Finding fairhealth podcast Episode 14

https://shows.acast.com/findingfairhealth/episodes/episode-14-jonathon-tomlinson

In this episode we catch up with Dr Jonathon Tomlinson, an amazing GP in Hackney. Jonathan fills us in with how he is getting on during the coronavirus crisis. He shares his experience working in a practice in one of the hardest hit areas for coronavirus in the UK (1min 40). He tells me how his team has acted quickly to manage the acute situation but also continues to support the long term conditions for many of his patients in the community. 

We talk about some of the many changes in primary care over the last few weeks (5min 40s). These include; phone and video consultations; losing the GP waiting room; sharing clinical decisions and talking more with colleagues. We discuss the effects of coronavirus on those people living in deprivation (10mins 10s) and Jonathon shares some experiences from his practice and his patients (11mins). Jonathan talks about the social determinants of health and the importance of prevention along with all the stuff we are seeing in the media at the moment like PPE (14mins 50s) . 

One of the things that GPs can do is advocacy and Jonathon was keen to discuss the work of Dr Rudolf Virchow 1821-1902 (19mins). Virchow is famous for saying that politics is nothing but medicine on a large scale and that our role as doctors is to show the link between social conditions and medical diseases (21mins). Jonathan explains why Virchow’s message is particularly relevant at the moment. We explore the role of a GP in advocacy and coordination of a response to support those who are most in need and vulnerable. We discuss how much our job in primary care should include advocacy on behalf of our patients (26mins) and Jonathon offers some ideas for some steps clinicians can take forward to achieve this. Jonathon mentions collaboration, networks (e.g. The Deep End Network), treating long term conditions. We finish our conversation talking about the importance of caring for our patients (28m 55s), Jonathon shares his favourite book (32m 10s), and he tells us what his magic genie wish would be (34m 40s). 

Jonathon’s recommended Book

Let Us Now Praise Famous Men by James Agee (photographs by photographer Walker Evans)

Other reading

“Caring Effects” Julian Tudor-Hart and Paul Dieppe (mentioned at 30mins 50s)

Jonathon’s excellent blog

My (Rachel’s) favourites

You can also find Jonathon on tweeting on being a GP and topics related our discussion @mellojonny

Consulting during Covid

Face to face.

We came dangerously close to touching one-another when we came through the door into my consulting room. I held it open for her so she would not have to touch the handle. She held it open with her left foot just as I let go with my outstretched right hand. I had placed our chairs three meters apart, and we sat down facing one another. I sat with my back to the window which meant that her face was lit by the sun while mine was masked by the shade. It wasn’t a deliberate ploy to expose and conceal, but we noticed it as soon as we looked up at one another. I apologised as she winced in the light and I moved my chair around 90 degrees. Fortunately my room is big enough but I’ve consulted in rooms where social distancing is impossible. Everything felt awkward. Consulting has barely changed in hundreds of years. Illustrations of doctors and patients show them sat down at a distance of two to three feet from one another, sat across a desk, or besides a bed. We barely have to leave our seats to inspect our patients. A stethoscope is the perfect length to stretch across the arms-length divide between us. We can inspect hands for signs of disease or reach over to hold them in comfort or pass a tissue to catch the tears. I have spent the last 20 years working at this distance, learning how to judge how much touch is appropriate, and how to ‘harvest the richness of multisensory exposure’ in order to unpack ‘heartaches’, ‘headaches’, ‘bellyaches’ and more.

I am working in uncharted territories without a map. There are technical guides in abundance, but nothing about the relational aspects of consultations where we are separated by physical distance and fear of contagion.

Henri Cartier-Bresson favoured a 50mm lens for his photography because it was the closest to the natural field of view of a human eye. At three meters distance this takes in a full seated figure from head to toe. At two to three feet apart, the way we used to consult, this field of view takes in only a face.

Seated three meters apart we were both aware of how our bodies were exposed to one-another and we wriggled around trying to find a comfortable position. It felt more like a film set than a clinical consultation. There was no desk or computer screen between us. My PPE: mask, gloves, goggles and apron make me feel ridiculous. I peeled off my gloves and apron and I was about to take off my mask, but the sink in which I needed to wash my hands was just behind my patient. We circled each other awkwardly like cowardly boxers in a ring, before taking turns to wash our hands. We sat down again and looked at each-other once more before removing our masks. I took mine off quickly, snapping the straps sharply while she struggled to tear the straps and ended up slipping it down around her neck.

We wanted to go back to the old ways.

 

Video

 

I gazed at myself on the computer screen. I moved backwards and forwards, turned my head slightly left and right, lifted my chin up a little, down a little, moved the webcam left and right. I moved the curtains behind me to one side and a picture on the wall across a few centimetres. I turned the lights down and opened the curtains to let in just the right amount of natural light. In the old days I could finish a surgery and then catch sight of some extravagant nostril hairs, a fuzzball of hair that had been blow-dried on the cycle-ride to work, or a stain on my shirt that a dozen or more patients had stared at all morning. These days I’m seeing what they’re seeing, And the critical self-regard is relentless.

 

My patients have refused a home visit when they were seriously sick because they hadn’t showered or tidied their flat. They want time to prepare themselves before the doctor lays his judgemental eyes upon them. The clinical gaze is full of moral judgement whether it is intended or not. Look too good and the doctor might not take your symptoms seriously enough, look too bad and they might look disgusted. This Goldilocks zone can be precariously small if you’ve been made to feel you got it wrong before. Using the video consultation software lets us see ourselves as others see us and if we don’t like what we see, we imagine they think the same.

 

 

Suddenly my patient appears on the screen besides me. I look at her and smile, but catch sight of my face … and my eyes are focused …. where exactly? If I look at her then I am gazing off to the left, if I look at the camera then it looks as if I am looking at her, but I’m not. If I look at myself (I can’t help it) then I’m looking somewhere else. The concentration required is unnatural and exhausting. She was sitting cross-legged on the floor with the phone placed in front of her. She wants to show me where it hurts and it is easier to do that this way. Yesterday someone wanted to show me a rash on their abdomen and they thrust their phone right up against it. It felt like they had grabbed me by the scruff of the neck and held my face inches away from their waist. I physically recoiled from the monitor, but the image stayed the same, wobbling around, in and out of focus.

 

She clutched her abdomen to show me where it hurt, could it be her liver she wanted to know, I wanted to answer the same way – by pointing to my own body, but my carefully curated head-shot meant I couldn’t get enough of my body in the field of view. She cocked her head trying to see what I was trying to show her as I fiddled with the camera and stood back and up on the tips of my toes and eventually climbed on my chair. In the old days it was much easier to show (and feel) where it hurt.

