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.