One crucial aspect of the immersive training experiences we develop at A Life in a Day, is that they really are a life in a day, not a day in the life. Through our programmes, participants don’t just live 24 hours in the life of a patient, but experience emotional journeys that can be years long. By jumping across time through the patient’s story, in just one day we can cover multiple stages of a disease or chronic illness, from diagnosis through to remission, relapse, or cure.
Part of how we integrate the programme into a regular working day is by condensing patient experiences, which in reality could last hours, into challenges that take just a few short minutes to complete. By breathing in and out through a paper straw, for example, participants will feel temporarily short of breath. However, they will immediately be able to understand and empathise with the toll it will take for patients to live with this symptom for an extended period of time.
We rarely present experiences in real time, as we simply do not need to do so to create the necessary emotional impact. Until sickle cell disease.
People living with sickle cell experience acute episodes of excruciating pain known as sickle cell crisis. This happens because their red blood cells from a sickle or ‘crescent moon’ shape, blocking blood vessels and depriving tissues of oxygen. These crises may ‘only’ last a few hours, our could persist for days or even weeks. Some people living with the condition also experience daily chronic pain between crises, while others may be pain-free in their day-to-day life.
Although many patients will choose to manage a milder sickle cell crisis at home, these episodes often require hospital admission. Not only can the pain become too severe to manage at home, but complications like organ damage can arise quickly and require prompt treatment.
Guidelines from the UK National Institute for Health and Care Excellence (NICE) state that “all people presenting with an acute painful sickle cell episode should be offered analgesia within 30 minutes of presentation in secondary care.”
However, when developing the sickle cell experience at A Life in a Day, we found this was far from the reality of patients living with the disease. They described being left in agony for hours in the emergency room, having their pain minimised, disbelieved, or deprioritised. One patient shared an experience with us where her sickle cell crisis was dismissed as a panic attack, even as her oxygen levels tanked. Another told us about presenting at a hospital where staff didn’t seem to have heard of sickle cell disease at all, dismissing his pain and leaving him “for dead” on the hospital floor for hours after he lost consciousness.
Experiences like these are sadly well-documented among the sickle cell community, and they happen for several interconnected reasons. These include racial bias and stigma (sickle cell disease primarily affects people of African and Caribbean descent), the misconception that sickle cell patients are drug-seeking when they request the strong opioid painkillers that they need, and a lack of awareness and training around the condition, particularly in areas where the disease is not common.
It soon became clear that this drawn out wait for emergency care was something crucial to the story of sickle cell, and not something we could condense down into a five-minute challenge. In this incidence, the passing of time was something participants needed to experience for real.
As such, we decided to deviate from our usual approach. Instead of just one challenge sequence encapsulating a sickle cell crisis, participants in this programme will go through the onset of a sickle cell crisis and the resulting hospital admission in real time. Hours will pass between challenges, as the participants languish in A&E waiting to receive pain relief, forced to repeatedly advocate for themselves until they finally receive the care that they need.
By incorporating real-time progression into this programme, we aim to more accurately reflect the clinical and systemic challenges faced by people living with sickle cell disease. Experiencing the extended wait for pain relief first-hand enables participants to understand the emotional exhaustion of being disbelieved and dismissed, the anxiety of awaiting treatment, and the fear of serious complications resulting from delayed care.
Our aim is that, by the end of the experience, participants move beyond an intellectual understanding of sickle cell disease to develop genuine empathy for patients’ lived experiences. Bringing a sickle cell crisis to life in real time is just one way we’re aiming to drive meaningful change in how pharmaceutical and healthcare professionals perceive, prioritise, and respond to people living with sickle cell through this project.
