JUNE 2019
Please Note: We have made a change to the NAMI Support Group Schedule. The twice monthly meeting at the NAMI Office for family members effected by Dual Diagnosis has been discontinued. If you have a loved one you are supporting with their struggle of both a mental health condition and substance abuse, we will be offering an educationally based program designed to help you better prepare for that role. Please contact Kim Lemmon, Director of Family Programs, at 508-778-4277 or
klemmon@namicapecod.org
for more information
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From the desk of Jackie Lane, Executive Director NAMI CC&I
Here at NAMI CC&I, we are in the midst of developing a five-year strategic plan including a review of our mission and vision statements. It is an interesting exercise to review where we were three years ago, where we are now, and to explore where we want and need to go in the future. A good strategic planning exercise necessitates a collaboration of Board, community, and senior staff and affords the Executive Director an opportunity to reach out for ideas and input from multiple sources.
In addition to exploring new community programming and individual/family programming we are working to increase our capacity for support calls as well as the mechanics of record keeping that is an important aspect of that part of our daily operations. As our mission statement reads and we always say, NAMI CC&I is about Education, Support, and Advocacy. For me, as the Executive Director, the issue of ADVOCACY has risen to the top of the list recently as I have been attending outside meetings and have been appointed to some committees that are trying to address the most pressing problems in our community. Sitting on these committees and in these meetings and listening to the people who work in the various agencies has made me realize that we at NAMI CC&I are in a unique position when it comes to having a broad overview of the mental health system.
Those who work hard within the system concentrate on doing their part and the issues involved in their piece of care. We and our clients experience a system that lacks integration within itself as well as integration with the other components of health care. In addition, since we try to find “pathways” for our clients to follow, we see the glaring holes in those paths, including the lack of acute care beds and partial programs for children, the lack of continuum of care beds for adults, the lack of good step down facilities and housing as well as the lack of therapists and other wrap around services required in order for individuals who need some assistance to lead a life in the community.
In addition to the lack of certain services and the scarcity of others, there are many barriers including confusion on how to gain entry into the system and the multitude of insurance issues, both public and private. Is there something intrinsically wrong with a system that when speaking with a person of a family in crisis, one of the very first questions we have to ask is about their insurance coverage?
From a “big picture” point of view, NAMI CC&I plans to record and map the demographic picture of the 15 Cape towns and the islands, identify the services readily available in each area and then systematically look at the holes, the needs that must be filled in order to be able to navigate a system of continuing care for children, adults, and elders who have mental health needs.
As I mentioned above, a part of the strategic planning process involves reaching out into the community for information. I welcome information from you about experiences with the system as it exists and ideas of how to make it fit the needs of our community. You can email us at
info@namicapecod.org
or call us at the office – 508-778-4277. We have to do better for the one out of five people who are experiencing a mental health issue at any given time in this country and on Cape Cod and the Islands of Martha’s Vineyard and Nantucket.
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ADVOCACY
From the desk of Mary Zdanowicz, Esq
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For years, states have struggled with the challenges of keeping contraband out of psychiatric facilities. But the changing demographics in state psychiatric hospitals have made this issue more urgent. The lack of hospital beds has resulted in a patient population that is more dangerous. The increase in illegal drug use, compounded by the introduction of the lethal substance fentanyl, has increased the risk of fatal overdoses in hospitals.
In June alone there were reports from four states, including Massachusetts that are trying to reduce contraband, such as drugs and items patients might use to hurt themselves or others. New Jersey hosted a forum for the public last month to discuss the risks that patients and staff face in one its psychiatric hospitals. The dangers of contraband were discussed:
“Some patients, several said, are terrified of other patients who commit or threaten acts of violence; they also smuggle drugs, steal personal items and contraband including cigarettes, which "go for $3 apiece" on the black market of the no-smoking facility.
‘They'll take anything,’ one former patient said of patients she encountered there.
Another woman said her daughter was traumatized several years ago by an incident during one of multiple stays at Greystone, in which she witnessed her roommate overdose on heroin.
‘The boyfriend snuck in a syringe,’ the mother said. ‘He had it in his shoe. She injected it and overdosed, the needle still in her arm. My daughter has a history of substance abuse, so it was hard for her. And it shows you how easy it is to get stuff in there.’”
Massachusetts is struggling with these issues as well. This year, two patients overdosed on drugs and died at the Worcester Recovery Center and Hospital. In one case, a patient overdosed on cocaine laced with fentanyl that had made its way into the facility. Drugs are particularly problematic because it is so difficult to detect smuggling.
