richard vA

Let's focus on patient empowerment element. That is where most change potential resides.  No sign. Patient voices, issues, concerns, insights are actively excluded from safety learning process too often. We need Patient Leadership in processes.  Great ideas developed by David Gilbert at InHealth but so very very little done along these lines. Even just reporting (eg here attached) or including in so called model 'engagement ' processes. No evidence sought. More to report from the front line soon. 

Little Optimism.  When I see the lack of harmed patient voices at the new Patient Safety Commissioners advisory body I wonder how and why the voice of patients,  without any other interest apart from harm prevention and learning , are still kept away from the centre. What do governing bodies fear and are trying to hide, deny,  cover up, under play? Very worrying,  annoying,  heart breaking, infuriating... legitimate feelings at this time. 

shocking.sickening.perhaps HSIB expert system investigation needed, not sure if it meets criteria https://www.hsib.org.uk/who-we-are/about-hsib/  as loing as patient voice adequately heard throughout any review

Simple but powerful points 

Which organisations have engaged with this ?

I know one patient leader who leads the way, but not primarily in patient safety : David Gilbert 

I know one safety expert who respects patient expertise.  I will not name her. I urge her to speak out more on this!

When patient safety is personal. For both sides 

My experience is patients are kept at bay,  all extra work done to protect services. Especially in how the story is told! The starting point. And so from harmed patient perspective where bias,  being ignored, dis respected,  powerless ..all starts....and so never ends. Never resolved.  And so very little learning emerges.  It takes exceptional patients like JamesTitcombe to get their story heard.told and re told.  Exceptions prove the rule.  So wrong. Unhealthy.  Excluding.  Uneducating . And literally dangerous for patients, and also the vital alliance they should be building with health care staff and systems who truly want to improve. Dangerous. Deadly. And Wrong.  

1. Does this mean anything without a safety learning system? HSIB looking at that.  And that can be anything 2.without Whistle-blowers protection which does not exist , follow Minh Alexander and 3.without a proper independent expert route for patients to report harm events ( not complaints system)? ( latter on for consultation sometime, somewhere,  I fear plans to be scrapped by NHSEpatientsafety). I am very pessimistic and considering leaving the game where patients voices are fundamentally excluded despite token gestures, rhetoric, recognition things could be much better......

1. Does this mean anything without a safety learning system? HSIB looking at that.  And that can be anything 2.without Whistle-blowers protection which does not exist , follow Minh Alexander and 3.without a proper independent expert route for patients to report harm events ( not complaints system)? ( latter on for consultation sometime, somewhere,  I fear plans to be scrapped by NHSEpatientsafety). I am very pessimistic and considering leaving the game where patients voices are fundamentally excluded despite token gestures, rhetoric, recognition things could be much better......

How will patients voices be central when there is no patient harm reporting system with independent experts which is easily  accessible and fit for purpose. In fact it is up for being phased out. and when you Henrietta say it is not a subject for your office.  Deeds not words is what patients families want and need NOW . one year on no progress just more deaths, harm and institutional scandals 

Here is the advert. I think it is an important opportunity for a patient perspective to be institutionalised in what hopes to develop as an exemplar service https://apply-for-public-appointment.service.gov.uk/roles/5141

Ta. Yes I wrote about it here 

I fear it will be downgraded even further.  Patient leaders as worked out and articulated by David Gilbert vital. This paper below should be adapted for harmed Patient learning.  I am starting on something. Anyone there on hub team or linked want to help co write something? Ta Richard

CentreforMentalHealth_HumanisingHealthCare.pdf

Will you be interviewing the new Patient Safety Commissioner perhaps asking questions based on those raised by a blog here. I would focus mine on the vital value of harmed patients being in a leadership role in her Office and all undertakings,  and consider role of patients reporting harm events as there is no current system used.i could say more!

a damning indictment on the non existent and at best very fragmented tokenistic patient safety system. my only comment is more attention must be paid to patients views throughout the processes, which currently are even worse than the system itself. 1. Even reporting of harm is not catered for, but pushed to a complaints model or a now very restricted incident investigation system PSIRF where i cannot see a strong patient voice. This needs remedy as i argued earlier this year and this is on the backburner and probably will be downgraded further from what i have heard read here when i was slightly more optimistic 

2. but more substantially the patient voice needs to be empowered as is increasingly recognised in some services, like mental health and the same needs to be done for the whole safety and harm investigation and learning process. i refer to a leading expert in this area https://www.centreformentalhealth.org.uk/publications/humanising-health-care 

a damning indictment on the non existent and at best very fragmented tokenistic patient safety system. my only comment is more attention must be paid to patients views throughout the processes, which currently are even worse than the system itself. 1. Even reporting of harm is not catered for, but pushed to a complaints model or a now very restricted incident investigation system PSIRF where i cannot see a strong patient voice. This needs remedy as i argued earlier this year and this is on the backburner and probably will be downgraded further from what i have heard read here when i was slightly more optimistic 

