Tuesday, December 01, 2009

Kafkaesque Bureaucratic Nightmare

My life already feels like a bad dream. Today, trying to get the care I need, in the manner I need it made me feel like I must be a character in a Kafka novel.

My province's (BC) Mental Healthcare system's rigid and top down dictatorial, rule bound, and unsympathetic, inflexible bureaucracy seems to forget that people with mental illnesses require "patient's needs focused care" (rather than bureaucracy-needs focused care), just like patients with physical illnesses. Right now I am frustrated, angry, even more depressed. I had an appointment with Dr. X. today, because I want a referral to receive ECT as an outpatient. He contacted the ECT coordinator at the hospital, and they said I had to have someone with me for 24 hours after each treatment. Period.

It didn't matter that last time I had ECT I was fine and able to care for myself a few hours after the procedure. My only option if no one was available 24hrs/day, three days a week, was to go in as an inpatient.

I felt really annoyed and angry about this, thought it was ridiculous and one of those irritatingly bureaucratic rules where people forget that patients have varying needs, and flexibility would go a long way towards helping patients get there needs met. Patients getting their needs met is what a hospital is supposed to be about...isn't it? The next thing that happened showed me just how unpatient focused BC's Mental Health system can be. I have no idea how people who are even more ill than me get the help they need.

So...Dr. X. and I discussed my going in as an inpatient. I asked him what he would recommend for me, knowing how I am feeling, and he thought going in as an inpatient would be the best thing. Despite really not wanting to be an psychiatric inpatient...for lots of reasons: loss of autonomy, stigma, scrutiny, potentially getting a misdiagnosis in my file, because a new doctor sees something in the 20 minutes they see me, that my careful, diligent, and intelligent psychiatrist has not seen in my nine years of treatment, loss of freedom, being away from my dog, having to share a room with someone I don't know, phobia of getting bedbugs or lice from a public bed, etc. The reasons are many and and varied, and each of them really impacts my fear and lack of trust that I will be treated fairly. I am afraid I will be harmed, rather than helped by an inpatient stay.

...despite all that, I agreed to go into the hospital.

This is where the real Kafkaesque bureaucracy begins...
I asked Dr. X. to refer me to the hospital next door to where his office is. This is where I went before for ECT. My experience had been okay, and some of it had been really positive. I trusted that going there would be okay.

What follows is none of DR. X's doing...I could tell he wished he could send m,e to the Mood Disorders ward I went to before. I appreciate all he has done to help me and can see he tried to help me, but the system has too many blocks, rules, and idiotic systems in place to allow him to refer me to the University Hospital...

Dr. X told me he cannot refer to the mood disorders ward at the University anymore. All referrals for inpatient ECT had to be done at VG Hospital's emergency department. I listened carefully, thinking he could send a referral to the emergency department and then maybe they phoned me when a bed became available.

They wouldn't make a severely depressed people, (who had a diagnosis, and whose personal psychiatrist was recommending inpatient ECT), sit in the emergency room all day or all night, go through a slew of questions and questionnaires by nurses, psychologists, social workers, residents and doctors: They wouldn't make me sit in an emergency room when I was feeling this unwell and knew what I needed to do to help myself...would they?

They would. In order to be an inpatient I have to go to the emergency room, sit there patiently and politely for potentially hours, and even then I may not be given ECT.

This enrages me. I do not believe that a chronically physically ill person, who had a specialist who had seen them for years, and who now wanted to refer her for some kind of surgery, or other "in hospital" care or program, would be told to send their patient to emergency, where they would be interviewed poked and prodded by numerous hospital staff, and if and when a hospital bed became available, then MAYBE they would be admitted for the specialist's requested plan of action.

I do not know how, in the 21st Century, so much discrimination, and inadequate and downright awful treatment, of people with mental illnesses is allowed. I am telling you...if ECT helps me I am going to make it my business to fight for changes to increase the accessibility, availability, and flexibility of treatments and resources available to people needing help for mental illnesses.

I will patiently accept my situation right now, and go through all the hoops and rigamarole to get the help I need, because I don't want to labelled as a difficult patient, or a borderline. I need help so I will work within the system for now, however,...

The system has pissed off the wrong person. I am going to make it my business to see that in the future mental health patients are treated with the respect, the patient focused resources, and the dignity every human being deserves. I do not mean I will blame the doctors, or nurses, or even individual administrators. I might blame the governments insufficient funding and support for mental health services:>0

I mean I will volunteer my time to work towards seeing positive structures, regulations and individualized, patient focused support systems and care are available to ALL people with mental illnesses. My first plan of action will be to find a way to ensure that no person wanting ECT is made to wait in the emergency room, when a referral from a regularily seen psychiatrist should make it easy enough to call the patient when a bed is available.


Ethereal Highway said...

Though I seem to have a very different way of going about things than you do, I know what it is like to feel hopelessly depressed. I also know what it is like to be angry when I have studiously considered my options only to find the roadblocks that have been set up by others. To me it is especially painful when the roadblocks seem to be woven into the fabric of society instead of being put there by an individual. As painful as it is, I got 'used to' (as much as one can) being discounted by individuals. Wider society was my last hope and I often feel very let down as I feel society has also harmed me. Now I see where the individuals got their ideas and it depresses me even more. I understand your outrage. Above all, I hope you can feel better soon... I know how it is... it's so bad. I feel for you, Aqua. I really do.

Harriet said...

I also find it hard to believe that that type of situation exists in the 21st century. I wonder if it would be any different here in the US, although I kind of doubt it. I think it is great that you are going to be channeling your anger into something productive, and I also admire your ability to work through this patiently so that you can get what you need in the end. You go girl!