‘Childhood trauma stories tend to be buried in medical notes…’

In their early years, children and adolescents may experience a multitude of, or prolonged exposure to, potentially traumatic and highly stressful events. Whilst some events may directly threaten a child's wellbeing (such as abuse and neglect), dysfunction within the household – such as parental separation, death or incarceration, or parental mental illness or substance abuse – can undermine their sense of safety, stability and attachment as they grow up. Beyond the home, sources of trauma could include terrorist attacks or growing up in a warzone, or natural disasters and accidents.

These traumatic or adverse childhood experiences are known to correlate with poor mental health outcomes. Yet our research has found that data on childhood adversity and other social determinants of mental distress are not systematically recorded, potentially obstructing access to trauma-informed care and services. Childhood trauma stories tend to be buried in survivors' medical notes and are not easily accessible to professionals. This could be detrimental to building a therapeutic relationship that facilitates recovery.

How common are these experiences?

The original Adverse Childhood Experiences study found that 64 per cent of a large sample had experienced one adverse event in their childhood or teenage years; 12.5 per cent had experienced four or more, which is considered to be a high level of trauma exposure. More recently, 64 per cent of adults surveyed across 25 states in the USA and 47 per cent of adults in the UK reported having experienced at least one adverse event before their 18th birthday. Overall, women, LGBTQ+ individuals and those from ethnic minority backgrounds have been found to be at greater risk of experiencing four or more traumatic experiences during childhood. People reporting a high number of adverse childhood experiences are three times more likely to live in the most deprived areas of the country and, as such, inequalities can also be used as an indicator as to how likely the prevalence of childhood adversity is.

Childhood trauma has been shown to correlate with negative health outcomes in adulthood, including mental health disorders, chronic illness, substance misuse and obesity. This is of great public health concern, given the evidence of their long-term and far-reaching impact on adult mental and physical health. Despite the research available, evidence suggests that the findings are not widely understood. For example, healthcare provider knowledge about childhood adversity appears generally lacking, with service users rarely being asked about trauma from their early years during primary care assessments.

It is imperative that practitioners and researchers alike are able to recognise the key risk factors for childhood adversity in order to support their prevention. It is also important to be aware of protective factors such as the creation and development of supportive, safe and stable relationships and environments for children, which can prevent adverse childhood experiences or mitigate against their early effects. With this in mind, understanding and addressing trauma in childhood is crucial when attempting to design support systems and interventions to help those affected to overcome their early life experiences.

Is this data routinely collected within NHS systems?

The short answer is no, there is no coding for such data to be captured. Within a service user's records, their childhood experiences may be collated within notes made by psychologists, psychiatrists or other mental health professionals as a result of assessments, discussions and therapy notes; however, questions about childhood trauma are not routinely asked when service users access support.

Our own research project looked to gain an understanding of a complex service user group, in order to inform consistent and person-centred future service delivery. In-depth data on a cohort of 76 service users defined as having complex mental health needs were collected using a proforma intended to extract information about demographics, early life, diagnoses, medication, ongoing support and criminal convictions. Although it was not our initial aim to focus upon childhood trauma, the prevalence of adverse childhood experiences described within the service user files gained our attention. We discovered that almost half of our cohort reported more than one adverse event in their childhood or teenage years, with 11 reporting a high level of trauma exposure. The most frequently reported experience was parental separation (n=24), with sexual abuse (n=17) and emotional abuse (n=14) also common within this cohort.

But what also stood out was the extent to which we had to search in order to acquire this information; it was often hidden within pages of mental health assessments. In the instance that childhood trauma or adversity is recorded, it most frequently appears within mental health assessments focused upon early life experiences and familial relationships. It appears highly unlikely that a mental health professional would be awarded the time to sit and read through a service user's notes for hours at a time, thus rendering this information unusable and inaccessible. If adverse childhood experiences were prioritised during service user contact and brought to the forefront of service user records, they may not end up hidden in the system.

How does this impact research and practice?

Datasets with a focus on a cohort of service users may easily miss important data on negative early life experiences and, as a result, drastically underreport them. This could mean that early intervention for mental health difficulties in schools is not prioritised, despite the service users interviewed as part of our research discussing how early intervention may have prevented them from 'being arrested in a psychotic episode', 'avoiding repeated hospital admissions' and 'continuing to offend'.

The clinicians we spoke to as part of our research project highlighted that there can be high levels of staff turnover when working with individuals with complex mental health needs, often due to a lack of understanding about the origins of service user behaviour. Some of the clinicians we spoke to, whose roles varied from mental health nurse to psychiatrist, reported that their opinions of certain individuals had changed upon learning more about their history. For example, one clinician felt more able to understand the context of a service user's behaviour once they discovered they had been subjected to abuse as a child, and felt they had more patience when working with them in the future due to being able to understand their potential triggers.

