Consumer Focused Recovery in Mental Health MHCC Consumer Council Discussion paper aug. 2008

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Consumer-Focused Recovery - a review of the research and literature. Prepared for the Consumer Council of the Mental Health Commission of Canada. Written by Neasa Martin

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Consumer Focused Recovery in Mental Health MHCC Consumer Council Discussion paper aug. 2008

  1. 1. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery P re pa re d by Nea sa Ma r t in , A d vi so r o n S t igm a a n d D i sc r im i na t io n – M HC C n ea sa m a r t in @ s ym pa t ico .ca A DISCUSSION PAPER ON RECOVERY COMMISSIONED BY THE MENTAL HEALTH COMMISSION OF CANADA Consumer-Focused Recovery PREPARED BY NEASA MARTIN, AT THE REQUEST OF THE MHCC CONSUMER COUNCIL
  2. 2. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 2 / 2 3 Why a discussion paper On January 26, 2008 the Mental Health Commission of Canada gathered together its Board, Advisory Committees and staff ‘family’ in Toronto to plan how it will marshal its resources and become a catalyst for change. The Commission seeks to achieve change that is transformative and targeted at enhancing the mental health of Canadian’s through three inter-related priorities: 1) Developing a national strategy for the creation of a comprehensive approach to improving the systems, supports and services that will promote recovery and improve the quality of life of people living with mental illness and their families. 2) Undertaking an anti-stigma and discrimination reduction strategy; and 3) Create a Knowledge Exchange to build knowledge and exchange information on mental health and mental illness. Included in this event was a meeting of self-identified consumers1 , the Commission Chair and Commission staff intended to strengthen ways of working effectively together as partners. Organized by Joan Edwards-Karmazyn and Chris Summerville, (MHCC Consumer Board members) this meeting was seen as a “defining moment in the history of the MHCC”. The Commission has stated from its inception that it will be consumer and family focused. The consumer community is clear that it wants a strong voice in shaping the strategic direction of the Commission and expects “nothing about us - without us”. Acknowledging that “we are part of a fragile revolution”, Chris emphasized that “consumers/psychiatric survivors are re-examining our relationship with the power of the mental health system, government and mental health professionals and seeking new power-sharing partnerships”. This meeting was an opportunity to define, in relation to the Commission’s work, what ‘consumer-centered’ truly means: to identify priorities; to discuss the ways the consumer voice is reflected in the decisions of the Commission; and to ensure the expectations of consumers and the Commission are understood. The results of this meeting were four clear priorities for action: 1. Establish a ‘Consumer Council’ to provide consumers from across the Commission an effective vehicle to meet, to support each other, to discuss issues and to provide the Commission with advice and feedback. 2. Prepare a report on consumer-focused recovery to provide the ‘Council’ with information that will lead to the Commission adopting a common definition of recovery and employing this definition as part of its mission and vision. 3. Facilitate the Commission developing and maintaining effective bridges/links to consumer leaders and stakeholder groups in Canada and internationally to help inform the work of the MHCC. 4. Initiate an evaluation mechanism to measure ongoing consumer satisfaction with the effectiveness of the work of the Commission in regards to the following principles: a recovery focus, person centeredness, consumer/family centeredness.
  3. 3. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 3 / 2 3 Recovery is dealing with challenges Peer support nurtures recovery Recovery helps maps the road ahead The path to recovery is not clearly drawn in a map. We see it as a very person-centred approach; that people will have their own way back into society. The system needs to foster that and facilitate that rather than deliver a specific program that may prejudge that path. -Darrell Burnham 2 The importance of hope What consumers’ say they want and need is hope. Consumer-focused recovery is important because it represents a way of awakening hope, restoring lost dreams and building optimism for the future. Recovery instills a sense of both personal and social responsibility; affirms rights and entitlements; and explicitly states an expectation of working as equal partners with care providers. The MHCC has made a commitment to advancing a recovery- oriented approach to its mission, there is a stated or implied assumption that not everyone can or will recover. This belief runs contrary to a consumer-focused view of recovery and helps to plants the seed from which stigma grows. The belief that people with serious mental illness cannot recovery creates fear within the public, pessimism within care providers and despair among people living with mental illness and their families. Stigma has been identified as a key priority for the Commission and is considered perhaps the single most important barrier to seeking help and remaining engaged in treatment. Stigma contributes to the low priority mental illness and addictions is accorded by government, policy planners, researchers and funders and leads to discriminatory practices which deny consumers equal rights, social inclusion and full citizenship. To be successful in effecting formative change in Canada, services and supports must move to be recovery focused and driven. The extent to which this occurs will be an important benchmark from which the success of the MHCC can be measured. There is a growing national and international consensus strongly supporting a consumer-focused recovery approach which provides a clear vision, values, an organizing philosophy, and a recovery oriented set of principles to create the architecture for building promotion, prevention, services and supports. It offers a detailed road map for reframing the relationship between consumers and government, health and mental health services, professional health providers and their families and society. Recovery is the bridge across divisive
