Alice and the Rabbit Hole

I've written a few blog posts, and usually when there is a milestone to celebrate or a loss to mourn.  Never have I written with rage, frustration and sheer anger. Never have I written in the form of a story either. It's time for that though, so let's see where this goes. Keep reading and take the plunge with me, or not. Warning has been sufficiently given.

Those who know me are aware of the things I'm passionate about. To name a few, I'm very passionate about help for Alzheimer's and Dementia patients and their caregivers.  I'm passionate about animals, the arts and design.  I'm particularly passionate about mental health issues, especially for children and teens.  This is where the rant, and the story comes in.

I am so very tired and frustrated of dealing with a system that is so irrevocably broken that I fear there is no hope of it ever being turned around.  It's too far gone now. I'm tired of hearing of people who have fought for years to get help for their children/siblings/students only to lose them in the end.  I'm tired of watching these kids get tired of waiting for help, and frustrated beyond belief when I keep seeing ads and pamphlets about the "outstanding" work and great strides that our provincial system has made around the area of helping young people with mental health issues.

I have fought with this system for years.  By "fought" I mean that I have tried to calmly explain, reason, and articulately express to countless "team" members the type of help that is required.  I have been driven to tears, raised my voice, slammed my fist down on one occasion, walked out of meetings and resorted to threats of media coverage. There have been letters to the local MP, the MLA for the riding (although not written by me, but rather my counterpart in this journey), and meetings with the head of Psychiatry at the local children's hospital to lodge a formal complaint.  This is the only forum left now.

Let me explain how this "system" works, for anyone who is lucky enough to know nothing about it, and indulge me by letting me tell you a story.  In the interest of tying this into the title, let's name the "fictional" patient "Alice".  The first thing that has to happen to start the story off is that someone must first recognize that something is going on with Alice. She is young, so it is unlikely that she can come forward with her issue, as she is unable to fully explain what she is feeling and thinking.  The next step is a visit to Alice's family physician who will do her best to decide whether Alice needs specialized treatment and will then make a referral through the local children's hospital Mental Health Department.  Now, this is where the story starts to go to hell.

Initially, there is relief that "someone" is going to help Alice.  After all, there has been a referral to the Mental Health Department, and everything her parents have seen and heard tells them how seriously these things are taken and that they've done the right thing by ensuring timely and proper assistance.  The relief slowly turns to bewilderment as they then spend months watching Alice suffer, and waiting to hear when that magical appointment date will be.

Then, one day they get that call that they've been waiting for.  Finally, an appointment!!!  Help will surely be quick and swift now.  Oh wait - no, this appointment is only to assess and determine whether a psychologist, psychiatrist or social worker is required.  And by the way, if Alice's parents happen to have given in while waiting and started seeing a private psychologist whom their child has started to make a connection with, well "sorry guys, we can't help you.  It's either us or them, so you'll have to drop the private doctor".  Well, if they've still got any belief in the "system", then they play by the rules and drop the one person who has been at least trying to help this situation.  Then they wait for another couple of months after the assessment, because there is a very high patient/psychologist ratio, and the waiting list is quite lengthy. They must wait for a spot to clear.  In hindsight, it's scary for Alices' parents to think of just HOW those spaces get cleared.

So, the family basically just watched the better part of a year go by.  It's maddening and frustrating, and yet, they aren't the ones needing the help.  Imagine what it's like for Alice, especially when she isn't yet an adult and she was raised to trust adult professionals to help.  It's hard to explain to Alice why it's taking so long. However, she has now been assigned a couple of professionals, so her parents do their best to convince her that the help is here now and it will all start to get better.  Little do they know that they are basically repeating the whole Santa Claus and Easter Bunny ruse again.

The relief of being matched up with the right professionals is quickly short-lived. They got past the waiting list, so things are surely going to start progressing, right?  Wrong.  First off, Alice needs the right match and not just in the specialty sense.  If the person assigned to her can't seem to find footing because there's something missing in the connection between them, then she's no better off and possibly worse off.  If the professional in question can only see her once a month when clearly she needs to be seen weekly, well then she's in another bind.  Now, one may be lucky enough to find the right match early on, or be transferred early on to someone better suited, which is what happened in this story. So, she starts to make a little progress and then finds out that one of her team members is leaving to go head up a board of some sort or another, and the other is going on maternity leave, so she's back on another waiting list. Alice is now clearly finished with this and tells the staff that she's been feeling much better lately.  Do you see where I'm going with this story yet?  Are the words "tiring" and "frustrating" starting to make sense?

Be Alice for a moment.  You're not yet an adult.  On top of the issue of hormones, lack of confidence, the high level of anxiety you were referred for in the first place, you're now feeling let down.  It's become pretty clear that nobody really cares except your family.  Maybe you're being a drain on your family.  You're tired. Tired of being given the run around, tired of feeling this way, tired of having to tell your story to new people every time you turn around.  So, what do you think your alternative is?  Now it gets really messy.  You're rushed to the children's emergency department because you've voiced a "plan", or worse.  At best, you're there for a minimum of 2 hours before a crisis team worker sees you.  You tell them your history, what you feel, why you feel it.  This takes another hour.  Your family meets with the crisis team worker for an hour. Then you ALL meet with the same person again.  At this point, you're all unaware that this person isn't the one that can help you.  They are really just the clinical intake person.  Now you wait a couple hours for a psychiatrist.  The psychiatrist does a 15 minute assessment, extracts a verbal agreement with the patient that they aren't going to carry out any plan, and then they send the patient home for their worried and clearly over their heads parents to keep an eye on.