Jackie Tait, Lived Experience Expert

'I'm inclined to think that mental distress is generally caused by awareness of existential threat, coupled with feelings of helplessness in the face of it. This switches us into survival mode, in which we are hypervigilant and social communication is impaired. This is completely counterproductive in terms of the actual survival needs of a member of our social species. It's a vicious cycle that is difficult to break.

Childhood trauma is psychologically powerful because it happened at a time when you were completely helpless to control events. It is easy to feel exactly like that again, even as an adult with some measure of agency… the traumatic memories are intense and dislocated from normal narrative memory, so it feels present, like you are experiencing this now.

Also, of course, vulnerability is not a uniquely childhood experience. Adults living with SMI, disabilities, unemployment, social disadvantage, discrimination, oppression and other adverse circumstances face barriers to achieving what our society understands as full 'adult' autonomy. Hence we are very prone to acute awareness of real, present vulnerability and feelings of helplessness. The temptation to suicidal despair can be overwhelming.'

• Laura Sambrook (Research Assistant, Faculty of Health, Liverpool John Moores University), Hana Roks (Research Assistant, Faculty of Health, Liverpool John Moores University), Jackie Tait (Lived Experience Expert, Faculty of Health, Liverpool John Moores University), Rajan Nathan (Consultant Forensic Psychiatrist, Cheshire and Wirral Partnership NHS Foundation Trust) and Pooja Saini (Reader in Suicide and Self-Harm Research, Faculty of Health, Liverpool John Moores University).

'First, let's just listen to the patient'

Dr Rajan (Taj) Nathan and Dr Pooja Saini in conversation.

Taj: The way I understand adverse childhood experiences in my practice, or in research, is the child constantly trying to adapt to things that are thrown at it. In many cases, that adaptation allows the child to survive the experience at the time, but then leaves them with future problems.

One adaptation I think explains, to some degree, the link between childhood adversity and future self-harm, is the child trying to separate what's going on in their mind from their thinking, and also what's going on in other people's minds. Other people's minds are threatening. You survive, but you become prone to dissociation. And then in the face of stress, you dissociate, which is an unpleasant experience later in life. And one way of responding to dissociation is self-harm, cutting. You can see how the mechanism for the self-harm started out as an adaptation to the trauma. Clinically, that's what we need to think about – not just an association between childhood adverse experiences and adult mental health problems, but the reason.

Pooja: So, for young people who might have been exposed to interpersonal violence in the home, they might then adapt those behaviours in their own relationships. I know there's preventative work going on, to help people recognise that they were exposed to that, and the chance they are going to repeat behaviours.

Taj: In my doctorate, one of the things that came up was a very specific relationship between exposure to inter-parental violence in childhood and perpetration of domestic violence in adulthood. When you speak to the individual, it's almost as if 'well, this is a means of resolving conflict'. It's not always conscious, but we all have a menu of things that are readily available to us to deal with difficulties. If this person has seen adults resolve conflict by violence, then that's on their menu. It's an adaptation if it resolves the conflict, eventually, but in an extremely maladaptive way.

Pooja: I think for many young people who are classed as bullies in school life, it might come out about their home situation… they're in quite volatile families, and potentially they're being bullied themselves.

Taj: They need to express their agency, and they express their agency by dominating people, which is experienced by the victims of bullying in school.

Pooja: Some of the staff that we've spoken to have said that if they knew about some of these people's backgrounds, maybe they would behave differently. It's that understanding, isn't it, of why somebody might be behaving like that on a ward… why they may be so suspicious of other people, or if someone says something to them in a certain way, it triggers them.

When we looked at the case notes, it was notable how much of the criminal behaviour was actually in the hospital.

Taj: Yes, there's the service user on the ward, and they react to a particular trigger or comment… they're more liable to attribute hostile intent to what someone said. A question might be taken as an accusation. And we have to accept that sometimes professionals do that: they'll fail, display their anger. That just inflames the situation. And then there is sometimes an outburst and sometimes that crosses over into criminality. So one of the issues for staff is not just understanding that the adverse childhood experiences may be relevant – clearly they will be relevant. But how? If we can encourage staff to think, 'well, this may be a misattribution of intent, because their experience during their childhood was to be accused or to be threatened and now it's safer to assume the world is a threatening place'. So, what's the best response, because we're all humans? You don't want to just become passive or disconnected. Staff need to still engage, but not inflame.

Pooja: The way some staff may see it, they're not therapists… they're there to manage people who are on a ward. When we interviewed staff, something that came back was on some wards, staff seem to have more time allocated, to actually read about somebody, to understand about any adverse childhood experiences, and then maybe go into how they'd manage them or treat them differently. Other wards are maybe a lot busier, a lot bigger turnover, a lot more serious, you know, cases where they've not had time. There's too much pressure on the ward to read that stuff. And then there might just be an accumulation of bad events.

