“Shssss……(she said so quietly)……I am on medication!”

She was 17 years old and came by the booth that I was hosting on mental health challenges.   Even before she whispered this to me, she had looked around to make sure no one else was listening.  I leaned in and she told me that she has been living with depression and finally she talked with her mom and found a therapist and therefore the medication.  Her depression had clinging to her spirit weighing her down for a long time.  But now she is engaged with others, a member of a church youth group, and has even had the courage to tell one of her closest friends of her struggles with depression.

I felt privileged that she would talk with me, a stranger, although I was at a church conference and I was at a display on mental health.  She seemed relieved to be able to speak, to name her situation, and to find a listening heart.

There are so many people, including young people, who are living in the shadow of mental health challenges.  They are in our families.  They are in our faith communities.  How can we offer the hospitality of spirit so that the sharing of such stories as the teenagers can be balm for healing and offer hope?

One of the easiest ways is by using caring and compassionate words in a clergy person’s sermons, homilies, or prayers.  While many congregations are not known for such welcoming of naming mental health challenges, they can be.  Using the words, “we pray for those who are living with bipolar disorder, schizophrenia, or major depression,” or “we pray for those who are battling addictions or mental illness,” or “we pray for those who are affected by mental illness, including their families and friends,” can be an open door for people who are living in the isolation of silence and to come out and speak or at least realize they are not alone.

When have you experienced such a welcome?  When has hospitality opened a door for you or someone you love to find a place where their spirit can be at home?  I don’t really know if the 17 year old girl felt better talking with me.  However, I surely did feel connected.  I have found myself telling this story so others may also be attentive to those times when chance encounters can lead to break the silence.  Out of the whisper a truth was spoken that led from vulnerability to strength.

Alan Johnson

 Interfaith Network on Mental Illness

 

Sibling Support – What’s Out There?

As a child growing up I never thought about the concept of needing “support”. I didn’t think about the fact that I didn’t know anyone who was experiencing a lot of the things that I was experiencing in my home. Maybe I did have friends who were also sibs to special needs kids, but if I did, I didn’t know it, because I was not aware that there was a need and so I didn’t talk about it. I was a kid trying to be a kid, plain and simple. I had no idea of the concepts of peer support, the need for validation, or a safe forum to ask questions that I had about my brother’s disability or what it meant for my family, for me, or our future.

It was when I got older, working in the fields of both mental health and developmental disabilities, that I felt a kinship with the siblings, admittedly more so than with the parents of the special needs’ kiddos, or even the person with the special need him or herself. It started to happen naturally, and frequently, that I felt good when I could tell it helped them when I said something that clicked – I would often get a look which I translated as “Oh wow, you understand?, “You get this??”, or “This is comforting”. And then they’d be on their way, or I would … out the door, and then I worried they’d be back in a void; a place where they could not speak openly or feel as heard. At that point I realized my life had been a bit different than my peers and that it sure would have been nice if someone had understood, and that things should change.

I then reached a point in my career where I felt fairly secure or grounded in how I would approach sibs and was lucky enough to make talking to them about these things a small piece of my work. But I also became obsessed with finding out what else was out there. What kinds of groups? Doesn’t anyone else realize this is a need? And I researched. What I found was both thrilling, and disappointing. There is very little available, which saddens me. It is still a field untouched and undiscovered, really. However, I also found The Sibling Support Project, and Don Meyer; someone who not only knew the need very well, but the man who took the extra leap and created the curriculum for Sibshops. Eventually, I took his workshop and now am a facilitator of these Sibshops in Colorado Springs, Colorado. There are many around the world. Below are a couple of links, with explanations of this issue, the need to address it, what Sibshops are, and how to find them. I highly encourage you to surf around, wherever you are. There may be a Sibshop near you, and if not, you may want to make it known to a local organization that you wish there was, and that you would want to partake in that service if it was available. Maybe you want to take the workshop and then facilitate them yourself! It is highly rewarding, FUN, challenging, and affirming.

http://www.siblingsupport.org/
There are so many places to go within this site. If you are a sibling of a special needs’ person, you could be here endlessly. Pay it a visit.

Some options:

You may click on “Sibshops”, then “Find One Near You”, and enter your country and state and see what pops up.

Or click on “Connect With Other Sibs” and find the various stories to read and maybe connect with, and there are also some very active online forums for sibs to join.

There are books under “Publications” (which can be life-changing; one in particular was, for me), or click on “Workshops” to see if a facilitator training is coming to your area.

www.rockymountainsibshops.com
A shameless plug at my own website, should you happen to be in the Pikes Peak region…. Even if you’re not, I invite you to click on “External Links” for some good Youtube videos and recommended publications which might serve you.