 

“Show me where it hurts”

 

I have felt uncomfortable asking patients to reveal their bodies on a video link. In the old days, patients could undress behind a screen and I would wait until they were ready, or I would lift their vest to feel their abdomen, or guide the patient into the correct position to examine an intimate part of their body. When I visited patients at home people knew that the doctor was there, and you weren’t afraid that someone might burst into the room. I am sure that the awkwardness of examining bodies by video is felt by doctors and patients.

 

We are amateurs – like clumsy teenage lovers trying to work out where to start. The technology wasn’t made for this; we weren’t made for this. I am a fan of professional Youtubers Contrapoints and Philosophy Tube and have watched them progress from badly lit monologues into set pieces of performance art. In the old days I liked to imagine good consultations like performance art with my consulting room as the backdrop to a drama performed by patient and doctor improvising with one another. Now I have been evicted from my room to make space for a Hot Hub to see patients with suspected Covid-19 and I am working in a minor surgery suite with a telephone and a webcam perched on top of my computer screen. I see only two or 3 patients a day, one by video, one in my new room and one home visit. My normal complex patients with chronic pain, chronic fatigue, chronic anxiety and complex trauma have largely disappeared from my appointment lists, but I have been calling them to see how they are. Paul Dieppe and Julian Tudor Hart wrote a paper in 1996 called Caring Effects showing how continuing interest and ‘caring about’ as well as ‘caring for’ for patients with chronic pain, reduced symptoms, disability, and analgesic medication use.

 

For some doctors and some patients I am sure that the new world is a welcome relief from the intensity of physical proximity. In interactions with people who present in existential distress/chronic pain most of the effort clinicians undertake is NOT to listen, not to get absorbed into this black hole of despair. Multi-sensory exposure at close proximity is the situation in which they want to press the button for the ejection seat, or for the trap door under the seat of the patient. When doctors give out these ‘not wanting to be there’ vibes, patients, who are often highly attuned to rejection, pick up on them acutely and the desire to escape is mutual.

 

Little is known about patients’ experiences of these new ways of consulting. Doubtless it’s good for some. But others have complained about the costs, especially people with pay as you go phone contracts. It isn’t suited to people without phones, people who don’t speak English, elderly patients, people without a quiet space to talk, people with sensory impairment, people who struggle to make themselves understood, people who don’t feel safe at home, people who like to be greeted by a friendly, familiar face, people who are isolated and need a reason to leave their homes.

 

In a face to face consultation spaces between doctor and patient are tacitly negotiated. Access to bodies by way of a physical examination; access to biology with scans and blood tests; and access to life stories; cannot (or at least should not) be taken for granted. Sometimes permission is given explicitly, for example consent to an intimate examination, but usually doctors explore and patients reveal only so far as they feel comfortable. Consent is gradually conceded (or withdrawn) according to how comfortable they feel, which in turn depends on body language – which is lost when we are not together.

 

A GP surgery and a doctor’s consulting room are physical spaces where secrets are confessed, mortality contemplated, bodies exposed and biographies unearthed. We call this clinical practice, but in many ways it resembles what happens in a church. People go to church or to the GP in order to think, say and do things they do not want to do or cannot do elsewhere. It is about a safe and symbolic space as well as the people in it. I do not think we can do without consulting rooms any more than we can do without churches.

 

In the old days, I would meet patients in the waiting room, watch them walk towards me and then accompany them to my room. At the end of the consultation I would sometimes walk them back again. Where they waited and how they walked were details that mattered. But nowadays they appear from nowhere and disappear in an instant. In the waiting room I would see other patients, other doctors and nurses and receptionists. I could sense the mood. Walking around the practice I would meet with colleagues and we would talk about patients we were worried about and stuff going on in our own lives. A lot of problems were solved and support given and received in these chance encounters. Now when we come out of our rooms we move as if surrounded by invisible Zorbs. We pass one another with our backs to the wall, holding our breath. We have more formal catch-ups, which is good for some problems but less suited to others. Patients frequently had chance encounters in the waiting room where gossip was shared and friendships rekindled.

 

Being with and being around people is as important as talking. When my dad died what my mum missed most of all was his presence. He hadn’t spoken much for a couple of years, but she missed his being more than his words. We all miss our patients being around. Many of our receptionists have been in the practice for years and have very fond relationships with our patients: the poppets and the pains in the arse. We’re doing well under the circumstances, but there is an air of sadness.
The loading of intimacy with fear fills me with sadness. 

Some things we can be sure about. We are novices but we are resourceful and we are learning fast and we will get better. We will be able to offer patients a choice of initial contact- online, by phone or by video or face to face. Many, quite likely most problems can be solved safely and satisfactorily without a face to face consultation. This way patients and clinicians will be free to spend more time with one another when they really need to. It will be especially valuable in hospitals saving patients the trouble of arduous travel, expensive parking and long waits. More clinicians will be able to work flexibly (from home if they want). There will be less waiting and waiting rooms can be requisitioned for social activities – a purpose they served before, even if it was not explicitly acknowledged. But no matter how long this lock-down and fear of contagion continues we will not lose our desire to be with one another.

 

A month in primary care with Coronavirus: sudden death, end of life discussions, lockdown and inequalities.

Timeline

Like most doctors I hadn’t been paying much attention to COVID-19 until last month.

Wednesday March 11th – WHO announced that there was a ‘Pandemic’.

March 12th I saw a tweet from Prof. Trish Greenhalgh urging us to read, ‘Coronavirus: Why you must act now’, by Tomas Pueyo. The potential disaster became suddenly clear. I sent it to my GP partners at work and one replied, “then we’re done for”. https://medium.com/@tomaspueyo/coronavirus-act-today-or-people-will-die-f4d3d9cd99ca

In 2009 during the H1N1 flu, a public health consultant came to our practice and described a potential situation so utterly catastrophic that we sunk into a collective state of hopelessness and despair for several days. We blocked out any thoughts of pandemics from then on.

Friday 13th I called a consultant foot surgeon about a patient I was worried about. He said that all his clinics had been cancelled until further notice. I asked him what he was going to do. “Play golf!” he replied cheerfully. Now I like to imagine him redeployed to assist nurses in intensive care for 13 hours a day.

That same day I emailed my sons’ cycling club to suggest they called off the session the following day but they replied to say that they were going to carry on, in line with government guidance. Cheltenham festival was still going ahead after all. It was a harbinger of what was to come. That hard choice between following government guidance or doing your own thing. When you’re dealing with large groups of people – 140 kids in a cycle club or 52 employees split across 2 GP surgeries, you need clear guidelines and operating procedures. And where there is usually just one government guideline there are a multitude of feasible alternatives and a consensus can be hard to find.

