Navigating the Mental Health System – Episode 1

In this episode of NAMI’s podcast, NAMI CEO Daniel H. Gillison Jr. speaks with NAMI board member and psychiatrist Dr. Glenda Wrenn Gordon about her experience navigating the mental health system as a mom, after discovering one of her children has been struggling with thoughts of suicide and tried to take his own life.

You can find additional episodes of this NAMI podcast and others at nami.org/podcast.

Transcript

[WRENN] If this was difficult for me to navigate the mental health system and find appropriate resources for my child — and I am a board-certified psychiatrist who has spent my entire career in the field of mental health — imagine how difficult it is for someone who doesn't have access to the same knowledge and resources that I do.

[GILLISON] Welcome to “Hope Starts With Us,” a podcast by NAMI, the National Alliance on Mental Illness. I'm your host, Daniel H. Gillison Jr., NAMI CEO. We started this podcast because we believe that hope starts with us. Hope starts with us talking about mental health. Hope starts with us making information accessible. Hope starts with us providing resources and practical advice. Hope starts with us sharing our stories. Hope starts with us breaking the stigma. If you or a loved one is struggling with a mental health condition and have been looking for hope, we made this podcast for you. Hope starts with all of us. Hope is a collective. We hope that each episode with each conversation brings you into that collective — to know you are not alone. Today, I'm joined by a board-certified psychiatrist, mental health policy expert and NAMI board member Dr. Glenda Wrenn Gordon. Dr. Wrenn Gordon is a West Point graduate. She completed medical school at Jefferson Medical College and trained at the University of Pennsylvania, where she was chief resident. She was the founding director of the Kennedy Satcher Center for Mental Health Equity until 2018. And she continues to serve and teach in a variety of roles. Dr. Wrenn has a broad range of research and health services experience, driven by her passion to eliminate disparities in health and improve the quality of care for people with mental health and substance use disorders. One of the other things you should know about Dr. Wrenn Gordon, though, is that she's also a mom. And if I've learned anything from my time at NAMI, it is that there is no greater advocate than a mother. We are rounding up the month of July right now, a month in honor of the work of a pioneering Black mom has since 2008 been designated “Bebe Moore Campbell National Minority Mental Health Awareness Month.” When Bebe wasn't able to find mental health resources in her predominantly Black and Brown neighborhood for her daughter living with a mental health disorder, she went to an affluent white neighborhood and brought those resources back to her community. And so was the beginning of how her advocacy for one turned into advocacy for so many. The story of NAMI as an organization has a similar beginning. It was started by a group of moms who weren't able to access the support they needed for their children. So they started creating peer-led groups instead for support. So let's start there. For those who don't know you, give us a little bit of your background. How did you come to NAMI? How did you begin your own journey of having to navigate the mental health system as a mom?

