Meeting International Thought Leaders in Vienna

Transcription

1 VOLUME 30, NUMBER 1, Spring / Summer 2014 MANITOBA SCHIZOPHRENIA SOCIETY Meeting International Thought Leaders in Vienna By Chris Summerville, D.Min., CPRP, Executive Director, Manitoba Schizophrenia Society I WAS recently invited by Roche Pharmaceuticals to join a group of 12 international thought leaders to discuss schizophrenia and social inclusion. The meetings were held in Vienna, Austria during March 3-4. Joining me were mental health leaders from England, Australia, Ireland, Hong Kong, Japan, Lithuania, Finland, South Africa, Brazil, and the United States. One of the delegates was Monika Nemanyte from Lithuania who works at the New Theatre of the Disabled ( Monika lives with schizoaffective disorder and actively promotes the recovery philosophy. She is a most gifted person and leader (pictured above). I also met Francesco Baglioni who is the director of Club Itaca, a clubhouse registered with Clubhouse International. Francesco and Manuela Ugge (a Peer Support Worker) presented at the meeting on the importance of peer support in transforming mental health services. Clubhouses are community-based centers that offer members opportunities for friendship, employment, housing, education, and access to medical and psychiatric services through a single caring and safe environment, so members can achieve a sense of belonging and become productive members of society. All delegates recognize that there is no true recovery without social inclusion. A socially inclusive society is defined as one where all people feel valued, their differences are respected, and their basic needs are met so they can live in dignity. Social exclusion is the process of being shut out from the social, economic, political and cultural systems which contribute to the integration of a person into the community (Cappo 2002). We also talked a lot about recovery. Recovery can be defined as, A personal process of changing one s attitudes, values, feelings, goals, skills and/or roles. It involves the development of new meaning and purpose and a satisfying, hopeful and contributing life as the person grows beyond the effects of psychiatric disability. The process of recovery must be supported by individually-identified essential services and resources. The definition developed by Patricia Deegan, a consumer and psychologist who has contributed greatly in this area, is: Recovery is a process, a way of life, an attitude, and a way of approaching the day s challenges. It is not a perfectly linear process. At times our course is erratic and we falter, slide back, regroup and start again The need...continued on Page 2 EDITORS Susan Boning, Kim Heidinger Design & Layout Sangeetha Nair Inside This Issue A Model for Community Inclusion. 2 Keeping Well The Blame Game: Is it My Fault...4 Clara s Big Ride to End Stigma.5 Light for Inner Vision...6 Golf for Schizophrenia Tournament..7 Donation Form BACK COVER

2 Continued from page 1 is to meet the challenge of the disability and to re-establish a new and valued sense of integrity and purpose within and beyond the limits of the disability; the aspiration is to live, work and love in a community in which one makes a significant contribution. The definition provided by the New Zealand Mental Health Advocacy Coalition in Destination Recovery is: a philosophy and approach to services focusing on hope, self determination, active citizenship and a holistic range of services. Mental Health Advocate Neasa Martin has said: People identified as having a mental health problem remain one of the most marginalized groups in society. Francesco and Manuela with Chris They experience social exclusion in a multiplicity of domains including: high rates of unemployment; lower educational achievement; persistent poverty; the loss of friendships; kinship; denial of housing; and rejection by their neighbours. Self-stigma results in people not pursuing opportunities, advocating for entitlements or accessing mainstream activities. Social isolation, loss of family supports and unemployment all contribute to a worsening in mental health and increase an already high risk for suicide. There is a lack of choice and limited access to community, rehabilitation, and treatment supports. People with mental health issues are more likely to have their human rights violated through the use of seclusion, restraints, involuntary admissions and forced treatments, along with experiencing losses of personal and parental rights. As a movement, recovery should focus more on addressing social inequities and changing systems of mental health services and supports and less on changing the individuals who use these services and supports (Jacobson et al, 2010, p.13). In conclusion, it seems that our European cousins are a bit father ahead of us in North America in addressing social inclusion as part of the recovery process. 2