Saturday 14th Our next-door neighbour told us that a teacher from our son’s school whose son had been staying over with her children and ours a few days before, had been diagnosed with coronavirus. We looked at our snotty children and thought about the number of times we had kissed them in the last 24 hours and realised that it would be impossible to avoid catching it ourselves.

Sunday 15th In the evening after work I felt vaguely unwell with chest tightness, sore glands and a cough. I couldn’t tell if it was psychosomatic. I’m a poor diagnostician when it comes to my own symptoms. A few years before my psychosomatic illness turned out to be an appendix abscess. I called work to say I planned to stay at home for a week. For the sake of my colleagues and my patients it was better to err on the side of caution.

Monday 16th I arranged to stay in touch with my two trainee GPs by phone and video. One called me at lunchtime about a man in his early 60s who worked as a hospital porter. His wife had called because she was worried about him; he was tired, nauseous and couldn’t get out of bed. No cough, no fever, no chest pain, no past medical history, not on any medication, hardly ever gets sick. I suggested that my trainee ask if he, or rather, his wife, would be happy to postpone a visit but have a follow up phone call the following day. When she called back, his wife was in a state of panic – “Come now! He’s going blue!!” The paramedic arrived at the same as my trainee, seconds after he had a cardiac arrest. They tried to resuscitate him with several rounds of CPR but he didn’t survive. My trainee didn’t even have time to put on any protective equipment. We couldn’t prove that he died because of coronavirus but we couldn’t put the possibility out of our minds.

Since then we’ve learned from personal experience and published data, that men in their late 50s and 60s are dying disproportionately and that sudden deterioration at around day 10 of the illness, with an acute worsening of fatigue is an ominous sign. Half my colleagues are men in their 50s. Many of them, because of their experience, are offering to help in the most hazardous places.

Conversations about the end of life

Last week I spend two days calling my most vulnerable patients and their carers to discuss what they would want if they caught Coronavirus and were sick enough to need hospital treatment. Some of them know what it is like to survive a cardiac arrest and ventilation and some of them would be willing to go through it again. If you are relatively well to begin with oxygen therapy might be all you need, but most people understood that the chance of surviving a cardiac arrest bought on by infection with coronavirus in an already frail body would be negligible. “I’ve had my life doc, let them save their ventilators for people younger than me”, said one woman, who is not much older than I am. If I had overwhelming infection and multiple organ failure I wouldn’t want or even expect my colleagues to try to resuscitate me. Not only would my chance of survival with any quality of life be unacceptably low, but the risk of infecting those treating me would be unacceptably high. We are supposed to have the right to refuse any reasonable treatment, but the problem is that CPR is so often performed when it is completely unreasonable, in people whose hearts have stopped because their bodies are too weak for their hearts to keep going. The refusal of CPR is a reminder to professionals whose reflexes are trained to save lives first and think later, that a peaceful death is possible and preferable.

Some of my patients wouldn’t want to go to hospital under any circumstances. We talked about what critical care might involve – oxygen might be enough. Home treatment with oxygen might be an option, but not just yet. For sons and daughters caring for elderly parents, the greatest worry was who would care for their parents if they themselves got sick. I put a note ‘Patient themselves providing care’ on their records to alert anyone that might treat them in an emergency. I promised to help anyone who chose to die at home.

I’ve never experienced so much gratitude as I did in those 2 days of conversations about serious illness and care at the end of life. It helped enormously that we had nearly 20 years of continuity of care before we talked.

Poverty and inequality

We serve a relatively young, deprived, multi-ethnic population in Hoxton in London’s East End. People in their 50s suffer a burden of diseases like heart disease, lung disease, obesity, diabetes and cancer, that people in wealthier areas don’t experience until they are in their 70s. All of these increase their risk of dying from Coronavirus. Lockdown hits them harder too. Childhood poverty is around 40%, twice the average for England and deprivation for older people is more than three times the national average. Many of my patients work as carers, cleaners, on public transport or on checkouts, shop floors, bars, cafes and warehouses.

In the last month we (my family and I) have been fortunate enough to distract and soothe ourselves by baking, gardening and exercising in the forest or in the garden and streaming movies. Life is different for most of my patients.

  • Isolation and overcrowding

I look after a family with four children between the ages of 3 and 16 and two adults in a two bedroom, 5th floor flat. One of the children is disabled and autistic, one of the adults is addicted to heroin and alcohol. There are countless variations on this theme of overcrowding, disability, mental illness and addiction.

  • Violence and abuse

Up to 10% of my appointments used to be spent with people suffering anxiety and chronic pain and for many of them it was related to living in fear. A trip to the doctor was an excuse to come to a place of safety and spend time with someone kind and attentive. We didn’t need to (and often couldn’t) talk about what was going on home. I haven’t seen any of these women in weeks. I haven’t had any reports to complete for social services about children at risk. I don’t know if they have safe places to go, or if anyone is looking out for them if they’re not seeing anyone outside the family home.

  • Digital hardware and data (streaming/ video/ phone-calls/ internet)

At home we’re online all the time. We pay for unlimited wi-fi. But many of my patients are on pay-as you go data contracts and regularly use up their data just waiting for calls to be answered, never mind Netflix. Some cannot use a smartphone or a computer. Some are illiterate. Some of them run up huge debts with multiple phone contracts. Video consultations with your GP are now commonplace, but the more I do, the more I worry about the people we’re not hearing from.

  • Bulk buying without a car/ money

We are very well served with local shops where I live in Leytonstone and can get all the fresh produce we want. But supermarkets are being stripped bare of essential produce by people whose cars and wallets are big enough, leaving only scraps for people who live one day or one week at a time, who have to walk and carry everything home. They need to get out more frequently, walk the streets and wait in queues.

  • Access to green spaces

At the weekend I rode my mountain bike in Epping Forest at sundown. It was beautiful and social distancing was easy. My sons played on the grassy flats at the end of our road. We cooked a barbeque in the garden. At work I spoke to a woman with a eight year-old daughter who has ADHD and anxiety. They live on a 8th floor, north facing flat without a balcony. If they want to go out they have to take a lift or walk down a narrow stair case where social distancing is impossible. Victoria Park, the biggest park in Hackney, has been locked shut for weeks because of adults hanging out in crowds. I know parents with young kids who have barely been outside for a month.

  • Physical distancing

I cycle 9-10km to work every day. It’s easy to keep my distance and stay fit. I have a job that I enjoy, that pays well where I am surrounded by supportive colleagues. We moved rapidly to a mixture of telephone and video consultations and home working, physically isolating ourselves from our patients.