Taj: In an ideal world, we recognise that this is when a person is at their most vulnerable, and certainly need the most support – not just a roof over their head and meals, but emotional support. Time is key… we've got all those interactions; I call them micro-opportunities for micro-intervention. You've got a formal psychological intervention, which may happen in fixed weekly sessions. But all those interactions on the ward, they all have the potential to either exacerbate the problem, if the member of staff becomes angry in response to something, or to actually improve… not to have therapy, but to have a therapeutic potential.

Pooja: A lot of presentations I've been to recently have talked about bringing back compassionate care. But it's easier said than done in the pressured situation.

Within the NHS, one thing we have found is that adverse childhood events are not routinely recorded on somebody's notes. We looked at a cohort where 90 percent had adverse childhood events… a complex cohort, people who are managed for the long-term. Do you think it'd be an advantage, if there was something that was flagged up on a system for adverse childhood events?

Taj: My view is it definitely would be an advantage for childhood experiences to be routinely considered. Of course, there is a risk in notes on a whole load of areas, where the patient is turned into little bits of information. We can't forget that there is an individual in all this. In an ideal world, you would want a narrative account of the individual which would routinely include reference to childhood experiences, including childhood adversities. And then the sophistication of the electronic system is it would pick up key words. But I do have this issue with the way electronic records disaggregate an individual into little 'factoids'.

Pooja: I suppose it's having the time and skills to build a narrative. And then even if you do, having the right bits in the narrative, to give the whole picture. It is tricky.

Taj: We should have prompts. So, there's an expectation you will look at whether to include substance misuse, criminality, childhood experiences, including adversity. You start out by exploring what the issue is that the person is reporting, then explore the history of that issue. And then you go right back, and you start to understand the life from the beginning to the present day. Family members, childhood experiences, early development, the whole biopsychosocial approach is what you would expect any senior clinician to be able to do.

Pooja: Are we missing a lot, because it's not routinely collected? The significance of ACEs?

I keep hearing about trauma informed care… is that trying to move away from a traditional medical model, towards a recognition of psychological trauma?

Taj: I think that's part of it. But there's a caricature of psychiatrists as being obsessed with medication… the vast majority aren't.

I do think there's an over-prescription of psychiatric medication. That's partly understandable… it's a primary care. Psychiatrists feel under pressure, either from the service user, or from staff – and in my experience, sometimes from psychologists – to prescribe medication. We're trying to resist that, which is not the caricature. Over the years, I've become more aware that medication has a very limited role.

Another caricature is that psychiatry has come along with a diagnostic framework and squeezed the patient's account into that diagnostic framework. But psychologists often come with a therapeutic model framework, and I have seen them try and squeeze the patient's account into that framework, and it doesn't quite work. I'm a great believer in phenomenological psychiatry – maybe the models have some utility, but first, let's just listen to the patient.

It's so powerful when you hear the experience, the adversities. Perhaps they don't use the word 'dissociate', they say, 'I can feel my mind separating from my body… it's a really unpleasant experience. And one way of bringing my mind back to my body is to cut myself'. And that started in the context of a severe trauma in childhood – it was an adaptation. The psychiatrist, I think, often ignores that process; the psychologist is at risk of finding the process and always applying it to the self-harm, assuming all self-harm is about dissociation where there's lots of mechanisms that may lead to self-harm.

Pooja: I've got the same tension doing work in schools now… it feels like we have to go in and test a model. We're making people fit into it. But not all kids are going to fit that model. Some would like an online CBT intervention, others need a chat with someone, others might need to literally be in a room with a psychologist. It needs to be person-centred, doesn't it? Some people might need antidepressants, to help them then get into the right mindset to recover. 

Taj: I wonder if 'person-centered' is used so much that it has lost its meaning. But you're right. Don't start with the model, start with a person, and then the model may help you. Otherwise, it becomes this sort of industrialised approach… there's a broader point there about the way that society functions, the way we're living now. There's a mismatch between that and our minds.

In my practice, forensic psychiatry, we have to tread that difficult line between conveying that there are types of behaviour that are unacceptable, but equally understanding why that behaviour may occur. In part it comes from the DBT model, that notion of validation. It's completely reasonable to say, 'I don't agree with that behaviour, that display, but I totally understand what's behind it'…  but it's quite a tricky stance to hold because you're saying that behaviour was wrong, but you're being careful not to invalidate the emotion.

It comes back to your point about being compassionate. Validating goes along with being compassionate. It's being inquisitive in a compassionate way.

Coming back to the therapeutic opportunities on a ward, micro-therapeutic opportunities. Staff should have more time, but also more supervision by therapists. We're not saying, 'do therapy'. But here's something that we know from therapy – can that be translated to 'in the moment?'