- @mikey3982 @trishgreenhalgh @euan The question is what the doctors thought of the consultations. I think of Rashomon in these situations. 6 minutes ago
- @harrylongman @GPatHand I wonder what it's like for complex multimorbidity 11 minutes ago
- cc @thecoureur this is mad twitter.com/david_colquhou… 2 hours ago
- @thecoureur @PhilCavell @DrDavidWarriner @gorman_colin @Velocentric thanks, I knew you'd be able to throw a bit more light on it 2 hours ago
- @DrDavidWarriner @drlgblewis twitter.com/gorman_colin/s… 2 hours ago
- Book list
- Dr Jonathan Tomlinson Law And Justice Interview – SoundCloud
- The Adverse Childhood Experiences evidence base–a wake up call to radically redesign Children’s Mental Health Services.
- What happens to empathy in medical education?
- Trauma and the self
- Trauma and testimony
- We need to talk about trauma
- What is a GP?
- An ideal specialist service?
- Don’t talk to me (an evidence-based poem)
- Hayfever and The Inverse Care Law
- Empathy, shame and medical professionals
- Bad encounters
- Poverty Medicine: A GP and medical educator’s journey
- Hmm, this Feels a Bit Unusual: My Advice for Healthcare Professionals when Dealing with Something Rare
- Poverty medicine: General practice and vulnerable patients
- Shame and redemption
- The hidden art of reassurance
- Anxiety and the medical profession
- What is a 7 day NHS and what will it cost?
- Simple Isn’t Easy – changing the way the NHS communicates with patients
- Empathy and shame.
- Critical Reflection
- Guideline centred care
- Recording consultations
An interview with Jane Mulcahy about the ways childhood trauma manifests in adults who present to healthcare and criminal justice
Listen to Dr Jonathan Tomlinson Law And Justice Interview by Jane Mulcahy #np on #SoundCloud
The Adverse Childhood Experiences evidence base–a wake up call to radically redesign Children’s Mental Health Services.
For any readers based in Hackney where I work, I’m reposting this in response to Saturday’s SAFAPLACE conference at Stoke Newington Secondary School. What was an excellent conference was notable for there being no discussion about the impact of adverse childhood experiences. I’m very grateful to discover Elizabeth’s work
Throughout my twenty year career as a psychologist working in Specialist Children’s Mental Health Services (SCAMHS) two frequently repeated mantras have been amongst the biggest sources of frustration for me:
“It’s a social problem, not a mental disorder” and “the child needs to be stable to access therapy”; the latter often responded to with the helpless reply “but the child need’s therapy in order to be stable”. Indeed, much of the tension between Health and Social Care can be boiled down to these two themes.
I understand, of course, that service design and a splitting of health and social care lies at the root of this; along with a scarcity of resources and a need to carve the work up somehow. However, as a psychologist employed by health, I see a child’s context and life experiences as fundamental to their mental health and emotional wellbeing. Ironically, when it comes down to individual…
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An unhappy patient comes to a doctor to offer him an illness – in the hope that this part of him, at least (the illness) may be recognizable. His proper self he believes to be unknowable. In the light of the world he is nobody: by his own lights the world is nothing”
But if the man can begin to feel recognised and such recognition may begin to include aspects of his character which he has not yet recognised himself, then the hopeless nature of his unhappiness may have been changed; he may even have the chance of being happy.
John Berger, A Fortunate Man
“One of the greatest diseases is to be nobody to anybody”
After a few weeks of watching second year medical students talk with patients I have been wondering about where, when and how empathy is lost during medical education and clinical practice.
The students enjoy talking to patients and listening to their accounts of living with diseases such as Parkinson’s disease, fibromyalgia, depression, heart disease, and diabetes. They are moved by suffering and curious about patients’ lives and their life histories. By so doing, they show natural affective and cognitive empathy.
My patients enjoy coming in – they don’t have the pressure of a 10-minute appointment within which they have to condense their symptoms into a problem to be solved for a stressed doctor who is running late. They have up to an hour of conversation without a goal in mind. They are under no pressure to impress their doctor with their weight loss or better medication compliance. Seeing the students looking more anxious and even less sure of what to say than they are themselves, they enjoy a levelling of the usual differences in power and confidence and take the opportunity to guide and reassure the students. We call them ‘patient-educators’ in recognition of their role.
Epistemic justice in healthcare is when patients have sufficient opportunity to give an account of themselves and their symptoms and the meaning and significance that they ascribe to them. We see this in the patient student encounters and encourage it.
Cognitive empathy is the ability to understand another person’s life and experiences. Affective empathy is the capacity to be emotionally moved by another person’s experiences.
With time and experience of these kinds of conversations, students learn that often patients need doctors to ask ‘the questions whose answers need to be told’. Patients won’t just volunteer information unless they can trust them. Trust can be gained by the student proving, by the questions that they ask, that they are aware that certain illnesses are associated with symptoms that might be embarrassing, experiences that may be hard to talk about, feelings that might be shameful, social stigma, prejudice and alienation. My students, my patients and I learn this together.
How, why and when is this empathy lost?
Understanding grows with experience, but opportunities for informed, compassionate, curious questioning can be squeezed out by pressures of time and the demands of specialism.
Students are expected to ‘take a structured medical history’. Conversations which once followed cues, in an attempt to understand and make sense of experiences are gradually replaced by structured interrogations guided by computer templates.