Many of my patients work in jobs that demand travel and human contact –they are carers, cleaners, bus-drivers, shop staff, teachers, nurses, midwives and pharmacists. Most of them depend on public transport to get to work. They are having more far more face to face contact than I am having as a GP and while I have all the PPE I need, many of them have little or none. Analysis of location data from US cities shows that the wealthier you are the sooner you are able to isolate and the more likely you are to be able to work from home.

See https://www.nytimes.com/interactive/2020/04/03/us/coronavirus-stay-home-rich-poor.html

  • Social contact

No social contact may preferable if your main concern is contagion, but it is still a basic human need. My sons haven’t hugged me so much in years. They want physical reassurance and closeness, more than explanations or soothing words. When staff have been unable to come into work because they’ve had symptoms or been in contact with someone who has symptoms (none of us have been tested) they have all been desperate to come back and be around their colleagues. Before Covid-19 many of our must vulnerable patients rarely left home except to see their GP or practice nurse. Being physically present with someone with whom you feel safe and cared for is something too many of us take for granted. Cautiously I’ve allowed some of them back. We sit with our masks on at opposite sides of the room. One woman I look after, who has already spent weeks in intensive care two years ago and is on the high-risk shielding register asked me to come around to have lunch with her. Her son died just a few months ago, “You know me doc, I’m not afraid to die”.

  • Precarious employment

I have friends who work in hotels, building, catering, and others who are musicians and artists who have all lost their jobs. Many of my patients earned too little to save and are now without work or money. They are dependent on universal-credit and the kindness of strangers. They may have enough to eat but you cannot live on food alone. We don’t know how long this will last or what jobs might be there when it’s over.

  • Social capital

I can depend on friends and family, most of whom are as fortunate as I am, to help me out – practically, financially and emotionally. Like most of us, in our socially divided country, we are surrounded by networks of people whose circumstances are similar. Often, I am the only professional person my patients know.

  • Meaning and purpose

Working in the NHS – being lauded on the news and being clapped in the streets every Thursday evening and thanked all day is something I’ll never forget. We’re taking risks, but despite the overused analogies of war, it’s in no way the same as being in an actual war-zone with explosions going off and bullets flying by. We’re not dealing with the bodies of children who have been maimed by landmines and we’re not getting shot at on the way home. What we do have, now more than ever, is a sense of meaning and purpose combined with public outpourings of appreciation.

All of this is on a background of 10 years of austerity in which the welfare state has been stripped back and public health funding has been stripped bare. The NHS has barely recovered from the most shambolic re-disorganisation by Andrew Lansley in 2012, followed by 8 more years of underfunding. We have seen a rise in insecure employment, and a massive distraction with Brexit which has fuelled a breakdown in social cohesion and undermined public trust in politicians and experts at a time when we need them more than ever.

How will we recover?

We have learned that the NHS can change very quickly when driven by clinical leadership and patient needs. Resistance to Lansley’s disastrous market-oriented NHS reforms resulted in a backlash of criticism accusing the NHS of being intrinsically resistant to change and indifferent to patient needs. Now it has been found to be fleet-footed when the people that work there can see that that they are serving patients and not political vanity or private profits. We’ve been allowed to decide for ourselves what’s most important. In general practice we have rapidly taken up telephone and video consultations and we have concentrated our efforts on the interventions we know make the biggest difference – proactive care for our most vulnerable patients, immunisations for children, primary and secondary prevention of cardiovascular disease and better diabetic control. We have stopped the arduous and pointless CQC inspections, GP appraisals and NHS health-checks. We are talking to each other more than ever about patients we’re worried about and getting second and third opinions about complex decisions.

In the last month we have become better connected with community organisations than ever before. Far more of our patients depend on social support than will ever depend on medical care. Long may this develop and continue.

 

Further reading

To protect population health it will be essential to avoid a further period of austerity and the associated reductions in social security and public service spending. Instead we must build a more sustainable and inclusive economy. British Medical Journal 27/04/2020 https://www.bmj.com/content/369/bmj.m1557

A bioethicist at the heart of the Italian coronavirus crisis asks: why won’t we talk about the trade-offs of the lockdown?

https://aeon.co/essays/a-bioethicist-on-the-hidden-costs-of-lockdown-in-italy

 

 

 

New kinds of heroes

Charge_of_the_Light_Brigade

Half a league, half a league,

Half a league onward,

All in the valley of Death

Rode the six hundred.

“Forward, the Light Brigade!

Charge for the guns!” he said.

Into the valley of Death

Rode the six hundred.

“Forward, the Light Brigade!”

Was there a man dismayed?

Not though the soldier knew

Someone had blundered.

Theirs not to make reply,

Theirs not to reason why,

Theirs but to do and die.

Into the valley of Death

Rode the six hundred.

The Charge of the Light Brigade

The generals repeated the old lie, “Dulce et decorum est, propatria mori!” Sweet and becoming it is, to die for one’s country

Hippocrates and Galen, are still renowned for their wise and innovative advice on medical matters. When it came to plague, they offered guidance, rendered in Latin as ‘Cito, Longe, Tarde,’ which translates as ‘Leave quickly, go far away and come back slowly.’ When the Black Death swept over much of Asia, Europe and parts of Africa in the mid-1300s, such advice was about as good as it got.” Bought to Life

Some did stay, out of Christian duty, desire for fame or because they got ‘hazard pay’ from local communities. The idea of a social contract didn’t come around until the 19th century.

At the start of the 20th century the American medical code of ethics stated, “when pestilence prevails it’s the physician’s duty to continue ministering to the sick even in peril of their own lives”

In 1912 the language was strengthened to say there was, “an obligation to continue taking care of people who posed a contagious threat even if you were not being paid to do so.” Ethics Talk podcast

But how far should this duty reasonably extend? Doctors are already dying from Coronavirus infections contracted in the course of caring for infected patients. Many, if not the majority, lack the recommended protective equipment.

Doctors have always placed themselves at risk in the course of their work. In 2003-4 I joined Medecins Sans Frontieres (Doctors without Borders) and I accepted a job in North West Afghanistan knowing that there were risks including death, because of ongoing conflict. While I was there some of my colleagues were assassinated very close to where I was working. Since then I have chosen not to go back to work in conflict zones, but other doctors continue to do so. Doctors’ attitudes to personal risk in the line of duty vary considerably.

At one end of the spectrum are those, like David Nott, the war surgeon, who wrote, “I have travelled the world for 25 years in search of trouble. It is a kind of addiction, a pull I find hard to resist. It stems partly from the desire to use my knowledge as a surgeon to help people who are experiencing the worst that humanity can throw at them, and partly from the thrill of just being in those terrible places, of living in a liminal zone where most people have neither been, nor want to go.” Others are risk averse and under the current circumstances are avoiding all clinical contact while their colleagues continue to work in intensive care units with patients who have coronavirus infections.