[WRENN] Well, Dan, let me just start by thanking you for inviting me to be here as the first guest to the NAMI podcast. I'm really grateful for the opportunity to share my story. My introduction to NAMI started during my professional training and when I was in residency training, I think I might have even been at a residents meeting where a NAMI In Our Own Voice speaker was present. So I learned a little bit about that program, which is one where individuals with lived experience can learn how to take hold of their narrative and transform it from an illness, weakness, sickness narrative to one of empowerment and strength. I was really moved by that initial interaction and started to recommend it to my patients to say, “Hey, you should go and do that training.” And then I would also, I found out more about the NAMI support groups. I would go online and say, “Hey, here's a support group near where you live.” It was very easy to type in their ZIP code and make them, you know, recommendation and referral there to the community. And so that was my first intro, just learning about their signature programs and recommending it to patients, and then also friends who were experiencing a mental health crisis where I might not know the system where you live, but I know that there's a NAMI there. And I would say, “Go ahead and find your local affiliate, and that's a place where you can get started.” And then when I moved to Atlanta, I started to get more involved with my local NAMI affiliate, NAMI Georgia. It started out being a participant with CIT training, which is a signature program that trains police officers on the basics of mental health conditions so that they can respond in their line of work with that expertise and different tactics for interacting with individuals who may be experiencing a mental health condition in an informed way. And through that process, had the opportunity to also support the local NAMIWalks. And a fun little story there is my son, Avi — who we're going to be talking about my experience with him today — had his public debut playing the guitar at the finish line of a NAMI walk. So that was my experience with NAMI. So, so great. And of course, now I'm on the national board and get to serve in different capacities. So in terms of my introduction to the mental health system as a mom, I kind of have to go back to my oldest son, Avi, who — he's now 18 — but when he was 1 years old, his father and I divorced. So it didn't take much for me to figure out, divorce is a traumatic thing for a child. So we put a lot of effort and energy into making sure that we were paying attention to how he was dealing with those transitions. And, you know, at first it was really just difficulty regulating his emotions, going from one household to the next, which would kind of go away after a couple of days. And when he was 4 years old, I had remarried and we relocated to Atlanta away from my extended family and away from his biological father's extended family. And during those visits, which were less frequent, you know, a little bit more of a dramatic shift from summers and holidays, he would have a more pronounced period of adjustment. And I took him to see a mental health provider when I was worried about how he was managing the anxiety. This, I don't, it's like there's a shadow system, right? So there's the mental health system that's the public system or the one that's through insurance. And then there's like a shadow system of self-pay. So my first entry was with that shadow system of self-pay. I had the means. I paid out of pocket. I didn't even reimburse to get out-of-network benefits, which is another fun fact that you can do that. And so those treatment providers, it wasn't a good experience. So we kind of just had a couple of sessions and I said, “I think I can do better by myself and supporting him.” And he did okay until his freshman year in high school when a close friend of his who was in Junior ROTC together, and he sadly died by suicide. And this was really one of the first people outside of Avi’s family that he was really connected with. So I knew that was a red flag and we kind of rallied around him and offered him support and started to pay more attention to some of the things that we had previously categorized as just normal teen stuff or normal development things. That led to him being diagnosed with ADHD, which we initially managed with behavioral environmental interventions. I got him an academic coach and then eventually realized that medications would be the next step in terms of managing those symptoms. And he really did well. He was seeing a psychiatrist in the community again with that self-pay system. And then it really wasn't until a couple of months ago now, which was, you know, the early morning hours of my daughter's 10th birthday that — and this, of course, there's a larger story to be told — but it was pretty much on top of a very difficult year that I discovered that he had a serious suicide attempt. I pretty much walked in and realized that this had happened and started immediately to call upon all my expertise and resources. So I just want to give people an idea of what I had access to and then, you know, to think about in that process, what would you have done in that situation? So the first moment of discovery, you know, in that first moment of discovery, my first text was to a child psychiatrist who practiced in my state, and I was asking very specific questions. “My son is 18, even though he's still in high school, can I take him to the children's hospital? Because I feel like he would be cared for better than an adult hospital.” And a few months ago... 

[GILLISON] May I ask you a question? May I just interact with you? I'd like to ask you a question right there. Do you think other moms even know to ask that question? Well, first of all, kudos to you for the early intervention. You talked about the change in Avi’s life at 1 and then the re-orientation, if you will, at 4. And, you know, one of our strategic plan, it says “get help early.” So you looked at identifying the need for help early and you did it. Not every mom knows to do that. That's first. But secondly, as Avi matriculated, and then at 18, you saw the situation and you asked a question: “Can I take my son to this at his age?” Is that a, is that a question that you would say moms even know to ask? And, or would, do you think that hospitals in some systems say, “I'm sorry, he's at this and he can't come here?” What do you think as we look at that situation and what you as a mom were able to do from your knowledge?

