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.

Things That Make You Go ...Huh???

I usually let these kinds of ideas wash over me, but this article, "Depression is Not an Illness" is so draconian, and, from my experience, mistaken that I had to respond.

The writer claims to be a retired , licenced psychologist. I worry others will read his post and feel their illness is their fault, or that somehow they are to blame for being depressed. I find it hard to believe that a person could be in the field of helping others...especially as a psychologist, and be so judgemental and mistaken in their understanding of a very difficult to deal with mental illness. My experience has always been that the major depression always shows up before all the activities he suggest cause depression show up/or disappear. My depression leads to my eating poorly, isolating, becoming inactive etc. Not the other way around.

This was my comment to him about his article...long-winded, but in support of all who struggle with MDD (or any other mental illness, I needed to say what I said...

"[My comment on his site...]
I am actually flabbergasted by this post. Not sure if it is satire (I hope so) or for real. I hope you post my response so others like me do not feel blamed for not relieving and avoiding their MDD. In case you don't I am going to post it on my website.

I struggle with MDD. I have had numerous clearly defined episodes throughout my life. Until this current episode I was the epitome of what you suggest makes a person happy, yet I still fell into severe and often lengthy depressive episodes:
good nutrition
- fresh air [I routinely biked, skied, swam outdoors and indoors, hiked, camped, canoed, gardened, walked everywhere was outside much of the time]
- sunshine.[.see above]
- physical activity[...ditto]
- purposeful activity[...worked(loved it), went to school(really, really loved it), danced, played music, created art, wrote, helped others]
- good relationships, [beautiful friendships, very open, nothing we could, and did not talk about.]

For me severe depression really did just pop out of nowhere. There was nothing wrong with my life during these episodes...I had a great life. It was the depression that stopped me in my tracks, not the other way around.

When you wrote, "When things are going well in our lives, we feel good"...I understood immediately that you misunderstand MDD. The sad thing about MDD is that even if things are going well this illness destroys a person's ability to feel good.

I find it difficult to understand how you treat people with depression when you place so much distance and dogma between yourself and your patients. When you say,

"Many of these individuals lived on a diet of soda pop [I can count on my hands the number of sodas I have drank in the last 5 years], cigarettes[don't smoke], and salami sandwiches[I think the last salami sandwich I ate was in high school...I'm 44]. Others drank enormous quantities of alcohol [I used to drink periodically...like many other happy people I know...until I got as severely depressed as I am now. In which case it drove me to drink more to try to help my symptoms]. Few ate vegetables regularly[ was vegetarian.so did well here]. Many stayed indoors almost all the time [see my above list of favourite and common activities]. Physical activity was almost always minimal [ditto]. Purposeful activity – i.e. activity directed towards some kind of goal – was seldom present [university? , and good honest, open relationships almost non-existent...[great friendships?]...

...Chronically depressed people, however,are individuals who have been neglecting these areas for years. They spend the vast majority of their lives indoors, watching television and eating snack food. They are often over-weight, have no goals other than the next TV show, and although they may have many acquaintances, they do not share their concerns and worries in an open and honest manner"

...it struck me that you believe very strongly that "we"are so very different from you. We just don't try hard enough to be happy. If only "we" would try harder, "we" could be as happy as "you".

Have you ever really worked with someone with clinical depression? Contrary to your statement that we are indoorsy, crappy food eating, inactive, solitary, lazy, unfocused, fat, slobs.. [actually slob is my word...it's how i sense we seem to you) people with MDD are a wide range of people...some of us even active, outdoorsy, friendly and friend supporting, anti-t.v., fit and interested and interesting people.

It becomes clear you have never understood what it is to be depressed when you state, "Depression or despondency is not as acute a sensation as pain". In the past I broke both my elbows at the same time, had a severe case of CMV related hepatitis that required hospitalization, have broken my leg, my ankle, my wrist, had three concussions, was injured in a car accident, had a doctor drill into my leg bone for bone marrow, basically have suffered a lot of physical pain.

NOTHING is as painful as severe and chronic MDD. When I broke my elbows I had just come out of the hospital after having ECT. For the first time in years I felt mentally well. I REFUSED any pain medication for my physical pain, for fear that my psychic pain would recur. NOTHING hurts like mental pain...NOTHING.