  4. 4. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 4 / 2 3 beliefs about what mental illness is, how it should be treated and whose expertise has supremacy. It represents an ideal around which all stakeholders can unite. Canada lags behind other international jurisdictions that have embraced recovery as an organizing approach to system design and including its values, principles and practices in policy and planning decisions. 3 Despite wide- spread interest internationally, recovery remains poorly understood within Canada and there are very different opinions of what it means. Many health care providers and researchers see recovery as a relatively new approach to addressing mental illness and as a passing fancy - more philosophical then scientific. However, recovery has a long history deeply rooted in the consumer movement. Although there is a sound and growing evidence base to support recovery concepts, built upon a rich narrative of people in recovery, this knowledge has not uniformly found its way into professional literature in Canada. Often confused with psycho-social rehabilitation, the language and practice of consumer-focused recovery is at risk of being lost with a re-labeling of programs rather than achieving a promising paradigm shift in values and thinking. Recovery is not just a journey for consumers. Canadian society must embrace recovery and give up debilitating negative attitudes and behaviours towards mental illness. We must shift from managing illness towards fostering hope that nurtures promotion, prevention and recovery. The Commission has taken on the daunting task of encouraging Canadians to open their hearts and minds to people living with mental illness and to make room for them as full citizens within the community. This will only start with the promotion of an optimistic outlook and belief in recovery. This discussion paper is intended to support the discussions that will lead to a shared understanding and common language of what consumer- focused recovery means. The paper will review recovery’s history, philosophy and values. This shared understanding will allow the Commission ‘family’ and its external partners to be clear about the meaning of recovery and to move towards the use of a common shared meaning of the concept. Shared meaning is essential to supporting transformative change.
  5. 5. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 5 / 2 3 The history of recovery Recovery, as a concept, arose from and is deeply rooted in the consumer movement. Starting in the 1930’s, there has been a burgeoning first person narrative by people living with mental illness describing their journey towards recovery. 4, 5 Recovery as an ideal gained significant traction in the 1970’s when it was associated with “liberation” as state hospitals closed their doors and people were moved with minimal support into the community. Early leaders such as Judy Chamberlain describe consumer-focused recovery as a fundamental challenge to “mentalism”, or second class citizenship and discrimination, which was based on a belief that people with mental illness are unable to make their own decisions, function independently, or take care of themselves, thereby requiring the support and assistance of well-intentioned others to meet their needs.6 Consumers became increasingly vocal in challenging the way in which community services perpetuated many of the discriminatory practices they experienced in institutional settings. William Anthony attributed this dissatisfaction to treatment strategies that were too narrowly focused on symptom alleviation instead of addressing people's multiple residential, social, vocational, and educational needs and wants. 7 Increasingly, consumer/survivors were no longer willing to accept being defined by their illness, and were reclaiming control over their day-to-day decision- making demanding control over major life choices. The 1970’s also saw a shift towards viewing disability, not as a consequence of illness or injury, but as a social disability caused by the barriers that society imposes, the stigma attached to illness/disability, and the resultant social distancing. Consumers and their advocates saw recovery as part of a civil rights movement rather than as part of a rehabilitation or treatment enterprise. This shift placed responsibility on policy planners, service providers and the community as a whole to make adjustments to accommodate people living with mental illness rather than rooting mental illness as a defect within the individual. Joining other social movements, consumers saw recovery as a rallying call to have their civil rights restored, and were demanding to be treated as full and contributing members of society. In the background to these social changes there was a “quiet revolution” underway as consumers joined together in communities of support to share their stories, provide mutual assistance, and learn from each other new and different ways of coping, all of which led to a dawning awareness that recovery was possible. As Pat Deegan describes, a “conspiracy of hope” was emerging within the consumer community. 8 Recovery is an ideal that was borne out of protest. It is a notion derived from self-help and self-advocacy. It was first defined as “what people who have these conditions do to manage their mental illness and/or addiction and to claim or reclaim their lives in the community. 9 What has grown from these roots is an increasingly well- organized challenge to the low expectations of society including many health care providers, and with a demand to reshape the attitudes, behaviour and services to promote recovery. Consumers have defined for themselves what this means and, through their own experiences, identified a clear set of organising values and principles that support recovery.
