Empowerment, Identity and Hope. Recovery and Peer/User-led models in Global Mental Health

A review of Recovery and Peer/User-led theories/projects/stories worldwide in:
10 organization-examples
10 inspiring videos
10 recovery models/theories
10 relevant documents

Introduction:
Most in2mentalhealth articles focus on ICT and mobile applications in global mental health. But two affairs urged me to explore this recovery and peer/user-led field as well. First, I’m not hundred percent happy with the medical approach of my current work (a psychiatric outpatient clinic in the Netherlands for people with a bipolar or ADHD diagnosis). And I was very impressed by the work of users (or ex-users) during visits to a few user-led and recovery focused projects in South Africa and Tanzania.
So, I felt an urge to jump into this field and in this article I share my explorations.

image from ENUSP, European Network of (ex)-Users and Survivors of Psychiatry

In low income countries recovery focused and peer/user-led mental health care often seems to be born out of a lack of mental health professionals and resources. There is ‘nothing’ and people start peer and family-led mental health services in order to offer ‘something’.
In high income countries, on the other hand, recovery and peer/user-led initiatives seem to emerge from people who are unhappy with the services already offered. Not a shortage of services seems the motive in these countries, but the experience and conviction that the ‘medical model’ of mainstream mental health care is not enough, or even harmful, for people with mental health difficulties.
And yet, many recovery and peer/user-led projects in both the high and low income countries seem to look alike! Often the same set-up, combination of services-education-housing-activism-belonging, often, at first sight, the same ideology and principles.
But where do they all agree and where are different opinions? How do this models and services work in practice? What are the stories from the people? And what can people/projects/models learn from each other?

I have no answers (yet) on all these questions. But I hope that this review is stirring new thoughts and helpful in finding a direction in your work and/or personal development and/or recovery.

Please note that this collection of links, images and examples are not Top-Tens but random selections in random order.
Comments and additions are very welcome!

picture from Heartsounds Uganda

Ten examples of recovery and peer/user-led organizations::
1. Koshish, Nepal’s National Mental Health Self-help Organization
Koshish’s mission is ‘to unite people living with mental health problems and their families, and empower them to advocate of their rights and achieve correct awareness about mental health in their communities’.

2. Central Gauteng Mental Health Society, South Africa
The current approach of the GMHS is to deliver services ‘guided by a belief in the ability of all humans to realize their full potential, if given the correct learning environment in which to do so’.

3. Heartsounds Uganda, The voice of experience-generating mental health
Heartsounds is ‘an innovative initiative bringing together UK and Ugandan Mental Health champions to work together and learn from each others experience’.

4. Mental Rehabilitation Centre Turning Point, Kolkata, India
‘The principal aim is to re-initiate development & growth in person suffering from mental illness, rehabilitate them socially & economically, fight against the stigma prevalent in the society & also making the sufferer aware of their Human rights & motivate them to fight for them’.

5. New Life, Psychiatric Rehabilitation Association Hong Kong
New Life is providing ‘a comprehensive range of quality community-based rehabilitation services for people in recovery of mental illness. With more than 12,000 service users every year, catering for their residential, vocational and social needs’.

6. Portugal Prints, Westminster Mind’s Creative work project, London, UK
‘Operating as a commercial print and design business as well as a charity, we promote good mental health by providing the opportunity for our members to use their creativity in our art studio and design center as a stepping-stone to recovery.’

7. Warsaw Fountain House, clubhouse Poland (website in Polish)
(translated:) ‘Our main goal is to create conditions where members can rebuild confidence recover or improve their ability to get a job, as well as to establish or renew relationships.’

8. MANAS, society for people with mentally disturbed persons, their family and friends, India
Manas is ‘trying to organise the family of the mentally ills for a joint endeavour to emerge as a self-sustaining group’.

9. The Icarus Project, USA
‘A network of people living with and/or affected by experiences that are often diagnosed and labeled as psychiatric conditions. By joining together as individuals and as a community, the intertwined threads of madness, creativity, and collaboration can inspire hope and transformation in an oppressive and damaged world.’

10. Keya House, Peers Helping Peers, Nebraska, USA
Keya House is a peer-run respite program offering an alternative support system to psychiatric hospitalization. ‘Trained peer companions who are compassionate, understanding, and empowering offer self-help and proactive recovery tools to regain and maintain wellness’.

image from Anjali India

Ten inspiring videos:
1. Activities of Community Self Help Groups in Ghana part01
10.04min documentary, Ghana, 2012
This is a documentary on the activities of Mental Health Community Self-Help Groups in Ghana. These groups were formed out of the BasicNeeds Ghana program. Here is Part 2.