I find myself somewhere in the middle of the spectrum. In 2003 I was single and in search of adventure and I felt invincible. In 2020 have young children and I feel more mortal.

We all have reasons for where we might find ourselves on the risk-taking spectrum. One is what motivates us. Not all doctors are primarily motivated to take risks by the desire to save lives or help people less fortunate than themselves. The motivation may be extrinsic rewards like money or fame. Other motivations include intrinsic values like caring, social justice or self-sacrifice which may derive from upbringing, life experiences or religion. Caring can be viewed as a positive motivation; for example, someone bought up in a caring environment with positive experiences of care and caring, for whom caring is an integral part of their identity.

The need to care for others and sacrifice oneself may also come from a need to repair something flawed, damaged or shameful about oneself, to compensate for low self-esteem. Growing up in a relationship with parents who made someone feel inadequate may result in these feelings persisting into adulthood. The adult tries to compensate by self-sacrifice and risk taking. The sense of being flawed or ‘bad’ drives the need to ‘do good’ while the risk-taking is driven by a sense of ‘just deserts’.

There is a strong sense of this when listening to the war surgeon David Nott who places himself not just in high risk, but unnecessarily high-risk situations. Risk for him is both euphoric and addictive. He is the archetype of a heroic doctor, putting the lives of his patients above concerns for his own life. We might hope for him to be our surgeon in a life or death situation, but we might feel differently if we worked with him.

Doctors work in teams; with other doctors, nurses and health professionals as well as admin staff. It’s easier and perhaps more comforting to imagine that the patient is their only, or at least primary concern, particularly in relation to a war surgeon. A GP has to care for individual patients as well as their practice population. We have to support widows who are grieving and be sure that all the children registered are fully immunized. As a senior partner in my practice I am responsible for over 26000 patients and 40 members of staff. The more I sacrifice myself in the services on one person the less I am available for others.

Brain surgeon Henry Marsh is another heroic doctor whose concern for his patients described in his book First Do No Harm runs to commandeering hospital beds and over-riding clinical colleagues and an open contempt for hospital managers whose concern is the smooth running of the hospital. From an individual patient perspective, you’d want him on your side, but if you happened to need a hospital bed for something other than neurosurgery you might feel differently.

Obligations to individuals and populations come into conflict all the time in medical practice and the extent to which our sphere of responsibility diminishes with distance varies considerably between doctors and between individualistic and communitarian cultures. We live in an individualistic culture that valorizes heroes. We are conservative; suspicious of foreigners and socialism having voted for Brexit and 10 years of Tory rule. We are looking for heroes to save us from Coronavirus.

For the last week I have been self-isolating – with what feels like a typical cough and cold. I don’t have breathlessness or a fever. There’s no way of knowing if it is a mild case of coronavirus. Under other circumstances I would be at work. Presenteeism – the phenomenon whereby healthcare professionals come to work in a state of ill-health that they would advise their patients to stay at home, is rife. But this might be Coronavirus. As the pandemic unfolds we might reach a situation where medical professionals are more likely to be infected than their patients. Dr Gordon Caldwell a consultant physician in Oban, has written about what should happen if he requires ventilation because of coronavirus infection.

If I survive to be weaned off the ventilator (1 in 5 chance) it would be at the expense of 1 staff member with severe Covid 19 and 3 others infected, who in turn could infect other staff, patients, and their own family and friends. Until someone can counter this argument with a convincing statistical, not emotional, case, I have stated that I am “Do Not Attempt Cardiopulmonary Resuscitation (DNACPR” and “Do Not Intubate and Ventilate (DNIV)”

 

Hospitals as well as doctors might soon become the hubs for transmission of coronavirus in the UK if we continue to follow Italy’s lead. The hero who remains on deck after all the passengers and crew have left the sinking ship is not suited to the present epidemic. Our present-day heroes will have to relinquish the helm while they isolate themselves to protect their colleagues and their patients. They will have to trust their colleagues to take over. They will have to show that we can carry on without them.

Michael West – an organizational psychologist who leads on compassionate leadership for the NHS recommends that the priorities should be listening to staff, removing obstacles to safe and effective work, and providing for their basic needs: safety, rest, nourishment and connection. The lesson from this is that during this crisis every single one of us, will at some point have to be a new kind of hero.

 

Trauma informed care in General Practice

“In the mid 1990s the CDC and Kaiser Permanente discovered an exposure that dramatically increased the risk for 7 out of 10 of the leading causes of death in the United States. In high doses it affects brain development, the immune system, hormonal systems, and even the way our DNA is read and transcribed. Folks who are exposed in very high doses have triple the lifetime risk of heart disease and lung cancer and a 20-year difference in life expectancy. And yet, doctors today are not trained in routine screening or treatment. The exposure I’m talking about is not a pesticide or packaging material it’s childhood trauma”.

Nadine Burke Harris

 

In this blog, I’d like to suggest what routine screening and treatment might look like in primary care/ general practice. In previous blogs I’ve focused on care for individuals, but here I want to describe a population approach.

Childhood trauma (also called ACEs Adverse Childhood Experiences,  is a risk factor for disease, and like other risk factors, for example smoking, the greater the exposure, the greater the risks. Maltreatment that begins earlier in life, is more severe and continues for a longer duration is associated with the worst outcomes. The harm is a result of physiological and behavioural changes; what I have recently described as the ‘Trauma World’  also called ‘Toxic stress’. The word ‘trauma’ is often used to refer to this response, rather than the traumatic events. This is what makes trauma traumatic. For example, PTSD often develops after a supportive partner dies, because their partner provided them with enough resilience to cope with the trauma of their past experiences. Trauma is a legacy of emotional hypersensitivity (or the opposite, alexithymia/ numbness), toxic shame, dissociation and harmful coping strategies. Survivors present to GPs with chronic anxiety, recurrent panic attacks, chronic pain and chronic fatigue. They are more likely to suffer from multiple long-term conditions like diabetes, vascular and lung diseases, autoimmune diseases and cancer at younger ages. As well as being at risk of ill-health they are at risk of violence, abuse, homelessness and destitution. They are less likely to have attended for vaccinations or screening for cancer and they are more likely to smoke, drink alcohol excessively and use drugs including potentially hazardous combinations of prescribed drugs.

A GP practice would want to identify people suffering from trauma in order to diagnose diseases early, to prevent them from developing and to provide appropriate social and psychological support.

