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We need to talk about trauma

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.

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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.

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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.

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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.

Katz

The doctors running the obesity clinic developed their line of questioning to include 10 categories of Adverse Childhood experiences listed below.

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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.

Diagnostic difficulties

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 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.

Resilience

Just as most smokers don’t get cancer, most people who have experienced trauma seem to be remarkably resilient. The most important protective factor is the strength of your social relationships, especially a long-term relationship with an emotionally stable adult. The longer people are deprived of this, the harder it is for them to be resilient.

People who have experienced trauma, especially those who are impoverished, spend 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.

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’.

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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.

Shame

One of the ways that people who have experienced trauma, especially abuse, rationalise what has happened is by blaming themselves.

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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.

Fearfulness

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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

Given just how much of our time in general practice is spent helping patients cope with the aftermath of trauma, it is perhaps surprising and certainly important to remember that the majority of people who have experienced trauma seem to survive without suffering too much. I think we are preoccupied with the tip of a trauma iceberg.

Almost certainly, but very difficult to prove, the most important factor for resilience 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, until eventually their victims give up. 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.

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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.

Recovery

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.

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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.

Prevention

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

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Finally

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.

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Further reading:

What is a GP?

Social determinants of health, multi-morbidity, cradle to grave care, and Sylvia who is 90 years old and spent the last decade caring for her husband with dementia and now wants me to help her join him in heaven.

Child health, mental health, sexual health, trans health and Mehmet who is only 21 years old and will not use insulin for his type 1 diabetes and is blind and dying from renal failure.

Home care and advocacy for twins, Sam and Fred who have learning difficulties, are destitute and are trying to survive.

Ever-changing targets, financial pressures, press hostility and a wonderful team and the chance to innovate.

Knowing patients for years and growing to love and respect those with whom we’ve struggled most of all.

A deep well of local knowledge and a parsimonious custodian of healthcare resources.

A growing realisation that ‘doctor’ is an inadequate description of a GP.

 

150 words.

This is my contribution to #GP150w – a wonderful initiative by Dr Jamie Hynes

For longer descriptions, Iona Heath’s The Mystery of General Practice is still one of the most inspiring accounts I have read.

More recently, this 2016 lecture from Lucy O’Hagan, a New Zealand GP is an extraordinarily reflective piece about being a Rural GP and wounded healer.

The longer I am a GP, the more I realise ‘doctor’ is an inadequate term for what we are and what we do.

To contribute your own 150 words, click on this link: https://www.surveymonkey.com/r/Q2J2XQ6

For a summary of the GP in a 150 words click here

An ideal specialist service?

A new service has been set up in our local hospital and they have asked if they can visit our GP practice to tell us about it and they are offering us some ‘teaching’ – presumably related to their specialty.

 

We are going to invite them, but rather than replicate the usual format for these meetings we (I) thought we might tell them what, from our perspective, an ideal specialist service might provide.
This is a generic wish list, for any specialty. Hopefully patients, GPs, specialists, commissioners and other healthcare professionals might offer their own suggestions.

 

Firstly we want a website, accessible to patients and professionals for your service with all the relevant information, which should include the following:

 

  1. Contact details: Travel, phone numbers for appointments, cancellations, and other queries. An email address or contact form
  2. Links to patient-information including self-care, self-referral options, local support, help-lines, patient-forums, etc.
  3. Links to information for carers and advocates
  4. Up to date guidelines, and shared-decision making tools for patients and professionals
  5. Quantitative data: how many patients are you seeing, how long are they waiting for an appointment? How long do they wait when they get there?
  6. Your commitment to patient-centred care: How are the material, organizational and interactional aspects of your service, ‘patient centred?’
  7. Patient and clinician feedback: It should be possible for patients and professionals to leave feedback via your website. You should analyse it and provide a monthly report including your proposed action
  8. Quality measures. These should include:
  • Patient-reported outcomes and long-term follow up – we want to know how long your interventions are effective for
  • Safety reports: a monthly or even quarterly summary would do
  • Patient satisfaction surveys: Quarterly or biannually?
  • Staff satisfaction surveys: Once or twice a year? We want to know that we’re referring to a service that cares about its staff

 

 

I’ve tried to keep this list short. No service I know comes anywhere close to this. Patients have to trust that we will refer them to services that will take good care of them but trust is not enough.

