vrijdag 11 september 2015

Honesty, human connection, and hope can be powerful medicine. Impressions from the Netherlands by Lisa Smusz

Tijdens onze eerste Krachtwerkontour leerden wij Lisa Smusz kennen, een ontmoeting die grote indruk op ons maakte, dusdanig dat wij haar tijdens de tweede Krachtwerkontour nogmaals bezochten. Toen wij haar leerde kennen was zij directeur van PEERS, nu is zij zelfstandig consultant. Tot onze grote vreugde was zij deze zomer in Nederland. Tijdens haar bezoek heeft zij een masterclass verzorgd voor WRAP facilitators en 's middags een lezing gegeven over stigma en zelfstigma bij ervaringsdeskundigen en professionals. Een verslag van deze middag volgt, maar hier alvast de impressies van Lisa tijdens haar bezoek, samen met de bronnen waar zij naar verwees in haar presentatie.

“May I have your bracelet?” asked the tall and rather serious looking gentleman with a heavy Dutch accent. I must have looked confused because he repeated the question.
“Your green bracelet, may I have it?” he repeated, pointing to the Each Mind Matters lime green bracelet I wore on my wrist.  I am distracted, prepping for the QA session following  a speech to approximately 100 people working in the mental health field at Hogeschool van Amsterdam about stigma reduction when he approached me from the audience.

“Sure” I said, still a little confused, as I started removing the bracelet from my wrist to hand to him.

“I’m homeless because I had problems with my mental health and could not work anymore,” he explained, “My case manager picked me up and told me I should come to this lecture. I didn’t have anything else to do, so I agreed.  But being in this room, with all these people who have had gotten well, or who work with people who get well, makes me think this is not my destiny anymore. I want your bracelet to remember this, and someday I will be well and will be helping others. When this happens, I will give this bracelet to someone else who needs hope.”

Finding no words that seem appropriate, I can only smile at him and press the bracelet into his hand for a moment.

It was not the first time I was profoundly moved during my visit to the Netherlands. I had spent the previous week visiting sites and people that gave me a thought-provoking glimpse into how people from this side of the globe view, live with, and treat mental health issues through art, education, stigma reduction campaigns, and peer delivered services.

 (just outside Amsterdam) is a museum set in a former mental institution, showing how the Netherlands has dealt with mental health problems throughout the centuries. It is provocative place with visceral art and interactive exhibits that challenge visitors to think about the boundary between what we consider “normal” and “abnormal.” It is both thought-provoking and intentionally disturbing at times.

In contrast, my visit to the Pitstop Zorg Hotel  left me feeling hopeful and impressed with its humanity. Set in an affluent part of town, the lovely three story hotel is set up to provide a retreat for people living with mental health issues. People can self-refer or be referred by mental health professionals or loved ones when they need an “opportunity to refuel.”  The hotel is bright and homey with high ceilings, lots of natural light, and simple comfortable furnishings. Rather than wards or dormitory style rooms common to many residential facilities, each person is referred to as a guest and has their own private room and access to a shared bath as well as a communal garden and picnic area in the back. Cooking, cleaning, and laundry services are provided for the guests by volunteer and paid staff, most of whom are living with a mental health issue themselves. Many of the guests use the facility and the support of the staff to regroup during times of stress or difficulty and find it very helpful in reducing the need for higher cost traditional mental health facility stays, but the service is not paid for by medical coverage. Guests instead pay for the services themselves at highly reduced rates (€ 32.00 for private room plus breakfast, lunch and dinner). Those who cannot afford a stay may be eligible for a scholarship to stay from a philanthropic organization.

As I was leaving the Pitstop I noticed that we were in a quite affluent residential district, and wondered aloud to the Program Manager if the neighbors received them warmly or were skeptical.

“There was misunderstanding and concern at first,” She replied, “But we work very hard to be a positive influence in the community. During the week our kitchen staff make enough dinners for all the families living nearby to take home. They come and pick up dinner for free here and see us and meet guests. It makes for good neighbors.”

Overcoming barriers and changing attitudes is also the central work of the Netherlands stigma reduction campaign Samen Sterk ZonderStigma, focusing especially on sharing stories of people with lived experience via their ambassadors program, a special project to work with employers and employees to create more supportive workplaces, as well as their efforts to reduce stigma within health care and mental health care practitioners and organizations.

It is this final area of stigma reduction within mental health practitioners that brought me to Hogeschool van Amsterdam.  We are discussing how mental health professionals are not immune to holding stigmatizing attitudes, and how the integration of people with lived experience as providers of mental health services can promote a more hopeful and supportive mental health system.

I came expecting significant differences, but what I found was a commonality again and again: the questions and struggles of the audience members with their work and stigma, and the glimmer of hope expressed by the man who wanted my bracelet. Wherever we are on the planet people struggle with mental health challenges, fear what they don’t understand, and some try to change and improve their communities. And here in the Netherlands, just as it is back home in California, honesty, human connection, and hope can be powerful medicine.

I smile at the man wearing my bracelet in the audience and I feel hopeful that more and more of us are beginning to realize that there is no “normal vs. abnormal,” it’s just us … it's all just us, wherever we are in the world.

Resources on stigma-reduction:

Follow up research on the Each Mind Matters Campaign:
RAND Corporation released three reports, which resulted from their independent evaluations of CalMHSA’s programs and demonstrate the progress made in California in stigma reduction and suicide prevention. Below is a brief description and key findings from each and attached are the full reports and supporting tools for outreach.
Read RAND’s press release: http://www.rand.org/news/press/2015/05/18.html

Summary: Across one year of the California Stigma and Discrimination Reduction (SDR) initiative, the stigma of mental illness decreased in important ways. State residents became more aware of stigma and more accepting and supportive of those with mental health challenges. The methods in use by the SDR initiative have the potential to touch the lives of nearly every Californian.

Summary:  RAND estimates that California will benefit from CalMHSA’s investment in ASIST in multiple ways: fewer suicide attempts and deaths, reduced spending on emergency care and recovery, and increased earnings. After calculating the associated state income tax revenue from increased earnings and the state government’s portion of reduced health care spending, RAND projects a positive financial benefit for the state government.

Report: “Adults Newly Exposed to the “Know the Signs” Campaign Report Greater Gains in Confidence to Intervene with Those Who Might Be at Risk for Suicide Than Those Unexposed to the Campaign”
Summary: A mass media campaign intended to help prevent suicides in California is reaching a majority of the state’s adults and appears to be increasing their confidence about how to intervene with those at risk of suicide, according to new RAND Corporation research.

Public service announcements created in partnership with beauty brand philosophy’s hope & grace initiative. Over the past couple of months, we worked with more than 70 actors, producers and entertainers to create the “We are the movement for mental health” series of 5 PSAs that support May is Mental Health Matters Month. Please use this link to view the PSAs: http://bit.ly/1QQ3qig.

Toolkit for raising awareness and combating mental health stigma:

Each Mind Matters webpage for those who wish to share their story with others: http://www.eachmindmatters.org/get-involved/share-your-story/

Pilot Website to assist employers wishing to hire Peer Support Workers in integrated health settings:
Peer Leadership Institute webpage where outsiders can view past trainings recorded and available online: http://mentalhealthworkforce.org/pli

The Harvard panel on stigma as a global health issue: To read the archived panel discussion visit: http://www.ghdonline.org/mental-health-stigma/discussion/addressing-mental-health-stigma/

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