In this blog I look at what Trauma Informed Care is, and how I would personally like it to look for me as a persistent pain patient who has experienced early trauma.
I have divided this blog into the following sections:
- Childhood Adverse Experiences
- Childhood Adverse Experience (ACE) scores
- What is trauma?
- Trauma symptoms
- What is trauma informed care?
- The five guiding principles of trauma informed care
- The 4 R’s of Trauma Informed Care
- Trauma informed care resources
- Trauma informed care and MY persistent pain healthcare
- The trauma informed healthcare I would like for me
The blog is not intended to teach grandma to suck eggs, and only forms an introduction to Trauma Informed Care, but it is written from the perspective of a person living with persistent pain who has also experienced trauma so my personal perspectives may be useful for some. It ends with my thoughts on what I would like trauma informed care look like for me.
Childhood Adverse Experiences (ACEs)
YoungMinds estimate that around half of all adults living in England have experienced at least one form of adversity in their childhood or adolescence. They describe Adverse Childhood Experiences (ACEs) as being ‘highly stressful, and potentially traumatic, events or situations that occur during childhood and/or adolescence’. It is important to note that not all ACEs result in trauma. There are many childhood experiences that are considered to be adverse, and according to YoungMinds these include:
- Maltreatment (ie abuse or neglect)
- Violence & coercion (ie domestic abuse, gang membership, being a victim of crime)
- Adjustment (ie migration, asylum or ending relationships)
- Prejudice (ie LGBT+ prejudice, sexism, racism or disablism)
- Household or family adversity (ie substance misuse, intergenerational trauma, destitution, or deprivation)
- Inhumane treatment (ie torture, forced imprisonment or institutionalisation)
- Adult responsibilities (ie being a young carer or involved in child labour)
- Bereavement and survivorship (ie traumatic deaths, or surviving an illness or accident)
Childhood Adverse Experience (ACE) scores
It is quite common for people to talk about ‘ACE scores’. I’m not a fan of ACE scores as they don’t give any idea of the quality of the experience that a young person had, the length of time it was endured for, or what the impact on that young person was, including whether it would likely have been considered a traumatic experience for that particular individual in their particular circumstances or not. ACE scoring also only considers the most 10 common types of childhood adverse experiences, but of course many of us have experienced other types.
ACE scoring considers five personal adversities (physical abuse, verbal abuse, sexual abuse, physical neglect, and emotional neglect) and five related to other family members (a parent who’s an alcoholic, a mother who’s a victim of domestic violence, a family member in jail, a family member diagnosed with a mental illness, and the disappearance of a parent through divorce, death or abandonment).
Each type of adversity counts as one, so someone who experienced physical abuse, whose parent was an alcoholic and who witnessed domestic violence would have an ACE score of 3.
I personally think the ACE scoring is too blunt an instrument. It doesn’t distinguish between childhood adversity and childhood trauma, which are different, and to me really only provides an indication that adverse experiences have occurred in childhood, which they do for around half the UK population anyway. There is no narrative involved. It also relies on the person being willing to disclose their experiences on a questionnaire, which I personally probably wouldn’t do on an ACE questionnaire.
ACE scoring is used widely, and so it is clearly considered to have merit, but in a clinical environment if my childhood adverse experiences were directly related to the reason I was seeing my clinician, then I would wish for my narrative to be listened to within the bounds of a good therapeutic relationship. I personally don’t want to be ‘labelled’ with an ACE score that does not provide the narrative behind the scores.
What is trauma?
From a clinical perspective trauma could be defined as ‘a combination of a terrible event or series of events that involve real or perceived threats of death or serious injury, or threat to the physical integrity of the person or others, and from which that person experiences overwhelming fear, hopelessness, helplessness, or horror’ (taken from HERE ).
This is a much higher threshold than having experienced adverse childhood experiences, not all ACEs lead to trauma.
From a survivor perspective I would place greater emphasis not on the actual events, and how others might perceive they could affect me, but on how they actually did affect me.
Mind, who are a leading mental health charity in the UK, have published a helpful article explaining the many aspects of Trauma, which you can access by clicking HERE.
Typically people may react with shock and denial to a traumatic event. Over time, these emotional responses may fade, but a survivor may also experience other reactions long-term. These can include:
- Unpredictable emotions
- Persistent feelings of sadness and despair
- Intense feelings of guilt, as if they are somehow responsible for the event
- An altered sense of shame
- Feelings of isolation and hopelessness
- Physical symptoms, such as headaches and other pain.