After trying several interim contraband policies over the last few months, a new policy will be implemented at WRCH beginning July 1. 2019:
At WRCH, safety for all individuals continues to be our priority moving forward. I am writing to update and inform you of next steps as our plans and practices evolve.
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All individuals engaged in discharge planning including passes and overnights will continue to be reviewed by treatment teams and administration, and prioritized for approval through the Independent Access Review process.
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Effective July 1, 2019, visitors may be allowed to bring in additional items for patients. These items will be identified by patients and treatment teams in support of their recovery and in line with the Search Policy Contraband Guidelines. Options for patients to again access takeout food are being reviewed by administration.
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The use of drug sniffing dogs will be implemented at WRCH in early July 2019. The dogs will be used on a random basis with an immediate focus on mail, visitors and patients.
We hope these measures will be successful in reducing the risk to patients and staff.
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Cape Cod Healthcare
NAMI CC&I was pleased to hear from
Michael Lauf, CEO of Cape Cod Healthcare, that CCHC has agreed to be the premier sponsor of the Siobhan Leigh Kinlin Memorial Golf Tournament, our major fundraiser, for the next three years.
We are also especially pleased that, through this important sponsorship, Cape Cod Healthcare is showing their support and appreciation of our work in education, support, and advocacy in the Cape and island communities. We look forward to continuing our strong collaboration with the Behavioral Health Department of CCHC as we work together in bringing mental health care to our clients.
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With the onset of summer comes a population explosion, making it even more urgent that our residents and visitors know about NAMI programs and support groups and how to access services through the William James Interface Helpline. I’ve learned that no matter how well one thinks they have advertised or promoted or talked about NAMI, there is always the group or individual encounter where the question is asked; “what’s NAMI?”
Executive Director Jaqueline Lane recently spoke to the Nantucket Rotary Club on this very subject and together we will continue to spread the word about mental health and wellness. Nantucket, like many communities, contends with more clients than available clinicians and we are very fortunate that our therapists consistently step up to the plate, often splitting their time between organizations to connect people with care.
Next month we are adding a daytime NAMI support group to give people the choice to drop in during the day or at our Tuesday evening meeting. We are also preparing to partner with the school district to provide information at the start of school in September to teachers and parents about Basics and Family to Family classes and other community supports.
Enjoy the start of summer and spread the word; mental health matters, you matter!
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Ahhhhh, summer has arrived. Sure, it gets a little hectic and crowded with all the tourists, but I’ll take warm weather and tourists to winter’s cold and empty streets with easy parking.
June has been a quiet activity month after the action-packed Mental Health Awareness Month. Although Family-to-Family is over, and we had no major events in June, we have been busy planning for upcoming fun.
I’m thrilled to announce that NAMI MV was selected by Darkness Into Vineyard Light to be the beneficiary of their Suicide Prevention and Awareness Walk in September. Last year hundreds of people walked and we’re expecting even more this year. If you’d like to join us, here’s the registration link:
http://www.namicapecod.org/DarknessintoVineyardLight
Note: The Walk begins at 5:30 am, walking in the dark on the road along the beach as the day begins to dawn. The walk is about two and a half miles, and ends perfectly as the sun is rising over the water. The symbolism – our loved ones coming out of the darkness of in their minds and stepping into the light of hope – had many of us shedding joyous tears at last year’s walk.
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FOCUS ON DEPRESSION
We asked Dr. James McGuire, a psychiatrist and a member of our Board of Directors, to comment on and to give us some resources to pass on, about DEPRESSION, as a mental health issue. Dr. McGuire made the following points:
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Major Depressive Disorder, as outlined in DSM 5, represents the highest burden among mental health disorders.
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The World Health Organization states that more than 300 million people worldwide suffer from depressive disorders.
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Major Depressive Disorder is a heterogeneous disorder with multiple factors contributing to the pathway of the diagnosis.
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No single cause for depression has been found.
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One third of those with depressive disorder have not responded to treatment which has been referred to as Treatment Resistant Depression.
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New treatments are being tested and evaluated including Trans Cranial Stimulation, Vagal nerve stimulation, and additional drugs such as ketamine.
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Depression is a symptom that all is not well in the body and is a warning to modify our behavior as, if not brought under control, it can lead to disability or even death.