3 Keeping Well RELAPSE is more likely when antipsychotic medications are discontinued or taken irregularly. Therefore it is very important that people with schizophrenia agree with their doctors and family upon a treatment and relapse prevention plan that suits them. It is essential then to find support so that the individual can stick to the agreed plan. If taking daily medication, this involves taking the prescribed medicine at the correct dose and proper times each day, attending clinic appointments and carefully following other treatment procedures. If taking a long-acting monthly treatment, it is essential to attend appointments so that the medication is taken at the correct time. While this can be difficult, there are strategies and therapies that can greatly improve the outcome and often lead to a better quality of life. Evidence suggests that LAIs are as effective as oral medications, and can decrease the risk of relapse, as well as reduce the frequency of hospitalization. 3 LAIs improve patient adherence, resulting in improved clinical and functional outcomes and assists patients to achieve remission, thereby reducing hospitalization rates and LOS in hospital. Approximately 40 to 60 per cent of patients with schizophrenia are partially or totally non-adherent to oral antipsychotic medication, which validates the need for treatment with an LAI. Last year, the Long-Acting Injectable Clinical Recommendations on the use of LAIs became available to physicians to help with the treatment of schizophrenia. The recommendations emphasize the use of LAIs at all phases of the illness to improve adherence, prolong periods of remission, and facilitate rehabilitation in patients. For more information about schizophrenia, visit Schizophrenia 24x7 is an online resource that includes: A digital diary for patients and caregivers to record their thoughts, medical appointments, and more. A short questionnaire for patients focusing on how their medication makes them feel. A short video series that takes viewers through a day in the life of Mark, a young man diagnosed with schizophrenia. i The Canadian Journal of Psychiatry. Long-Acting Injectable Antipsychotics: Recommendations for Clinicians. Vol. 58, No 5, Supplement 1. May Page 31S. ii Koczerginski, D. and Arshoff, L. Hospital Resource Use by Patients with Schizophrenia. Reduction after Conversion from Oral Treatment to Risperidone Long-Acting Injection. Healthcare Quarterly. Vol. 14 No Pages iii Prikryl, et al. (2012) - The role of long acting injectable second generation antipsychotics in the treatment of first episode schizophrenia. Schizophrenia Research & treatment. Volume 2012, Article ID iv Clinical Recommendations for the Use of Longacting Injectable Antipsychotics presentation (2012). Slide 19. v The Canadian Journal of Psychiatry. Long-Acting Injectable Antipsychotics: Recommendations for Clinicians. Vol. 58, No 5, Supplement 1. May Page 31S.

4 The Blame Game Is it my fault? Did I cause it? By Angela Inglis, MSc, and Jehannine Austin, PhD indicating that everyone has some genetic vulnerability to mental illness not just those who have mental illness. Second, we cannot control the genes that we pass on to our children. If we consider all of this together, it s clear that even if a parent has a family history of mental illness, their child s mental illness cannot be attributed entirely to having received bad genes from a parent. WHEN someone develops a psychiatric disorder, one of the first things they and their loved ones wonder is: Did I cause this? Could I have prevented it? Is this somehow my fault? Those who have the psychiatric disorder often wonder whether they are somehow to blame for their illness because, for example, they used street drugs, drank alcohol or didn t sleep properly. Parents of people who have been diagnosed with psychiatric disorders can feel guilty for a lot of different reasons. The parents often wonder if their child developed a psychiatric disorder because, for example, they got divorced or because the mother had the flu while she was pregnant. And society, unfortunately, sometimes reinforces parental feelings of guilt. I was told it was because I was a weak parent These sentiments imply to parents that if they had been more strict or a better parent, perhaps their child wouldn t be ill. Also, if a parent has a family history of psychiatric illness, they can feel guilty for causing mental illness by passing on bad genes to their affected child. Siblings and children of people with psychiatric disorders can also feel guilty and wonder if it was their fault. Siblings may wonder, for instance: Is it because I teased him too much when we were growing up? Children might wonder if their parent developed mental illness because they were difficult children when they were young. These feelings of guilt about whether or not mental illness is someone s fault are very common. They are also deeply uncomfortable. In fact, they are so uncomfortable that people often find it hard to talk about them. These are feelings that cause families much suffering. So is it anyone s fault? There is a lot of research data that clearly shows psychiatric disorders are caused by combinations of various experiential or environmental vulnerability factors (such as life events) and genetic vulnerability factors. None of the individual contributing factors are sufficient on their own to cause mental illness. In most cases, it is the combined effects of both these factors, with many different little contributions that ultimately lead to mental illness. Feeling guilty about passing on bad genes First, and most importantly, remember that genes alone don t usually cause mental illness and so, typically, we do not inherit mental illness. We can inherit a vulnerability to mental illness, but this is an importantly different concept. Further, research is Feeling guilty about life experiences It s very important to remember that any given life experience on its own typically doesn t cause mental illness. Often it s a combination of events that might contribute to the development of mental illness, usually together with an underlying genetic vulnerability. It s also important to realize that experiences don t have to be dramatically negative such as experiences of trauma to contribute to the development of a mental illness. Some life events are not necessarily perceived as negative but can be stressful planning a wedding or a vacation, for example. These kinds of stressful events may potentially contribute to vulnerability to mental illness. One life experience people often feel guilty about is street drug use. While drug use can contribute to the development of mental illness, it is not typically the only cause. There are many people who use street drugs and don t develop a mental illness, and vice versa. Parents often feel guilty about their child s mental illness and wonder if they could have prevented it by being better parents. We also know that even perfect parenting cannot prevent mental illness. It s important to recognize that we have limited control 4

