The epistemic exclusion of harmed patients in the patient safety field: A call to action from Richard von Abendorff

Summary

In this interview, Richard von Abendorff explores the concept of epistemic exclusion. Epistemic exclusion can be defined as the continual rejection of a person’s expertise and knowledge because of their lack of power or position. Richard describes his experience of epistemic exclusion both as a family member and during his time in patient involvement roles. He explains how and why he believes epistemic exclusion dominates the health system’s response to harmed patients and their families and contributes to ongoing harmful care. Richard argues that this failure to take on the perspectives of people harmed by healthcare happens at every level and means that the system cannot effectively learn from harm incidents. He also describes the trauma, stress and feeling of alienation that not being listened to or taken seriously has on patients and families.

This interview is Richard’s final call to action before he leaves the patient safety field. He hopes the challenge of tackling epistemic exclusion will be taken up by those in the health system who have the power to change how the voices of patients and their advocates are valued and utilised—at all stages of learning and change from harm events.

A transcript of the interview is available below the video.

Content

Transcript

Lotty:  Hi everyone, I'm Lotty Tizzard from Patient Safety Learning and this morning I'm going to be talking to Richard von Abendorff about epidemic exclusion. Richard, would you like to just introduce yourself? 

Richard: Hello, my name is Richard von Abendorff. I've lived in London my whole life. For 14 years I was involved in both the provision, organising and also research of healthcare and social services for older people in the community—people with mental health problems and people with physical problems. So I feel I've seen the other side of services. I had then a ten-year gap doing other things. I got back involved for the last 14 years, so it spanned my whole working life, this time in a voluntary capacity, both as a carer for my mother and also a carer and advocate for my late brother in law—one who died in 2011, one who died in 2020—where I felt there was a need and there was an opportunity to get real learning about how healthcare services in some aspects failed them, and I thought my previous experience would help. I've not only been involved with their care, there's two other close family friends who died and they were found to have end of life care issues.

And I've ended up getting involved in various bodies like the Healthcare Safety Investigation Branch. I got involved with NHS England as a patient public voice, I got involved with PHSO The Facts, a group which brings together people who've had a bad experience of the Ombudsman. So I've been involved in networks of patients and families who've had a hard deal and have wanted to get learning. And this morning we're going to be talking about the idea of epistemic exclusion. 

Lotty: So can you just describe to me what that means, particularly in terms of patient safety? 

Richard: Yeah, I mean it's quite a lot of jargon and I don't want it to be excluding people, but I like the term because I think it captures my experience which is based on basically frustration over 14 years.

Epistemic means knowledge—relating to knowledge and its scope and how it is acquired. And one definition I find useful of epistemic exclusion means where patient groups’ opportunity to contribute to that knowledge, gain from it and see change from it is restricted. This exclusion occurs at all stages of the process from the generation and analysis through to the interpretation of evidence and decision making in healthcare settings.
So it's quite a profound issue. I'm specifically referring to exclusion of patients, families and their advocates. I've been very much that family, the carer and advocate.  And I'm interested in exclusion rather than another term often used, ‘epistemic injustice’, which I think is a result of that exclusion, because I'm interested in the process of it. I feel we've got to try to understand that process better in order to remedy it, because it has clear implications with regards to the learning that occurs and how much authentic patient voice and insights are generated. 

Lotty: You referred there to your own experience. Can you tell us a little bit about that? 

Richard: I want to put it in three ways. My experience over 14 years and particularly around my late mother and my late brother-in-law can be summarised in three examples. 

The first is the most general systemic example. I don't know if people know that with regards to patient harm events, there is no forum for patients to report harm as such, i.e. a place where independent experts can take account of and look and try to learn from episodes of harm. There is that for staff. Staff for many years had a model and a space to do that through the National Reporting and Learning System, and that's now being changed to something else called Learning from Patient Safety Events, but patients have never had that. So that for me is the most profound epistemic exclusion. The people who are harmed aren't given a portal. And the statistics around that are that in the old system, there are two million reports a year from staff and up to 50 patients would make reports because it wasn't made available to them. They weren't aware of it. 

Because coming on to the second example, the way patients who have experienced harm report events, people may know, the main way is through the complaint system. And I would add on to that the Ombudsman system. If they feel their complaints haven't been handled, they can also go through an inquest system and some go through litigation.

And I've been through the inquest system also. Now these aren't specifically addressed at looking at learning from harm, but they are the only avenues patients have. The concrete example is when I was trying to explain and map out the harm my mother had experienced. And I was asking the questions to be answered around it, to get learning in all of those processes I went through. It was a battle to get it authentically, fully, accurately expressed. The views of services, the views, for example, of the consultant took precedence and I had to battle all the way.