Thanks to Phil Cavel who has blogged his experience of spinal surgery for prompting me to write this. If you’re looking for a new, very special bicycle, he’s your man.

Don’t talk to me (an evidence-based poem)

bellastarling

Don’t talk to me (an evidence-based poem)

Don’t talk to me about facts and figures,
In a way that gives me medical jitters.

I understand evidence, really I do,
But you don’t make it easy, do you?

A bit less, please, jargonese,
And legalese, in PILs and SPCs*.

On paper so transparently thin,
It’s easily thrown into the bin.

Where’s the benefit information?
A risky business, this medication.

I don’t mean to poo poo your peer review,
It’s just… I don’t trust you.

Especially if you’re big pharma,
Face it: you’ve got bad karma.

Help us to talk to you,
We’ve much to offer, too.

Our words are woven,
With experiences, human.

Medical proof can only get better,
Working together, boxing clever.

Don’t talk to me, without my family,
They’re part of my thinking alchemy.

My brother, my sister, by blood or by water,
My mother, my lover, next door’s…

View original post 350 more words

Hayfever and The Inverse Care Law

 

I took Billy, my 7 year old son to the pharmacy this evening to buy him something for his hayfever. He’s been suffering constant puffy, itchy eyes and a blocked nose for the last 2 weeks. I walked and Billy scooted to our friendly, local pharmacy from where I’ve previously stocked up on dressings to treat road-rash after coming off my bike. We went inside and stood and stared with a mixture of awe and bemusement at the shelf of hayfever medicines.

Being a GP puts me at a considerable advantage in a pharmacy. I know what I want without having to ask their advice and I can confidently ignore the branding and focus on the name of the drug, the strength and the quantity to figure out which one is best value for money. Then I can show it to the pharmacist and ask them if they’ve got a cheaper version (which they often do have, tucked away behind the counter).

I always treat a trip to a pharmacy as an anthropological exertion, and deliberately hang around to watch other customers choose their medicines and listen to the pharmacists give advice to their customers. Billy and I pretend to be spies, which makes it an adventure.

The antihistamines on the shelf ranged in price from £4.50 for 7 Cetirizine tablets to £3.99 for 30. In other words, 64 pence vs 13 pence for a single 10mg tablet of the same drug – a difference of almost 500%. Boots, which is one of the biggest highstreet pharmacy chains is advertising Cetirazine at £4.29 for 14 tablets (30 pence per tablet). This is still a lot, especially when you can get 21 Loratadine for £1 in Poundland.

I prescribe antihistamines – typically 3 months supply (90 tablets) at a time, but a lot of GPs and policy makers think patients should buy antihistames, and any other medication that doesn’t require a prescription, direct from a pharmacy. Unlike most GPs and policy makers, Billy and I go to pharmacies undercover.

One thing we’ve noticed is that people often look confused and overwhelmed by the choice. Quite a few don’t ask any questions, especially if they don’t speak English or if they’re anxious or embarrassed. When my patients show me drugs they’ve bought, it confirms my suspicion that by and large, they are not making informed, value-for-money choices.

Billy and I have come to the conclusion that GPs and policy makers need to think a bit more about just how hard it is to be a successful consumer in a high-street pharmacy.

Of course it’s not just high-street pharmacies where it’s very easy to be ripped off, it’s absolutely everywhere. You can repeat the amateurish anthropology in any supermarket. Twenty minutes spent watching human behaviour in any shop is enough to teach you that there are large numbers of people – and it’s not that difficult to figure out who they are – for whom choice is not freedom, but a minefield. The cruelty of the situation is that these people are most likely to be learning disabled, cognitively impaired, illiterate, innumerate, unable to speak English, very anxious or depressed. In other words, vulnerable and sick.

The more the NHS is cut, the more patients will be expected to shop around for care and the more that happens the more the Inverse Care Law kicks in.

