Wednesday, November 20, 2019

Letter to UC Davis part 2


Hello and welcome back to continuing coverage of "patient is tired of the BS and tells her story as vengeance". In today's episode I will tie up loose ends and close the book on this chapter, so we can move on to better things. Less rage more rest for the end the year. 

So a few days after my last post where I shared the full letter I sent to UC Davis about the terrible doctor I saw there for a year and a half, I received the final letter from patient relations saying their "investigation" into my concerns was complete. 

The letter is actually pretty unsatisfying. They explain "personnel actions are afforded the same rights of confidentiality extended to our patients", meaning they cannot disclose what was discussed or what changed related to the issues I addressed in my letter. They did give me a list of departments that were involved, including the specific doctor. This means many people were involved and read my words. This was one of my goals. I sent a copy of the letter to different departments, not just patient relations. I tried to send it to the CEO, but I couldn't find a targeted address. 

Despite how unsatisfying the letter is, in the final paragraph they state "while we cannot change the experience you had, I hope you can take comfort in knowing this feedback will allow us to improve the care we provide to future patients." In the end,  that's all I wanted. I did not write this letter for just myself. It was for the patients who contacted me, all the people I shared that waiting room with for countless hours, for all the patients who hold back tears and anxiety as they seek a better quality of life.  That letter and everything I write here and on social media is for all of us. 

I won't share this doctor's name publicly. That's bad form. But you can contact me privately. I've already talked to another patient with a severe case of Myasthenia Gravis and encouraged her not to see this doctor. I was genuinely concerned for her welfare. 

For most of this year, I've done everything I could I scrub this doctor from my medical history the best I can. I've even had to ask doctors at my local hospital where I've spent too much time this year not to contact UC Davis. I try to only mention my time there in passing when I have to recount my recent medical history.

This recent article discusses that when it comes to female patients "doctors fill in knowledge gaps with hysteria narratives". I discovered inadvertently what this doctor had been writing about me when my primary doctor handed me a copy of his medical notes. If this hadn't happened, I never would've known this doctor was telling me one thing to my face while filling my medical record with an "hysteria narrative" at the same time.

If you are wondering, this doctor used to the word "psychosomatic" broadly but also specifically to refer to my severe mobility issues. As if I woke up one morning and decided "you know what would be fun? To be in a wheelchair all the time. That would be a good adventure for my mid 30s." My mobility problems began and progressed over several years. It didn't happen over night. I try to remember comments in our medical notes aren't personal no matter how difficult it is to not take them personally. 

However, his particular comment was a cop out. It was an excuse to blame me for his lack of effort and investment in my case.

Just because these symptoms cannot be explained succinctly doesn't make them imaginary. It's indescribable the frustration of being so sick and not knowing why, trying desperately to cling to hope in a raging storm, only to be dismissed and accused of fabricating it all. Gender bias in medicine has real, devastating effects.

Patients are human beings. We deserve to be believed and afforded some basic dignity.

But it's done.

I regret the time, money, energy we wasted, but I still learned something from this experience. I may need to be hospitalized at the UC Davis hospital in the future. I will know I'm in good hands there, but I'll make sure they know I want nothing to do with that particular doctor.

I've been doing this too long to accept dismissal anymore. Time is too short, my health too fragile.

So hear me, treat me with dignity, or get out of the way.





3 comments:

  1. Good work! I love how you sent your letter to multiple departments. Sometimes, if we cannot find the right email, there is the option to hand-deliver as well, either directly to a department head or via the hospital mail room so it gets 'processed'. Sometimes hand delivery can be lucky if you get to meet the decision makers personally as it allows them to connect with your humanity.

    Who knows, maybe the clinic had received verbal feedback or hearsay about that dr but needed something in writing to back it up in order to take action. I'm sorry you have suffered so much and continue to live with the legacy of false records. As if your exacerbations weren't enough to contend with.

    May you have better progress and peace of mind in the coming year now that you can be relieved of one stress, knowing that your current clinicians are supportive.

    ReplyDelete
  2. I regret the time, money, energy we wasted, but I still learned something from this experience. I may need to be hospitalized at the UC Davis hospital in the future.

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