Serial waiting

I read a report last week about the complicated and onerous waits for outpatient mental health care in this state.  It was a thoughtful report from the Blue Cross Blue Shield of MA Foundation, thoroughly researched.  It told me what many parents already know:  we wait far too long for mental health appointments for our children (and ourselves).  In fact, if you add up all the days and weeks and months you spend waiting, you’d have a nice chunk of time all to yourself, or to rescue homeless kittens, or learn how to use an InstaPot.

It struck me that even the best reports fail to capture an experience most of us have.  I call it serial waiting.  It’s waiting first to get an appointment with a therapist.  It’s waiting to get an appointment with a new therapist when that one leaves.  It’s waiting to get an appointment with a psychiatrist so you can see if medications are part of the answer.  It’s waiting in emergency departments for an elusive bed.  We don’t wait once, but again and again. Serial waiting takes its toll.

The first part of your wait is that long process where you get a list of names, wade through them, cross some off and wait for calls back from the ones who work with children or take your insurance. At this point, you think anyone who works with kids will fit the bill – you are no longer willing to be picky.  Later, as you understand how complicated  and unique your child is, you again go through the process of finding a match, this time looking for someone who has experience with bipolar disorder or school refusal or sensory issues.  Then you wait once again for a slot.  You wait next for a neuropsychological evaluation or an appointment with a psychiatrist.  You get frustrated, impatient, angry, argumentative, cajoling and persistent.  But if it shortens up that wait, you feel okay with getting emotional.

When my son was 12, his psychiatrist went back to Kansas where his roots and family were.  We looked for a new doctor and were turned down by a major institution because my son needed frequent visits and their scheduling didn’t allow that.  We were turned down by a another doctor who thought my child was too complicated, by another who was not taking new patients and still another who only saw children who were 16 or older.  The wait stretched on and on before we finally got an appointment.  The psychiatrist who finally agreed to treat him was awesome, unfazed by his complexity.  I told myself she was worth the wait.  Lucky for us, she really was.

Serial waiting has nothing in common with serial killers, except for one thing.  Serial killers have a pattern where they kill, have a cooling off period and then start up again.  This pattern is a lot like serial waiting, except there is no killing involved.  (Sometimes you feel like you are uselessly killing time, but that’s a different thing.) We have that cooling off period, too, then we find ourselves frustrated and waiting once more.

Not a lot helps shorten the waits.  It’s not a matter of being more skilled or doing more research.  Most of it is out of your control.  There simply aren’t enough clinicians, doctors and mental health workers to meet the demand.  When we look for the next person to provide care for our child, we go to the back of line each time.  Personally, I’ve never become better at waiting.  As a parent, you feel it’s your job to get care quickly, especially once you’ve identified the need.  Many of us pay a hefty amount each month for health insurance, expecting that treatment will be available when needed.  We know that waiting a month for therapy or four months to see a psychiatrist is a huge chunk out of a child’s life.  Once you make it through the wait the first time, wait #2, #3 or #ManyMore are even less appealing.

In the medical world, they talk about uninterrupted treatment.  People with chronic illnesses like asthma, diabetes or heart disease are told firmly not to discontinue medication, lifestyle changes and other care.  In the mental health world, uninterrupted treatment is like a unicorn, aspirational and mythical.  In reality, waiting for a new therapist means that the parent becomes the quasi-therapist.  Waiting for a new psychiatrist or nurse practitioner means cobbling together a prescribing plan to span the gap.  We do this again and again – it’s another component of serial waiting.

Serial waiting wastes a lot of time.  What’s more it squanders our faith in the mental health system (such as it is) and our hopes that while the process moves slowly, the results will be worth it.  Earlier this summer, I asked a lot of parents what waits for care was like for them.  Parents said they had to wade through lists of practices that didn’t take kids, practices that did take kids but weren’t taking new patients or no longer took their insurance.  One parent said several people on the list provided by her insurer had died. If some politicians worry about people who have died voting in an election, aren’t insurers worried about people who have died offering therapy?

 

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2 thoughts on “Serial waiting

  1. I now live in Mississippi and there are approximately 50 psychiatrists in the state. Those are largely clustered in the more “metropolitan” areas which can be hours from our largely poor, rural population. As a special education teacher with a focus on emotional and behavioral disorders, I see first hand the toll this takes on children and their families. As a country, we must do better for our most vulnerable. There are treatments and help available but it does no good if they cannot be accessed.

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