 

 

 

Empathy, shame and medical professionals

Last week I went to the second of 3 interdisciplinary workshops on Shame and Medicine. The first workshop was on patients’ shame, and this was on shame and healthcare professionals. In particular, it helped me think about some of the things that are making life so difficult for health professionals at present.

Shame isn’t usually experienced as shame – it is an emotional response including fear, anxiety, and a powerful urge to escape. Shame may be lived as a state of loneliness, or addiction or felt as numbness and chronic pain. It is often so profoundly physical – that people who suffer shame bewilder healthcare professionals and others with symptoms they cannot explain. These feelings can be there all the time, in the case of chronic shame, or arise acutely when something happens that threatens to set off emotions associated with past trauma. Past trauma may be abandonment, loss or abuse in early childhood, belittling or a sense of being unwanted. The trauma embeds the conviction that at some very deep and unalterable level, the person affected is to blame for what has happened. And it is the strength of this conviction, and the strength of the associated emotions that determines the degree of shame, rather than the trauma itself. This is why shame often appears to be disproportionate. This disproportionality can lead to people being ashamed of shame, asking, “but what do I have to be ashamed about?”

To experience shame is practically universal, to recognise it for what it is, is far less common. I wasn’t abused, abandoned or belittled, but I’ve experienced shame. I didn’t understand what it was until I was well into my 40s.

The shame response is triggered by a sensitivity to emotions. Sensitivity to emotions is called ’emotional empathy’ – almost everyone has it, but to different degrees. Some people have a lot more, or a lot less, than others. This sensitivity has many underlying causes. It begins before birth in our genes and in early childhood in the years before we can recall memories, as the video below shows. Having our emotional needs unmet by our parents and carers is a classic example of trauma.

As a parent of two young boys, I have come to realise that it is impossible to respond to all my children’s emotional needs. My ability to respond depends as much on my state of mind as the strength of their needs. If I am exhausted or distracted, angry or reminded of my own weaknesses by their behaviour, it is especially difficult. I’m aware of my autistic traits which can make me slow to recognise what’s going on emotionally. Parents whose own emotional needs are not being met, who are overwhelmed with their own difficulties, struggle especially to meet their children’s emotional needs. The guilt and shame of being a ‘not-good-enough’ parent makes matters worse. Now I’m worrying, especially as the older one is ‘painfully’ shy around other children, I wonder how much I have already traumatised him.

Emotional empathy is a mirroring of emotions – we feel our children’s joy or sadness, anger or anxiety, before we respond. We may respond instinctively by reflecting back joy with joy, or anger with anger. This mirroring of emotions, feeling what others feel, has been shown to occur in a specific part of the brain containing mirror neurons. If the emotions remind us at a subconscious level of similar emotions associated with past trauma, we feel them especially strongly, even before we have had a chance to think about where they come from.

Our sensitivity to emotional empathy is heightened by stress, stigma, humiliation and demoralisation, making our emotional world more intense. In highly-stressed settings emotions run high. In stressful healthcare environments, people who suffer most are those who are most sensitive to trauma. We feel panic and a desire to hide or escape or simply disappear or even cease to exist. When this happens repeatedly we try to protect ourselves by avoiding situations that threaten to trigger emotional empathy: professionals avoid patients who are mentally unwell or dying, relatives who are upset or colleagues who are stressed. We absorb ourselves in the technical aspects of care and retreat behind guidelines rather than engage in messy, uncertain processes of human interaction and shared decision making. This is why we say that, ‘shame drives disconnection’, not only from patients and colleagues, but also from our own emotions. We become afraid of how we feel. If it becomes intolerable, we may cut ourselves off from our emotions with addictive behaviour – whether its alcohol, drugs, eating, exercising or working – we bury ourselves in the addiction and live in fear that if we give it up, we won’t be able to cope with how we feel. The toxic effects of stress are why austerity so undermines compassionate, empathic care.

Another way of understanding the intensity of affective empathy comes comparing shame and pain. In the video below, Lorimer Morlely explains how two identical pain sensations – a light scratch on his ankle, are interpreted completely differently in the light of prior experiences, leading to one scratch being incomparably more painful than the other. Emotions are like pain – the intensity depends on which prior emotions are triggered.

