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
Urinary symptoms (3 times, Minor Past)
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:
Low Back Pain
Chronic Low Back Pain
Lumbar Disc Degeneration
Pain in leg
I looked for Problems that suggested ways of trying to cope with chronic anxiety, depression, exhaustion and pain.
Alcohol problem drinking
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.
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 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/