When they qualify the consultation will be less about understanding than gathering data for the health-service they are working in – because information that can be coded as data can be used for performance management, quality improvement and financial remuneration. The fruits of empathy – stories about meaning, context and experience that are unique by virtue of their subjectivity will be buried in the electronic record as ‘free-text’ – only available to those who know where to look. To satisfy the need for data, symptoms are defined as disease – headaches become migraines, dry skin – eczema, joint pains – osteoarthritis, back pain – ‘lumbar disc degeneration’, grief – depression, destitution is coded as ‘generalised anxiety’ and people who have suffered abuse are labelled with ‘personality disorders’.
In trying to visualise these different demands on a consultation, the pressure of time, the structure of a medical history, diagnostic coding, and data surveillance, I imagine a pie-chart being divided into ever smaller slices – and am reminded that over time, the patient has been squeezed out. Epistemic injustice takes over.
In time, students will become doctors who have learned to distinguish illness and diseases they can treat from those they cannot. And this, rather than the nature and degree of suffering will be their chief concern.
Affective empathy is lost when clinicians become hardened to suffering. The first patient they meet with depression or a terminal illness can be an intensely moving experience, but over time, especially if they are exhausted and hurried, and unable to attend to their own emotions or reflect with their colleagues, threatened in an unforgiving culture, they may lose their capacity to be moved.
I think that empathy is lost in medical education and clinical practice. Perhaps one reason is because we don’t value the empathy our students have to begin with and don’t do enough to nurture it.
If we pay more attention to this as well as the factors that undermine it, we could do more to help it flourish.
Up until June 14th 2004 Joe was a consultant anaesthetist at a London teaching hospital. That day at work, during an operation he had a panic attack. He froze and as if in a trance, walked out of the operating theatre. The patient suffered serious harm and Joe was suspended from work and struck off the medical register. He hasn’t worked since. After he was struck off, he was referred to a psychiatrist for assessment who diagnosed Generalised Anxiety Disorder and Obsessive Compulsive Disorder and started him on the first of what was to be, over the next few years, many different psychotropic medications. He was referred for CBT (Cognitive Behavioral Therapy) and psychotherapy, which uncovered the extent of his anxiety, but did nothing to relieve his symptoms. On the day he walked out of the operating theatre, his life changed, from being outgoing and popular, he became reclusive and paranoid. His wife, a consultant surgeon continued to support the family, but they had to move to a smaller house and take their children out of private school.
I have been Joe’s GP since he left work and we meet about 3-4 times a year. Usually our meetings are quite brief. He always begins by gesturing to the waiting room and apologising for wasting my time, because there are people ‘out there’ who are much sicker than him, and I reciprocate by doing my best to assure him that I’m very glad to see him, and he is in no way wasting my time. Gradually we have established trust and a good rapport. I’ve not delved too deeply into his past before, partly because I’ve assumed that it’s something he’s been going over in therapy, and partly because our consultations are usually preoccupied with his present circumstances and working out issues with his latest drug treatment. At present he is taking two antipsychotics, two sleeping tablets, and an antidepressant. This makes me anxious and appears to have done little for his anxiety.
Unlike the transient anxiousness that naturally follows a traumatic event, when the symptoms are severe and enduring there is always a back story, but discovering it can take a very long time. The acute symptoms need to be tolerable and trust needs to be established. In writer/ editor Scott Stossell’s account of anxiety, My Age of Anxiety he asks ‘where has my anxiety come from?’ and explores, in detail, the complex aetiology which includes family history, early life experiences, human biology, social, environmental and political factors. All play a part. Psychiatrist Linda Gask asks the same question about her depression in her book, The Other Side of Silence and comes to the same conclusion. I have a strong family history of PTSD, so I have a personal interest.
I recently asked Joe where he thought his anxiety came from. “You know”, he said, referring to the panic attack in 2004. “That’s when my life changed, I was fine up until then”.
“Yes, I mean, is anxiety a family trait, were your parents, grandparents, siblings and so on anxious? Could there be an anxious gene?” Joe’s posture shifted, he folded his arms, his shoulders became more tense, his hands clenched. “No, not really, my sister perhaps, but we’re not really close”. I knew that Joe grew up in Leeds, he was the first doctor in his family and the first to go to university. I knew his sister had suffered with depression and had tried to commit suicide, but little else.
“What about your parents?”
“Not really. My dad was a bastard though. He would slap my mum about and smash the house up. My sister and I hated him”. Joe’s posture became more tense, he gritted his teeth and crossed his legs. “I remember this holiday when I was fourteen – we were going to Blackpool and I refused to go, I locked myself in my room and refused to leave. My dad tried to batter the door down, but couldn’t so he just said, ‘Fuck it, we’re going without you’. And they went without me for a week.”
Joe and I sat in silence for a while. He was curled up on the chair, trembling. Just as we imagined him as a 14 year old boy, this 50 year old anaesthetist besides me.
More came out. He has always been anxious, but was able to hide it, he threw himself into his studies and spent time his evenings in the library to avoid confronting his dad, and got into medical school where he did very well. After he qualified the anxiety became more of a problem with the pressure of work, especially when he met with emotionally distressed and traumatised patients. Anaesthetics seemed to be suited for him, but as he got older, especially, once his children began to grow up, his anxiety became harder to contain. Rather than risk being labelled he avoided going to a doctor and started using drugs from work. Soon this escalated and he was using Fentanyl (a strong opiate) until he realised he was addicted. He was trying to wean himself off and had almost succeeded, when he had the panic attack, probably due to the withdrawal effects.
