Patient Advocacy

When we have a legal issue we hire a lawyer to represent us, for financial matters we have wealth managers to manage our money health but how do we go about managing our health? Who is your Health Manager?

Healthcare today is complex and very often we don’t have medical intelligence required to help us take decisions. These decisions are sometimes life and death decisions and we are expected to make them while we may not be equipped to take them.

Patient Advocate is your representative in this complex health network. Their interest lies with you and not with hospital, doctor or a pharma company. They protect you from medical negligence and they help you understand and weigh all your options. Today companies like Texas Medical Concierge are redefining Patient Advocacy. They are your consultants for all your health and wellness issues.

Five Reasons why you need a Patient advocate

1. To take an Objective Decision – When dealing with a complex medical condition we are emotionally overwhelmed, and physically exhausted. This impacts our decision making and often we are emotional and lose objectivity.
2. To take a Medically Intelligent Decision – If data about your options is presented to you just like the way you study business data, won’t it help you take an informed decision?
3. To have someone ease the pain – having a patient advocate who understand your needs at a time when your world is falling apart is invaluable.
4. To have someone you trust – We know that medical negligence and commercialization are issues that impact each one of us or someone we love. To have some whose interests lie with you and not the hospital, doctor or pharma company can provide you with peace of mind.
5. To take away the administrative hassles – healthcare navigation can be quite complicated and often we get bogged down with the discomfort of standing outside doctor offices, seeking second opinions by uploading or downloading, printing documents. Researching like crazy on Google or reaching out to friends and family. So, having a personal health manager managing it all for you is priceless.

MY STORY

Here is why I became a patient advocate and why I started the world’s first global patient advocacy firm.

It was the year 2008, around the day when Taj in Mumbai was bombed by Kasab and his militant gang, that our lives in Delhi changed forever.

My father-in-law seemed to be a bit unusual at home. Because he has a history of diabetes, Bp, cardiac disease etc we didn’t take things lightly and rushed him to a hospital, which was closeby and was amongst the best hospitals in town. However, when they told us that they can’t see anything wrong with him in the CT scan and blood reports we decided to call a private ambulance and shift him to another top hospital in New Delhi where his treating neurosurgeon was. The neurosurgeon was somebody we trusted he was the doctor to the presidents and a Padam Shree awardee, one of the highest awards for offering service in India.

Moreover, he was the only Neurosurgeon who correctly diagnosed my father In law’s condition when for 2 years he was treated by orthopedics endocrinologists and neurologists in the absence of a diagnosis.

Papa had fluid that would build up in his brain so a shunt resolved the problem. We feared the shunt in his brain might be getting blocked. That fateful night we reached the other hospital at night so his treating surgeon was not there so we were attended to by junior doctors on duty. We were assured all is well as Papa ate dinner and seemed better to us. But, he was not he was in a pre-ictal phase the signs he displayed were because he was going to get a stroke. He did have a stroke early next morning and while trying to treat him his kidneys started failing and he suffered a heart attack and the situation got critical. Papa went into a coma from which he never returned.

My husband is the only child so saving his father was my mission, getting him back from coma was the only goal in my sight. We left no stone unturned, created an icu at home had bedside pile surgeries, X-rays, a round the clock medical team attending to him. I started training in nursing skills like changing the Tracheostomy tube and conducting suction but all in vain.

Through this harrowing experience the worst was we were thrown into a situation where I had to please a bunch on Dr egos, there was an entire entourage of specialists at the hospital plus 3 family doctors. Everyone was working in silos. Little did we realize that they were not a team. Little did I realize that I was the ringleader of this circus constantly looking for information on the Internet and through other sources. Little did I know how the hospitals money making Machinery work or how all his infections there after we’re hospital acquired.

Even though we thought we had the best doctors in the country we wanted a global second opinion. We had asked a relative to show our reports to a doctor in Norway and Cleveland Clinic. Not knowing who to consult we were at the mercy of their friends who were not necessarily the best doctors in the world for Normal Pressure Hydrocephalus. We were helpless and powerless inspite of having all the resources.

We eventually lost Papa on May 13th 2009.

Fortunately, I am now in a position to share my learnings and provide professional assistance to others in a similar situation.