Project EPIC on World Mental Health Day 2024

On the occasion of World Mental Health Day (#WMHD2024), we asked project EPIC team members to share a quote and a resource relevant to their work on epistemic injustice in healthcare.

Jodie Russell

Jodie is a researcher working at the University of Birmingham on one of EPIC case studies. Jodie is the author of "Problems for Enactive Psychiatry as a Practical Framework", published open access in Philosophical Psychology, highlighting the limitations of enactivism in reducing the harm and suffering experienced by individuals diagnosed with mental disorders.

 

Lisa Bortolotti

Lisa is an investigator in project EPIC, based at the University of Birmingham. Lisa has co-authored with Kathleen Murphy-Hollies a paper entitled "Why We Should Be Curious about Each Other", published open access in Philosophies, arguing that curiosity a good antidote to epistemic injustice. Lisa also edited and contributed a chapter to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Dan Degerman

Dan is a researcher on project EPIC, based at the University of Bristol. Dan's research explores the idea that it might not always be good to talk about one's mental health. If you want to know more, you can read Dan's article written for the Conversation.

Havi Carel

Havi is project EPIC principal investigator, based at the University of Bristol. Havi's work focuses on the experience of illness and she pioneered the application of the notion of epistemic injustice to healthcare. Watch this video where she introduces project EPIC.

Rabih Chattat

Rabih is a project EPIC partner, based at the University of Bologna. Rabih's work focuses on psychosocial interventions in dementia and the clinical psychology of ageing. He recently wrote a post for the EPIC blog on good living and social health as applied to dementia. Rabih also contributed a chapter on these themes to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Jude Williams

Jude is the project manager for EPIC at the University of Birmingham. Jodie volunteers for the Choir with No Name, the choir that gives homeless people a voice. If you want to know more about what the Choir is about and what impact it has, please read this.

Matthew Broome

Matthew is an investigator on EPIC and directs the Institute of Mental Health at the University of Birmingham. He recently co-authored a paper with Lucienne Spencer on epistemic injustice and claims of suicidality that can be found here. Together with Michael Larkin, Lisa Bortolotti, and Rose McCabe, Matthew contributed a chapter on youth mental health to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Eleanor Byrne

Eleanor is a researcher on project EPIC, based at the University of Birmingham. Eleanor works in the philosophy of medicine, on conditions that impact on the mental and physical capacities of those affected. In this podcast, she discusses an area at the intersection of philosophy and psychotherapy, focusing on experiences of fatigue.

Elisabetta Lalumera

Elisabetta is an EPIC project partner based at the University of Bologna. Elisabetta works in the philosophy of medicine. You can read this blog post where she talks about how to achieve epistemic justice in the biomedical paradigm. Elisabetta also contributed a chapter on digital health technologies to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Rose McCabe

Rose is an EPIC project partner based at City University, London. Rose specialises in research on clinical communication and contributes to the design of interventions to improve the capacity of professionals to listen to people who seek support for their mental health. See an example here. Together with Michael Larkin, Lisa Bortolotti, and Matthew Broome, Rose contributed a chapter on youth mental health to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

Lara Calabrese

Lara is interested in ways of explaining and ameliorating the stigmatisation of people with dementia. She is a researcher at the University of Bologna, and is going to collect the data for one of EPIC case studies. 

Luigi Grassi

Luigi is an EPIC project partner, working at the University of Ferrara. Luigi recently shared some of this research interests in dignity and stigma in end of life care on the EPIC blog. Luigi also contributed a chapter on these themes to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot)

Kathleen Murphy-Hollies

Kathleen is a researcher at the University of Birmingham. Kathleen has worked with some entomologists to better understand delusions of parasitosis, when people come to believe that their bodies have been infested by insects. To know more about this fascinating condition and the challenges it poses, go here.

Martino Belvederi Murri

Martino is an EPIC project partner, working at the University of Ferrara. Martino recently shared of his research interests in demoralisation and testimonial injustice in an acute psychiatric ward on the EPIC blog. Martino also contributed a chapter on these themes to the forthcoming open access book on Epistemic Justice in Mental Healthcare (Palgrave Pivot).

"Trauma is not being seen or heard"

 epistemology 

noun, epis·te·mol·o·gy i-ˌpi-stə-ˈmä-lə-jē

the study or a theory of the nature and grounds of knowledge especially with reference to its limits and validity

Two weeks ago I went to dinner and drinks with members of the London ACEs (Adverse Childhood Experiences) Hub, it was a small group in which everyone came from very different backgrounds and professions including some with lived experience. You can see some of us here.

It struck me that the diversity of our group was evidence that expertise in Adverse Childhood Experiences and developmental trauma cannot be held by any specialty. Nobody can claim epistemic dominance. Like the blind men feeling an elephant and each being certain that the whole creature resembles the part they are feeling, in matters of trauma nobody can claim to be able to see the whole picture. Modern medicine is structured with specialists at the top and generalists (like GPs) at the bottom.