“Nothing the psychiatrist has prescribed worked as well as the Fentanyl”, he said. “I was fine on that, never missed a day at work, never made a mistake. You won’t write this down, will you? I’ve never told anyone about it before.” “Didn’t they test you?” I asked. “No, and I would probably have been OK, because I was basically already doing cold turkey that day. If you could prescribe me Fentanyl now I’d stop all this other stuff, because it was the only thing that ever worked. But I know you can’t do that”.
Fentanyl like a lot of other drugs, especially opiates, psychotropics, neuroleptics and anti-depressants, for example heroin, naltrexone, Quetiapine, Pregabalin, Amitriptyline and so on, as well as alcohol – all help patients to dissociate. Dissociation is like the outer-body experience that a frightened child can achieve naturally and spontaneously as a defense. As we grow older our brains become less flexible and it becomes harder and harder to dissociate and so we use exercise, or work to cope. It is one reason why there is often a gap of decades between trauma and its aftermath. With time, it becomes harder still and strategies become addictions. For Joe, Fentanyl kept the frightened child separate from the competent anaesthetist. Nothing he has been prescribed since has been as effective.
The child that was terrified of their dad is despised for being afraid and is shameful. The high achieving child that went to university and became a successful anaesthetist is the self that is socially and personally acceptable. We all have different selves, doctor and dad, cyclist and mother and so on, but the traumatised self is despised and a source of shame and so the split is extreme and has to be maintained by any possible means of dissociation to fend off the intense anxiety that it brings.
Too much of the time I think we are content to continue to prescribe drugs to patients under the illusion that they are treating a disease rather than helping them dissociate. In some instances what we prescribe can help keep the symptoms at bay, but most of the time the anxiety persists, no matter what we prescribe.
Drugs probably do have a place in treatment, but so do top down (psychotherapeutic) and bottom up (physical) therapies that enable patients to reconnect with the traumatised self through their body and mind. We could both see how Joe’s traumatised self was inhabiting his tense and hunched body, it wasn’t just in his head. For him to recover he needs to identify the traumatised child and accept him as a part of himself. After a lifetime of shame and dissociation this is no easy task.
I’m not sure why this kind of understanding is missing from so much of medicine. Perhaps because it means shining a light on ourselves as well as our patients, and recognising that we’re not so different after all. Perhaps it’s a post-Freudian backlash and an obsession with biology and objectivity that is blind to subjectivity and experiences. Perhaps it is because financial incentives are constraining clinical curiosity – demanding that every patient narrative is recorded as a clinical code. Perhaps it is a fear of judging parents or others who are not around. Probably it is all of this and more.
One thing I am sure, is that some of the kindness and compassion that is so often missing in healthcare, in the ways we treat ourselves, our colleagues and our patients, could be recovered if we were more attentive to what makes us who we are.
It’s often assumed that it is good to talk. But talking is not without risks.
The main mental illnesses/ symptoms that patients present to me (a GP) are chronic anxiety +/- OCD and PTSD +/- chronic depression.
Chronic anxiety and chronic depression are like chronic pain, in that the symptoms persist in the absence of a causative stimulus. Which is to say that the nervous system generates and sensitizes you to anxiety/ depression/ pain of its own accord. It is not to say that if you have chronic pain, it won’t help to have me stop stepping on your toes, or if you have chronic depression it won’t help to have financial security or if you have chronic anxiety it won’t help to get away from a violent partner.
Without a clear explanation for these chronic symptoms, sufferers and clinicians inevitably spend a lot of time alone and together trying to figure them out. Uncertainty abounds.
Care of patients with chronic symptoms requires time to build trust and a therapeutic relationship. This develops through talking (dialogue). What we discover by talking is what it’s like (the phenomenology), where it comes from (the biology and the biography) and what it means (the hermeneutics).
Trust and time
Feminist, activist and professor of psychiatry Judith Herman warns that we may push for more facts before the patient has had time to deal with the emotional impact of the facts already known. Before exploring the past, it’s important to understand the present. Cognitive empathy is informed curiosity – asking questions that prove we’ve got an idea of just how bad anxiety and depression can be, but are sincere in wanting to know what it’s like specifically for the person in front of us. As one of my patients told my students, “I’m not going to open up if you don’t know where to look”
Quite frequently the physical symptoms of anxiety are so severe that it’s barely possible to get into the psychological side of things. Incontinence, breathlessness, chest pain, severe headaches, spasms and so on need to be attended to first. This can take time.
Once these are within reasonable limits the patient (and the doctor) need to be able to bear the emotions. Joanne Bourke, historian of Pain, says that the problem with pain [suffering] isn’t just that it’s hard to talk about it, but that it’s painful for the listener. I think I can bear to bear witness to suffering, but it is exhausting emotional labour. We have limits on how much we can hear, but as professionals we need to work on these.
Next, the patient needs to have authority over her memories; she needs to be able to choose what to remember and what to put aside. It’s not up to the doctor to decide.
There may not be a story to tell
Traumatic experiences happen when stress hormones like adrenaline and cortisol are surging. Because of adrenaline the experiences are only partially stored as memories and because of cortisol the storage is disorganised.