[WRENN] I mean, from… on a good day, I don't think that would be the first question in a normal person's mind at that moment, even outside of a crisis situation. But I have lived experience as a provider, and I know there is a very significant difference between the adult emergency medical system and the pediatric emergency medical system. And I know where I live and I know my closest hospitals. So with that in mind, I said I really would rather not take him to the adult-serving institution. And he's, he's still a child. He's 18, he's still in high school. So, but I wasn't sure. So instead of just taking him to the adult place, I knew I needed to get more specific guidance. And I… that was really a subtle, you know, advantage that I'm glad you pulled out, because it's just a subtle thing. Because maybe you also have a child that their birthday or however they're in school, they're technically an adult. So already from the beginning, I knew this is going to be different because he's in a, he's a legal adult. So the system is going to treat him as a legal adult for decision-making for all these things. And I already knew I had to do some things differently. And that was the first my first question. The second one was probably one that that, unlike the first, most people would be wondering, you know, “How serious is this and, and what should I do? Should I take him to the emergency room? Should I just call his outpatient psychiatrist or therapist? Should I take him to a crisis center?” But I'm a medically trained physician, so I knew that there were medical complications. And I, but I didn't know the details, so I contacted another child psychiatrist who's a mentee of mine and asked them, gave them specific details and asked them, you know,  “How concerned should I be?” You know, “Is this the right path, taking them to the medical emergency room?” And they said, “Yes, that's what you need to do. Here are the things you need to look out for. Here's the timeline for which this risk exists.” And that was a very important juncture. Most people would probably lean towards 911, calling 911. And I also have experience because I have another child who has a medical condition, and the first time that she presented, I called 911 because I was totally freaking out. And at the end of the day, like, I really didn't have to. And I feel like that's very normal for mental health crises. Most people are like, “911. OK, this is a crisis.” Now… but now we have options. There's 988. So now you can have an easy number to remember that will bring the right resources in the case of a mental health crisis. But I mean, until like literally this month, you didn't, you had to remember some very complicated number. But I think that, you know, “This is a crisis. What should I do?” is a very common, you know, first thought. I had the advantage of being able to get very specific guidance to confirm medical emergency was what was needed. That prevented me from taking them to a crisis... then they say, “Oh, no, he needs to be medically cleared.” Now, see, that already brings me one place to the next. So I knew that. And then the third was my knowledge of levels of care of the system. So previously, my son had experienced what we call an outpatient level of care. He was being stepped up to what would eventually, I knew, require an inpatient level of care. But then I knew there was a level between those, which is residential treatment, and I knew that could be hard to get. So my third call was to a psychiatrist who worked at a residential program that I had specific knowledge of its quality. And I started the process of finding out about the admissions requirements at that facility. Literally, this all happened within the first 10 minutes. Before we actually even got in the vehicle to drive him — again, not by ambulance — to drive him in our personal vehicle to the medical hospital.

[GILLISON] You know, and this was all done in that, in that first 10 minutes, which is just incredible that you had the wherewithal as a mom and an advocate to do that. As you started navigating the system, as we think about physical situations, a young, a young person who has a compound fracture and all of a sudden they're in that hospital. And the response that immediately, in terms of that triage team, what was the triage experience like for your son that had this, that is invisible in many ways, that's not that compound fracture, but needs the same type of a triage? What was your experience in that regard?

[WRENN] Well, so I knew it was going to be different because I know that, you know, emergency departments have special protocols. So already from the initial position, it's, you're in a different scenario. So this was decision point number two, which is we were staying by his side all the time. We were never going to leave him alone so that we could intervene if there was any type of inappropriate interactions. And there were. So, you know, he was treated very well. The initial triage, you know, getting all the medical… and it really, you know, we ended up in the intensive care unit and there were a couple of very disruptive, inappropriate comments being made to him directly, very dismissive and stigmatizing comments, which, you know, luckily I don't think my son processed that 100%. I surely did and was able to advocate through, you know, you kind of have like a one-on-one sitter at all times for safety protocols. You're in special rooms. I ended up escalating it to the charge nurse and said, “This particular provider, I do not want to interact with us anymore.” So… I don't know why they thought that this was a way of interacting, but that's inappropriate. So, you know, that advocacy starts even in the medical environment. Now, I will say, we had so many incredible providers. This was really just one, but it only takes one negative therapeutic interaction to start a downward spiral. So we were at the bedside during the entire medical course of care to ensure that my son was protected from any potentially stigmatizing interactions. Minimizing medical symptoms. That was something we had to navigate, I had to clarify. This is my son's baseline. These numbers do not correlate with the baseline, so you need to treat that accordingly. And, you know, so that was on the medical piece. Once he was transferred to the locked inpatient psychiatric unit, we kind of entered a black hole of communication where obviously there was no visitation, but there wasn't actually even communication. And this is despite my knowledge of knowing he's 18, he needs to have a release of information signed. I made sure that that was signed for myself and his psychiatrist before he left my presence. So there was really no legal excuse why we weren't communicated with. This just reflects a weakness, and that — I'm being nice by calling it a weakness — because I find it highly inappropriate as a provider that you would be able to provide care to an individual without understanding the information from the environment from which they came. But that was nine days of a very big black hole of communication, where I then reached out to my fourth psychiatrist contacts — if you're counting in the storyline — who gave me advice to say, “Just go down there.” And I kind of, you know, wrestled with that. I don't want to be like this VIP annoying mom. But she's like, “Oh, no. People do this all the time. I work in-patient. That's what you need to do.” And that's what I did. And I really honestly believe that is the only reason why my son was not given an Uber ride back to our home, because that was the plan. Meanwhile, I was…