5 Continued from Page 4... over many of the things that happen to us throughout our lives and that happen in our loved ones lives. So, do we have any control? You need to know and feel that your family member s or your mental illness is not your fault. And while there can certainly be a sense of relief in letting go of blame, it can also make us feel frighteningly out of control or helpless. It can lead people to feel that everything is just a result of chance, and that perhaps there isn t anything we can do to help with recovery or protect mental health. Because the development of mental illness is not all genetic, there are things we can do to try to protect our mental health and help with our recovery. Healthy habits to do with sleep, exercise, diet and social support can be very beneficial. It can be a challenge to keep up these healthy habits all of the time no one is perfect at this. But when we have periods where we are not taking care of ourselves as well as we d like to, it s important to try to accept that we are doing the best we can, so as not to feel guilty. It s important, always, to be kind to ourselves. Family members and loved ones of individuals with mental illness can also try to encourage and model these healthy habits. Reprinted from "Families" issue of Visions Journal, 2013, 8 (3), pp Ab o u t t h e Aut h o r s Angela is a genetic counsellor who specializes in psychiatric disorders. She helps people understand the causes of mental illness, explaining in lay language what is known from research, and making that information relevant to each person. Angela provides this service to people who have mental illness and to their families. Jehannine is an Associate Professor in the departments of Psychiatry and Medical Genetics at UBC, where she holds the Canada Research Chair in Translational Psychiatric Genomics. Jehannine led the development and implementation of the first and only specialist psychiatric genetic counselling service in the world, here in BC. Clara s Big Ride to End Stigma ON her national bicycle tour through every province and territory, six-time Canadian Olympic cycling and speed-skating medallist Clara Hughes will invite people in communities large and small into the mental health conversation and share her own story of her challenge with depression. Clara s Big Ride for Bell Let s Talk, which began in Toronto on March 14, will span 12,000 kilometres over the course of 110 days. She will visit 95 communities and end her tour in Ottawa on Canada Day, July 1. During her journey, Clara will share her personal story with youth at schools and community organizations across Canada, in hopes that they ll be able to change the way Canadians talk about mental illness in the future. She is hopeful the next generation of Canadians will grow up in a society where there is no stigma associated with mental illness. Bell and other leading Canadian corporations are covering all costs for Clara s Big Ride. Every dollar raised will stay in the community to benefit local mental health programs. Clara will be riding from Portage La Prairie to Winnipeg on Saturday, June 14th. The following activities have been planned for her stay in Winnipeg*: Clara Hughes teams up with Chris Summerville of SSC Park, 281 Henderson Hwy, Winnipeg. This event will include yoga classes to start and finish the day, cycling education workshops for people of all ages, family friendly performers and of course Clara between 2 p.m. and 4 p.m. 7:00 p.m. to midnight: Manitoba s Big Social for Clara s Big Ride at the Manitoba Museum, 190 Rupert Ave, Winnipeg. Clara will be speaking just after 8 p.m., and a lineup of amazing performers will begin at 8:30 p.m. with a dance party (POMO productions). Saturday June 14th, 2:00 p.m.: A committed committee with over 40 community representatives led by CMHA Winnipeg will host the welcoming event Clara s Carnival at Clara Hughes Recreation *Visit Bell Canada s website CMHA Winnipeg at or CMHA Winnipeg s facebook page facebook.com/cmhawinnipeg for information. 5