Experiences become stories by the acts of telling and re-telling. Traumatic events are not the stuff of anecdotes, they aren’t turned into stories, mostly they are the symptoms of fear, agitation, arousal, dread, pain, bloating, fatigue, sweating and palpitations – The Body Keeps the Score. Recalling traumatic experiences is traumatic – which is why the preconditions above matter. The consequence of all this is that there may not be ‘a story’ to tell, let alone one that makes sense. At least not to begin with.
Telling someone that you are suicidal, that you have everything in place to take your life – is a risky strategy – good ways to respond, from the perspective of someone who knows what it’s like are in this brilliant blog which I’ve had reason to refer to already, twice this week. But an unsympathetic ear, or a panicked response – can be catastrophic.
Working back from present symptoms to past experiences takes time. This week I spoke to two patients I have known for about 10 years and started hearing about their trauma for the first time. Without continuity of care, and trust that can develop over time, these kinds of conversations might never happen.
Every patient has their own unique story
Underlying their anxiety and depression, one person will have a strong genetic prediposition with a secure childhood, another will have have suffered abuse and another will have suffered significant losses in early life, for other the cause will remain a mystery. The aetiology of mental suffering is complex and varied. How much genes, attachment, experiences and so on contribute to each person’s presenting symptoms can be hard to judge. I think it’s important to help patients figure out what’s significant to them, bearing in mind that self-blame can be predominant and we can help to shift that. Often though, there is someone to blame; too many children are abused and too few of those responsible are bought to justice. But we have to avoid blaming others when there wasn’t abuse and when it’s not clear what has happened.
Groups are often very powerful – validating, empathic, non-judgemental – far more so than professionals. It is tempting for professionals to try to ‘fix’ people’s problems when what they need is to be cared for, because a lifetime of anxiety and depression cannot be cured. Talking may be much easier with people who share their experiences, but without respect and facilitation groups can be undermining.
Being mentally ill can make people very vulnerable to exploitation, fearful and acutely sensitive to the ways that other people respond to what they have to say. These feelings are not just symptoms of their illness, but an entirely rational response to the ways they have been treated in the past. Talking is good, but more of the responsibility needs to lie with the listener.
Talking is not enough
Once you’ve talked to more than a few people suffering from mental illnesses, it’s obvious that social injustice, violence and stigma, not only cause illnesses, but worsen them and impede recovery. Political action is imperative. This is why so many people who work in this field, like Judith Herman, Jay Watts and many more are clinicians and activists. If you’re good enough to listen, you need to take action as well.
We need properly funded mental health services, and well-trained health professionals. We need Trauma-informed health services throughout the NHS. Talking does help, but we need more treatment too.
The Language of Trauma – brilliant graphic novel describing this blog https://floridareview.cah.ucf.edu/article/the-language-of-trauma/
On Language and Psychiatry. Dariusz Galasiński http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(18)30040-3/fulltext
How neoliberalism is damaging your mental health – The Conversation http://theconversation.com/how-neoliberalism-is-damaging-your-mental-health-90565
As a psychologist I see the fantasy of neoliberal values having a devastating effect on mental health treatment Jay Watts – Independent http://www.independent.co.uk/voices/mental-health-treatment-tory-government-nhs-funding-access-work-benefits-a8037331.html
Mental illness and the welfare state David Bell Centre for Health and the Public Interest https://chpi.org.uk/wp-content/uploads/2013/12/David-Bell-analysis-Mental-illness-and-its-treatment-today.pdf
One of the most haunting images from my time as a junior doctor working in Hackney in the mid-1990s was in an A&E (emergency) department while we tried to resuscitate a man in his 40s. In the corner of the room stood two young children – probably about the same age mine are now, 6-8 years old. They stood and stared in silence, watching us trying to save their dad. He was covered in blood and bile, his body yellow with jaundice, veins visible on his abdomen and torso from advanced, alcoholic liver disease. His wife was in another part of the department, so intoxicated she couldn’t stand, barely conscious and unaware of what was happening to her husband and children. The children were eerily impassive. The ambulance crew told us that when they arrived at their flat, they were trying to wake their dad while their mum lay unconscious, snoring in the next room. The flat was squalid and the children were obviously severely neglected. By now they will be in their mid to late 20s, assuming they are still alive, possibly with kids of their own. I wonder what became of them.
A lot of my time in A&E in south east London was spent with young people, mostly women and girls who cut themselves or took overdoses. I absorbed the culture of my workplace – where they were usually treated as ‘timewasters’ and where ‘PD’ which stands for ‘Personality Disorder’ was a term of abuse. I quickly became aware that all of them had been abused (usually sexually) or neglected severely, but I struggled to find anyone who knew what we could do to help, and faced with our own helplessness we continued to patch them up, push them away, and complain about them wasting our time. I remember one night meeting a teenage girl who wanted treatment for sexually transmitted infections, she refused to be examined, protesting that it was too sore, too smelly and too embarrassing. She looked terrified. I was the only doctor in a busy department in the middle of the night – she slipped away before I had an opportunity to find out any more.
I rotated between junior doctor posts, driven by a mixture of curiosity and an inability to commit to a specialty at an early age. After A&E I worked as a junior surgeon and gynaecologist where I met dozens of patients (also mostly young women) whose enormous hospital records documented their repeated admissions, investigations and surgical procedures. We couldn’t explain their abdominal pain and bloating, pelvic pain and unexplained severe constipation or incontinence. Some of them also cut themselves, but mostly we examined the scars that criss-crossed their abdomens made by surgeons, looking for the source of their symptoms in the organs underneath.