2. South West London Recovery College
5.24min video by South West London and St.George’s Mental Health NHS trust, 2011
‘South West London Recovery College is the UK’s first mental health recovery study and training facility providing a range of courses and resources for service users, families, friends, carers and staff.’

3. Mental Health Visions #11 Elena Chavez, Peer Support, Peru
7.57min interview, 2009
Elena Chavez is an ex-user of psychiatry, and the founder of ALAMO, a support group in Perú. Elena is also a member of the World Network of Users and Survivors of Psychiatry.

4. Mental Health Visions #8 Peter Lehmann, Runnaway House 1/3
5.58min interview, 2005, Berlin, Germany
Peter Lehmann was a founding member of the group that developed Runaway House, Berlin. “Alternatives Beyond Psychiatry” is the latest book from Peter Lehmann Publishing (Berlin), a Publishing House orientated toward the interests of (ex-)users and survivors of psychiatry.

5. TEDxMaastricht Clarissa Silva: Expert from experience
8.40min TEDx Talk, 2012
‘Bizarre how fast your life can change’, that’s how Clarissa started her talk. She worked as a caregiver when she got mentally ill. She joined the Empowerment team and learned that contact with peers is crucial for recovery.

6. Mental Health Recovery clip
1.16min animation by RecoveryTidbits’s, Online mental health recovery center, 2012
‘Mental Health Recovery can be fun, exciting, awesome and the best thing that can happen.’

7. Mental Health Service user involvement, Butabika video 1
4.31min part 1 of a series of 12 short videos of the East London Foundation Trust, and the Butabika psychiatric hospital in Uganda, 2011. See number 2-12: here
In 2008 mental health service users and providers from the East London Foundation Trust visited a mental health service in Uganda. During their visit they met with their Ugandan counterparts with the aim of gaining mutual insights into mental health service users’ experiences in both countries.

8. Coming Off Psychiatric Drugs: A Harm Reduction Approach, Will Hall
39.16min interview, USA, 2012
Will Hall is a survivor of a schizophrenia diagnosis who today works as a therapist and teaches internationally on mental diversity, including psychiatric medication. This video provides some basic guidance for anyone considering reducing or coming off psychiatric medications and their supporters.

9. Schizophrenia: A Recovery
25.29min self made video from John-just-human, UK, 2011
‘In 2007 I was diagnosed with schizo-affective disorder (a combination of schizophrenia and depression). I have now made a full recovery and want to break the silence and remove the stigma about this disease and mental illness in general.’

10. Rose House Peer-run Psychiatric “Hospital Diversion” Program
8.45min tour and introduction of the project/house, New York, 2011
‘Guests (staying 1-5 days) are taught to use new recovery and relapse prevention skills and to move away from what are often long histories of cycling from home to crisis to hospital, year after year. The home-like environment is warm, friendly, safe and supportive’.

from the Rethink UK website

Ten Recovery and peer/user-led models:
1. Basic Needs ‘Model for Mental Health and Development’
Book, 77 pages pdf, free download, written by Basic Needs, a NGO based in UK and working with people suffering from many types of mental and neurological illnesses, in remote rural countryside to urban slums in countries in Africa and Asia.
Their work ‘is based on the philosophy of building inclusive communities, where mentally ill people – through development – realize their own rights’. ‘We work to help mentally ill people by giving them access to community based treatment so that their illnesses can be stabilized and they can get back towards a normal life.’ Basic Needs works

2. ICCD Clubhouses model
Two pages mission statement.
ICCD Clubhouses, now over 300 worldwide, are ‘founded on the realization that recovery from serious mental illness must involve the whole person in a vital and culturally sensitive community. An ICCD Clubhouse community offers respect, hope, mutuality and unlimited opportunity to access the same worlds of friendship, housing, education, healthcare and employment as the rest of society’.
The ICCD central office is based in New York, USA, and offers training, consultation, certification, research and advocacy. It’s organizes International Clubhouse Seminars as well, next one October 19-24 2013.

3. Wellness Recovery Action Plan®, WRAP
One page explanation about the WRAP program, written by Mary Ellen Copeland and staff, USA.
WRAP ‘shifts the focus in mental health care from ‘symptom control’ to prevention and recovery’. Five key recovery concepts provide the foundation of effective recovery work: Hope, Personal Responsibility, Education, Self Advocacy and Support.
The Copeland Center, in Vermont, USA, is a training and consultation center based on the Wellness Recovery Action Plan® and other works developed by Dr. Mary Ellen Copeland.
The second international ‘WRAP Around the World Conference’ will be in January 25-27 2013.

