The Patient Voice Was Invited Into the Room. Was It Heard?

Something has been bothering me since I spoke at a cardiology conference this summer.

The invitation felt significant. As both a psychologist and someone whose life has depended on cardiology since infancy, I was honoured to be part of a symposium alongside several highly respected professors. I arrived feeling optimistic.

For most of my life, congenital heart disease was viewed largely through a biomedical lens. Survival was the priority. While this has begun to change, I left the conference wondering how far we have really come.

Looking for the Patient

Walking through the exhibition hall, I was struck by the advances in technology and clinical care. Yet as the day went on, I found myself thinking less about conditions and treatments and more about the people living through them.

One interaction stayed with me. Hoping to discuss patient experience, I approached a heart charity's stand. Staff appeared busy filming promotional content for social media. Perhaps I arrived at the wrong moment, but it felt symbolic: considerable attention devoted to communicating about patients, less directed toward listening to them.

The exhibition hall was unexpectedly triggering. Surrounded by equipment and technology, I was transported back to the hospitals of my childhood and had to step outside to ground myself. Yet these were not simply memories from a distant past. As someone who still lives with congenital heart disease and depends on ongoing specialist care, the world I was walking through was also part of my present and future.

Although I attended as a psychologist and researcher, I was also there as a patient. I have experienced recent setbacks in my cardiac health and am currently off work while trialling one of the medications discussed during the symposium.

A Child on the Bed

The other presentations focused on highly technical aspects of cardiac care. I was discussing the psychological experience of living with congenital heart disease and a lifetime of medical intervention. I spent longer than usual on my own story because I wanted the audience to see healthcare through the eyes of a child receiving it.

As I spoke, several people left. They may have had other commitments, but the moment stayed with me because it echoed a question that had been growing throughout the day: What happens when discussion turns from disease to lived experience?

Later, I described childhood pacemaker checks: lying dizzy and breathless on a hospital bed while clinicians learned to use emerging technology, gripping my mother's hand and counting holes in ceiling tiles. A small ripple of laughter spread through the audience. I suspect people were responding to how much technology has changed. Yet I found myself wondering whether we had taken away the same story. I was describing what it felt like to be the child on the bed.

The final troubling moment came at the end of the session. Several speakers had overrun, and there was no time for questions after my presentation. Perhaps it was simply unfortunate timing, yet I could not ignore the symbolism. The one presentation focused on lived experience was the one that never became a conversation.

Perhaps part of what stayed with me was the contrast with psychology conferences, where lived experience often sits at the centre of discussion. These topics usually generate deep engagement and reflection. Their relative absence on this occasion left me wondering whether healthcare still finds it easier to engage with what can be measured and treated than with what it feels like to live through those experiences.

Back in the Patient Role

On the train home, I found myself thinking about the child I once was and the many children I had known on cardiac wards over the years—the ones lying in hospital beds while adults discussed conditions, procedures, and outcomes over their heads.

This is not a criticism of individual clinicians, many of whom are passionate advocates for psychologically informed care. Rather, it left me reflecting on a wider culture within healthcare. Even among deeply caring professionals, it can sometimes feel easier to discuss disease than lived experience.

I was also struck by how little attention was paid to the psychological well-being of healthcare professionals themselves. There was little discussion of burnout, compassion fatigue, vicarious trauma, or moral injury, despite these being well-recognised occupational risks.

Modern medicine has become remarkably effective at helping people survive. Understanding survival, however, is not the same as understanding what survival feels like.

The Emotional Cost of Speaking Up

The day also forced me to confront something I often overlook: the personal cost of repeatedly turning my own medical history into a teaching tool.

For years, I have shared my story in the hope of helping healthcare become more psychologically informed. Yet congenital heart disease is not a chapter of my life that ended in childhood. It is a lifelong condition that continues to shape my health, identity, and future. As someone who still depends on specialist cardiac care, I am never speaking solely about the past.

Looking after my own mental health is not separate from that work. It is what allows me to continue doing it.

Psychologically Informed Healthcare: How Far Have We Really Come?

As someone who has lived with congenital heart disease my entire life, I know how much has changed. When I was a child, survival was often the only conversation. Today, we know far more about the psychological realities of living with lifelong conditions and the importance of supporting patients, families, and healthcare professionals.

The evidence is there, yet psychologically informed care can still feel confined to a dedicated session or token talk rather than something embedded throughout healthcare. Patient experience should not be an optional addition to discussions of treatment and outcomes. It should help shape them.

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