I spent just 3 months working part-time in sexual health, barely long-enough to wonder why just a few young people (again, mostly women) accounted for such a high proportion of the visits.
As a young, naive paediatrician I saw kids with ADHD and other conduct disorders, many of whom had a dysfunctional home environment. Some were adopted, but we were strangely uncurious about what had happened to them before they were adopted. I met countless parents who were overwhelmingly anxious, who bought their children to hospital week in, week out. Some seemed to spend every Friday night in A&E. I focussed on the children and it hardly ever crossed my mind to think about what had happened in their own lives, or might still be happening, that rendered them so fearful.
I spent 6 months as a junior psychiatrist where I had a little more time to listen to patients, but many refused to talk for long to a doctor they had never met before and might never meet again. I struggled to find ways to find the information that mattered most to the patients I read their extensive discharge summaries but struggled to find out which events were the most significant in their lives. It was clear that mental ill health had a complex aetiology – which is to say that similar illness were clustered in families, were affected by experiences, and were worsened by deprivation, intoxication and isolation, most of which we had no ability to influence. For some people psychosis struck someone in the most stable of social circumstances, but for most it was chaos superimposed on chaos. We prescribed every new drug that came on the market, usually on the basis of the earliest trials and negligible evidence of benefit. The side effects – “They’ll make you fat and impotent!” one patient yelled across the ward as I tried to persuade another to try them, were more predictable than the benefits.
As time went on I realised that if I wanted to understand why people suffered from unexplained symptoms, chronic pain, anxiety, depression and psychosis I would need work somewhere where continuity of care was valued and protected.
For most of the last 17 years, I’ve been a GP working in Hackney in East London. We serve an increasingly economically diverse, but still very deprived, young, socio-culturally mixed group of patients.
A lot of what many people would consider to be ‘normal general practice’ – managing diabetes, hypertension, heart disease, minor illnesses and so on, is managed by practice nurses, specialist nurses, clinical pharmacists, GP trainees and salaried doctors. GPs like myself who have been around for long enough to develop therapeutic relationships with patients spend most of our time with patients who suffer from chronic pain, medically unexplained symptoms, addiction, eating disorders, severe obesity, self-harm, suicidal thoughts and mental health disorders; especially chronic anxiety, chronic depression, OCD, bipolar and personality disorders. Among them are our patients with the worst diabetic complications, the most symptomatic heart-failure, the most brittle asthma and out of control hypertension. They are the same patients who I met again and again as a junior doctor, who bewildered and frustrated me and my colleagues. They are still the patients who attend A&E most frequently and are most likely to fail to attend routine reviews. If they are not asking me to give them something for their chronic pain, debilitating anxiety and insomnia, for weight loss or breathlessness they need me to write reports for housing or benefits assessments. I, and thousands of doctors like me, spend every day caring for patients like this. One thing I have only very recently learned, is that Trauma is embodied.
What is extraordinary, and to be frank, a betrayal of patients and clinicians on the part of those responsible for medical education is that we never talked about, much less seriously taught about the lasting effects of trauma. We were taught that diseases were due to the interaction of human biology and the environment, but human experiences were barely part of the picture.
Julian Tudor Hart worked for over 40 years in the same practice in the Welsh Valleys and saw the same community after the mining industry closed down. Not only did unhealthy lifestyles and mental illnesses proliferate, but so did domestic violence and incest. Without meaning and purpose, for some people, morality collapsed.
For John Launer, GP educator and narrative medicine pioneer, medically unexplained symptoms are better understood as ‘medically unexplored stories’. Most GPs, especially those who work in deprived areas, bare witness every day to their patients’ accounts of trauma; including physical abuse and neglect; parents who were, because of alcoholism, drug abuse or mental illness unable to care for their own children in their earliest years; stories of material and emotional deprivation, abandonment and loss, domestic violence, crime and imprisonment and with shocking frequency, child abuse. Trauma begets trauma so that people rendered vulnerable by trauma in childhood are very frequently victims of violence and abuse in later life. Survivors of trauma use drugs and alcohol to cope with the aftermath, then find themselves involved with crime which leads to imprisonment and homelessness and further cycles of alienation and despair.
People whose work does not involved repeated encounters with survivors of trauma frequently either cannot believe, or refuse to believe how common it is. For years it’s been assumed that people invented stories of trauma to excuse bad behaviour. The medical profession bears a lot of responsibility for this, largely ignoring the psychological consequences of rape until the last 30 years.
In 1896, Freud presented the detailed case histories of 18 women with ‘hysteria’ – what might these days be labelled ‘Emotionally Unstable Personality disorder’. In every case the women described childhood sexual abuse. Freud thought that he had found the ‘Caput Nili’, the source, of hysteria, and presented his findings in anticipation of fame and possibly fortune. What he failed to anticipate was that the upper echelons of Viennese society were not prepared to accept that women with hysteria could be telling the truth and in so doing, implicating their own, privileged social circles. Freud was sent away to come up with another, more acceptable theory. His insights were buried and forgotten for most of the 20th century.
