Advocating Big and Advocating Small…It’s all Important!

From Linda M. Rio, MA, Marriage & Family Therapist – A patient who attended the recent PWN/UCSF Virtual Patient Gathering – presentation videos are available here –  contacted me to ask for some guidance about finding mental health resources. We had a long conversation, but it left me feeling like I hadn’t helped much at all. Part of the challenge he faces is due to state laws governing who mental health professionals can see. There are just a few states that now, thanks to COVID-19 emergency orders, allow a therapist to “see” a patient in another state using telehealth technology. For example, I am licensed in California, and only with a few exceptions can I see someone who is physically located in another state. The reverse does not matter as I can go to another state and still see someone situated at the time of the psychotherapy session within California. This poses several practical and logical problems. If a patient/client leaves the state on vacation, I cannot then legally conduct a telehealth session. What if my patient has an intense psychological or relationship issue when on vacation and needs to contact me on an emergency basis? How can I know where my patients are located other than asking and hoping for an honest response? Often laws are passed to protect the public but then create other problems down the road. Most of these states passed these laws before the advent of widespread access to telehealth and an immediate need due to the unforeseen pandemic of 2020.

Many professional organizations are lobbying to have such laws changed, and some have temporarily due to COVID. But, patients, family, and other citizens can also write, email, text, call their state representatives to ask to have equal access across state lines as well. Elected representatives do listen to messages from their constituency.

Insurance regulations in the U.S. are often an impediment to patients getting the best medical and mental health care they need. This is especially true for anyone with a rare or specialty illness such as a pituitary disorder that requires extremely well-trained professionals who are often located not only at a great geographic distance but also may not be on a patient’s insurance panel. In some cases, appealing formally or informally with the insurance for an exception or requesting that an “out of network provider” be approved can be successful, mainly if the appeal includes that pituitary disorders need highly qualified care not typically provided under routine plans. Sometimes asking that a case manager be assigned and communicating with that person as your advocate can help.

The patient I spoke with on the phone faced a lot of these, and more obstacles. But what sparked my thinking about this was an idea he had that I found to be creative and innovative. He asked if there was some way that patients who may at times suffer a severe mental or emotional breakdown or even violent outburst could be more easily identified by police, mental health, or ER providers? We know that sometimes pituitary disorders can have accompanying severe mental health symptoms, including psychotic and manic episodes. National and local news reports have most unfortunately shown all too often that police and other first responders are often untrained in mental health emergencies resulting in physical harm, even death to those who appear dangerous but are, in fact, having a mental breakdown. In such cases, it is difficult for first responders to know how to protect the public, the person, and the police responding. There are no easy answers, of course, to what to do in such situations. But, for those pituitary patients who may have already shown aggressive, out-of-control behavior, for patients who suffer severe mood swings or more and are under the care of a physician who specializes in pituitary medicine, might they have options to protect not only themselves and others? I am not aware of any ID tag, badge, form letter, etc., but the man I spoke with asked if something like this existed or could help? I began to think that at the very least patients who fit the above category might want to proactively wear a medical alert bracelet/necklace, carry a letter from their doctor, and add such information into their smart phone’s Medical ID (can be accessed without a password by anyone, but patients must input the data).

We all want things to go smoothly and for medical. Mental health, emergency, insurance, and other providers to know what we need. And, all too often, a person with a pituitary disorder deals with lethargy, physical and mental exhaustion, and confusion, so being able to get through a day is all that is manageable. It may be asking too much that, in addition to dealing with hormones and medications that are out-of-control or haven’t yet begun to help, you also have to advocate for yourself. But advocacy is necessary, so sometimes family, friends, and advocacy organizations must step up.  

 Trying to change a law, insurance practices, medical research, community and police response policies, etc., are huge issues to tackle. These are what I call the “macro” level of systemic change. Patient advocacy organizations are making efforts to effect such significant changes. Some of these wonderful groups were featured at the PWN Advocate Round Table on Patient Engagement, Support, and Advocacy. You can access the discussion here.  Whenever possible, patients can also volunteer to support such organizations with their time and money, which can not only help that group’s efforts but for some can provide a sense of greater purpose. But systemic change happens on the “micro” level as well, with one person to another through relationship building, connecting even if only for a moment of sharing a fact or bit of information about a particular pituitary diagnosis or about pituitary disorders in general. Offering to be a part of medical or mental health research is also a way to contribute. Individual patients can do their part with as much effort that they can personally muster.

A micro-level of chance can include simply posing questions to doctors, insurance, etc., “Why?” or “What else can be done?” Or maybe it’s just having the courage to tell a friend or neighbor, or boss about your diagnosis. The “telling” is often a true act of COURAGE!

I also challenge anyone reading this to be creative in being part of solutions. Any person “doing” not only has the potential to help others but is empowering personally. The more active one is at “doing,” the less passive, victimized one feels by the illness and the system. Perhaps there are ways to change the systems locked into old ways. Perhaps there is a way to identify someone who needs a specialized kind of medical or mental health care through a technological device of some sort?

I don’t have the answers, but I applaud all who allow their creative minds to think outside the box, believe things can get better, and whenever they can do small things, feel empowered and engaged in finding solutions for themselves and others!

 

“Linda is in private practice in Westlake Village, California, and can be reached at

Linda M. Rio, M.A., LMFT (805) 619-0950  www.Lindamrio.com

Product DetailsHer book The Hormone Factor in Mental Health is available throughAmazon.com and other major booksellers.

© 2021, Pituitary World News. All rights reserved.

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