EMPOWER PATIENTS BY GIVING THEM THE OPPORTUNITY TO CHALLENGE WHAT IS WRITTEN ABOUT THEM. https://chng.it/4yzp6V9t

Everyday people enter a system (the NHS) that carries a secret veil across everything that happens to our bodies and minds. We cannot see our own hospital notes whilst being treated, when vital decisions are made about us. People have to fight to find things out and achieve clarity. Often what we are told doesn't match what is written and doctors will over simplify things with an assumption that we wouldn't understand. Often we tell a story of our symptoms and it never gets recorded in our notes when doing so would make a huge difference to our care. Hospital notes are one sided. We should have a right to see what is recorded and the instant right to record where we disagree or want more information considered.

In June 2022 my son died needlessly at age 22 because of cultural biases and age prejudices that meant his hospital notes sent subsequent teams in the wrong direction regarding his care over a period of two weeks. Read our story Here:  He should still be alive today

Our opinions, questions and experiences were never recorded despite them all pointing to heart failure. Seven years earlier I had experienced the same battles around my brother's mental health care. He took his own life because we weren't listened to at the hospital and we were unaware that his condition was trivialised in the notes.

Gone are the days when hospital notes stayed at the end of our beds. But access to our notes should be free and immediate. We own our bodies and we should have some ownership of the care we receive. We certainly should be heard and have our views recorded so that our wishes are considered.

I am campaigning to have instant access to hospital notes and the opportunity to contest them or add to them in our own written words alongside doctors notes. No more secret coding. No more veiling. Everything on the table. Patient ownership of their care.