[GILLISON] So the plan was to give him an Uber ride back to the home. You, a colleague told you, “Go down there.” Your expectation was that you would be communicated to when he was in this locked psychiatric unit, as you were told. But you're saying that over the nine days, that didn't occur, and that this is more of the norm?

[WRENN] Yes.

[GILLISON] And… OK, OK.

[WRENN] I've heard this from friends, from family members, that this is the norm. And, you know, when someone is a minor — this is another example — I was just having a conversation with a friend yesterday. They have a minor. The communication is only for the things they have to communicate. So, agreeing to treatment. But there's no extra communication about the things that would matter, like what's the diagnosis, what's the treatment plan? This person is still living in the dark. So this is a really big issue.

[GILLISON] So as a mom, and a mom that's not a medical doctor like yourself. that doesn't have your wherewithal, your knowledge and your experience to know this set of questions — what counsel would you give to that mom that may be a school teacher, that may work in retail but has a child that's about to navigate through the system? What questions would you tell them to ask or where would you point them to actually help them, kind of, approach this in a way where it can be at least successful from a communication standpoint?

[WRENN] I mean, that's a great question. And I really have to start back with prevention because I'm hoping that you're not going to wait until the last minute to figure out what to do. My hope and my vision is that people would get the accurate information before they need it. And, you know, if you will allow me to make another plug for NAMI’s book that's forthcoming, which I've preordered and recommended to all my friends — “You Are Not Alone” — I think you should read the book. I think you should read the book, even if not for yourself, for someone else in your life. It's not a matter of “if,” it's really a matter of “when.” And it may not be a when for you. It may be a when for someone you love and you care about to be that first step. So that's really my true hope. And then I guess if that doesn't happen, when you're in a crisis situation, do not give up. OK? You got to be like a dog on a bone that's injured. You got to be super protective and defensive and trust yourself. You know your loved one. These other wonderful, well-meaning individuals have a body of expertise and knowledge. But you have knowledge that they don't have. And if something isn't sitting right with you, do not give up until you have your questions answered. Whether that means physically going down there so you can look someone in the eyeballs, even through a mask, to get the answers that you need because you will not get the support that you need over the phone. I mean, that's probably one of those key lessons learned. That's really important on the acute side. On the outpatient side, it's also like, I guess a couple of tips I might share would be: Don't let the payment be the barrier. There's a lot of barriers that people have to get through to get mental health help for themselves or someone they love. And I like to talk about the fact that, you know, I don't have a theory of my pancreas. If I start to have, you know, symptoms of diabetes, excessive thirst, things like that, I'm going to go to a doctor. You know, most people do not have like, “Oh, I think my pancreas is not working the way it should.” But mostly everybody has a theory of their mind. Whether that's a spiritual faith tradition that has an explanation for symptoms that you may have, whether it's just something you've accumulated over time or just an idea of like you know, myself as a person. And so you have to navigate, like, “Is this really a problem? Did I just eat some bad food? Am I just in a funk? Is this just normal grief that I'm still experiencing?” And you have to navigate those internal barriers before you say, “Oh, wait, I think I need help.” And the help usually isn't mental help. At first it might be, I'm going to talk to a friend and talk to a pastor. I'm going to talk to someone I trust. So it's a collaborative community process of seeking help for mental health. Whereas physical health, I break my arm, it hurts really bad, so I'm going to get it fixed. 

