richard vA

Also this thread https://threadreaderapp.com/thread/1777265308874485990.html

Ashame few comments here. One eminent  family  campaigner has raised very similar general issues in another area of what was previously  HSIB s work..this should  he separately published here. I can just post twitter thread: https://threadreaderapp.com/thread/1773806438017626455.html

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

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. 

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

the recent report of a feedback consultation created this summery report, which to me raises major concerns-see attached

Patient and Family Show and Tell - Questions and Answers.pdf20231019 Public Show and Tell for the Patient and Family discovery - slides.pdf

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. ? 

the recent report of a feedback consultation created this summery report, which to me raises major concerns-see attached

Patient and Family Show and Tell - Questions and Answers.pdf 20231019 Public Show and Tell for the Patient and Family discovery - slides.pdf

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

Dying to give an update.  But that relies on overworked charities

Patient exclusion at a fundamental level from NHS  is a growing concern, even from exemplar services with models with much Patient rhetoric but no evidence 

More insightful and serious systemic concerns from someone even more at the heart of HSIB  and also particularly  its maternity work. https://x.com/JamesTitcombe/status/1721217322986188966?t=XlKzqf4fc1gVG5ZIn7WfCw&s=08

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.

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. 

I am not on linked in

Update. Blog here .my meta concern is in the comments section. Patient reported harm needs Patient Involvement at all levels in the process,  empowered.  I do not see that. 

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.

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. 

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 

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

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

Can an open accessible non pay walled link be made available?

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

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

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