Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.

.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

ORGANISATION PROFILE Name of Organisation Physical Address Postal Address Location Type of organisation Organization email Organization Telephone Contact person Contact person email Contact person mobile Website Officials Title Chairperson Secretary to the Board & CEO Treasurer Board Member Board Member Head of Programs Names Jane Nduati Kanyi Gikonyo Pauline Oketch Andrew Miingi John Kihara Michael Njenga Profession Graduate Teacher Mental Health Advocate USPKENYA / ICT Consultant / Graduate Business Management Entrepreneur / Business Owner University Student - Engineering Graduate Marketer Human Rights Activist / Mental Health Advocate USPKENYA Accountant Users and Survivors of Psychiatry in Kenya (USPKENYA) PCEA Church Kangemi Compound (Past Westlands-Nairobi) P.O. BOX 10071 00100 Nairobi-Kenya Non-Governmental Organization (NGO) / Not-for-profit Organization info@uspkenya.com +254 722 884565 Kanyi Gikonyo kanyi.gikonyo@uspkenya.com +254 723664177 www.uspkenya.com

Background Information Users and Survivors of Psychiatry in Kenya (USPKenya) is a non-governmental organization that was established and registered in Kenya in the year 2007. It is a membership organization whose major objective is to promote and advocate for the rights of people with psychosocial disabilities (mental health conditions) in Kenya.

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

The organization is affiliated with the World Network of Users and Survivors of Psychiatry (www.wnsup.net) and its African affiliate the PanNational User / Survivor Movement of persons with psychosocial disability

African Network of People with Psychosocial Disabilities (PANPEP formerly PANUSP-

www.panusp.org). USPKenya has been operating in Kenya for the past 5 years and has transformed the lives of persons with psychosocial disabilities in Kenya especially through influencing policy and legislation, rights-based advocacy and also through participatory public education programs using different media such as TV, radio, newspapers, magazines and internet on mental health issues. The organization has also participated in international conferences and other forums.

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

VISION A world in which people affected by mental health conditions are not only treated with honour and dignity, but realize their potential. MISSION To be the worlds leading forum and voice of people affected by mental health conditions, to promote their rights and interests. MISSION STATEMENT To enable people with mental illnesses live and work successfully in their communities. Objectives 1. Advocate for the advancement of human rights for persons with mental health conditions through various lobbying and advocacy initiatives targeting the government, medical fraternity, insurance companies and other service providers. 2. Provision of national and regional representation and consultation to influence matters that affect persons with mental health conditions. 3. Encourage the development of local users/survivor groups at grass root and national levels. 4. To fight ignorance, societal stigma and discrimination directed towards persons with mental health problems in Kenya (facilitate effective information exchange). 5. Develop network opportunities for individuals and groups of individuals and groups of users and survivors of psychiatry in Kenya and beyond. 6. Provide advice on prevention and treatment of mental illnesses to equip people affected by mental illnesses to demand for the right treatment.

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

Activities and Programs 1. Comprehensive rights and empowerment for Persons with Psychosocial Disabilities in Kenya This project seeks to improve the capacity of people living with psychosocial disability in Kenya to understand and claim their rights as contained in the Constitution of Kenya 2010 (CoK2010) and the Convention on Rights of Persons with Disability (CRPD) which Kenya ratified in 2007. The project will also enhance the recognition of the rights of Persons with Psychosocial Disability (PPD) in Government policies and in public community systems. This project commenced in September 2012 and is expected to run for one year till September 2013. The project is funded in part by the Open Society Foundation (The Open Society Foundations work to build vibrant and tolerant democracies whose governments are accountable to their citizens.) through its Disability Rights Initiative (DRI) and iFred (International Foundation for Research and Education on Depression.) 2. The 2012 Field for Hope iFred (International Foundation on Research and Education on Depression) The 2012 Field for Hope was a project funded by iFred that sought to eradicate the stigma of depression globally. There were 15 global nonprofits that aim to plant 1 million sunflowers around the world to symbolically rebrand this very treatable disease. The sunflowers honor the 121 million people living with depression, 75% of whom are untreated due to stigma. They stand as a symbol of life and the bright and enduring determination of nature to turn towards the light, even on the darkest days. The project to replace the image of depression currently associated with darkness and despair, with one of hope and healing. This Project ended globally in September 2012

