioned that she saw some of the metalwork once the result was sent through to her. Not like it would have been worth DWP contacting her!

  • Wibbles
    Wibbles Community Member Posts: 3,726 Championing

    My surgery are normally pretty good at most things - but records that were there previously - vanishing overnight is weird - they told me to use NHS rather than SYSTMONLINE - but most of my records are now gone !

    The GP can still access them - so perhaps it is a permission problem ?

  • Wibbles
    Wibbles Community Member Posts: 3,726 Championing

    The consultation notes list “Lewy body disease” in my history. This diagnosis has never been mentioned to me in over 30 years of care at this surgery, and it does not appear in any of my historical neurology records.

    My long‑standing diagnosis is:

    • bilateral pallidal necrosis
    • basal ganglia injury
    • toxic/metabolic collapse (1990)
    • akinetic‑rigid syndrome
  • Doglover2
    Doglover2 Community Member Posts: 476 Pioneering

    My sister recently had access to her medical records and hers are very much up to date showing everything including all her cancer treatments ,various operations and long term medications plus stuff from childhood. Shes with the same surgery as myself.

  • Wibbles
    Wibbles Community Member Posts: 3,726 Championing
    https://forum.scope.org.uk/discussion/comment/1141707#Comment_1141707

    The reference to LEWY BODY DISEASE has been removed at my request - I wonder where it came from ?

  • Wibbles
    Wibbles Community Member Posts: 3,726 Championing
    edited August 3

    Update

    My surgery is getting rid of all historical medical records - older than 12 months - from their

    SYSTMONLINE records for all patients !

    They remain (greatly reduced) on NHS records..

    This appears to be extremely short sighted !

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