I had to go through the Ombudsman essentially three times and they, on three occasions had to review, reassess, and also look at their own processes. The inquest, eventually, after a very stressful process, did confirm an issue around medication hadn't been properly assessed. But the only outcome which I think really made a change and was registered in the system was around the use of a drug. My mother's pain was undermined by the use of a drug called naloxone. And having got nowhere through these systems, I had to purchase an independent report. I had to go to a Royal College, who then went to NHS Patient Safety England, and two safety alerts were issued. That was outside the system, so the system itself excluded the voice and the evidence of myself as a family advocate who had researched it very carefully. So that was the second example. 

The third example I would give, and there are many concrete examples, but I'm just going to give the general overview, was that I have in those 14 years got involved in something called the Healthcare Safety Investigation Branch, which has now morphed into a new body called HSSIB, which is meant to pick a very few cases and investigate and get learning. And in many cases, they engage with a family to provide a reference case. And whilst I was involved in an advisory capacity with that body, at the same time, sadly, my brother-in-law died of a very painful, aggressive cancer, a sarcoma. There were issues around the patient care and I thought this would be a very good case for them to investigate. So me and my family, my wife is his sister and his widow is my sister in law, were all involved as a family and subject to one of the investigations by this body, which at the time was seen, and is still seen, as a model of patient engagement, involvement and independent expert investigation. 

But what I found was that it was once again an extremely frustrating process from the scoping of the investigation to the deciding on what learning comes from it. The patient voice is very limited and very minimal. Even when it came down to describing the events themselves, what happened. These events were intrinsically part of the stressful and traumatic process for my brother-in-law, and there were episodes there where the family had a clear story to tell. We remembered what happened. We'd consulted the notes. We went into all the details, but when the report came out, various drafts and the final report, some things were edited in such a way as to exclude that voice. And the concrete example was at a crucial moment he wanted to get his GP, with whom there wasn't a good relationship as it was a very limited service in that area, to assess why pain had recurred, he couldn't get an appointment when he needed it.

And in the end, he had to go privately to get the support, which finally led to the diagnosis that actually everything had spread and he had a few weeks to live. But this story was not told authentically. The research, the investigators just went to the GP practice, read the notes, talked to the practice and said, this is what occurred. And it was contrary to a very clear story we were asked to recount and we told and explained. There may be two sides to the story. This led to the feeling of isolation, a lack of support, no one understood what was happening. This carried on and was part of the story of the poor palliative care he received in the end, but that wasn't engaged with.

Lotty: Thank you, Richard, for sharing that experience, that sounds really difficult. What do you think the implications are for working with patients in the field?  

Richard: There are two things. Firstly, there is this what's called compounded harm. Firstly, patients experience the original harm. They've gone to health services to help get help and cure or management and palliation. And in some cases, sadly, they get the opposite. It doesn't help, and it may cause harm. That is compounded when then they go to what they think are independent experts who want to get learning, who don’t listen to the patient and get the full story. In the case of my brother-in-law, we felt the outcome of that whole investigation led to recommendations which we didn't believe would have made any difference to his care if they'd been implemented. And I think there's a powerlessness there and at times, like many patients, you're almost treated as you are the problem, you are gaslit. In one case, I was told “you clearly want to do your own investigation,” because I was trying to provide lots of information, lots of insights. Whereas I was trying to provide the best possible investigation, by giving the maximum information, my questions and our family's questions and suggestions. Saying too much, is seen as a challenge, I think. 

I think there's an increasing recognition in research to involve patients and hear their views in policy development. In care, particularly when you're assessing a patient, you're looking at how they understand their illness, how they manage it, how they're going to manage any treatment, giving advice. The view of patients is vital. So when this care has gone wrong, when harm has resulted, it is very surprising that the detailed insights of patients themselves are not considered of value. There are questions around that. 

A blog has recently gone on your Patient Safety Learning site about the value of patients’ insights and how to categorise them and how to understand them. And that paper talks about how services should facilitate that. But I would say we're sadly at the wrong place because in the case of patient safety, it's not a question of this being facilitated. It's actually how it should be taken seriously and acknowledged as existing. The rhetoric in investigations and harm and learning is that the patients have valuable insights. They're the only people who see the system from the outside. They see all the different services and the interaction with them rather than any one part of the service. Their insights, views and experiences are valuable to explain what is happening and the impact it has on patients. So it's a bit perplexing why those insights aren't drawn upon by those meant to investigate harm.

To give an example with regard to my late brother-in-law's care, the family did its own report to complement the formal investigation, which was published on the Sarcoma UK website, and three eminent palliative experts have read it and said that actually says a lot of valuable things. Sadly, even that hasn't, I think, got to the audience I'd like to get it to and that's another reason I want to contribute here because in the case of my brother's care, it was oncology services and community services that were the ones that then get you to palliative services, which may have been able to make a big difference when a difference could be made. 

