Medical Gaslighting Results in Death of Professor and Rare Disease Expert

A look at the death of Prof Amit Patel and the very real problem of medical gaslighting, neglect, discrimination and dismissal.

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.

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. 

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. 

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.

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. 

There are many excellent HCWs who go to the ends of the earth for their patients - but it only takes one who is uneducated in the disease and refuses to listen to do untold amounts of harm. 

I’ve had a number of dangerous complications that could have been completely avoided had the staff listened to me and believed that I knew my disease and body best. It’s a terrifying thing to be in such a vulnerable state & have your concerns ignored. 

I’m slowly working up the strength to write about them - but they leave an indelible mark of trauma on you. Hospitals are meant to be places you go to get better - when they make you worse because they refuse to listen to you or consider your lived experience? It can take years to process that trauma and find the courage to speak out.

The Covid pandemic adds an extra layer of complexity to this issue - as many high risk patients have been labelled as ‘anxious’ for requesting HCW providers mask. Some have even been stripped of their agency & placed on psych holds just for trying to protect themselves. 

They may get labelled as anxious, difficult, hysterical etc… but ask yourself what you would do in their shoes? Are they really expected to be silent and allow themselves to be treated in a way that could cause material harm? Just so that they don’t challenge someone’s ego? 

Of course not - and yet that is often the decision many patients are faced with. Speak up and get labelled as a problematic patient - or stay silent and risk serious potential harm. 

It’s a cruel and unfair choice and one of the reasons MANY high risk patients refuse to go to the hospital until they’re literally knocking on death’s door. They aren’t being stubborn or difficult - they’ve likely been harmed in the past and are terrified it’ll happen again. 

Before you judge them for being afraid to access healthcare - consider the case of Prof Patel. A man who was a doctor himself, an expert in his condition and who had a spouse who was also a doctor advocating on his behalf. 

He had all these things going for him - and he still ended up dead. His expertise ignored and his agency taken away. Because the doctors wanted “control” and thought they knew better. 

Now imagine how hard it must be for a marginalized patient who is on their own with no advocate. That is the reality for far too many of us. We desperately need allies to help us make hospitals safer for everyone. 

We need people to CARE and to recognize that what happened to Prof Patel is not nearly as rare as we would like to believe. Don’t look away from stories like this because they’re uncomfortable - listen to us and help us fight for change. 

To all the wonderful doctors and HCWs who listen and advocate for their patients - THANK YOU. You have no idea how much it means to us when we get care from someone who understands us. You can help us overcome so many traumatic experiences & we are incredibly grateful. 

The same thank you is owed to all HCWs who are masking for their patients. We see and appreciate you. Thank you for not making us beg, not psychologizing us and for seeing that our lives have value and we are deserving of protection. 

My heart is very heavy tonight. For Dr Patel’s family and for all the people around the world who’ve lost loved ones to medical errors & ignorance. For the family of Katie Doyle - a 27 year old woman dismissed with ‘anxiety’ who later died of a massive pulmonary embolism. For Millie McAinsh who has severe ME/CFS and is fighting for her life with doctors who don’t believe her or know how to treat her. For the 56 year old man with Down’s Syndrome who died after hospital staff ‘mismanaged’ his nutrition and left him for nine days without food. For all of us who’ve experienced medical trauma and continue to experience it today. And for everyone who commented on my X thread about Prof Patel’s death with personal stories of medical mistakes and neglect. People shared such personal accounts with me and I’m truly touched by the bravery of every single one of them.

Remember you are not alone. There’s an incredible community of people online who’ve been where you are & will help support you through difficult hospitalizations. Who will help you advocate for yourself or find someone to advocate for you. 

Look for those people. Find and connect with others who’ve felt the kind of trauma and helplessness that comes from having your agency & control taken away. We will listen & support you. 

If you’re temporarily abled and have not had these experiences - please be willing to listen to those of us who have. Be an ally & help us change the system. Wear a mask in solidarity to show you care about those you share the air with. 

Above all else - be gentle with yourselves & others. The world is hurting right now. Stories like this only add to that hurt. Remember that together we can be a strong voice for change. Listening with care & compassion can heal a lot of hurt. We need it now more than ever.

You can read more about the life & death of Prof Amit Patel in this article from The Manchester Evening News.