4. The Personal Recovery Framework
Thirty-two pages pdf guide for professionals, written by Mike Slade and published by Rethink, UK
The guide is written on the basis of two beliefs: ‘First, recovery is something worked towards and experienced by the person with mental illness. It is not something services can do to the person. Second, the journey of recovery is individual. The best way of supporting an individual’s recovery will vary from person to person.’ With ‘100 ways to support recovery’, a table with the differences between traditional and recovery-oriented services, etc.

5. Family Group Conferencing, FGC
Sixteen pages research paper pdf, written by Gideon de Jong and Gert Schout, The Netherlands, 2012
An FGC model is used in several countries and in other areas like child protection. It could be described as a model for decision making: in a conference, all who are involved with the client, and who can contribute, are invited. Not only a client, his or her family and care providers are present, but also friends and neighbours can participate. Central to the model is the private time wherein the client and his or her network have the chance to develop their own plan.

image from MentalHealthWorldwide.com

6. GROW, Peer Support for Mental Health
Australian website, with a little information.
(from Wikipedia:)GROW is a peer support and mutual-aid organization for recovery from, and prevention of, serious mental illness. GROW was founded in Sydney, Australia in 1957. As of 2005 there were more than 800 GROW groups active worldwide. GROW groups are open to anyone who would like to join, though they specifically seek out those who have a history of psychiatric hospitalization or are socioeconomically disadvantaged. GROW adapted many of Alcohol Anonymous principles and practices, like the 12 Steps of Recovery and Personal Growth.

7. The PRC’s Road to Rehabilitation and Empowerment
Website of the Psychiatric Rehabilitation Consultants, founded by Robert Paul Liberman, USA
The PRC offers ‘products and services for the partners in recovery’, like training and assessment tools. Examples: Training for agency staff and managers to design comprehensive, bio-behavioral evaluation plan for Psych Rehab, conduct social skills training for persons with major mental disorders (‘Liberman modules’), implement behavioral family management sessions, administer and interpret behavioral functional assessments, etc.

8. Emotions Anonymous
Four pages pdf ‘EA’S Twelve Step Program, the ‘Yellow Pamphlet’, based in USA, but active in several countries.
Emotions Anonymous is a twelve-step organization, similar to Alcoholics Anonymous: ‘Our fellowship is composed of people who come together in weekly meetings for the purpose of working toward recovery from emotional difficulties. EA members are from many walks of life and are of diverse ages, economic status, social and educational backgrounds. The only requirement for membership is a desire to become well emotionally’.
In September 2012 they organize the 2012 International EA convention in San Fransisco, USA.

9. The TIDAL model
Three pages download ‘Beginners Guide’ from the Tidal website, based in UK and founded by Poppy Buchanan-Barker and Phil Barker. Active in several countries.
‘The Tidal Model has developed a specific theory of personhood, based around the ‘storytelling’ process involved where people talk to themselves (Self Domain), share something of the story of their lives with others (World Domain) and enact the living of their lives, influencing others and being influenced in turn by them (Others Domain). These three Domains also provide the theoretical basis for the key individual and group-based processes of the Tidal Model: the Holistic Assessment; the One-to-One Sessions; the Personal Security Plan; and the three forms of Group Work – Discovery, Solutions and Information-Sharing.’

10. Recovery International Method
Website of ‘lowselfhelpsystems.org’, founded and developed by Abraham Low, USA.
‘The Recovery International Method is a system of cognitive-behavioral self-help techniques for controlling behavior and changing attitudes. People who practice the living skills detailed in the Recovery International Method learn to change their thoughts and behaviors; changes in attitudes and beliefs follow. Although many people solely use the Recovery International Method for their needs, it is not intended as a substitute for professional care, but rather as an adjunct to it. The system and meetings offer the training and advice necessary for applying the Recovery International Method to everyday life.’

image from GCMHS South Africa

Ten documents about recovery and peer/user-led models:
1. Article: Empowerment and partnership in Mental Health
Two pages free download (after registering), written by Charlene Sunkel, The Lancet series on Global Mental Health, 2011
Quote ‘The goals of scaling up mental health care in low-income and middle-income countries can only be achieved if they are based on two foundations: the empowerment of people with mental health disorders, and partnerships between people affected by mental health disorders and mental health professionals’.

2. Article: PANUSP 2011 Cape Town Declaration
Three pages pdf, written by the The Pan African Network of People with Psychosocial Disabilities, 2011
With: ‘For as long as others decide for us, we do not have rights. No one can speak for us. We want to speak for ourselves’ and ‘We wish for a better world in which all people are treated equally, a world where human rights belong to everyone. We invite you to walk beside us. We know where we want to go’.