Lotty: So you talked Richard about transfers of care and how patients and families are really the ones who see that in a way that no one else does. Why aren't families being consulted about how we overcome all the errors that happen there? And what could be done about that? 

Richard: I mean, the question may be not why families aren’t consulted, because they probably are consulted if there was good research, but I would give examples of how they're ignored. What are the insights they can share if they're given the opportunity, if they're not excluded is downplayed? 
One reason is because you'll need two groups of experts there, or possibly three. You'll need the experts who understand that one service, and the organisation of it. You'll need the experts who understand the other service, and then you'll need someone who's able to reconcile that, and hasn't just got one hat on, or one interest, but looks at how the services should be managed, better integrated. This is a challenge because services have enough problems just maintaining their own views and patients obviously may have strong views on that but they're addressing issues which no one is addressing and there isn't the expertise there. My challenge is that you need to involve experts in investigations as well as patients who are interested in making these challenging observations and maybe coming up with challenging solutions.

When I met the chief medical advisor for the Ombudsman many years ago, he said so many solutions to problems are simply pulled out of the drawer, i.e. everyone knows there's a problem, but they try to reduce it to a simple problem, which they're already working on. For example, the issue of retrospective notes. Things are picked up which can be done internally, which don't involve systemic changes. And I have to say this, with regards to HSIB, now called HSSIB, it does recognise the need for system learning. And system means systems and interplay between systems. And in some of their reports, they try to do that.

Where the gap falls is where there are complex care issues. Where you need the right expertise and patients may be the starting point at least to get that, but it is a challenge and it involves a lot of work, a lot of thinking and a lot of discussion and time and I don't think they're resourced to do that, but they should be. 

Lotty: In your opinion, Richard, what causes this epistemic exclusion? 

Richard: One issue I would say is I think there needs to be more research about this to really get to the bottom of it. Because I don't think we have grasped that. Some terms are used around it. For example, the notion of independent investigation. That was used in our case to say, “but we're independent,” in order to justify that they weren't listening to patients. But surely no one's talking about independence of the patient's view? It's independence of the service, independence of the model. Maybe at times, if there's a need to change the model that we consider how service is organised, but independence, I think, has been misused and is being misused. The term 'expertise' is used, but do not patients have some expertise in managing their care and in managing services and getting the best out of services? It's interesting in both experiences I've had in the family. In one case, it was about the intersection between one service and another in hospital, in the other between community and oncology services and palliative service. Who has the expertise and how they interplay? In neither case were the experts of that or people outside that involved. So, I think that's one of the problems, the wrong independents, the wrong experts. 

Fundamentally, however, I think another dimension to it, it's about power. The patient is powerless in so many ways. And when it comes to who's running the investigation, the patients have no role. You've got this independent body which has all the power and consults the bodies who are in power. They consult the people who write the notes. They consult the policy makers. Patients, patient voices and advocates are powerless.
I did look up, I'm not an expert on this, knowledge and power. And if we're talking about knowledge, and I'm saying power, and I just want to give this quote, according to Foucault's understanding, “Power is based on knowledge and makes use of knowledge. On the other hand, power reproduces knowledge by shaping it in accordance with its anonymous intentions.” 

I think I'd like to reduce it to something slightly less contentious and less political and less extreme. But if you are going to hear the patient's voice in some complex cases, they are going to be challenging. If they've got a different understanding, they are going to be challenging by definition. They may be challenging the understandings of those in power. They may be challenging policies. They may be challenging professionals. They may be challenging ways services are organised. Are the investigations open to that challenge? When systems and institutions are challenged at their very core about what they're doing, there's resistance, there's anxiety, and there's a closing up. They cannot handle that challenge. 

Lotty: So we've unpacked some of the issues and some of the experience that you've had in trying to raise these issues within the health system and other bodies. Can you tell me how you think we start to overcome these issues? Are there practical things we can do? And maybe you could talk a little bit about restorative justice, which we hear quite a lot about at the moment. 

Richard: Yeah, I think restorative justice is recognising the trauma and harm. There's a current consultation going which talks about trying to improve and repair relationships, bringing together those who are part of the harm event to try to get repair and a positive way forward. 

What I think it misses is that we need a system change and epistemic exclusion argues that we've got to understand what causes that harm in those investigations. To talk about the harm relationships almost focuses on the individuals. And I think, HSIB does recognise these are system issues. Always there are harmed patients and there are stressed staff, but the system that creates that and the system that allows that and excludes the patient voice in the learning is the most important. And I still think the roots of that haven't been got to. I think more honest research has to be done with patients.