Healthcare is emotional labour. It is never simply an objective clinician-scientist treating diseases with technology, but all care that involves people communicating with one another, is psychodynamic, emotional labour.

Defences against emotional intensity, empathy and shame can operate at institutional as well as individual levels. In 1959, Isabel Menzies Lyth showed how an NHS hospital, faced with a nursing service in which nurses and trainees were overwhelmed with anxiety and stress, developed social defences against anxiety. Having noticed that students and junior nurses were becoming emotionally involved with patients, nursing managers broke up their work into technical tasks and required them to run every decision past their seniors. The result was that everybody – students, juniors, seniors and managers became more anxious. Lyth’s lesson, emphasised repeatedly in the literature on anxiety and shame, is that defences against emotional engagement are counterproductive. Satisfying healthcare is emotionally engaging. Emotionally disengaged healthcare is demoralising and dehumanising for patients and staff.

Emotional labour is hard work, but defences against emotions are harder and more damaging in the long run. We need to be constantly vigilant for situations that threaten to trigger emotions. The hypervigilance makes us tense, suspicious, anxious, tired but unable to sleep. You avoid social situations and become isolated and lonely.

What can we do?

Making sense of emotional empathy requires cognitive empathy, which may also be called ’emotional intelligence’. It is necessary to make sense of the emotional world of others and oneself. It is less innate and more amenable to educational and psychotherapeutic interventions. In my experience of teaching doctors and medical students, cognitive empathy varies enormously, some people have a huge amount and some have very little. It is difficult for people with autistic traits and may be difficult for people with a lot of shame because of the knowledge that making sense of emotions means revisiting past trauma.

People who choose to become healthcare professionals often say that they want to help people. We rarely ever ask them where that desire comes from. We could ask, but dare not, “What formative experiences led you to believe that you would be good at caring?” “What experiences did you have, of caring for others or yourself?” “Did a lack of affection lead you to discover that some of your own emotional needs could be met by focussing attention on others?” “Did your familiarity with and proven ability to survive trauma make you think you had something to offer others?”

I have met many medical students and trainees who have a lot of trauma in their past. Some of them, whose wounds are far from healed, burn out very quickly. In traditional cultures, you couldn’t become a healer until you had to undergone rituals and ceremonies that included deliberate poisoning or wounding. Healers had to know what it was to suffer. In a modern medical education, we also inflict suffering – stress, humiliation and shame but with none of the conscious intent of a traditional healer’s training. Medical education is not simply blind to empathy, trauma and shame, but is deeply ingrained with defences against them and there are cultural hostilities against reflection.

The doctors and students that I have met who have the greatest affective and cognitive empathy are those who are aware of their wounds and have been able to spend time coming to terms with them, with, or without support.
Healthcare is not just about clinician-scientists applying technology to treat disease. It is also people caring for people, it is emotional labour. We need to nurture affective empathy and take down our counterproductive defences. We need to teach cognitive empathy, not as a course to satisfy a minority interest, but as an integrated part of clinical medicine, by asking emotionally intelligent questions about the experiences of care and caregiving. We need wounded healers and we need to care for our wounded healers – we need emotionally intelligent medical education and we need to put intelligent kindness at the heart of healthcare.

Interdisciplinary project on shame and medicine: Shame and Medicine Project

The case for intelligent kindness

Related blog posts:

Shame and redemption

Anxiety and the medical profession

Empathy and Shame

Doctors and empathy

The wounded healers

The emotional labour of care

Resilience and medical professionals

Loneliness

Shame

Other reading:

I’m presently reading, and very much affected by Daniella Sieff’s book, Understanding and Healing Emotional Trauma. More here: http://www.danielasieff.com/