Ruby is imposing. She is six-foot-tall and one hundred and thirty kilogrammes. She rarely goes out, but when she does she dresses up – lots of gold jewellery – pink Doctor Martin boots, a huge, bright, African print dress and a gold, sequined stick. “Do you know how long it took me to get to know and trust my last doctor?” she has asked me, rhetorically, several times since we first met, about 10 years ago, after her last GP of 20 years left. “You know what I’m looking for in a doctor?” she asked, “Someone who looks comfortable when I’m sat in front of them”. How many times, I wondered, have patients looked to a doctor for help and empathy and seen fearfulness, frustration, confusion or worse; moral indignation or disgust. I know it happens. Dozens of studies have shown that the attitudes of professionals towards patients who are overweight, who self-harm, and who have personality disorders are at least as prejudiced as the non-medical public. I know I’ve done it before. But I think I’m more aware of it now, and I’m much better prepared to bear witness to trauma.
Ruby was sexually abused by her grandfather from the age of 6 to 9. When she told her mother, she didn’t believe her, her grandfather continued to visit and the abuse went on. When he stopped abusing Ruby, he started abusing her younger sister. Ruby started eating to protect herself – to smother her emotions, to make herself less attractive, to make herself more imposing and better able to defend herself. She fought at school all the time and was repeatedly excluded. She was never asked about abuse, but if she was, she would almost certainly have denied it. Happy kids don’t suddenly double in size and start fighting unless something terrible has happened. So many adults I look after who can recall the day when they suddenly stopped being a ‘normal child’.
In 1987, Vincent Felitti a doctor running a weight loss programme for severely obese adults in the US mistakenly asked a woman how much she weighed, instead of how old she was, when she had her first sexual experience. “Forty pounds”, she replied. “With my father”. He went on to interview nearly 300 other women attending the clinic and discovered that most of them had been sexually abused. He presented the findings to the American Obesity Association in 1990 and the response was almost the same as Freud had nearly 100 years before:
When he finished, one of the experts stood up and blasted him. “He told me I was naïve to believe my patients, that it was commonly understood by those more familiar with such matters that these patient statements were fabrications to provide a cover explanation for failed lives!”
We don’t like to talk about trauma because it’s very hard to accept that something so horrific should be so common, and the perpetrators, who are usually known, so normal. Most perpetrators of sexual violence, child abuse, domestic violence and rape, have no history of trauma of their own, and no evidence of mental illness. Coming to terms with this very uncomfortable fact means accepting that there is something very, very wrong with the way we are raising young men.
The doctors running the obesity clinic developed their line of questioning to include 10 categories of Adverse Childhood experiences listed below.
Not all categories are equally traumatising; the severity and duration of adverse experience is important in determining the extent of traumatic aftermath – the ‘trauma world’. 30-36% of people have no ACEs, but different-types of adversity go together, for example alcoholism, physical abuse and violent behaviour. The higher your ACE score the greater your risk of physical and mental ill-health and social disadvantage in the future. An ACE score of 4 or more increases the risk of heart disease 3-fold and Type 2 diabetes 4-fold. People with an ACE score of 4 or more are 6 times more likely to smoke and 14 times more likely to have experienced violence in the last 12 months. People with an ACE score of 6 or more have a life expectancy of 20 years less than those with a score of 0 because of illness, violence and suicide.
Clinicians should suspect trauma in people whose symptoms and behaviour are like those I’ve described, but we need to be careful not to blame every symptom on trauma. The symptoms and behaviours associated with trauma can occur in people who have not suffered trauma. The embodiment of trauma causes lasting physical changes to the brain and body, which combined with self-destructive habits, hugely increases the risk of serious diseases. We must not forget about biology while we attend to biography. Multiple physical symptoms and associated hyper-vigilance can make it very hard for survivors and clinicians to recognise when symptoms are not a manifestation of trauma. Knowing which symptoms to investigate, and how far to go needs an experienced clinician, but often, because survivors are seen as ‘difficult’ they end up with the least experienced.
Disconnection, Fearfulness and shame: The Trauma World
While the ACE studies show that trauma is associated with a wide spectrum of illness and adversity in later life, they fall short of explaining how or why this happens. The aftermath of trauma, for those who lack the good fortune to be sufficiently resilient, is a world of disconnection, fearfulness and shame, the ‘Trauma world’.
Disconnection / dissociation.
Many people who have survived childhood abuse describe how they could separate themselves, from the act by ‘an outer body experience’ –
“He’s inside me and it hurts. It’s a huge shock on every level. And I know that it’s not right. Can’t be right. So I leave my body, floating out of it and up to the ceiling where I watch myself until it becomes too much even from there, an then I fly out of the room, straight though the closed doors and off to safety. It was an inexplicably brilliant feeling. What kid doesn’t want to be able to fly? And it felt utterly real. I was, to all intents and purposes, quite literally flying. Weightless, detached, free. It happened every time and I didn’t ever question it. I just felt grateful for the reprieve, the experience, the free high”. James Rhodes, Instrumental.
Whilst children are quite adept at this and with practice can slip into states of disconnection quite quickly, it is harder for adults. The aftermath of trauma, the trauma world, often persists or may even manifest for the first time, years after the abuse has ended. Alcohol is one of the most potent and effective dissociating drugs. Addiction specialist Hanna Pickard describes, in a radio 4 interview, the occasion when she found herself in the back of an ambulance with a broken shoulder having been knocked off her bicycle in a crash that also involved her two young children. The effect of the morphine was to profoundly dissociate her from the pain in her shoulder. She understood then how if she had also been suffering the unbearable agony of her children dying in the accident, it would dissociated her from that pain as well. Sedative drugs prescribed to treat chronic pain and chronic anxiety – opiates, anti-epileptics, antidepressants and benzopdiazepines are almost entirely unselective – they even numb the pain of trauma, hopelessness and despair.
