The death of Prof Amit Patel in the UK highlights a frightening problem in medicine. One that disabled and marginalized individuals have been screaming about for years. Doctors don’t always listen to the patient - sometimes with catastrophic consequences. 🧵 /1

Prof Patel had an incredibly rare condition - and he and his wife were both doctors. They understood how to manage his care and tried to direct hospital staff away from procedures or treatments that could prove dangerous or fatal. /2

Unfortunately it was determined that the staff had to “take back control” and a procedure was performed on Prof Patel while he was sedated and unable to object. The complications from this procedure killed him. /3

In an article detailing his death & the mismanagement of his case - his wife was quoted saying “He kept himself alive on the wards because he was a doctor. If he was just Joe Bloggs he would have been dead within three days of being admitted.”

Most people reading his story will likely assume this is a rare exception - when the sad reality is the only exception is the fact that he and his wife were both doctors. That’s what makes this story unique. We assume doctors would be able to get other doctors to listen /5

What isn’t unique is the experience of having a rare disease or chronic illness and having medical staff not listen to you. Many disabled individuals feel unsafe in the hospital because they’re giving up control of their bodies - and their needs aren’t always respected. /6