6 Light for Inner Vision By Jerry Malugeon MOST of us know that having sufficient light is helpful to our outer vision. Having enough light on the focus of our attention (words on a page, misplaced keys, driving on a dark highway, inserting a key into a lock, etc.) usually helps us to do a better job and do it more quickly and more accurately than we would if we didn t have the light assisting us. Our inner vision can be helped by light, also, and can be just as important in our life as driving a car, locating lost keys, opening a lock or accurately reading what s written or printed on a piece of paper. Sunlight, scientists tell us, has a host of natural benefits that artificial lighting usually doesn t have. When we are exposed to natural blue light (the blue unseen spectrum of sunlight), studies indicate that our bodies (especially our brain cells) absorb more beneficial natural light. This helps us in many areas such as in: Repairing and improving the nervous system Regulating hormones Strengthening muscle function Optimizing immune health Doctors confirm that most people seem to feel better on sunny days than on gray ones, and some experience seasonal depression during the dark, winter months. For many of us sunlight has the effect of helping with our moods by lifting fatigue and restoring vitality. Professionals even cite these and similarly favorable outcomes to limited yet regular exposure to sunlight: Staying alert and better focusing our attention Helping with intellectual tasks and problem solving Processing information more quickly Becoming more creative Helping improve our short-term memory Organizing, planning and managing time better Aiding in healing, pain treatment and overall wellness Sunlight often appears to help with improving depressive symptoms. Some psychiatrists even recommend special light therapy (usually called blue-light therapy or brightlight therapy). Your or your loved one s doctor will know about such treatments, which seem to work well for some, yet are not as effective for others. Sunlight, however, seems to help everybody. Moderate amounts of sunlight (not necessarily direct) enjoyed each morning appear to benefit all of us. It s even known to help us sleep better later at night. Republished from Jerry s blog: About the Author After a thirty-year career in health care, Jerry joined a Depression and Bipolar Support Alliance (DBSA) family support group and began ongoing education programs with National Alliance on Mental Illness (NAMI). Now, as manager of a busy DBSA Resource Center in Orange County, CA and editor of its newsletter, The Rollercoaster Times, Jerry has helped hundreds of family members, companions and caregivers assisting loved ones suffering from mental illnesses. His education and research, along with his own personal and family experiences, have been enriching although sometimes heartrending experiences. 6

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8 We Provide Services Around the Province Manitoba Schizophrenia Society Fort Street Winnipeg, MB R3C 1C4 Phone: 1(204) Fax: 1(204) Toll Free: Website: Regional Services Burntwood 43 Fox Bay Thompson, MB R8N 1E9 Phone: 1(204) Fax: 1(204) Central 309 Main St. Box #129 Winkler, MB R6W 4A4 Phone: 1(204) Fax: 1(204) Brandon & Assiniboine Box #413 Souris, MB R0K 2C0 Phone: 1(204) North & South Eastman 21 Loewen Blvd. Steinbach, MB R5G 0L4 Phone: 1(204) Fax: 1(204) Interlake Box #101 Selkirk, MB R1A 2B1 Phone: 1(204) Fax: 1(204) Norman Box 3864 The Pas, MB R9A 1S4 Tel/Fax: SMHC 825 Manitoba Ave. Box 9600 Selkirk MB R1A 2B5 Phone: 1(204) ext 416 Fax: 1(204) Manitoba Schizophrenia Society is a consumer focused, family sensitive mental health self help organization whose mission is to improve the quality of life for those affected by schizophrenia, psychosis and co-occurring disorders, through education and peer support. Reasons for Hope is the official newsletter for the Society. It is published quarterly. Submissions are invited. Opinions set forth in this newsletter are not necessarily those of the Society or its members. Reprinting of articles is permitted with the proviso the Society is given appropriate credit. MANITOBA SCHIZOPHRENIA SOCIETY Board of Directors Winnipeg Office Staff Outreach Workers Wilma Schroeder, President Amy Butcher, Secretary Annette Osted, Treasurer Directors: Barb Madden Brenda Bacon Doug Tiltman Heather Carr Julia Hoeppner Louise Chernetz Sean Miller Tammy Lambert Tracy Stople Chris Summerville Rey Schellenberg Susan Boning Livia Lobo Jane Burpee Karen Kaplen Eric Fraser Verne McComas Executive Director Accountant Special Events Coordinator Administrative Assistant Public Education Coordinator Peer Program Support Worker Peer Support Worker Lifelinks Program Kim Heidinger Tim Shewchuk Diane Findlay Bev King Rhonda Heskin Teresa Roberts North & South Eastman Region Brandon & Assiniboine Region Central Region Interlake Region Burntwood Region Norrman Region Donate to MSS monthly!- For more information on how you can become a monthly partner with MSS call MSS is a registered non-profit organization. Charitable donation # RR 0001 Single, $15 Family, $25 Corporate, $50 Donation $ I/We would like to give a monthly donation of $ Visa / MC: Expiry Date (For a pre-authorized payment from your chequing account, please enclose a cheque marked VOID) Name: Phone: Address: City: Province: Postal / Zip Code: I am: Mother Father Sibling Consumer Service Provider Other I am renewing my membership Members receive the MSS newsletter Reasons for Hope and the Schizophrenia Society of Canada (SSC) Bulletin. Please make cheques payable to: MSS Fort Street Winnipeg, MB R3C 1C4 Signature: Date: 8