A massive and important update on the current state of Gavin’s mental health care

Disclaimer: I’m venting/ranting about the current debacle that is Gavin’s mental healthcare. I’m really frustrated, angry and overwhelmed by all of this because there’s so much at stake. When you read this, keep in mind that I’m experiencing all these emotions and this is my way of sharing our story but also processing all this as well. 

I heard back from the nurse at Gavin’s psychiatrist’s office this afternoon and we had respectful but totally unproductive conversation.  
This was one of those conversations where I’m not sure if I’m more frustrated now than I was before but I think I am.  Yeah, I’m pretty sure I’m more frustrated now. 

After listening to what happened, this is what the nurse told me:

I wish I could tell you that things were going to get better but frankly, they’re only going to get worse.

Here’s the underlying problem. The root of all this, if you will.  
Our doctor was going to have to drop all his Medicaid patients as a result of the healthcare overhaul and changes made to Medicaid. I don’t think this was a choice they were making, it was being made for them, if that makes sense.  

In order to avoid this, he partnered with Community Services and can continue to see his Medicaid patients but only on Mondays.  
Everyone agrees it’s a stupid rule but there’s either a really good reason for it that we just don’t understand or the person who made the rule has no clue what they’re doing and how this impacts treatment/patient care. 

This means that all Medicaid patients have to be squeezed into Monday time slots, of which there aren’t enough and that’s a massive problem.  

That’s the long and short of it.  

As time goes on, we can look forward to this only getting worse and more unreliable. That’s straight from the nurses mouth. 

I explained that it wasn’t so much the wait that was the problem.  It’s that they’re not communicating at all with their patients.  There should be someone in the office to manage the people waiting, as long as there’s people waiting to be seen. 

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People are going to have questions like is the doctor even here because we’ve been here for three hours and haven’t seen or heard from anyone, for example. 

Our other doctors will call to let us know that there’s going to be a wait and recommend that we arrive xxxxx minutes or hours later. 

I don’t mind waiting but there needs to be communication between the staff and the patients that are waiting, quite literally for hours to be seen. 

What really pisses me off is that as one of his first patients, we’ve experienced the very best of care.  Unfortunately, over the years, it’s gone down hill as he’s absorbed more patients than can be efficiently or effectively managed and patient care has been given a porcelain funeral. 

If I hadn’t already known that, I would have learned it today because the nurse said something very similar. 

Nothing was really even resolved today and that has me on edge. I even said that we are going to have to look elsewhere if we can’t receive the care that our kids need, especially in Gavin’s case. 

Truthfully, that’s an empty threat because aside from possibly the Cleveland Clinic, I don’t know of anywhere within a few hours drive that would be qualified to care for Gavin’s conditions.  I know Cincinnati Children’s Hospital is supposed to be amazing but that’s a good four hour drive. 

That leads me to another issue. 

There doesn’t seem to be effective triage anymore.  There are plenty of patients that don’t need to be seen by him personally because they aren’t complicated cases.  

He’s frankly the only psychiatrist that we know about, who’s qualified to deal with a kid like Gavin.  It used to be that he focused on patients like Gavin and sent the standard ADHD kid to the nurse practitioner. It doesn’t seem like that is still the protocol. 

Every kid has a right to get the help they need but some, if not most kids can be treated by any decent psychiatrist (assuming one can be found and they take your insurance). 

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The kids like Gavin who are diagnosed with things like Childhood Disintegrative Disorder, Schizoaffective Disorder and several other comorbidities, don’t have that same option.  They need to be seen by someone very specific. 

These disorders are so rare that your lucky to find someone who’s even seen it in real life before.  

The Cleveland Clinic told us last month at Gavin’s appointment that they will maybe see one kid with Childhood Disintegrative Disorder every five years or so and that’s the Cleveland Clinic as a whole, not just the main campus. There were 6.62 million visits to the Cleveland Clinic in 2015 alone. That’s an estimated 33,100,000 visits over a five year period of time (roughly).  One of those visits might see a child diagnosed with Childhood Disintegrative Disorder. That’s how rare this is and what we’re up against. 

That’s just to help put this into perspective. The point being, that when resources are limited, it’s all about triage.  

Anyway, Gavin will try again to be seen on September 12th.  This time it’s much earlier in the day, so that should increase our chances of getting through the door.  

The nurse told me that I need to have this same exact conversation with the doctor, so he knows what’s going on and then we can figure out what to do from that point forward.  

In the meantime, we still don’t have new appointments for the other two boys but refills were sent into the pharmacy.  That eliminates the immediate crisis and buys us some time to figure out what we do next.  

I understand that the doctors office in an impossible situation, as a result of things outside of their control but don’t doctors offices have a right to stop taking new patients, so that things like this don’t happen? 

Don’t get me wrong, I love everyone in that office but I’m not real happy with them right now.  We won’t make any decisions until after our next appointment, two weeks from now.  

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Unless we can figure something out, so that Gavin’s receiving the care he needs and deserves, we’re going to have to make a move.  I don’t know what that move is but this can’t continue.  

It’s been almost nine months since Gavin’s been seen and he’s on a medication that is more tightly controlled than anything else in the US. Nine months is way too long.  I’m pretty sure he needs to see the doctor every couple of months at minimum, just to get his refills and be evaluated for continued use of the Clozapine.  

Something has to give… Having the best doctor for his particular mental health issues, is only beneficial if he’s actually being seen.  

I don’t know what we’re going to do but I’m hoping we can figure something out, even if it’s as simple as Gavin getting the 8am appointments.  That’s a really simple solution and shouldn’t cause a problem because it’s only once every couple of months.   

Either way, I’m grateful we got him rescheduled without having to wait until the next available appointment, which happens to be at the end of October. 

With any luck, this will get figured out.  

As I’m signing off for the night, I just want to say that I hope that anyone dealing with something similar, can find a solution that works. Life is hard enough on the good days.  Things like this make everything worse….  My family is far from the only one facing these kinds of challenges and many are facing far worse…. 

…and one last thing.. Stop the fucking bipartisan arguing over the healthcare system. It’s time to sack up and fix it. Any idiot can look at the state of things and come up with solutions that are better than the status quo. What are we paying you for anyway? Maybe if you had to deal with the same issues yourself, things would be different…. Let’s put every government official on Medicaid and let both them and their families navigate the same sadistic nightmare that so many of their constituents face daily.