What is trauma informed care?
Trauma informed care has developed gradually over the last nearly 40 years. It is utilised in many arenas, including mental health, child welfare systems, schools, criminal justice, social work and clinical work.
The basic principles of trauma informed care are simple. It is fundamentally about professionals having a sufficient understanding of trauma and how it might impact on a person, including how it might affect their health, education and social circumstances.
I would strongly suggest that all healthcare, education, social care, criminal justice professionals should be trauma informed, and that all care or education provided to anyone (whether they disclose ACEs, trauma or otherwise) should be delivered in a trauma informed way.
Trauma informed care is an approach that assumes that an individual is more likely than not to have a history of trauma. It does not rely on disclosure and constitutes good practice for all healthcare.
Trauma-informed care is not trauma-specific care. It does not propose to heal the trauma nor even to address it directly. Professionals do not need to be trauma specialists.
The five guiding principles of trauma informed care
In order to provide a framework for trauma-informed care, five guiding principles have been developed.
These five principles are safety, choice, collaboration, trustworthiness and empowerment.
It is evidently important to ensure that a patient in any part of the healthcare system feels both physically and emotionally safe in the clinical environment, and that they know that their clinician is trustworthy. For example, professional boundaries need to be clear and maintained. In terms of choice, the more choice a person can be given the better. This will provide them with control over their experiences and help them avoid any triggers and negative experiences. Providing choice will empower people, as will involving them collaboratively.
As a person who has experienced previous trauma, empowerment is hugely important to me. This includes a focus being provided on my strengths, including the positive aspects of having experienced trauma (for example resilience, determination, motivation and willpower). It also includes further developing my understanding and coping skills.
The 4 R's of Trauma Informed Care
In order to support and guide both professionals and society, the Substance Abuse and Mental Health Services Administration created the 4 R’s as a helpful way to think about trauma informed care.
Professionals and organisations are trauma informed if they:
- Realise the impact of trauma, and understand how it affects families, groups, communities and the individual.
- Recognise the signs and symptoms of trauma in the individual, family members, staff and others involved with the system.
- Respond by integrating the principles and knowledge of trauma into policies, procedures and practices.
- Resist re-traumatizing the individual.
Trauma informed care resources
These are some links to resources about trauma and trauma informed care
Trauma informed care and MY persistent pain healthcare
In terms of my own persistent pain healthcare, I would want all my clinicians (not just those in pain clinics) to have undertaken specific training in terms of what trauma is, the potential impacts of trauma on a person, and how this can apply to a clinical setting, and for them to have read relevant research on trauma and how it might affect me as a patient, and my persistent pain. I would hope that is the case for all clinicians anyway, but I suspect there is the need for further, perhaps more detailed, trauma training.
With sufficient understanding of trauma, I believe my clinicians could take steps to avoid, or at least minimise, inadvertently causing me increased stress or re-traumatisation and support me to understand how past trauma may play a part in my persistent pain condition. Most importantly I would hope my clinicians would value and promote my resilience and enhance my well-being.
For me it is important that I am treated in a trauma informed way, without needing to disclose any past trauma. If I wish to disclose my past trauma then I would want to do this in the bounds of a good therapeutic alliance. I would want my narrative to be listened to.
The trauma informed healthcare I would like for me
I strongly believe that all my clinical care should be undertaken through a trauma-informed lens. Indeed, I believe that all social care, education and care within the criminal justice system should too.
I would like:
- For all of my healthcare to be individualised, person-centred and evidence based
- For all my clinicians to be trained in understanding trauma and how it affects an individual, including the impact on persistent pain
- To be treated in a trauma-informed way irrespective of whether I choose to disclose early trauma or not
- To have equality of opportunity to healthcare, and not to feel stigmatised or pre-judged
- Not to be expected to disclose any trauma I have experienced, the choice to do so being purely mine
- To experience good therapeutic relationships with clinicians, who listen to my narrative and empower me to be an equal partner in my care
- To be treated in a safe, secure environment in which I am provided choice
- For the positive aspects of experiencing trauma, for example gaining an increased resilience and understanding, to be valued and promoted
Perhaps most of all, I want good, person-centred, evidence based healthcare which does me no harm.