We can disconnect from memories and aspects of ourselves that we cannot bear or are afraid to acknowledge without drugs or alcohol. For some people, excessive work or exercise can achieve similar effects, especially when it involves pain and self-sacrifice and can even drive exceptional success in academic or athletic performance. But in spite of this, because trauma profoundly affects the sense of being worthy of love, attention and respect, this success is rarely matched by positive relationships with other people.
Disconnection often leads to by isolation and loneliness and shame, and the evidence linking loneliness with serious disease and a shortened life expectancy may be because loneliness is a proxy for trauma.
One of the ways that people who have experienced trauma, especially abuse, rationalise what has happened is by blaming themselves.
The overwhelming sense of being deeply flawed and unworthy of care and attention makes it very hard to convince people who have suffered trauma that they deserve the care that they are entitled to. They can be very hard to engage with care, and are often excluded because they can be chaotic and have different priorities – safety, money, housing and so on, to clinicians. Self-harm through neglect, and unhealthy behaviours are much more prevalent among people who have experienced trauma, as is more direct self-harm like cutting and suicide.
Doctors, nurses, receptionists and others who work with people who have experienced trauma and suffer the trauma world that comprises trauma’s aftermath, know very well how overwhelming and contagious patients who suffer severe anxiety can be. From repeat attendances, especially to A&E and out of hours, to panic attacks and aggressive behaviour, the emotional labour, sometimes referred to as secondary trauma, of caring for people who are very chronically, severely fearful is exhausting. A child who has experienced trauma is constantly vigilant, always on edge, prepared for fight or flight at all times. This constant tension and hypervigilance leads to high-levels of hormones like cortisol, adrenaline and noradrenaline, tense physical posturing or the opposite – cowering; hypertension, breathlessness, chest tightness, irritable bowels; and over time chronic pain, heart-disease and eating disorders – especially when they represent a battle for self-control. The constant fearfulness becomes an inseparable part of the traumatised person’s identity, so that it becomes impossible to relate the physical symptoms to ‘anxiety about a thing’. Somatic symptoms lead to the fear that a fear that there is something wrong, some awful disease in their stomach, chest, brain, or wherever the symptoms are felt. Faced with patients whose anxiety and physical symptoms are overwhelming, clinicians frequently resort to medical investigations, often in a futile attempt at reassurance, to allay their own anxiety or because it’s easier to talk about the diseases they don’t have than the stories they do. Because the risk of biological disease is so much higher for these patients, the tests aren’t entirely without justification, but most of the time they serve to distract rather than reveal the underlying causes.
Feelings of safety, security and trust in other people are laid down in the very earliest years of life. Deprived of this, anxious babies become frightened children and fearful adults. Desperate for human connection, they often make intense attachments with others, and then terrified that they will be broken off, in part because of their own intensity, they sabotage the relationship before the other person lets them down – as has happened so many times before.
Resilience and protective factors
Because resilience is conflated with moral character- to be resilient is to be seen to be courageous, stoical and strong – the flip-side is that people who suffer more are assumed to be less resilient. All survivors of trauma have have survived by virtue of extraordinary resilience. Those who suffer more, don’t lack resilience,and certainly don’t lack moral character, but suffer more because their trauma was more severe, more prolonged or incurred at a younger age or more vulnerable time in their lives.
Another reason for suffering more is a lack of protective social factors. Almost certainly, but very difficult to prove, the most important is a long-term relationship with an emotionally stable adult. The worse the abuse, and the younger it starts, the harder it is for people to achieve this – an inability to trust other people becomes part of their personality. Afraid that their victims might develop a relationship with anyone else, abusers frequently do whatever they can to stop this happening. Many GPs find ourselves in the position of being the ‘only emotionally stable adult in a victim’s life’. I went for years knowing, or at least suspecting that this was the case before understanding the links with trauma.
Socioeconomic factors can be protective – but only up to a point, as the many survivors of trauma from privileged backgrounds have testified. But severe deprivation can be traumatic in and of itself and exacerbate the effects of other types of trauma.
Trauma in contexts of deprivation may lead to survivors spending their lives being shunted from one crisis service to another, from temporary accommodation to emergency shelter, from one GP to the next. Just as they’ve begun to trust and confide in someone, they are uprooted and moved on. To make matters worse, doctors are taught to be afraid of dependency, to view it as ‘disempowering’ patients, and/ or as a symptom of their own unhealthy/unprofessional need for human connection. Some neglect continuity of care, others actively avoid it. For Arthur Frank, medical sociologist and anthropologist, ‘The structured disruption of continuity of relational care is more than an organisation problem; it is a moral failure of health care, deforming who patients and clinicians can be to and for each other’. In an age where independence and individual autonomy are moral virtues, it is shameful to admit that you need human connection.
Being able to make sense of what happened is often very hard. Abuse is so often done by people who should have provided kindness and protection to a vulnerable young person. It is heartbreaking, but understandable that victims frequently rationalise this by thinking, ‘it must have been something about me, something I did, or said – it must have been, at least in part, if not wholly, my fault’. Abusers sense this and feed into it, telling their victims that they are getting what they deserve until eventually they believe it. Finding different ways of making sense of abuse – perhaps years after it has happened, can be extraordinarily difficult and can require long-term therapy. For some people though, I believe that what happens, over repeated short appointments with a GP, perhaps over many years, is that new narratives are co-created, making sense of what happened in different ways.
