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richard vA

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Everything posted by richard vA

  1. 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.
  2. 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
  3. 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/
  4. 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. ?
  5. 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
  6. 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.
  7. 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.
  8. Content Article Comment
    Having read the report and been at the webinar my basic response: 1. The hybrid proposal is the correct way to go 2. I am concerned about the lack of harmed patient (and also discriminated against patient groups) involvement in the whole design process. There does not seem to be awareness of what even co production means. David Gilbert a leading patient leadership writer, campaigner and service developer in this field is required reading and someone who should be involved in a professional way. Whatever the well intentioned approach of design and consultation services ( informed Solutions with this project) I am extremely sceptical of their chance of success potential without truly empowered harmed patient core involvement in the project. These intermediaries show there is a recognition of the gap between service/professional/policy perspectives ( work as done) and the patient experience ( work as experienced) but this extra layer is still part of the US/THEM dynamic which means authentic challenging change seeking patient voices are kept at arms length and under control of the system requirements. I am not sure the gravity of this system error is even understood.
  9. Content Article Comment
    One omission from this feedback is a comment on the online feedback form of HSIB made available to all patients and families. I found it very unhelpful to capture my families feedback. There appeared little evidence of real Co production in its design. Most worrying and consistent with my letter is no evidence I could gain of analysis by HSIB of feedback given. A report was promised to the Advisory Panel in the penultimate meeting in June 2023 but despite promises minuted nothing has been forthcoming until the Advisory Panel formally ended.
  10. Content Article Comment
    I do hope other comments will be added. The incoming Board requires constructive food for thought as it launches the next stage with theoretically& legally more powers and independence but in a just as challenging context. Learning from tragic deaths of mental health patients requires huge sensitivity, sophistication and patient and family centredness
  11. Content Article Comment
    But who is looking at the ultimate users. The users of services. Survivors. Harmed patients. Compounded Harmed subjects of investigations? Work as experienced by the most vulnerable actor in the system. As I have said on other PSIRF blogs: My question about your experience relates to 2 key related issues: 1. Is their evidence of real Patient Involvement, indeed co production in some processes 2. Is there evidence, even any data collected and analysed on the outcome for patient and families, their honest full feedback and whether compounded harm has been avoided. I say this has someone who has had experience of the PSIRF context and a sister organisation and concerns expressed here from a patient family perspective https://www.pslhub.org/learn/investigations-risk-management-and-legal-issues/investigations-and-complaints/from-the-exit-door-of-hsib-challenging-feedback-and-a-health-warning-for-patients-and-families-r10266/#:~:text=Richard von Abendorff%2C an outgoing,become an exemplary investigatory safety
  12. Content Article Comment
    Interesting. But as I have said in response to other PSIRF blogs : My question about your experience relates to 2 key related issues: 1. Is their evidence of real Patient Involvement, indeed co production in some processes 2. Is there evidence, even any data collected and analysed on the outcome for patient and families, their honest full feedback and whether compounded harm has been avoided. I say this has someone who has had experience of the PSIRF context and a sister organisation and concerns expressed here from a patient family perspective https://www.pslhub.org/learn/investigations-risk-management-and-legal-issues/investigations-and-complaints/from-the-exit-door-of-hsib-challenging-feedback-and-a-health-warning-for-patients-and-families-r10266/#:~:text=Richard von Abendorff%2C an outgoing,become an exemplary investigatory safety
  13. Content Article Comment
    Interesting but I am concerned about the lack of reference to the patient in this evolving variable policy area around harm. My question about your experience relates to 2 key related issues: 1. Is their evidence of real Patient Involvement, indeed co production in some processes 2. Is there evidence, even any data collected and analysed on the outcome for patient and families, their honest full feedback and whether compounded harm has been avoided. I say this has someone who has had experience of the PSIRF context and a sister organisation and concerns expressed here from a patient family perspective https://www.pslhub.org/learn/investigations-risk-management-and-legal-issues/investigations-and-complaints/from-the-exit-door-of-hsib-challenging-feedback-and-a-health-warning-for-patients-and-families-r10266/#:~:text=Richard von Abendorff%2C an outgoing,become an exemplary investigatory safety
  14. Content Article Comment
    Very interesting. Something I would like to add to the mix for proper consideration to be given to is : My question about your experience relates to 2 key related issues: 1. Is their evidence of real Patient Involvement, indeed co production in some processes 2. Is there evidence, even any data collected and analysed on the outcome for patient and families, their honest full feedback and whether compounded harm has been avoided. I say this has someone who has had experience of the PSIRF context and a sister organisation and concerns expressed here from a patient family perspective https://www.pslhub.org/learn/investigations-risk-management-and-legal-issues/investigations-and-complaints/from-the-exit-door-of-hsib-challenging-feedback-and-a-health-warning-for-patients-and-families-r10266/#:~:text=Richard von Abendorff%2C an outgoing,become an exemplary investigatory safety
  15. Content Article Comment
    My question about your experience relates to 2 key related issues: 1. Is their evidence of real Patient Involvement, indeed co production in some processes 2. Is there evidence, even any data collected and analysed on the outcome for patient and families, their honest full feedback and whether compounded harm has been avoided. I say this has someone who has had experience of the PSIRF context and a sister organisation
  16. Content Article Comment
    Given my concerns about how Patients and Families are utilised, or not in learning investigations, by even the leading exemplar service i am interested to read this and will feedback my thoughts, as I was one of the patient contributors to the Discovery phase and did comment on this whole project some time ago expressing my views
  17. Content Article Comment
    well put-there is a difference between a complaint and a report of harm in my opinion. , but each deserve full respect, attention and centering pf patients views, for similar reasons. hsib is looking at harm reduction and looking at systemic issues-which patients are well able to engage with if given an opportunity-their efforts should be respected fully
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