A GP practice has a list of registered patients (a denominator) and they will know the numbers of people with long-term conditions such as diabetes, hypertension and depression (the numerators), and they will be invited in for regular reviews. It is easy to identify these people because they have a diagnosis. Because ‘trauma’ is not a diagnosis, it is not tested for or documented like other long-term-conditions so we do not yet have a reliable way of identifying patients who have been affected. A recent study found that trying to identify patients by searching their records for evidence of Adverse Childhood Experiences found only about 1% of those they expected to find.

There is a code for ‘History of complex trauma in childhood’ which has only recently been introduced, but despite my interest in the subject, I am yet to use it because I’m not sure that many people would want it in their medical records. They might rightly fear that other clinicians would bring it up uninvited or worry that whatever symptom they sought help for would be blamed on ‘trauma’. A history of trauma may be hidden in the text of a consultation or a hospital letter, but we cannot search the electronic records in this much detail as we can for diagnostic or problem titles. In any case, it is the presence of trauma, rather than a history of adversity that we are trying to identify. So instead of searching for a diagnosis we could include people with symptoms that are suggestive, if not diagnostic of a past history of trauma; problems like chronic anxiety, chronic pain, irritable bowel syndrome, chronic depression, OCD, self-harm, personality disorders, alcoholism, opiate/ benzodiazepine addiction – and I would include anyone on long-term anti-depressant or antipsychotic medication, regular opiate or benzodiazepine prescriptions.

Patients identified this way might represent 10-50% of a GP practice population depending on issues like deprivation and immigration. Having identified patients, they should be invited in for an initial review and if suitable (more on ‘suitability’ below) added to an ‘at risk’ register for continued annual reviews. Many of these patients will be known to be suffering trauma, and some will not. At the initial review both doctor and patient need to agree whether a regular review would be useful. If there is a disagreement, then the patient’s preference is what matters, after all it’s for their benefit. I would caution against assuming that non-attendance is a sign of disagreement, since people whose lives are insecure and full of anxiety often struggle to attend appointments

The review:

Comprehensive

An annual review should be comprehensive so that all the patient’s long-term conditions are reviewed at the same time, so as not to overburden them with appointments. Their lives are usually filled with bureaucracy as it is. I would include:

  1. A co-created problem list.

It’s been enormously helpful for me to look at patient’s records with them and agree on what to call their different conditions and which are active and significant. It’s an opportunity to think about what the prefix ‘chronic’ means when applied to pain, anxiety or depression. I quite often discover that embarrassing problems like incontinence, mentioned years ago have not been bought up since and are not ‘minor, past problems’ but are definitely ‘significant and active’. In my experience, the process of agreeing on this list together helps both patient and clinician to join-the-dots and see how different conditions relate to one another. At this point it is not unusual for childhood trauma to be bought up and discussed in detail or at least acknowledged. This is a good opportunity to explain the purpose of the review.

An important point here is to recognise that significant childhood trauma is a risk factor for a wide range of diseases and the point of the review is to treat them early or prevent them so far as possible. This can help to reassure patients that far from attributing all their symptoms to trauma, we are staying vigilant for the biological consequences of a lifetime of stress in a way that is safe, structured and planned.

  1. Disease identification and prevention

For many people the experience of past trauma leaves them in a state of tension and hyperarousal, so assessing for hypertension, cardiovascular disease and inflammatory diseases such as arthritis and colitis should be included. Screening for cancer, vaccinations for HPV, childhood viruses, hepatitis and flu, sexual and reproductive health are all especially relevant for people with a history of trauma who may, as a result of insecure, chaotic lives have missed out. Because trauma increases the risks of developing disease, they have more to gain from screening than people more fortunate.

  1. Risk factors relating to coping

People who have experienced significant past trauma often resort to coping strategies that in themselves can be harmful: smoking, excessive drinking, illicit drug use, eating disorders, unsafe sex and so on. We should ask about coping strategies and offer support with smoking cessation and alcohol services, sexual and reproductive health and whatever else is required. We should help them find other, less harmful ways of coping.

  1. Social security

One of the most traumatic events that effects my patients who have already experienced trauma is having their benefits stopped after assessment by DWP. Over 90% of them succeed on appeal but have nothing to live on for 6 months or so while waiting for the process. We need benefits advisers to be available to help people when they need it, within GP surgeries. Social security also includes personal safety and many women that I look after with a history of childhood trauma also have ongoing trauma from domestic violence, so we should ask about this – the HARK questionnaire is a useful aid. We can then refer to specialist supportive services. Young people are at risk of gang violence and exploitation and should be offered support.

  1. Mental health

Many patients will already be suffering from diagnosed mental illnesses, but others will have undiagnosed problems like anxiety, panic disorder, OCD and autistic spectrum disorders. Including mental health as part of a general healthcare review helps to create a culture in which a healthy mind and body are considered together.

  1. Medication review

People with a history of significant trauma are often prescribed a lot of drugs to help alleviate their symptoms and treat their various long-term conditions. A medication review is an opportunity to talk about which drugs are helping and which ones are no longer useful and which ones are harmful; to check for side-effects, interactions and risks including dependence and accidental overdose. We have a clinical pharmacist in our practice who can help with medication reviews including tapering regimes for people who want to come off harmful drugs.

  1. Social prescribing and social isolation

One of the consequences of trauma is that survivors are more likely than others to be isolated and lonely. Annual reviews could take the form of ‘group consultations’ already being used successfully for diabetic annual reviews. There could be a social space in the practice, in the waiting room if it is big enough, where people can get a cup of tea and sit around tables where they can chat while waiting to see a clinician. Some people much prefer to be in their own space, so they need to be made to feel safe and comfortable as well. Most practices can refer patients to social prescribing to help patients find safe places to be doing things with other people in the community.

  1. Physical wellbeing

Bottom up therapies are things that you can do to feel more in control of your body. It can be anything from knitting to yoga, from gardening to parkrun. Nerve fibres from the body travel up to the brain, so that things that make our bodies feel capable, controlled and strong also help our minds to feel the same way. For many people this is much more effective (and acceptable) than psychological therapies. Most practices can refer for exercise programmes and some are even introducing other activities like tai chi and therapeutic gardening.

  1. Nutrition

It is hard to be feel well if you are unable to afford to eat well, if your diet is unhealthy or food is associated with shame. Programmes like Food For Life run by Shoreditch trust can help people learn to change their relationship with food https://www.shoreditchtrust.org.uk/health-and-wellbeing/food-for-life/.

