“My precious son Johnny died because doctors didn't take our concerns seriously.”
Johnny Alfrey was a kind, talented 22-year-old musician who loved making everyone around him laugh. But over two agonising weeks, his life was tragically cut short due to misdiagnosed heart failure.
During five initial hospital visits, Johnny's symptoms were dismissed as 'anxiety', despite alarming blood and ECG results that went unreviewed. Worse — unchallenged, prejudiced notes were being recorded.
“They were writing down things in his notes that we were denying were the case, such as him starving himself or binge drinking. We were not shown his notes at the time, so I didn't have this information to challenge.”
These crucial notes containing hurtful, incorrect assumptions blinded doctors to the true escalating crisis.
This devastating failure to listen turned a family’s life upside down, revealing a systemic lack of transparency and a desperate need to value the patient's and family’s voice.
Johnny's mother Julie recounts his last few weeks: “I will never get the images of my poor boy dying and pleading for help out of my head. The prejudice and one-sidedness has to stop.”
She is now fighting for change, urging patients to take ownership of their care as much as they can, and to be heard.
"Write everything down, take pictures, and ask for printouts of results. Do your research and take ownership of your care as much as you can. Use Martha’s Rule. You are entitled to be involved in your care and only you are the expert on how you feel."
Julie is advocating for 100% transparency and better listening in healthcare, sending the message to those in charge to leave behind prejudices.
Assumptions cost lives.
When medical harm strikes, the devastation is absolute. Every patient deserves to be listened to, and no one should have to face the aftermath of medical harm alone.
This Christmas, you can ensure no one faces avoidable medical harm alone. Your donation of £7 a month could help families like Johnny's find the support and advice they need — when it matters most.
