Subscribe X
Back to Top

Learn

November 22, 2016 by Sandra Steingard, MD

Moving ahead in troubled times

The Foundation for Excellence in Mental Health Care was founded in 2011 with the hope of expanding what many had come to believe was a narrow and faulty understanding of psychiatric conditions.

The immediate impetus was the work of journalist Robert Whitaker who had raised several critical – and to many – startling questions about standard care.

In his book, Mad In America, he chronicled the history of treatment of the most severely afflicted mentally ill* people in the US and detailed how time and again promising treatments proved to be not only ineffective but also, in many cases, damaging.

In his book, Anatomy of an Epidemic, he raised the possibility that this had once again occurred in the modern era; that the drugs heralded as lifesaving and revolutionary were less effective than commonly believed and, of even greater concern, might worsen outcomes. At the end of the book, he discussed approaches that were less well known but had shown remarkable promise. This included Open Dialogue, developed in northern Finland in the 90s, and Soteria, developed in the US in the 70s. The frustration was that current funding sources for research were more interested in figuring out the workings of the brain – in hopes this would lead to better treatment – than to studying these decidedly less technological approaches.

Several philanthropists came together with the hopes that EXCELLENCE might bring new funding sources to people who were interested in studying these different approaches. The hope was to fund research and develop innovative treatments that were being neglected, discounted, or ignored. EXCELLENCE was designed as a community foundation. The idea was that donors could develop their own funds and direct the money in various ways.  Given the many areas of potential promise, this big tent approach seemed to make sense.

Five years later, our board met to plan for the future. It is impossible to do this without looking back at our past.  I had the honor of being elected chair of the board at this meeting. While I hope this post accurately reflects our discussion, it can’t help but carry my own particular take on what turned out to be an impassioned conversation. I welcome my fellow board members to chime in with their own perspectives. I am influenced by my training in Open Dialogue. This is an approach that values polyphony, i.e., not only hearing but acknowledging that there are many voices in the room.  So while I will try to reflect our collective voice, I also acknowledge I ultimately can only truly speak from my personal perspective.

While we will continue as a community foundation, we felt the need to clarify our focus. After hours of discussion, we came to some clarity about the areas that were most vital to our mission. We called them our “buckets” and will use these as touchstones to both clarify our goals and explain our mission.

Cultural and System Change/Advocacy

As noted above, we believe that it is vital to reframe the very nature by which we talk about the kinds of distress that land people in psychiatrists’ offices or mental health clinics. We have a system that is predicated on a medical understanding of these problems and we do not believe this serves us well. In order to shift funding, we need to shift the conversation.

I have recently been introduced to the notion of epistemic authority. This refers to who holds the authority for knowledge, how we think about things, and, in a fundamental way, how we decide what is “true.”  Currently, psychiatrists and neuroscientists are considered the ultimate in epistemic authority in this area and if one challenges their views one is considered suspect. We would argue that there are many valid areas that are ignored because those who have the authority have discounted their legitimacy. It is, therefore, vital that we mount a concerted effort to promote data that is ignored. This includes not only underappreciated or unrecognized research but also the many voices of those with lived experience who have found paths to recovery that are not recognized. One of our goals is to give these perspectives voice and in so doing advocate for cultural and system change.

Children’s Advocacy/Loving Children

One of the most powerful moments of our retreat was when our wonderful board member, Giovan Bazan, made an impassioned plea for the children. Gio’s own story is one of remarkable perseverance and resilience. He was placed in foster care at a young age. His painful response to the traumas he had experienced was diagnosed as mental disorder and he was medicated. At age 18, he stopped taking the drugs and he has made it his mission in life to help the children who are having similar experiences today. He spoke of friends who had been less fortunate than he and had not survived. He implored us to join him in his work and we have agreed that attending to the needs of children and youth remains a core value of the Foundation.

Slow Psychiatry/Psychiatric Reform

As I mentioned above, Robert Whitaker’s writing on the problems with long-term exposure to psychiatric drugs was a reason EXCELLENCE was formed. In the past few years, I have written and lectured about my own evolution in this area. I have used the term Slow Psychiatry – I first heard it used this way by our board member, David Healy, MD – to argue for acknowledging with our patients and the public the complexity and uncertainty inherent to my profession. While we are pushed to make rapid diagnoses, see more patients in shorter intervals, and base our treatment recommendations on quickly administered rating scales, I argue that the diagnostic and therapeutic uncertainty inherent to modern psychiatry requires us to slow down and spend time with people and their families so we can talk together about what may or may not be useful. This is not a position that is anti-medication. It is a position that is transparency. It is a position that acknowledges that there is so much we still do not know; we do not know who will and will not benefit from treatment, we often do not know how to best understand the problem.

Another facet of research we are supporting is nutritional approaches. Bonnie Kaplan, PhD, and colleagues have been studying the effects of micronutrients in improving mental health for decades. This is a promising and emerging area that has also been hampered by lack of funds. This is in no small part due to the fact that nutrients cannot be patented in the way that drugs can. A foundation may be the only way to support this work since the large assets of pharmaceutical companies will not be put into this area.

Innovative Approaches/Treatments

If we move away from a drug-centric approach to treatment, what else could be helpful? This is the final area of focus for the Foundation. We are one of the largest funders of Open Dialogue studies and programs in the US. In northern Lapland, they have reported remarkably good outcomes in people who are experiencing first episode psychosis. If this can be even partially replicated, the potential savings – in terms of reduction of long-term disability – are enormous. But the startup costs are also high and with the federal government backing away from supporting treatment studies, especially those with a less technological bent, a foundation remains the sole source of potential funding.