Conclusions

This is an idea and not something that I have implemented, yet. From a GP perspective it might seem like a lot of additional work, but I suspect that most people identified will already be coming in for a review because they have previously been diagnosed with other long-term conditions. It will identify new patients by including a new set of long-term conditions like chronic pain and addiction. I hope that it upsets the Bio-psycho-social hierarchy by making social security, mental health and physical health equally important. I hope too, that it helps to reduce the risks of diagnostic overshadowing by taking a proactive approach to the early identification of disease in people at high risk. Most of all I hope that it helps doctors and patients to come to a better shared understanding of one another by co-creating a problem list and thinking about why it looks that way and what the implications are. And from this I hope to shine a light on hope and salutogenesis.

What is toxic stress and what can we do about it?

*Felicity De Zulueta

 

 

 

 

The Trauma World and The Healing World

John sat next to his mum, an elderly, anxious looking woman who did most of the talking. He rubbed his palms hard together, as if trying to rub out a stain while she talked. He was sweating and his right leg kept trembling. He clamped his hands between his thighs to keep his leg and hands still. Mostly he looked down, without focusing, at the floor in front of him. He wore a black jacket over a grey tracksuit with white trainers that had seen better days. He was new to the practice, though I had met his mum a few times before. He wasn’t long out of prison and Janet, his mum, had told me a while ago that she wanted to bring him to see me when he got out. Fortunately the recent spell inside had been short and we had a pretty decent set of notes from his previous GP.

Before he came in I looked at his ‘problem’ list. The electronic patient (medical) record (EMR) has a list of Active and Past Problems, sub-categorised into Significant and Minor. A patient’s problem becomes a Problem in the EMR when it is picked up by the EMR and ascribed a code. A Problem can be a diagnosis, a symptom, or anything else a patient reports that a doctor or a medical summariser adds to the record, so long as it is picked up by the EMR (it comes up in blue text as you type it in). Problem codes aren’t (though I would like them to be) a definitive list of a patient’s problems, but they can be useful. John’s problem list ran to about 160 entries over 4 pages. There were Problems that weren’t problems like, ‘Telephone call to patient’ and ‘results discussed’ as well as Past Problems that I suspected should have been Active Problems like, ‘Anxiety’ and ‘Depression’. Some Minor Problems like ‘Alcohol Problem Drinking’ and ‘Overdose of opiates’ I thought were probably Significant. Problem lists accrue over years and if they are not ‘tidied up’ it becomes impossible to see what problems are ‘Active and Significant’ because they are mixed up with everything else. Another issue is that different problem codes are used to refer to the same problem, for example:

Anxiety states (Significant Past)

O/E anxious (Minor Past)

Generalised Anxiety Disorder (Significant Past)

Anxiety NOS (Minor Past)

Anxiety with depression (Significant Active)

Panic attack (Significant Past)

Agoraphobia (Minor Past)

Social Anxiety (Minor Past)

Irritability and anger (Minor Past)

Often the same Problem code is there repeatedly; there were 5 Anxiety States, 4 O/E anxious and 3 Anxiety NOS. as if anxiety is something new each time, rather than a chronic, enduring state.

Problems relating to anxiety were a feature of his problem list from the age of 11 up to his present 41 years.

Other Problems referred to physical symptoms and conditions that frequently accompany anxiety:

Irritable bowel syndrome (4 times, Significant Past)

Dyspepsia (8 times, Significant Past, 3 times, Minor Past)

Bloating symptom (5 times, Minor Past)

Abdominal pain (5 times, Minor Past)

Chest pain (4 times, Significant Past

Dizziness

Feels Faint

Insomnia

Urinary symptoms (3 times, Minor Past)

Burning symptom

Going through a problem list is like examining a crime scene for evidence in order to make sense of what has gone on. A problem list is limited by culture, assumptions, omissions, misunderstandings and mistakes. It serves as a tool for audit and finance – we need to know how many patients we have with depression/ diabetes/ cancer/ heart disease and so on so that we know can make sure that we call them in at regular intervals for proactive, preventive care and get paid for it. Because of this, certain problems like these are more reliably coded than others. The presence of multiple problem codes referring to anxiety over a lifetime suggest that anxiety isn’t just situational, but has something to do with what happened in childhood or perhaps a genetic/ familial trait. Taken in conjunction with multiple related physical symptoms, the issue looks more like a lifetime of hyper-arousal – a state of chronic fight of flight than of anxiety alone.

One consequence of being stuck in a state of ‘fight of flight’ is exhaustion. This hyper-vigilance is unsustainable. In childhood it comes across as hyperactivity or ADHD, but with increasing age this gives way to exhaustion with chronic fatigue, depression and chronic pain, or cycles that swing from mania or hyperactivity to depression and numbness. I note that John has ‘Emotionally Unstable Personality disorder [replaced Bipolar disorder]’ among his Active Significant Problems. For some people, this chronic stress causes autoimmune diseases like inflammatory bowel disease, connective-tissue disease or inflammatory arthritis.

There were Problems relating to pain:

Abdominal Pain

Generalised pain

Back pain

Low Back Pain

Chronic Low Back Pain

Lumbar Disc Degeneration

Sciatica

Pain in leg

Radiculopathy NOS

Neck pain

Cervicalgia

I looked for Problems that suggested ways of trying to cope with chronic anxiety, depression, exhaustion and pain.

Opiate misuse

Diazepam dependence

Alcohol problem drinking

Self harm

Accidental overdose

Suicide attempt

The problems suggested something that Daniela Seiff wrote about in Understanding and Healing Emotional Trauma called The Trauma World. I’ve adapted it to use in practice – as shown in the slide below. The Fight or Flight response which may include psychological symptoms of anxiety and hyperactivity as well as physical symptoms like irritable bowel syndrome and palpitations comes under hyper-arousal. These are usually the most obvious or visible symptoms. The flip-side, the ‘freeze or flop response’ includes fatigue, alexithymia (numbness) and chronic pain and comes under hypo-arousal. Toxic Shame refers to pervasive self-blame and may include suicidal behaviour and self-neglect. Symptoms like depersonalisation, derealisation, and functional neurological symptoms like non-epileptic seizures are examples of Dissociation. The use of stimulant or sedative drugs – prescribed or illicit, comes under ‘Coping’. According to this model, addiction is a symptom of The Trauma World, not something separate, or even the primary problem. In red I have written words that refer to the experiences that people who live with The Trauma World suffered when their trauma was committed and frequently continue to suffer in their interactions with medical (and other) professionals; cruelty, disbelief, blame and rejection/ chaos.

The Trauma World

There are no simple answers to Trauma World, but there is a mirror image that I have found to be useful, which I call The Healing World.