[GILLISON] Yeah.

[WRENN] With mental health, I'm suffering really bad, but I'm still not sure if it's going to be better tomorrow, so I'm going to wait. That's the difference.

[GILLISON] Yes.

[WRENN] So don't let cost be a barrier. Yes, once you get to the point of looking for help, you need to figure out your insurance. You need to find a provider that accepts that. But even if you are recommended to a provider who does not accept insurance, most providers have some realm of what we call a sliding scale, which means that there might be some flexibility in negotiating what the cost would be based off your ability to pay. And that's another tip, because half of the providers in a country are not within the insurance-based system. So where you live, you may not have that type of access.

[GILLISON] So I'm a mom and I make a call to them, my provider. That question I ask them is, “Do they have a sliding scale?” What question do I ask them?

[WRENN] Yep. That's the question. Well, “What insurance do you take?” That's first. And then knowing what that's going to cost you out of pocket. “And if you don't take insurance, do you have a sliding scale?” Because what happens otherwise is you call and they'll say, “OK, my fees are posted online.” You might rule someone out and say, “Those fees, I can't afford those fees.”

[GILLISON] Right.

[WRENN] But maybe don't. Maybe go ahead and call them and explain to them your situation. See if they will offer you some resources, or they may be able to recommend: “Hey, I don't have any more availability for sliding fee clients, but here's a colleague who I can recommend to you, or here's a clinic, you know, here's a specialty clinic that has low-cost treatments.” You know, there's a lot of insider knowledge that regular people don't have. And that's why I spend so much time trying to make it no longer insider knowledge. 

[GILLISON] Yes! 

[WRENN] But if you're listening, now you know. You can ask for a sliding scale.

[GILLISON] That's a great nugget. And I want to I want to wrap up with this question and I want to say, Doc and Mom, so a doctor and mom, thank you so much. And, you know, the world can be a difficult place. And sometimes it can be hard to hold on to hope. That's why each week we are dedicating the last couple of minutes of our podcast to a special section called “Hold On To Hope.” Dr. Wrenn, Mom, can you tell us what helps you hold on to hope? What advice do you have for our listeners?

[WRENN] Wow, that's a really big question. I have the gift of optimism and the gift of faith. And those two qualities that I was blessed with, I didn't do anything to earn it or deserve it, are really my anchor points to always have hope that things can get better in the future. That's that natural optimist. But also my faith tradition is something that really grounds me. But I have learned that even if that's not your particular touchpoints of hope, most people can find hope in the love that they can experience with someone else. Most people have hopefully at least one person that loves them, that they love, that they can trust and connect with. And even if you're going through a really difficult time, being reminded that you matter, that your being here matters to someone, even if you're feeling like you're a burden or, “Oh, this is so painful, what I've been experiencing, I just can't do it.” If you have chronic pain, if you have conditions that, you know, you want to just deal with the suffering, taking the moment to just pause and remind yourself that your being here really matters. And I can say this with full confidence that, even if I don't know you, your being here matters to me. It matters to me, and I don't want you to be here and suffer, so I want to help, you know, get the help that you need so that your being here isn't so painful. And there are ways that you can get help. And even if you have a bad interaction with, like, a terrible provider, don't give up. Just don't give up. Try again, ask for help, reach out. There's an army of people probably waiting in the wings that are just desperate to know how bad you're struggling. So I just would hope that people would have the courage to tell someone that they're having a hard time. And sometimes it's that other person that holds hope for you when you don't have hope for yourself.

Dr. Wrenn, we want to thank you so much for joining us today. This has been “Hope Starts With Us,” a podcast by NAMI, the National Alliance on Mental Illness. If you are looking for mental health resources, visit NAMI.org/help to get in contact with the NAMI HelpLine and find local resources. If you are experiencing an immediate suicide, substance use or mental health crisis, please call or text 988 to speak with a trained support specialist. I'm Dan Gillison. Thank you for listening.