These patients may be young, but they are wise.  After all of those hours and no one reassuring them that they will look after them and map out a solid plan for hope or help, these kids will basically say whatever they think the doctors need to hear in order to let them the hell out of this place.  They're tired, more tired than when they arrived.  And the next day they are back there again to start the circle all over.  The lucky ones are, anyway.

Now, be Alice's parents for a paragraph or so.  You've just been at the hospital for almost 15 hours.  You don't get to meet the psychiatrist and talk to her - that's privileged between her and Alice.  You have no idea how much the psychiatrist has been told, or what they've been told.  All you get is a 2 minute face to face to be told that the Alice says she is "safe" now and there is no need for admission.  Really????  Seriously??? This is when an Alices' mother starts to distrust, get angry and lose faith too.  The next day is spent frantically making calls to the psychologist, the psychiatrist and the social worker. However, since the patient deemed herself good to go a couple of months ago, the file has been closed. They will need to be referred again by the family doctor.

The family doctor is booked solid for the next 2 weeks. Now the protective mama bear is pissed and causes a scene with the doctors' receptionist who then hustles her and Alice into a waiting room to save everybody more embarrassment.  The family doctor calls right away to make an emergency referral back to the same place Alice started. Three weeks pass, no appointment.  Calls to the center determine that no one has any info on the patient in question, get the doctor to send a copy of her file. Three more weeks. Finally, it's been 3 months and another incident and another phone call from Alice's mother, who is now starting to unravel herself.  The answer is that they've just now determined who the specialist will be, but he's booked until July.  This is May.  The word "media" is spewed out and lo and behold, he can see Alice in three days time.

Alice is now four years in.  She finally has the right team.  Things are stable, not better, but stable.  Then another diagnosis comes from left center.  This one is uglier, harder to understand and cannot be formally diagnosed until the age of 18.  However, there are medications that can help.  And there is a program that might help - it's 3 months long and there's a waiting list, but it might help with a couple of the issues.  Okay, then.

It takes 2 months for the paperwork to be done.  Somehow the appointments get sidetracked and the paperwork doesn't get finished until September.  It doesn't get sent until October.  The first meeting isn't until December.  In the meantime, another incident and another foul up.  EHS dispatch somehow or another decides to route Alice to the adult hospital, even though the paramedics are pushing for the children's hospital where she is being followed.  This doesn't go well.  Alice and family are left waiting in a hallway for 3 hours before being seen by a nurse or doctor.  The distress and depression are now giving way to anxiety and anger. Another 3 hours in an emergency bed and things are getting out of hand.  So much so that the charge nurse wants the patient sent under escort to the hospital that should have been picked in the first place. Three more hours at the second hospital.  Alice (who was originally in a state of despondency), by this point is now angry and being treated as a threat.  No frigging wonder.  Other than the paramedics, Alice has not been shown any compassion, respect or psychological treatment whatsoever all day long.  It's now 11 pm.  She says something very rude to the resident who then complains to her superior.  The superior is the psychiatrist on call.  He berates her, calls her disgusting and signs the paper to get her out of "his hospital".  At no point does he make any attempt to meet her parent who has been waiting for hours outside. Alice saunters out of the hospital doors unattended and no one bothers to see where her parent is (she was right outside the door, but that's not the point).  Basically, they've sent Alice home in a worse state then when she arrived.  Again.

A formal complaint is made by her parent.  A protocol is put in place for any future treatment for Alice. EHS has been sent info on the patient and now know where to route any future emergencies. An apology by, and reprimand for both the resident and psychiatrist on call.  Okay, progress?  If only.

December, and the first appointment for intake to a three month intensive day program of therapy.  Doesn't go well.  There is too much mistrust on the part of Alice at this point.  A couple of weeks of convincing, and it is agreed upon with the staff that this will be started in stages.  Instead of feet first and full immersion, she'll start an hour or so at a time, with a tour and meeting the staff etc.  Once the comfort level is there, she'll do a whole day and so on.  So, today was supposed to Alice's first whole day.  If you've read this far without losing interest, you should be able to guess that another ball was dropped squarely upon Alice's head.

The first thing (or so I'm told) was that a nurse met Alice and parent to fill out paperwork.  An hour worth of paperwork.  When the question was asked what the paperwork was for, the answer was that this was the start of the three month program so it's part of the "admission".  This is when things started to go south. When the social worker who had already met with Alice and her father twice (for an hour each time), and spoken several times to both of her parents finally showed up, he introduced himself.  He had no recollection of ever meeting her before.  No recollection of the agreement made.  No recollection of the phone conversations. No knowledge (anymore) of the tweaking done by his colleague and Alice's  team worker to fit this program to her needs.  Nothing.  Zip.

So Alice has now decided to opt out of this program.  Who can blame her?  Hopefully her story will have a happy ending, but it seems that she will be doing most of the story writing herself, with little help and lots of fumbling from those who have been touting the great strides made of late.

Sheer madness. No wonder most of the Alices in this world want to stay down in that rabbit hole.

And that, my friends, is the end of this story.  For now.