Similarly, the Hearing Voices Network has been of great value in Europe and around the world. The Foundation has funded a large program to train groups across the country including veterans returning from the wars in Iraq and Afghanistan.

There are other emerging and promising innovations; many of them designed by people who have themselves experienced extreme emotional states. These need to be funded and the Foundation sees itself as critical in this area.

We left our board meeting energized but worried about the daunting task we have set for ourselves. Our board includes remarkable people who come to this from many perspectives – people with lived experiences, family members, world-renowned researchers, administrators, and clinicians – who have become dismayed by the state of our services today.  But we cannot do this alone. Please join us. We can change the world together.

 

*On the use of the term “mentally ill”: I am challenging the medicalization of the problems we call mental illness yet, by using this term, I am medicalizing. The problem is that I do not have an alternative term that is well understood by a broader population. This is yet another challenge. Please accept my apologies for the failure of more creative use of language.


Dr. Sandra Steingard is Medical Director at HowardCenter, a community mental health center where she has worked for the past 21 years. She is also clinical Associate Professor of Psychiatry at the College of Medicine of the University of Vermont. For more than 25 years, her clinical practice has primarily included patients who have experienced psychotic states. Dr. Steingard serves as Board Chair of the Foundation for Excellence in Mental Health Care.

6 thoughts on “Moving ahead in troubled times

  1. To me this initiative for excellence in mental health is one more important endeavor in the field, especially with the obligation to fund research in the field, that Sandy described so well.
    Some of us might be members of various groups working in field, looking at it from slightly different perspectives, so it might be of use how these groups could profit from each other, as they seem to be widely spread across the globe. So my question is, whether you are looking for members or if it is about the board of the foundation? And I guess that some of the members are networking already( ISPS- US, or international, international society for Philosophy and Psychiatry, and sure alot more? ls there any policy about that?

    1. Gina Nikkel says:

      We don’t have a written policy about working together and change in the mental health care field that our Foundation’s Board of Directors wants to see is certainly not about our board but is based on feedback that we have gathered over the last several years. We are on the same team! Our general policy is that we don’t accept pharmaceutical money and we invite many people to blog about their experiences both as a receiver of services and a giver of services. Open Dialogue is a cornerstone project for us to develop and nurture in the U.S. as is the Hearing Voices Network. We also fund research and many other trauma informed, recovery bases initiatives. Of course, we are a community foundation which means people from all over the world must donate in order to fund the projects that our Board/Scientific Advisory Committee thinks is important or that our fund advisers think is important. We definitely are here to work together…..we are like a community mental health development bank.

      Let’s keep the dialogue open how we might work together further……raising financial capital will help us move closer to funding programs and research that people want funded.

      Thank you for your comment!

  2. Jacek/Jack A. Haciak, Psy.D. says:

    Wonderful and hopeful vision for the future.

    And as a matter of practical importance, not only giving voice to those with lived experience, but refocusing everyone on the important central value that each person is entitled to be the final arbiter of their own recovery process. At a system level, it is the Recovery/Peer community which fosters best the trust and relationship factors which are the key components for healing. If we want to put things right, we need to acknowledge that for the purpose of healing, peers are at the pinnacle of the roles providing meaningful recovery and wellness.

    1. Gina Nikkel says:

      Jacek,

      I couldn’t have said this better myself. Peers are definitely at the pinnacle of the roles providing meaningful recovery and wellness. We have much work to do to ensure that this is standard operating procedure at all system levels.

      Thank you for your comments!

  3. Al Galves says:

    This is a very helpful description of the focus of FEMHC. Thank you for writing it Sandy. I am particularly interested in the Cultural and Systems Change/Advocacy and the Innovative Approaches/Treatment initiatives. I think it is vitally important that we begin to explore, limn, consider non-medical ways of understanding the essential nature of the states of being which “land people in psychiatrists’ offices or mental health clinics”. If we don’t understand these states of being we will have a hard time treating them effectively. And I think much can be gained from working with the people who control public funds for mental health treatment to help them move towards paying for treatments like Open Dialogue and Soteria that are more safe, humane and life-enhancing than the present standard of care.

  4. Bhargavi V Davar says:

    Can we still apply for the global mental health fund? We are working out of Pune, India, and have great opportunities for innovation.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.


Related Blogs

  • Dr. David Healy

    Dr. David Healy

    Dr. Healy is a professor of psychiatry at Cardiff University in Wales and an author on the history of pharmaceuticals and government regulation.
    READ BLOG
  • Mad In America: Robert Whitaker

    Mad In America: Robert Whitaker

    Journalist and author Bob Whitaker distills the latest in pharmaceutical and mental health research.
    READ BLOG
  • Selling Sickness

    Selling Sickness

    Creating a new partnership movement to challenge the selling of sickness.
    READ BLOG
  • Kathy Brous

    Kathy Brous

    A serial of Kathy's recovery journey as an adult with attachment disorder.
    READ BLOG
  • Nev Jones

    Nev Jones

    Exploring the intersections of psychiatry, philosophy, neuroscience, cultural theory, critical community psychology and the mad/user/survivor movement.
    READ BLOG
  • 1boringoldman

    1boringoldman

    Retired psychiatrist and raconteur offers insightful analysis of the day's events from the woods of Georgia.
    READ BLOG