"Because no one put a sticker on them."

Our medical records detail the most important events in life; birth, early development, illness, pregnancy—all the way to our final moments. Recent health policy promotes self management of long term conditions, so why is it still so challenging to access this vital information in a way that supports us as patients?

Growing up, my substantial paediatric cardiac medical notes were a source of mystery. At medical appointments, my consultant added his own scribbled observations to a growing file bursting at the seams with letters, results, and medical images, while my mum and I nervously waited. During frequent hospital stays this important folder lay at the bottom of my bed. While tempted, I knew not to touch it. A prompt for discussion during doctors’ rounds and for nurses to add their most recent observations, to me it was forbidden. More recently, medical information has become digitalized but during consultations the computer screen is angled so that I still can’t see what is being written about me.

Yet, following adversity, it is important to be able to make sense of what happened to us to heal and recover, especially when we face challenges beyond our control. Without this opportunity, we are more vulnerable to developing trauma related mental health problems.

Epistemic injustice describes injustice related to knowledge, coined by the philosopher Miranda Fricker (2009). Hermeneutical injustice, a type of epistemic injustice, occurs when someone’s experiences are not well understood by themselves or others. Leah Teresa Rosen (2021) notes that in healthcare this can occur through unjust ways of listening to patients, for example, by objectifying their lived experience, dismissing aspects of their “patient testimony” and not sharing information about their care; often as a result of the epistemic privilege of the healthcare providers. Rosen proposes that healthcare providers should be trained in “Narrative Humility”; a self-reflective approach that aims to challenge testimonial injustice and unconscious bias by maintaining an openness to each patient’s story.

Recently, I’ve been reflecting on this regarding my experience as the youngest baby in the world to be fitted with a cardiac pacemaker in 1978 and my dependence on lifelong pioneering cardiac care. My prognosis was uncertain, and I spent a lot of my childhood in the hospital where a world-leading cardiology team learned how to surgically fit, interrogate, and maintain each new development in pacemaker technology. This was during a time of rapid innovation in cardiology when pacemakers developed from fixed-rate, bulky “batteries” with temperamental leads to smaller, computerized, physiologically responsive pacemakers. It was also a time when understanding the importance of early parental attachment and the psychological impact of childhood pain, distress, and illness was limited. I am currently fitted with my 11th pacemaker and have experienced countless complications along the road.

In the hope of filling the gaps about my medical experiences, I submitted a request to access my pediatric medical records. I was astounded to learn all of the cardiology medical records detailing the first eighteen years of my care had been destroyed.

When I tried to establish why my medical history was destroyed, without my awareness or consent, I was sent around the houses. In Scotland, government guidance states that childhood medical records should be retained until the patient’s 25th birthday unless the illness could have potential relevance to adult conditions, in which case the advice of clinicians should be sought. Yet, the service that commissions congenital cardiac care in Scotland states that they do not have day-to-day input into direct patient care or clinical notes, while the local health board charged with my paediatric health records has concluded they were destroyed because they had not been marked with a “do not destroy” sticker. The Scottish Public Services Ombudsman (SPSO) signposted me to the Information Commissions Officer (ICO), the UK’s independent body set up to uphold information rights. My query still sits with them. No one appears to want to take responsibility or to consider the wider impact of this practice.

From a medical perspective, as one of the longest-living survivors in the world completely dependent on a cardiac pacemaker, this has left me in a vulnerable position. My care was a first, and my healthcare needs are lifelong. It is impossible to know which parts of my medical history may become relevant. On a personal level, I feel very sad that such a significant part of my childhood has been destroyed. I will never know how many cardiac procedures I have endured; how many hospital stays, the story behind some of my scars, or what happened to me. Like the child sitting in the hospital bed, my childhood medical notes and the opportunity to better understand my childhood experiences are now forever beyond my reach.

My research, practice, and advocacy as a Counselling Psychologist are motivated by a passion for improving the psychological well-being of people like myself living with a serious, lifelong medical condition. This work considers how healthcare providers can mitigate medical trauma by challenging disempowering aspects of patient care and by promoting psychologically informed healthcare. It seems ironic that in seeking to explore epistemic injustice through my own medical records, I have uncovered a greater act of hermeneutical injustice than even I anticipated: an act of injustice that clearly highlights the desperate need to reform patient access to our medical information.

This article was originally posted on Psychology Today on 18 December 2023.

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