Jump to content
  • Posts

    85
  • Joined

  • Last visited

richard vA

Members

Reputation

6 Novice

Profile Information

  • First name
    RICHARD
  • Last name
    VON ABENDORFF
  • Country
    United Kingdom

About me

  • About me
    patient advocate and safety campaigner-involved HSIB Citizens partnership and previously NHSE/O patient voice

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Content Article Comment
    Who where is prioritising even just identifying the nature of exclusion of patient narratives, their impact and trying to address it systemically? I am working on this concept in reference to 4 cases and welcome any analytic, policy, academic or even philosophic insights! Please contact me via PSL
  2. Content Article Comment
    A powerful story. So sorry to hear how things could and should have been better. Being denied the chance to be the daughter as you had to play the nurse role in those last few days must have been so hard. Echoing my experience around my mother's last few days in hospital when her pain control was avoidably destabilised and the struggle for many avoidable reasons to re establish it and be ahead of the pain. Great to hear how you are sharing the learning. Have you heard any departments elsewhere taking concrete steps to learn and act and change based on your experience? If so how did you do it? I am on that journey too.
  3. Content Article Comment
    What unenviable roles! I couldn't bear being used in this way. A canary in the mine of NHS, not protected and ignored it most key ways. Only empowered patients and their advocates have any chance at all. With routes to top governance places. All else is buck passing. Ask David Gilbert about real patient empowerment . https://www.inhealthassociates.co.uk/wp-content/uploads/2020/05/Patient-Leadership-Triangle-Ebook.pdf People with no other interest at all apart from patient safety need to be there . Even ' innovative ' 'model '' independent ' safety organisations exclude patient family in key processes . Despite numerous attempts at feedback there has been deafness and dumbness .no response. No one on Board with interest or interest
  4. Article Comment
    Similar story here of late diagnosis of metastatic spread, not investigated despite family raising it as core issue. Outside scope. Yet crucial impact on palliative services already under resourced, under prepared, under informed and no one interested in reflecting on this insight. Its just a story after all : https://sarcoma.org.uk/family-insights-from-dermots-experience-hsib-report/
  5. Content Article Comment
    Having done a data Subject access request ( received in part so far)I discover the huge difficulties HSIB had in being challenged, questioned. Causing stress to those implementing a model being rolled out, time demands, patients just their to tell stories from memory not share insights..that is for the powerful experts..reflecting what has been written elsewhere when will services welcome and engage with feedback and ideas and not just treat them as people to be shut down or ignored ( numerous examples here) or managed away. ?
  6. Content Article Comment
    This is the one page paper I wrote to Ilora Finlay, Baroness Finlay of Llandaff, an expert in palliative care, summarising key issues that HSIB failed to address in their paper HSIB: Variations in the delivery of palliative care services to adults (13 July 2023) and that my family feel were of key relevance if the report was to truly address family concerns about what happened to Dermot and all learning that could result. Sadly no one at HSIB or HSSIB or externally seems interested in even properly examining if HSIB did have any failings in their investigation process. Submission to Baroness Ilora Finlay.pdf
  7. Content Article Comment
    At this time of truth telling in the covid inquiry ( or not at the time! ) I feel i have to add something, some of which i know is not unique to me on the former Advisory Panel:namely: HSSIB and its governance structure and design and personnel have at the highest level been chosen to enable tight control by DHSC, NHS establishment and core central medical establishment. My concerns in practice about the lack of proper patient involvement, unbiased analysis and the questionable scientific and evidence base are all the inevitable outcome. Not to say HSSIB will not share some valuable insights. But it is profoundly, organisationally, epistemically , ideologically restricted, restrained and limited. And as austerity and staffing crises, and tight brutal NHS management culture plans to continue through to the next government ( no reassurance from Labour) one really wonders if it can be anything more than a token enterprise, a badge of pride to some but a huge wasted opportunity and even more dangerous ( literally) fake remedy to a continuing and in many respects growing health care crisis. Am I being too cynical or negative? I fear not at all. End.
  8. Content Article Comment
    Just received anonymised summaries of 18 patient/ family feedback forms dating 2019 to 2023 (as promised). Concerns on involvement and support confirmed for a significant minority from this small sample. No report on any more detailed analysis or response to this feedback. Wording of forms encourages underreporting of concerns. Poor design as full open letter comments.
×
×
  • Create New...