Life at the intersection of health and mental health: More is better

Before you read this blog post, take a look at the photo gallery to the left. It's only two photos...

All my breast cancer material (all three and a half pounds of it!) was loaded into a pretty cloth bag and sent home with me. A few days later when I was ready, I went through each and every piece in that bag. I was given information about treatment, chemo and radiation therapy; information about diet and exercise; information for my nonexistent significant other (but it was kind anyway); information about hairpieces and wigs; and information about transportation and other services I could access. So OK, it was a little overwhelming to be thinking about what kind of wig I might want when I was not sure I would even be going through chemo or would ever be losing my hair. But let's be honest – I was thinking about it already. I was worrying about what radiation and chemo would be like. Why not have access to the resources so I would be ready in case I needed them? Why is sitting there letting me worry about it better than giving me information, options, and resources? As I shared each piece with family members, they too felt more prepared, were less fearful and more ready to help me as we went through this journey.

Translating that to mental health, why do we seem give nothing or next to nothing to mental health consumers? How could anyone think that less information is helpful? I am in conversations almost daily where people are considering what might help behavioral health consumers become more empowered and activated. I always ask what written materials are being given to the consumers in the system. The answer is almost always none. 

Written materials are important because often we cannot remember what the provider said in the office – we were overwhelmed, the information is technical and scary. Having something in writing to take home makes a big difference. We can review the materials when we are ready.  We can share them with our families. We can reread and consider them when we are getting overwhelmed and feel hopeless. 

Think the lack of access to written materials in behavioral health is not an issue? One of my colleagues did a series of focus groups across a state that had a good reputation for being progressive in how they empower consumers. We were astonished to discover that very few of the consumers in any of the focus groups knew what their diagnosis was, what treatment options they had, what their medications were supposed to do and what the potential side effects of those meds might be. We also did a survey when I was at DBSA that showed that consumers almost never received written materials from their providers – even though that is the source they were most comfortable and confident with. If we want engaged and activated consumers, the very least we need to be doing is giving them basic information.

One more story to illustrate the point, I once gave my then provider about 200 copies of DBSA brochures for this person’s waiting room. I gave them not to promote DBSA, but to help my peers. They were brochures that said things like “Just diagnosed?”, “Helping a family or friend with depression” and others that had been written by consumers and reviewed by our prestigious scientific advisory board for accuracy and tone. The box sat under the patient chair next to this provider’s desk for over a year until I suggested they give them back to me. Providing patient education materials was just not a part of this person’s thinking or processes. I found that very sad.

Sometimes when I raise the issue of providing patient education materials, I am told, “that is the job of the advocates, they need to print and distribute those materials free of charge.” OK, but when I had responsibility for leadership at DBSA and had to worry constantly about making budget (and payroll for that matter) I often thought about breast cancer fundraising. Everyone donates to breast cancer. Companies make breast cancer donations when I buy my makeup and paper towels, personal hygiene product and sweatshirts. I am invited to donate when I pick up my groceries or my medications. I am approached with donation canisters on the street and in my car. Not so much for mental health.

Despite the very best efforts of DBSA, NAMI and others who use their limited funds and influence to raise awareness, to approach donors, corporations and media, mental health fundraising is still a huge challenge. Unlike cancer, no one donates a dollar to mental health when buying something. No one stands in front of the grocery store or lets us place a canister next to the cash register for mental health. NAMI has done great work with their walks and events. A non-advocacy group led suicide walk at one time got a lot of media attention and did some fundraising. But despite this great work, mental health fundraising is extremely difficult. 

I used to think that at least the people who went to our support groups or visited our website would donate because we helped, right?  Nope, almost never. And surely the professionals who work in mental health would donate?  Sadly, even less often. And I used to watch with frustration as yet another celebrity would talk about their struggle with mental health and never turn that toward raising funds to help others. Or if they did, it was to start yet another tiny mental health advocacy organization with their name attached to it where money went primarily to cover administrative overhead.  (Obviously there are exceptions to this observation such as the amazing work Glenn and Jessie Close are doing with their foundation Bring Change 2 Mind https://www.bringchange2mind.org/ ) So until those of us living with and in recovery from mental health issues start donating, until our providers and our families start donating, until celebrities do more than just gain PR off of their experiences, and until corporations start seeing mental health as donation worthy – until there is money coming in for mental health as there is for breast cancer – there is no way for our advocacy groups like DBSA, NAMI, the Federations of Families and many other great advocacy groups to provide these kinds of written materials free of charge to hospitals and practitioners.

More information is better. Yes, I can get information on the web, but a search of breast cancer also tells me to cure it by taking a quick trip down to Mexico to visit a shaman. The quality of information on the web is sometimes an issue for both mental health and cancer and so too is the stigma and shame that is still attached to mental health that keeps us from wanting to admit the illness is real and keeps us from doing that online research. 

Being given written information about breast cancer by a trusted source was empowering and reassuring. It helped both me and my family. How can we do the same thing within behavioral health?