Where there has been cruelty we can be kind, where there has been disbelief, validation, where there has been blame and shame, vindication and where there has been chaos (and rejection) commitment and consistency, demonstrated by continuity of care. The fingers and thumb don’t mirror the Trauma World, but do serve as a guide for what’s needed. Mind refers to feelings, memories and thoughts which can be helped by therapy. Body refers to physical activity which might be yoga, Tai Chi or knitting, singing, dancing or baking. Something where the focus of attention is on doing things controlled and creative and ideally rhythmical with the body. Biology refers to everything that goes in the body – food and drink, even fresh air. It is a reminder that medicines are only a small part of The Healing World and that what you put in your body affects every part of your body. Positive human relationships have been proven to be the most important factor in recovery from trauma. People are often isolated, lonely and frightened of human interaction, afraid of what other people might think of them or say about them. Feelings of shame, anxiety and depression colour interactions with pessimistic expectations; ambiguous social cues are interpreted negatively. This can be so hard to overcome, and may take years and long-term relationships and unconditional love. A friend and survivor of trauma who runs groups for men who were abused reminds me that, “there are too many of us for you [GPs] but you can help us to help ourselves by providing space for us to meet and run peer support groups'”

Social security is absolutely vital. It is why there is The Trauma World has a social gradient; people who are deprived have fewer resources to buffer the effects of trauma and may live with the threats of violence and destitution. Social security wraps around everything else; make a fist and your thumb wraps around your fingers.

With John beside me, we look at his problem list together. One significant and profoundly useful act, is to agree about what Problems are Active and Significant and what labels accurately describe his symptoms. There no Problem codes for “The Trauma World’ or ‘Complex Trauma’ or even ‘Complex PTSD’. There is ‘Other PTSD’ and ‘Chronic Anxiety’, ‘Chronic Depression’ and ‘Chronic Pain’. We add ‘Irritable Bowel Syndrome’ and ‘Irritable Bladder’. After ‘Other PTSD’ I add a note – ‘discussed with patient, see consult 20.01.2020’ If patients are to receive the benefits to which they are entitled, then at the very least they need a medical report that is accurate and has a list of mental health conditions – in John’s case, Generalised Anxiety Disorder, Panic Disorder, Agoraphobia, Complex PTSD, Depression, History of Self Harm and Suicide Attempts. Emotionally Unstable Personalty Disorder may be unacceptably pejorative, but it’s might be of use in a benefits claim.

I don’t know what happened when John was growing up. I’m not at all sure that it’s necessary for me to know. Probably only if and when John wants to bring it up. There’s enough in his Problem list to know that ‘stuff happened’. Usually though, once we’ve worked through the list and seen the pattern, we’ve laid down a foundation for trust and the past comes out. In that case I document it and leave a reference next to the problem title, so that in future another doctor can look it up without John having to go through it all again.

The Trauma World and the Healing World are grounded in patient experiences and clinical practice. They are a call to action. They demand that we take notice of the bigger picture, that we stop making distinctions between mind and body, that we pay attention to shame and injustice and do something to make a difference.

For more on Social Security and mental health see this special edition of Asylum Magazine (with thanks to https://twitter.com/GUnrecovered on Twitter)

For more on The Trauma World see Daniella Seiff’s website

For more on The Healing World see https://abetternhs.net/2018/10/17/hope-and-salutogensis/

For more on dissociation see https://www.cbr.com/hulk-brian-banner-barry-windsor-smith-bill-mantlo/

For more on Trauma see https://abetternhs.net/2017/10/15/we-need-to-talk-about-trauma/

For more on Chronic Pain see https://abetternhs.net/2013/09/07/pain/

My psychology of pain

Three and a half weeks ago I crashed my mountain bike riding downhill over a jump in Epping Forest, trying to keep up with my 9 year old who is perfectly comfortable being airbourne. I somersaulted in mid air landing on my back, then bounced onto my head and back onto my back (or something that felt like that). The small backpack I was carrying with tools, snacks and spare tubes, dug into my back on the right side of my chest and I was winded, speechless and in a lot of pain. My ride home was exquisitely painful. I diagnosed myself with 2 fractured ribs at the back of my chest and one at the front on the right side and one at the front on the left – I could feel a small step and some movement where they hurt, and still, sleep is almost impossible, sneezing agony and I cannot find any painkillers that do much (apart from 100mg diclofenac suppositories which give me about 5 hours relative relief)

I went back to work the day after the crash – GP partners have a ‘shadow contract’ which stipulates that we shall continue working up until the point of death and for a minimum of another month after that.

It’s still painful, but I can ride to work (10km) so long as I don’t stand up or change speed too quickly.

I’ve begun to notice small signs of improvement and changes to the nature of the pain. More and more it seems to hurt deep inside – where my liver is. I’ve been telling my (non-medical) wife that my liver feels bruised.

Yesterday a partner came back to work after maternity leave, noticed my discomfort and asked what happened. “How do you know you haven’t got a liver haemorrhage?!” she asked, aghast. I let this sink in while my attention drifted into and around my ache.

Ever since then it’s been impossible to shift the focus of my concern. Now it’s my liver that hurts more than my ribs and the nature has become more of a tense, dull, livery kind of pain and less of a sharp, crunchy ribby kind of pain. I’ve given up alcohol for a month and paracetamol and have started being more cautious with how I move.

Simply being more focused on ‘a bleeding liver’ has changed my pain perception and my pain behaviour. It definitely ‘feels like’ my liver is swollen and engorged with a big blood clot. If I have a scan and can see how much or how little damage there is (as represented by the scan) how will I feel then? If it’s ok, will the pain resolve, will I celebrate with a drink? If not, will I worry more and if it looks bad, will the pain get worse and more ‘livery’?

I don’t know.

The iatrogenic harm (harm done by the things doctors say and do) that comes from a suggestion is significant, but largely overlooked – by doctors at least, except perhaps by GPs who are constantly picking up the pieces after their patients have attended A&E with unexplained symptoms onto which an enthusiastic junior doctor has attached a list of possible diagnoses that their daft old GP couldn’t possible have thought of. Our patients come back to see us saying – “the hospital told me you have to refer me / arrange a scan …” Furthermore the more tests we do, scans/blood tests etc. the more abnormalities will show up that are unrelated to any disease or adverse prognosis, but are a reminder that our bodies are flawed and imperfect. A reminder that may make us actually feel unwell.

By not presenting myself to hospital, but avoiding a scan, I’m avoiding a diagnosis, a label and a cascade of interventions. I’m also evading the potential indignity of poor care and invalidation. I’ve had a lot of A&E and follow up hospital visits in the last year of cycling related trauma and the petty humiliations: being ignored, nobody introducing themselves, being patronised and condescended to, upset me. But also it’s upsetting because I / we are all representatives of the NHS and these petty humiliations are symbolic of a service that is failing. And this is another kind of pain I’m keen to avoid.