3. Article: People can recover from mental illness
Three pages pdf, written by Daniel Fisher, National Empowerment Center, power2u.org, USA, 2011
With the Empowerment Model of Recovery from Mental Illness diagram and ‘after people have recovered from mental illness they will still go through the emotional healing that everyone else is involved in’.

4. Doc: Making Recovery a Reality
Twenty pages pdf, written by Geoff Shepherd, Jed Boardman and Mike Slade, of the Sainsburry Centre for Mental Health, London, UK, 2007.
Including the 10 Principles, 4 components and 5 stages of Recovery, service user quotes, obstacles to recovery oriented practice, Top Ten Tips for mental health professionals, etc

5. Doc: Harnessing the ‘lived experience’: Formalising peer support approaches to promote recovery
Seven pages pds, written by Simon Bradstreet, Scottish Recovery Network, 2006
Some history and references to literature. Including a table with ‘Service user gains’ and ‘Peer specialist worker gains’.

6. Brochure: SAMHSA’s Working Definition of Recovery
Two pages brochure pdf, written by Samhsa, Substance Abuse and Mental Health Services Administration, USA, 2011
Including the 10 Guiding Principles of Recovery

7. Brochure: Recovery
Hope for People with Psychiatric Diagnoses

Two pages brochure pfd, written by Vermont Recovery, USA
Brief text about what recovery is and a basic definition.

8. The Emerging Generation: Moving Beyond Service User, Mark Brown
Six pages full text of the speech at the Western Australia at the Asia Pacific Conference on Mental Health, 2012
Mark Brown: ‘I’m a person with mental health difficulties who is not currently accessing any services, not for wont of trying. In fact, I actually deliver services like One in Four, the mental health magazine. Does that mean I’m not a mental health service user anymore?’ Explanation of ‘The New Mental Health’: ‘not so much a movement, but a broad range of projects, organisations and services that are moving in similar directions’.

9. Article: Recovery From Schizophrenia: With Views of Psychiatrists, Psychologists, and Others Diagnosed With This Disorder
Eighteen pages article in Schizophrenia Bulletin, 2009
Exploration of recovery perspectives over time, influences on politics and ‘Particular attention is given to the varying views of psychiatrists, psychologists, and other highly trained persons who have themselves been diagnosed and treated for schizophrenia’.

10. Article: Culture, Stress and Recovery from Schizophrenia: Lessons from the Field for Global Mental Health
Eighteen pages article in Culture, Medicine and Psychiatry, 2010
This cultural case study investigates one U.S. psychosocial rehabilitation organization’s (Horizons) attempt to implement the recovery philosophy of the U.S. Recovery Movement and offers lessons from this local attempt that may inform global mental health care reform.

Roos Korste, psychologist, trainer, blogger and founder of in2mentalhealth

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Comments

  • Francis  On September 17, 2012 at 10:18 am

    There is need voor inclusive approach. The identity and more factors are not serieusely considered specially bij migrants treatment not only by bepolar or ADHD and by other diseases I’a very curious abaout wat was de place of socialisation in the project in Tanzania and South Afrika.

  • Francis  On September 17, 2012 at 10:19 am

    There is need for inclusive approach. The identity and more factors are not serieusely considered specially bij migrants treatment not only by bepolar or ADHD and by other diseases I’a very curious abaout wat was de place of socialisation in the project in Tanzania and South Afrika.

    • in2mentalhealth  On September 17, 2012 at 11:00 am

      Dear Francis. Thanks for the reply.
      Although I’m not 100% certain about the context/meaning of your question I will try to answer. Yes, indeed, ‘an inclusive approach’ is needed.
      The projects mentioned are located just in the middle of the community and not behind a fence or far away from the other people/houses/shops. The persons with mental difficulties are not patients but members/participants of these projects. They engage in all the activities and tasks and take responsibilities. They decide what is the best for them; take life and well being in their own hands and advocate for their rights and against discrimination. Ultimate goal is a independent life, an income and a valuable place within the society/community.

  • egloos.com  On November 14, 2012 at 9:42 am

    Wonderful site you have here but I was curious about
    if you knew of any discussion boards that cover the same topics
    discussed here? I’d really like to be a part of group where I can get opinions from other knowledgeable people that share the same interest. If you have any recommendations, please let me know. Bless you!

    • in2mentalhealth  On November 15, 2012 at 10:54 am

      Hello. What kind of info would you like to share and discuss? What topics? Could you be more specific. Roos

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