2. but more substantially the patient voice needs to be empowered as is increasingly recognised in some services, like mental health and the same needs to be done for the whole safety and harm investigation and learning process. i refer to a leading expert in this area https://www.centreformentalhealth.org.uk/publications/humanising-health-care 

agree with above

further:

1. until patients reports on harm events are properly requested and responded to  (there is no single harm focused expert system- 

then the insights and expereinced of patients will be lost, ignored, unheard, taken as a @complaint'

2. until patients and their advocates as Berwick argued are empowered in all aspects of the system, not merely tokenistic as  editors, campaigners, writers then there will be no pone with pure patient interests to fight for change. we need patient leaders, the work of David Gilbery shows how it should be done https://www.inhealthassociates.co.uk/articles-reports/ and attached. empowering those harmed throughout the system is vital

CentreforMentalHealth_HumanisingHealthCare.pdf

please provide accessible version

The Royal College of Emergency Medicine have a Safe Care Committee  which are considering the question! I am hopeful. A valuable forum for others here to consult? https://rcem.ac.uk/safety-3/#:~:text=What%20is%20the%20Royal%20College,the%20speciality%20of%20Emergency%20Medicine

Watch for update.  Further delays in any improvement at all so continuing failure to allow patients families and public to properly record harm events . Dangerous health care where and when it occurs allowed to continue 

seem my comments in PSH blog on this letter.  more concerns..

interesting differences...less hierarchical

question: in role of patients, families, scoping of investigations? 

Patients need more than 'engagement'. I will write more soon  following being engaged in various processes over the last 11 years.  Experts by experience need to be at the core of all processes.  Understanding the harm and its consequences, and restorative learning and justice are essential . The interests of patients and communities of patients including harmed and neglected patients must spearhead this culture change. It hasn't even started. The treatment of whistleblowers and patients complaints via Trusts and PHSO illustrate the profound second level harms and injustices being perpetuated,  opposite to the learning from harm perspective urgently required.

So worrying indeed shocking.  I am soon to update my blog from just a few months ago

 with more negative news about NHSE Patient Safety where the massive potential role of patients families and public in raising safety concerns based on harmful events is being delayed further due it appears to a lack of resource indeed cuts in the area.    Even just the chance to discuss the future options for patient reporting with experts , outside the 'not fit for safety purpose ' both administratively focused ' complaints ' system and the blame focussed litigation system is being delayed to start at earliest april 2023 despite the patient role in this area being still suggested in NHS policies in mid 2021. I will write more updating this blog soon but invite personal messages with insights, concerns,  encouragement etc. On what I think  ( am I alone thinking this?) Is an urgent topic and massive lacunae in the (non)system. The patient voice is needed throughout systems and processes as Berwick reported but it is still being sidelined, deprioritised, delayed ( you pick the word ) by the powers with the role  and responsibility in this area. Agree PSLHUB and your subscribers??

the complaint framework is completely  and by definition , i believe ,inadequate to the task to get learning-wrong people, wrong skills and goals. learning and action is needed. yet there is no route for families to pursue apart from complaints system that is widely shared. hence i wrote my blog, there are potential routes for all but they have to be fought for  

important issues, my reflections on issues that need more exploration:

1. building back trust after harm events-one challenge-screen people for that challenge

2. safety netting and red flag issues so important with serious, changeable and particularly terminal conditions

3. how to recognise the power differential recognising the expertise patients and family carers may have in their wishes, values, condition, management issues around condition from past experiences, and then respecting and addressing. one of many aspects of shared decision making

4. transitions in and out of hospital-good communications so important but fiendishly complex from beginning to end

So sorry to hear . I would like to be connected with 'Susan' as I am about to enter  the process of learning from a palliative care investigation  and one element was a late diagnosis of metastatic spread where if this had occurred earlier, more valuable vital support could have been offered . Services are still grappling with this issue and in covid times with massive backlogs the danger is growing without better safety netting systems and also systems able to honestly listen to and learn from patients and families feedback

I would like to add one thing not adequately addressed. Where is the patient voice? What rights do they have in how care is delivered and the best way to respond to harmful events they report.  My story and call for action is one clear example , where the expertise and values of patients are surely paramount or cannot easily be trumped? 

Very useful to know. My story is around the risk of chronic pain management being undermined at a crucial time, without consent and how that could be learned from and minimised