I have seen some change in the past year or two. I give most of that credit to Don and The Sibling Support Project, for raising awareness, and to the work of Sibshops’ facilitators in so many communities. It is a healthy start. There is so much need, and so much more room to grow. Please get involved. Chances are if you are reading this blog, you are involved at some level. I hope the importance of sibling support is ringing true with you and that you will seek it in your community and consider getting involved.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

 

Confidentiality Barrier

I hear many families complain that, when their relative is admitted to a psychiatric hospital ward, they can’t get basic information about him or her when they call the hospital. They are told that the information is confidential and protected by statute. What a frustrating situation for the family and what an obstacle to good patient care this must be! Common sense and common courtesy, at least, should tell the hospital staff that each patient, upon admission, should be asked if he or she would be willing to sign a release of information form allowing staff to communicate with specific family members. New patients are asked to sign plenty of forms. This could easily be one of them. This is rarely done, however, in US hospitals and clinics. Why is this so? Is it laziness, because talking to families takes time? Or is it a reflection of the often unrecognized stigma that even mental health professionals harbor inside?

We have to recognize an important element in this situation. In the US, hospital administrators and their lawyers are running scared since the introduction, in 1996, of the federal HIPAA Privacy Rule that prevents service providers (with heavy fines) from releasing confidential health-related information. At the same time, the Privacy Rule is balanced so that it permits the disclosure of health information needed for patient care and other important purposes. A simple release of information form signed by the patient, or the existence of an emergency situation that over-rides confidentiality, can satisfy the needs of the family, the service providers, hospital administrators and lawyers alike.

Whatever the underlying motivation, if you run into this situation, you need to know that, even without a signed permission to release information or the existence of an emergency situation, communication is still possible. You can always give information to the staff that they should have if they are to be able to understand their patient and to treat him or her properly. You can tell them, for example, about your relative’s behavior prior to the hospital admission that they may not know about because he or she is too guarded to mention it. You can tell them about your fears, your concerns, or what a wonderful person your relative is when not afflicted by illness.

Here is what the well-known American psychiatrist Robert Liberman has to say about this issue in his 2008 book, “Recovery from Disability”:

“Too many practitioners pay obeisance to a misguided conception of privacy and confidentiality. There is no violation of confidentiality when a clinician solicits information from family members. Can anyone picture an internist or surgeon failing to invite a close family member to provide confirming and converging information regarding the patient as a key element in diagnosis and choice of treatment? Relatives are lucky if they get in to see the professional responsible for the patient’s treatment, much less hear of the patient’s diagnosis and prognosis. Plainly speaking, relatives are ignored by mental health professionals.”

What can you do if you find yourself in this situation?

Number one: Be assertive. It is your right to know what is happening with your loved one. Take a stand!

Two: Ask the staff to ask your relative to sign a release of information allowing them to talk to you. Failing that, ask your relative to ask the staff to give him the same form to sign. If your relative declines to do this on Day One, ask again on Day Six or Seven.

Three: Remember, there is no law that prevents you from giving information to anyone on the hospital staff if you think it would be useful.

Four: Expect to be included in post-hospital discharge planning unless your relative specifically objects to your inclusion.

Let’s bring some sanity back to the mental health treatment system.
Dick Warner

 

Social Therapies

In the USA in the 1960s, the era of the Civil Rights Movement, the rise of Feminism, and President Kennedy’s Community Care policy, psychoanalysis became a country-wide fad. Much of Woody Allen’s humor was based on poking fun at psychoanalysis. More significantly, a personal analysis was an essential requirement for a chairperson of a Department of Psychiatry. Over the next several decades the pendulum swung away from psychoanalysis towards biological explanations for psychiatric disorders, partly as a result of technological advances in brain imaging and genetics, but also due to the campaigning of the large and powerful pharmaceutical companies. Today psychoanalysis is almost extinct in the USA. The emphasis on an exclusively biological basis for schizophrenia generated a mind-set inimical to the notion of recovery.

There was never such a wholesale commitment to psychoanalysis in the UK, where the number of analysts has not exceeded several hundred for a population of 55 million. Furthermore the majority of analysts live in the major cities, and there is only a handful in the north of England. The dominant ideology in mental health has been a social approach, the pioneers of which were active from the 1930s, establishing community services before the advent of psychotropic medication. The founding of the National Health Service in 1948 provided a basis for social therapies such as rehabilitation, with an emphasis on recovery from psychiatric illnesses including schizophrenia. From the 1950s onwards, successive governments of both the Right and the Left supported a policy of deinstitutionalization, which has been effective in reducing the number of psychiatric hospitals in England and Wales (Scotland has its own Department of Health) from 130 to less than a dozen. The discharged long-stay patients are living in much improved conditions with greater freedom, and there has been almost no homelessness, or victimization.

The emphasis on a social approach in the UK has led to important advances in the non-pharmacological treatment of schizophrenia. These include professionals working co-operatively with family careers and patients, with a reduction in relapse for the most vulnerable patients from 50% over 9 months to 10 %. British psychologists have adapted cognitive behavior therapy, developed in the US for depression, for the treatment of schizophrenia, with a reduction in delusions and the distress due to auditory hallucinations. Recently a computer-assisted therapy has been developed for the treatment of auditory hallucinations resistant to medication, which has been effective in reducing the frequency, volume and malevolence of the voices in many patients. A minority even ceased to hear the voices altogether. These social therapies do not abolish the need for antipsychotic medication, but are free of side effects and produce improvements in the symptoms that enable patients to re-establish productive and satisfying lives.
Julian Leff