Bad encounters

Michael

It was some time in November. I’d come in to the GP surgery for the second time that week to collect my prescription for my blood pressure medication. It was really busy and I don’t really like being around other people so I was getting quite anxious and I could feel my blood pressure going up while I was waiting, so when I got to the desk I was quite agitated. I’ve always had an anger problem, I’ve lost count of how many times I got thrown out of school or lost a job because of losing it. I basically cope by keeping myself to myself. I’ve got a few friends who know what I’m like and I’m grateful for that. Anyway, when I got to the desk they couldn’t find the prescription – again. I totally lost it, it was so embarrassing, they threatened to call security, but by that time I’d already left. I’d been without my medication for over a week by then, but I wasn’t going back there, no way. It was about 3 weeks later I suddenly couldn’t balance properly, like vertigo, I had to hold onto the walls to keep myself upright. I didn’t know what it was, but I didn’t want to call the doctor so I waited to see if it would get better. If anything it was getting worse and I was getting headaches and feeling sick, so eventually I did. It turned out I had a stroke. Because of my blood pressure.

James

It had been one the worst days of my life. I’d been getting bullied at work for a while, teasing mostly, but it was getting on top of me. I’d had to get up and leave a meeting 3 times in an hour and a half that afternoon, and they didn’t even try to hide their sighs when I came back. My girlfriend had been on at me to see my GP for about 2 years, but the last time, about 5 years ago had been a disaster. Basically, as soon as  my bladder is even half full I need to go to the loo. I can’t wait, I can’t hold it in. Never have, for as long as I can remember. That day after work, I was on the tube on the way home when I suddenly needed to go. It was packed, and we were stuck between stations. I was terrified, sweating, wishing, like Dorothy in the Wizard of Oz that I could just be somewhere else – preferably in the bathroom at home – Instead I felt the dreaded hot, wet patch go down the inside of my right leg. I looked down trying to avoid seeing the other passengers frowning and trying to work out where the smell was coming from. I wanted to make myself invisible, but, instead, to make it worse I started crying. When I got home my girlfriend, gave me an ultimatum, either I go to the GP, or she goes there for me. The last time I went, though, five years ago – they just didn’t take it seriously. I’d used Ketamine a couple of times as a student and they fixated on that and basically said there was nothing they could do. I tried telling them it had always been a problem, but they didn’t want to listen.

Doug

Doug was my patient. His blood pressure frightened me a lot more than it appeared to bother him. Typically around 220/130, no amount of medication made the slighted difference. He was always jolly, came to all his appointments and would say he didn’t know why I was so worried. It never occurred to me that he wasn’t taking his medication. Eventually, when he was on 5 different blood pressure pills a day, I called the local hypertension specialist. Immediately she said, “He’s not taking his medication. You need to bring him in and ask him to take it in front of you and then check the blood pressure every couple of hours.” It seemed so obvious, I felt stupid for not having thought of it, so I called Doug and asked him to skip his medication next Tuesday morning, but bring it all in to see me at 8am. Dutifully he came in and laid the boxes out between us. I had a glass of water on the desk ready for him. “OK, I said,” feeling quite pleased with myself. “Now I’d like you to take the meds, just like you do every morning. “What? Are you trying to kill me?!” He asked. “No, I’m just asking you to do what you do every day at home”, I replied. “Er, yeah, right, OK”, he said. And took the tablets. At this point I should have stopped him. I should have said, “wait, it’s OK. I don’t want to kill you. I just want us to figure out how to deal better with your blood pressure. We can talk about the medication if you like, or anything else that’s on your mind. If you’re not taking it like this every day, then let me know and we’ll try to work with that”

But I didn’t. I wanted to humiliate him, and I succeeded. He did come back every couple of hours to get his blood pressure checked. At the last check in the afternoon it was 80/55. He never came back to see me again, and has since left the practice.

I’m haunted by this failure, and include it to show that all of us who work in healthcare are confronted by vulnerable people and are in positions of great power, to pass judgement on the needs of those who come to us for help. The slightest lack of sensitivity can stay with someone for years, stopping them from asking for help when they really need it. It is especially true with problems that are embarrassing and stigmatised, like mental health, continence and obesity. The media rages against people who waste NHS time and resources, but say nothing about those who need our help, but do not come. I hear stories like those above, every week, sometimes every day. Because they are so embarrassing they are very rarely told in public. I’ve changed a lot of details to protect my patients’ identity, and I hope that this might help others tell their story to a doctor or nurse who needs to hear it.