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Many pathways and factors lead to Depression including genetics, unmanageable stressors both physical and social, and disease state of both mind and body. (Randolph Nesse, MD)
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Understanding and attending to and promoting of what we know fosters positive physical, social, and emotional wellbeing are important adjunctive treatments for depression. (Randolph Nesse, MD)
The following are some web links and articles that Dr. McGuire deems useful and has chosen to share:
What is Treatment Resistant Depression? What Do We Do about it?:
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The Boy Who Was Raised As A Dog
And Other Stories From A Child Psychiatrist's Notebook
By Bruce D. Perry, M.D., Ph.D. & Maia Szalavitz
What Traumatized Children Can Teach Us About
Loss, Love, and Healing
"About 40% of American children will have at least one potentially traumatizing experience by age 18 including death of a parent or sibling, ongoing physical abuse and/or neglect, sexual abuse, the experience of a serious accident, natural disaster or domestic violence or other violent crime," Although it was once believed that children were endlessly resilient and thus immune to the damage of traumatic experiences, researchers now have a better understanding of what trauma does to the developing brains of children.
In
The Boy Who Was Raised As A Dog,
Dr. Perry tells the stories of numerous children who experienced horrific situations, including the boy who was raised in a cage with dogs, who recovered through "patterned, repetitive experience in a safe environment...medications and therapy alone cannot do the job. Relationships are the agents of change and the most powerful therapy is human love."
Dr. Perry and his colleagues at the Child Trauma Academy, have done an amazing job combining the science of the brain with caring psychotherapy to repattern the brains of some of the most damaged children. Although it is sometimes difficult to read about the unbelievable damage done to children, his amazing successes give all clinicans a better understanding of how to help children.
Review by Arlene Hoxie
NOTE: Dr. McGuire has suggested some resources as adjjuncts to this book:
Adverse Childhood Experiences (ACEs): Impact on brain, body and behaviour
Adverse Childhood Experiences by Vince Felitti, MD - 13 minute version
How childhood trauma affects health across a lifetime | Nadine Burke Harris
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RESEARCH WEEKLY: Schizophrenia Over-Estimated as a Genetic Disease
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Researchers have been significantly over-estimating the involvement of genetics in schizophrenia, according to a provocative new paper written by Treatment Advocacy Center founder Dr. E. Fuller Torrey and board member Dr. Robert Yolken.
Combining heritability results from population-based twin studies, excluding those with methodological issues or highly-controlled sampling, Dr. Torrey and Dr. Yolken conclude that the heritability of schizophrenia is much lower than genetic researchers claim. Heritability is how much of the variability of a particular trait is due to genetics as compared to environmental factors.
For example, a 75% heritability in hair color suggests that 75% of the hair color of an individual is due to their genetic makeup. The authors calculate the heritability of schizophrenia to be 28%, much less than the 80-85% claimed by some genetic researchers.
Pseudo-genetic characteristics
In addition to detailing the limitations of genetic research studies on schizophrenia, Dr. Torrey and Dr. Yolken suggest one of the reasons heritability has been overestimated in schizophrenia is due to pseudo-genetic characteristics of the illness, or non-genetic factors that produce results similar to genetic ones, that may mislead researchers.
Dr. Torrey and Dr. Yolken have long researched the role of infectious agents in schizophrenia. Through their work and others, an infection by Toxoplasma gondii, a parasite commonly found in cat feces, has been shown to be associated with schizophrenia. Research has also shown that increased exposure to the parasite is associated with recent-onset of psychosis.
Toxoplasma gondii infection, known as toxoplasmosis, also clusters in families because of shared environments such as infected water supplies or the sandbox in which children play. In addition, toxoplasmosis appears to be passed from parents to their children during pregnancy. In fact, in mice, a mother's toxoplasma gondii infection has been shown to be transmitted up to ten generations. Thus, the characteristics of toxoplasma infection in schizophrenia may be mimicking genetic features in research settings.
"In the final picture, therefore, schizophrenia could be a disease in which environmental factors, infectious or otherwise, play the major etiological role but with genes determining susceptibility to the environmental factors," the authors write. In fact, the 30% heritability of schizophrenia is a similar level to that of polio and tuberculosis, both diseases that are known to have infectious agent-gene interactions.
Although this may seem like a discourse between researchers, there are significant implications of these issues in finding better ways to treat schizophrenia.