Trauma is disempowering; a sense of self control is wrenched, often violently away. Fearfulness and disconnection add to the identity of a body out of control. In abusive relationships the victim is rendered powerless. If the victim is helped to gain a sense of (and of course, actual) control, it helps enormously.
Like all healthcare professionals, and especially those who work in deprived areas I care for the survivors of trauma every day. It helps to know as much as possible what evidence there is for recovery.
The slide above is adapted from Judith Herman and Bessel Van der Kolk. It can take years to develop enough trust with a patient to talk about trauma, during which time millions of pounds might be spent investigating and treating their physical symptoms and mental health. The costs to the NHS and other healthcare systems worldwide have never, to my knowledge been investigated. Without the opportunity to develop trusting, long-term, therapeutic relationships, many patients are denied the opportunity of recovery. Van der Kolk warns strongly against assuming that there is ‘a’ treatment for trauma, there are too many different types affecting too many people in too many different ways for one to be sufficient. Because trauma affects both body and mind, treatments that attend to both are very often required. It must also be remembered that trauma is just one of a number of contributory factors to many diseases, and we must not overlook the others, or assume that trauma alone is responsible. Autistic spectrum disorders can be mistaken for trauma because of problems with social interaction, anxiety, sensitivity to sound/ light/ touch and impaired motor coordination are common features of both.
The quality of therapeutic relationship is more important than the type of therapy, but it is almost impossible for the rational self to talk the emotional/ physical self out of its own reality, which is why CBT often fails.
Vulnerability to trauma begins before birth and is especially important during the first 2 years of life. Childhood poverty in the UK has been rising for years and is among the worst in the developed world. Programmes to ensure children get the best possible start in life- like Sure Start have been cut or scrapped. Health visitors are completely overwhelmed as are drug and alcohol services. It seems that there will probably be even more victims of trauma in the future. We need to raise awareness among professionals, the public and policy makers. We need advocacy and activism from professionals. We need a social safety net that is not so inadequate that people are forced into destitution or in which a life of intoxication is preferable to the impoverished, hopeless alternative.
Trauma informed care
Care for people who have experienced trauma needs to be based on evidence and compassion and combined with advocacy and activism
The role of the GP
GPs are not trained therapists, but the work that we do is very often therapeutic. A compassionate curiosity informed by knowledge of the ‘trauma world’ enables empathy, which is described by Leslie Jamison, author of ‘The Empathy Exams’ as, ‘asking the questions whose answers need to be told’.
Treatment begins with the sense of being listened to by someone whose intention is to understand. If the therapist (GP) can take in something of the magnitude of what has happened to the patient, internally and externally, without being totally overwhelmed by it, there is a hope once more of re-establishing a world with meaning in it.
Caroline Garland (2005)
The importance of a containment of this kind cannot be overestimated. In consultations, a therapist is required to take in overwhelming experiences without becoming overwhelmed him/ herself. Profound anxieties and hostility are part of what the trauma patient is unable to hear. The therapist needs to register and contain such feelings sufficiently if the patient is going to come to contain and integrate such feelings him /herself.
This demonstrates that the therapeutic relationship, rather than the event itself is central for the consultation. Joanne Stubley Trauma (2012)
Learning about trauma has completely transformed my practice, helping me to make sense of so much that has frustrated, worried and exhausted me for years. I am now committed to sharing the lessons with other healthcare professionals, beginning with my whole practice team – from the receptionists who frequently face hostility and unpredictable behaviour, to the secretaries who type reports full of traumatic detail, the nurses who see them for intimate examinations and the doctors who struggle with their inexplicable symptoms. Struggling with patients who have suffered trauma can inflict trauma on those whose job it is to care – both because of the intensity of experiences and because their own trauma may be triggered.
My hope is that the NHS can act with science and compassion combined with advocacy and activism to lessen the amount of trauma being inflicted and improved the care of those who have survived.
Podcast – a 40 minute interview I gave about this subject with some new thoughts, in March 2018 https://soundcloud.com/jane-mulcahy/dr-jonathan-tomlinson-law-and-justice-interview
- ACEs: www.acestoohigh.com
- Trauma informed practice Scotland 2017-8
- Childhood forecasting of a small segment of the population with large economic burden. Dunedin study – Nature http://www.nature.com/articles/s41562-016-0005
- Dunedin study background and commentary https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4412685/
- ‘You should have been more careful’: when doctors shame rape survivors https://www.theguardian.com/commentisfree/2017/oct/15/obgyn-doctors-shame-sexual-assault-survivors?
- Trauma-centred-care: http://www.commonwealthfund.org/publications/newsletters/transforming-care/2016/june/in-focus
- Bessel Van Der Kolk: The Body Knows the Score 2015
- Judith Herman: Trauma and Recovery 1992 (2015 edition)
- Daniela Sieff: Understanding and Healing Emotional Trauma 2016
- James Rhodes: Instrumental 2016
- Jay Watts: Borderline Personality Disorder, Why people self-harm
- A Little Life: 2015
- Resilience: 5 minute film: https://vimeo.com/139998006
- Half hour BBC radio 4 programme about adverse childhood experiences: http://www.bbc.co.uk/programmes/b070dksr
- Complex PTSD Wikipedia entry https://en.wikipedia.org/wiki/Complex_post-traumatic_stress_disorder
- Complex PTSD – from Judith Herman 1992 – below:
A Gun To His Head as a Child: In Prison as an Adult. NY Times 2017