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

3. EMPOWER (Empowering Persons With Mental disorders to Promote Wider Engagement With Research) USPKenya was one of the implementing partners for EMPOWER, a project that facilitated user organizations to develop their communication strategies supported by a grant from the Wellcome Trust (2010-2012) through the London School of Hygiene and Tropical Medicine (LSHTM) led by Project Leader Prof. Vikram Patel The objective of this project was to improve general understanding on the nature and treatment of mental health conditions and reduce the stigma and discrimination associated with them through engaging the people affected and their carers in the process of creating and sharing digital stories of their experiences as part of advocacy initiatives. As part of EMPOWER project, USPKenya participated in a 2-week leadership course held in Goa India in November 2010 (www.sangath.com). The EMPOWER project was implemented by 5 organizations: Sangath (an NGO in India) and 4 user organizations namely, Users and Survivors of Psychiatry in Kenya (USPKenya), Mental Health Network of Zambia, The Richmond Psychosocial Foundation (India), the Nepal Mental health Foundation (Nepal), with technical support from Gauteng Consumer Advocacy Movement (South Africa) and University of Toronto. USPKENYA participated in a capacity building forum hosted by National Institute of Health (NIH) Maryland USA on behalf of the Empower team in March 2011 Participation in the EMPOWER project came to an end in March 2012 and led to the production of two songs and a slide show video telling stories of people affected by mental health conditions. Other countries used different mediums of communication: Zambia used theatre; Nepal, video documentary, and India, posters. These amazing stories were compiled into DVD and made available to the public via the internet.

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

4. Advocacy Public Education Program USPKenya has been involved in some key advocacy initiatives geared towards creating awareness on psychosocial disability and at the same time fighting the stigma and discrimination that is directed towards Persons with Psychosocial Disability (PPD). Some of these initiatives include: i. The Star Newspaper Article Against All Odds Young People Living with Mental illness
http://www.the-star.co.ke/news/article-120600/against-all-odds-young-people-livingmental-illness (Thursday May 16th, 2013)

ii.

Family TV interview by USPKenya member on her experiences with Depression a. Part 1: Depression; TV Clip Available Below:
http://www.youtube.com/watch?v=H6KCPvsTp24&list=UUIYPp4HATNjuj1rPLo1EDrQ&i ndex=6&feature=plcp

b. Part 2: Depression; TV Clip Available Below:

http://www.youtube.com/watch?v=bBJ8y8jYdpo&feature=relmfu

iii. iv. v. vi. vii. viii. ix. x. xi.

Capital TV Online Depression Feature 30th October 2012

http://www.capitalfm.co.ke/tv/video/El46WZ1H3Ns

The People Paper The Nasty Side of Depression 22nd October 2012
http://www.scribd.com/doc/111294866

KTN Healthy You Show Mental illness Interview 20th October 2012 http://www.youtube.com/watch?v=ryQekbjKRyQ (6 minutes) KTN Sunrise Show Bipolar Disorder Interview 23rd March 2012-8am https://vimeo.com/41196748 (54 Minutes) Ghetto Radio Interview by Michael Njenga (USPKenya) Advocacy Part 1 http://soundcloud.com/kanyi-gikonyo/michael-njenga-interview-1 (21th April 2012 -9 am) Ghetto Radio Interview by Michael Njenga (USPKenya) Advocacy Part 2
http://soundcloud.com/kanyi-gikonyo/michael-njenga-interview-2 (28th April 2012 -9am)

February 2012 Edition Parents Magazine Walking with the Mentally ill
http://www.scribd.com/doc/93124450/Mike-USP-Parents-Article-Feb-2012

USPKenya guest speaking engagements at the Rotary Club Langata & Nairobi East in Kenya World Federation of Mental Health Capetown South Africa October 2011(EMPOWER Project) a. Call Me By My Name (USPKenya Video) - - Serious Mental illness http://www.youtube.com/watch?v=jtGHv1U6heY&feature=relmfu (5min 26secs) b.

This is my cry (USPKenya Video) Common Mental Disorders

http://www.youtube.com/watch?v=LgDtksqG0BY&feature=relmfu (4min 44secs)

xii. xiii.

Participation in the Pan African Network of Users and Survivors Psychiatry (PANUSP) in Capetown South Africa October 2011 The Standard Paper (local newspaper) 23rd August 2011 Feature on Bipolar Disorder
http://www.scribd.com/doc/66586449/Kanyi-Bipolar-Std-23-08-2011

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

xiv.

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Central Gauteng User Journal "Walk My Way" Issue 13 April 2011- guest contributor on the experience in Kenya circulated to mental health care users and mental health professionals in countries including: India, Nepal, Kenya, Zambia, United Kingdom, Canada, and Australia. http://www.scribd.com/doc/66588362/WalkMyWayXIII-Kanyi-Story Participation in the Kenya Science Cafe 24th March 2011 by Kemri-Wellcome Trust Foundation titled State of Mental Health and policy Kenya Building Research Capacity & Collaboration in Global Mental Health (March 2011) Sponsored by The Office for Research on Disparities and Global Mental Health National Institute of Mental Health Washington DC Maryland for EMPOWER Team Daily Nation (national newspaper) Feature Story on Bipolar disorder 13th September 2011
http://www.nation.co.ke/Features/Living/Im+no+longer+a+slave+to+this+monster++//1218/1235598/-/view/printVersion/-/w25u2p/-/index.html (print edition) http://www.nation.co.ke/Features/Living/Im+no+longer+a+slave+to+this+monster++//1218/1235598/-/item/4/-/12rmbbn/-/index.html (web edition) http://www.scribd.com/doc/66577284/Dn-14092011-Bipolar-Kanyi (Hard copy scanned)