"The funds for research are finite," the authors write. "When NIMH decides to spend $100 million a year on genetics research, other promising research areas, such as inflammation, infectious agents, and the microbiome, do not get adequately funded."
Through the pioneering work of Dr. Torrey, Dr. Yolken and others, the Treatment Advocacy Center hopes to move beyond genetic theories of schizophrenia and to focus more attention is paid to other etiologies of psychiatric disorders.
References:
Elizabeth Sinclair
Director of Research
Treatment Advocacy Center
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"
Once my loved ones accepted the diagnosis, healing began for the entire family, but it took too long. It took years. Can't we, as a nation, begin to speed up that process? We need a national campaign to destigmatize mental illness, especially one targeted toward African Americans...It's not shameful to have a mental illness. Get treatment. Recovery is possible." –Bebe Moore Campbell, 2005
Bebe Moore Campbell National Minority
Mental Health Awareness Month
In May of 2008, the US House of Representatives announce July as Bebe Moore Campbell National Minority Mental Health Awareness Month.
The resolution was sponsored by Rep. Albert Wynn [D-MD] and cosponsored by a large bipartisan group to achieve two goals:
- Improve access to mental health treatment and services and promote public awareness of mental illness.
- Name a month as the Bebe Moore Campbell National Minority Mental Health Awareness Month to enhance public awareness of mental illness and mental illness among minorities.
About Bebe Moore Campbell
Bebe Moore Campbell was an author, advocate, co-founder of NAMI Urban Los Angeles and national spokesperson, who passed away in November 2006.
She received NAMI's 2003 Outstanding Media Award for Literature. Campbell advocated for mental health education and support among individuals of diverse communities.
In 2005, inspired by Campbell’s charge to end stigma and provide mental health information, longtime friend Linda Wharton-Boyd suggested dedicating a month to the effort. The duo got to work, outlining the concept of National Minority Mental Health Awareness Month and what it would entail. With the support of the D.C. Department of Mental Health and then-mayor Anthony Williams, they held a news conference in Southeast D.C., where they encouraged residents to get mental health checkups.
Support continued to build as Campbell and Wharton-Boyd held book signings, spoke in churches and created a National Minority Mental Health Taskforce of friends and allies. However, the effort came to a halt when Campbell became too ill to continue.
When Campbell lost her battle to cancer, Wharton-Boyd, friends, family and allied advocates reignited their cause, inspired by the passion of the life of an extraordinary woman. The group researched and obtained the support of Representatives Albert Wynn [D-MD] and Diane Watson [D-CA], who co-signed legislation to create an official minority mental health awareness month.
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Upcoming Class:
Homefront: New to the state of Massachusetts and only offered on Cape Cod; Homefront is the “Family to Family” for military families. This 6-week course facilitated by peers is an opportunity for veterans and military family members to understand and respond effectively to a family member who may be suffering from a mental health issue.
You will learn how to:
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Manage crises, solve problems, communicate effectively
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Care for yourself; manage stress
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Develop confidence to support your loved one with compassion
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Identify and access federal, state and local services
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Be informed on the latest research on mental health
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Understand current treatments, therapies and medications
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Navigate the challenges and impact of mental health on the family
Most importantly, be with others who face similar challenges. You are not alone!
The first Homefront course on Cape Cod is scheduled to meet on Monday evenings, 5:30 - 8:00 p.m., July 15th - August 19th in Hyannis.
All NAMI educational programs are free and confidential. However, registration is limited and required. Please contact Kim Lemmon, Director of Family Programs for registration and information at 508-778-4277.
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Dance In the Rain
Mary Munsell wishes to announce that Dance in The Rain will no longer meet at 145 Barnstable Road, Hyannis. During this time of transition and restructuring, program information will be available on their website at
www.danceintherain-wpa.org
and on their Facebook page. Specific questions can be directed to Mary at her email address -
mary@danceintherain-wpa.org
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When shopping on Amazon, think NAMI CC&I and Amazon Smile.
Every dollar you give to NAMI CC&I goes to help support, educate and advocate for the residents of Cape Cod, Nantucket and Martha's Vineyard.
Amazon donates 0.5% of your eligible purchases.
It's so easy, you can still use your Amazon Prime and you still collect points. All you need to do is:
When you are going to make a purchase on Amazon, first enter
http://smile.amazon.com
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n your internet browser. On your first visit to AmazonSmile, you will be prompted to select a charitable organization . Select NAMI Cape Cod Inc.
Thank You!
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