 

The Telegraph newspaper has had a series of headlines recently pointing out that GPs don’t know enough about cancer or antidepressants or anything else. According to The Telegraph if people are sick, they ought to a specialist. These are easy accusations to make and have been news headlines for my entire career and will continue until journalists understand and value the fact that generalist knowledge about the ways different illness interact is not the same as the accumulation of number of different specialisms. There were two GPs at the LAH dinner and drinks, evidence perhaps that GPs more than any other specialty see the ways that biography and biology are constantly affecting each other leading to familiar pattens of physical, psychological, and social disruption. Nevertheless, our medical perspective only captures part of the picture which is why our group includes people working in criminal justice, racial justice, education, community activism, parenting support, and more. We depend on one another to see the whole picture.

A few days after the dinner, I attended an interdisciplinary workshop about trauma with philosopher Havi Carel and a range of speakers including philosophers, literary scholars, educators, and a music therapist. Once again, none of us could claim epistemic dominance. Professor Havi Carel is perhaps best known for her work on Epistemic justice in healthcare. Epistemic injustice in healthcare happens when a professional assumes that because of certain characteristics their patient is an unreliable narrator and interpreter of their own experiences. Consequently they fail to listen to or take seriously what their patient has to say. The only story that counts is the medical history and the only interpretation that matters is the diagnostic formulation. Patients experience not being seen or heard, i.e. invalidation.

People who are suffering the consequences of trauma, living with what I describe as the trauma world of hypervigilance, shut-down, toxic shame, dissociation and harmful coping strategies, are especially likely to have characteristics that professionals assume render them unreliable witnesses. These include being a child or female or trans, being black or other ethnic minority, being neuro-divergent or having a mental illness, having any kind of physical or mental disability, having an addiction past or present, being homeless, having low levels of literacy or educational attainment and so on. Intersectionality matters, so a Black woman with a mental illness and an addiction is subject to multiple assumptions and is especially vulnerable to Epistemic Injustice. One of many valid definitions of trauma that I’ve heard from researchers including Bessel van de Kolk and Jacob Ham as well as survivors is,

“Trauma is not being seen or heard.”

Trauma happens under conditions of overwhelming stress where those affected are unable to talk about what’s happening because it is too dangerous or there is nobody who will listen. They learn to bottle it up and in so doing, increase the risk of the kinds of inflammatory and autoimmune disease that are hugely over-represented in people with traumatic life histories. A healthcare professional represents someone with power who may cause the patient to re-experience feelings of powerlessness, but also has the potential to provide a safe environment and attuned presence. If they feel safe enough, patients may want to talk about what has happened to them. If we refuse to listen or don’t listen carefully enough, then they may experience the traumatic invalidation that they have suffered before, and the potential harm is enormous. Patients with trauma are at greater risk of Epistemic Injustice and suffer greater harm from it.

My own Achilles heel as a doctor is explaining too much. I recently discovered a quote from Donald Winnacott, a child psychotherapist and paediatrician who worked near my practice over 50 years ago and it was reassuring to know that we have at least this in common:

“It appals me to think how much deep change I have prevented or delayed in patients in a certain classification category by my personal need to interpret. If only we can wait, the patient arrives at understanding creatively and with immense joy, and now I enjoy this joy more than I used to enjoy the sense of having been clever. I think I interpret mainly to let the patient know the limits of my understanding. The principle is that it is the patient and only the patient who has the answers. We may or may not enable him or her to encompass what is known or become aware of it with acceptance.” Playing and Reality

In my teaching about trauma, I use a quote from Leslie Jamieson, The Empathy Exams:

“Empathy is asking the questions whose answers need listening to.”

I hope to persuade the doctors and students that I teach, as well as constantly reminding myself that you can demonstrate your expertise by the questions you ask. In so doing we can enable patients to tell their stories and come up with interpretations that help them make sense of their experiences. It’s important to remember that figuring why you are like you are doesn’t necessarily make things better, and may even make things worse, but it is a necessary part of a healing process. Making sense of painful lives through stories is not a radical departure from clinical medicine, but an essential and inseparable part of it. Stories are how medical knowledge is transmitted and ‘how doctors think’ even if we’re unaware of it.

In summary, understanding epistemic (in)justice is essential for trauma-informed care because patients affected by trauma are more likely to not be listened to or taken seriously and are more likely to be harmed by invalidation. Because no specialty within medicine can claim epistemic dominance, they experience what Psychoanalyst Michael Balint described as the ‘collusion of anonymity,’ where “the patient is passed from one specialist to another with nobody taking responsibility for the whole person.”

The answer for me lies in creating a safe environment and continuity of care with well cared-for and respected generalist professionals who can truly listen.


Thanks to Flo, who has been helping me teach this and has inspired me to try to figure this out.

This post is authored by Jonathon Tomlinson who has been a GP and educator in Hoxton, East London for over 20 years.

Jonathon is especially interested in the intractable problems that characterise 'deep end' general practice like complex-trauma, chronic pain and the intersections between biography and biology.