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Family Doctor interview on Family TV by blending in a user experience on Bipolar Disorder, user family's experience as carers and the burden of the disease. 17th January 2011 http://www.youtube.com/watch?v=xZE48Xe0KFw Participation in the Global Mental Health Summit (August 2009) Participation in the World Association for Psychosocial Rehabilitation (WAPR) Congress (November 2009) Participation in the East African Young Psychiatrist Training (EAYPT) Foundation recommend improvements from a mental health User / survivor / consumer to the primary health care agents / strategic policy makers of Mental health issues (November 2009) Participation in the Kenya Science Cafe : October 2009 by Kemri-Wellcome Trust Foundation titled Are you mentally healthy? Conduct 3 training sessions for BasicNeeds UK in Kenya for their Youth Mental Health Advocacy Campaign (One Mind, Lend your Voice) involving the youth to educate, inspire and contribute local communities especially in Universities December 2010 Swahili interview on Radio Umoja on mental health and illness issues (16th December 2010) http://soundcloud.com/kanyi-gikonyo/swahili-interview-mental Participation in the National Mental Health Concert presided by the Kenya Government Minister of Medical Services of Kenya i.e. Hon. Anyang Nyong'o. Key presentations were televised nationally by a Media House (K24) 23rd October 2010. Participation in the World Psychiatric Association (WPA) Conference March 2007

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

5. Legislative Forums Participation / Collaboration (Advocacy) The organisation has been involved in a number of key legislative forums towards the promotion of the human rights of persons with psychosocial disabilities. These forums include: Submission of three Position papers and participation in key validation meetings on the Legal Aid Bill 2012 with the technical support of the Open Society (Washington DC) Criminal Justice department Disability Rights Initiative (DRI), Kenya National Commission on Human Rights (KNCHR) and the Kenya Association for the Intellectually Handicapped (KAIH) to ensure that Persons with Disability (PWDs) are able to access legal Aid on an equal basis with others as a marginalized group. o Position Paper 1: http://www.scribd.com/doc/99607403 o Position Paper 2: http://www.scribd.com/doc/99607826 o Position Paper 3: http://www.scribd.com/doc/114881229/Legal-Aid-Bill-2012Paper-3 Working group with Kenya National Commission on Human Rights (KNCHR) to develop a policy directive on Article 12 of the CRPD held at Lake Naivasha Resort 05/09/2012 07/09/2012 Criminal Justice Reforms in the New Constitutional Dispensation: Challenges and Opportunities in the Alternative Measures to Imprisonment Held in Nakuru at Bontana Hotel 31/07/2012 03/08/2012. Sponsored & Organized by Kenya Government Probation Department & Open Society Initiative East Africa (OSIEA) National University of Ireland (NUI) Galway 4th International Disability Summer School Thematic Focus The CRPD-How to use it 18/06/2012 23/06/2012 Participation on the development of a policy paper on the implications of Article of the CRPD 12 on the local legislative framework with the Kenya National Commission on Human Rights, Ministry of Justice and other relevant stakeholders. The development of the mental health policy and review of the Mental Health Care Bill 2012 with other stakeholders. Participation in monitoring the rights of Persons with Disabilities with the Kenya National Commission Human Rights (KNCHR) under the obligations created in Article 33 of the Convention for Rights of Persons with Disabilities (CRPD) as a DPO representative Participation in the Legal Capacity Research in Kenya conducted by the Mental Disability Advocacy Center (MDAC) Budapest Hungary (2012) Participation in the parallel reporting process on the CRPD with United Disabled Persons of Kenya (UDPK) Review of the National Cohesion and Integration Act 2008 through UDPK Collaboration with University of Glasgow UK on Research on Mental Health Policy issues. Information exchange with the Scottish Recovery Network (SRN) UK

Kangemi P.C.E.A Church compound (Off Waiyaki Way) P.O. Box 10071 00100 Nairobi Kenya Tel. No.: +254 722 884565 Email: info@uspkenya.com Website: www.uspkenya.com

Users and Survivors of Psychiatry in Kenya

Participation on WHO study regarding Political participation of persons with psychosocial disability. Engagement with Rotary Clubs in Kenya as Guest Speakers on Mental Health and Psychosocial Disability o Muthaiga Club 17/09/2012 o Nairobi East Club 05/06/2012 o Langata Club 19/04/2012

6. Support Group Initiative USPKenya runs a support group program in which peer support is offered for persons with Psychosocial Disability (PPD) with an age group 18 years of age to over 40 years of age. The support group was established after media articles in our advocacy initiative were published in a national local paper as of Mid-September 2011 to-date. It currently meets every alternate week (twice a month) in Nairobi. We already have support groups running in the following 2 counties in addition to Nairobi: a. b. c. d. Nyeri County Karatina Town that meets once a month Kiambu County Lusigetti Support Group that meets once a month Nakuru County Scheduled to start in April 2013 Eldoret County Planning and Logistics Sessions ongoing (To be Confirmed)

Strengthened Voices of Persons with Psychosocial Disabilities (PPD) in Kenya and Beyond