One thing I was very shocked by, when engaged with HSIB was that there was no proper evaluation drawing on family views to hear their experience of being subject of investigation, or the evaluations that were done were very cursory tick box exercises and didn't really get underneath it all. It's interesting that the model of patient engagement used by HSIB, which is seen as the model everyone goes with, has come from police. Whilst there may be wonderful insights on models of working with victims from that. The contradiction is that just like police and victims, who works with the victims of police harm? We've read about incidents where police cause harm, so it is much more complex than that. When health services being involved in harm caused to their own patients see it as a simple victim approach and victim engagement… it is much more complex and subtle.

So I think we need to come up with better models of working with families and involving families and hearing their experience.  I am getting involved with a long-term project by Josephine Ocloo, looking at epistemic exclusion and patient safety participation, which is linked with King's College London, and the link will be shared. I think we need more research. 

Coming back to the issue of power, it has to involve empowerment. Somebody who I really respect who has looked at in the care sector, but not much in the patient safety sector is David Gilbert. He’s come up with models of involvement of patients in all aspects of care—in evaluations, in the board, in the management and in the feedback.

And let's not forget in patient safety, Don Berwick, who's regarded one of the fathers of it, an American expert, said patients have to be involved from “ward to board.” That does not exist in any meaningful way. And so that is another clear thing I think that needs to be done. 

Lotty: Okay Richard, so you've described some research you're going to be involved in, which sounds really great. What kind of future projects or things in terms of patient safety are you going to be involved with? 

Richard: I have made this my last planned public contribution on patient safety. I have made it about epistemic exclusion because I believe that concept captures, summarises, and indeed exposes many current and past attempts to engage with patients. In my view, it exposes them in effect, if not intention, as being tokenistic or paternalistic, and at times even pathologising traumatised patients. We don't need just relationship healing, we need system healing, indeed system transformation. Epistemic exclusion, I believe, is baked into the fabric of patient safety, and I don't think the same thing occurs in other areas of the NHS, and I don't know why.

I'm offering a challenge, and I have valued the support of patient safety learning and the hub who have been able to publish and help edit some things I felt needed to be said. I didn't have to set up my own website or have my own campaign. They have been part of the solution in the long term, at least giving that voice and space.

My final way of putting it is, it’s been like yelling down a well. Nothing comes back. And sometimes there's no echo. It feels like time and energy have been wasted and it has had a cost, not just on myself, on my wife, on my sister-in-law. I've worked hard trying to persuade them to stay involved and we have, but at the end of the day, we've all come with the same conclusion. They don't really want to hear you and the system beats it out of you. A lot needs to change.  

Lotty: Based on that challenge you talk about, what do you want to see happen? If you're being hopeful about the system and about patient voices and overcoming this issue, what would you want to see happen next?

Richard: Okay, I'll put it two ways. I just want to open the discussion on what I think is essentially wrong. Patients, families and advocates are epistemically excluded, and I want others to engage with this honestly, openly, transparently, with ability to take on that challenge. I want experts, patients, experts by experience, narrative experts, co-producing experts and clinicians who are interested in relooking at their system and services and are fearless in that, to engage with this and take the debate forward. And I want everyone to be constantly aware. Harmed Patients Alliance, in their current consultation, argue that the testimony of harmed patients should be an essential part evaluating services. And this is my testimony, and I want people to take that on board and analyse it.

Related reading

These articles in the interview:

• Epistemic Exclusion and Patient Safety Participation Evaluation (EPSPE): conceptualising a knowledge framework for involvement, learning and change with harmed patients and families from diverse backgrounds. Richard is sitting on the advisory group for this new research project, which is being led by Josephine Ocloo at King's College London.
• The Patient Leadership Triangle: A practical engagement model for transforming healthcare by David Gilbert, which relates to empowering patients in healthcare.
• Sarcoma UK: Family insights from Dermot’s experience (reflections on the HSIB report) which shares lessons on end of life care from Richard's brother in law's experience. Richard contrasts this with the Official Healthcare Safety Investigation Branch (HSIB) report Variations in the delivery of palliative care services to adults.
• How can patients' voices be heard and acted upon when they attempt to report incidents of harm?
• Beyond experiential knowledge: a classification of patient knowledge (4 June 2024)

About the Author

Richard spent the first 14 years of his career working in the health, university and social services sectors in a variety of roles related to supporting older people with physical and mental health problems living at home. After a break from these sectors, he later became reinvolved as a carer and advocate for four older relatives and friends in their last months of life. For the last 14 years he has been campaigning and working in a voluntary capacity to improve learning from patient safety incidents. He has done this both through his involvement with family members and by working as a harmed patient voice in various bodies including NHS Patient Safety and the Healthcare Safety Investigation Branch (HSIB). He has also worked with groups of families supported by the Patients Association and PHSOthefacts. Most recently, he worked with Sarcoma UK and the Marie Curie Research Voices Group. Based on personal experience, he argues that the voice of patients and their advocates must be given more prominence and respect to enable health services to learn effectively from harm events.