“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
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:
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
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/.
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