  6. 6. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 6 / 2 3 Can people recover from mental illness? “…Over the years, psychiatrists and people, no one actually says, ‘You can recover’. It’s never mentioned…” Anonymous10 Historically, people with mental illness were not expected to recover. Consequently, all too often the focus of psychiatric treatment has been on diagnosis, symptom management, disease containment and the treatment of psychopathology in an effort to prevent relapse and stave off deterioration in function. The focus was on reducing disturbance rather than working with patients to develop more personal and meaningful ways of living. To avoid instilling unrealistic expectations, many health care professionals rarely gave positive prognoses for serious mental illness. 11 Dr. Pat Fisher refers this to as “promoting a false hopelessness”. A diagnosis such as schizophrenia or bipolar disorder was seen as a life sentence with a predictably progressive downward course of disability and dependency. The assumption that mental illness is a lifelong condition that can only be managed by long-term medical treatment continues to be widespread in Canada and shapes the focus of much of the treatment. According to Chris Summerville, Executive Director of the Schizophrenia Society of Manitoba, “The Diagnostic and Statistical Manual-IV, the standard for diagnosis of schizophrenia and other mental illnesses, describes the illness with such dark and devastating language that you may feel any hope you have for your ill family member are based in delusion.” He refers to schizophrenia as the “Kiss of death diagnosis”.12 The low expectations held by many professionals and families and society in general is felt by consumers and can easily become a self-fulfilling prophecy. 13 Since the 1970’s longitudinal research studies have challenged existing pessimism about the chronic and progressive nature of mental illness, and bolstered the idea that recovery, even for those with “severe, prolonged and chronic illness,” was indeed possible. Harding et al found that the majority of patients, without medications and with or without professional assistance, were “working, relating well to family and friends, integrated into community, and behaving is such a way as not to be able to detect having ever been hospitalized for any kind of psychiatric problem. 14, 15 A recent World Health Organisation longitudinal study (over 2 -3 decades) with diverse cultural populations found one half to two-thirds of people diagnosed with schizophrenia experienced significant improvement or recovery using similar measures to Harding. 16 Although this research is promising, the concept of recovery as a possibility has not penetrated deeply and pervasively enough into clinical practices and the belief in chronicity remains strong. Harrow and Jobe, in their 15 year longitudinal study, found that un- medicated schizophrenia patients showed more periods of recovery and better global functioning than those patients on anti-psychotic medication, suggesting not all people living with schizophrenia need to use antipsychotic medications continuously throughout their lives.17 What are people recovering from? In listening to consumers and their families there is no question that, for many people, receiving a diagnosis of a mental illness is an enormous relief. It can help people understand and explain behaviours, which were both distressing and perplexing. A diagnosis can also lead to a treatment plan that provides a degree of hope and faith that things will get better. Treatment can help restore functioning and create a firm foundation of support that
  7. 7. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 7 / 2 3 assists people to undertake the challenging work of understanding those factors which contributed to their illness, ways to prevent a reoccurrence, and strategies for restoring balance in one’s life. However, the pathways to mental health problems and illness are multiple and complex. They are distributed unequally across all segments of society. For example, within the Canadian experience First Nations, Inuit, and Métis people struggle with mental health challenges stemming from a history of colonialization, family and community fragmentation, loss of land, cultural genocide from policies of forced assimilation, and abuses suffered in residential schools, in addition to social and economic marginalization. 18 Solutions must be applied from within these communities, using culturally appropriate strategies, which include a focus on restorative justice, healing from trauma and loss, addressing widespread poverty, and settling land claim disputes. Individual, family and community recovery from mental health problems will come from affirming the strengths of the communities and building on the cultural and religious beliefs and resilience of the individual. 19 Consumers also frequently speak of their need to recovery from loss - loss associated with their illness, losses of identity, valued roles, purpose, meaning and the loss of social inclusion. They speak of the harm associated with being labelled as mentally ill and the stigma and discrimination, which results. A diagnosis can be a serious double-edged sword. In 2007 the Native Mental Health Association and the Mood Disorders Society of Canada held a “Building Bridges”20 symposium to identify the similarities between the history and experiences of mental health consumers and Aboriginal people. Similarities between these two marginalized groups included: social marginalization; stigma and discrimination; and a higher prevalence of traumatic experiences than the general population. These common issues were related to: higher rates of poverty, unemployment, and homelessness; an overrepresentation in the criminal justice system; and suicide and poor health outcomes.” Similarly, poverty, racism, homophobia, immigration and refugee displacement and post-traumatic stress of our military are all issues confronting the mental health system. The western bio-medical model, which currently dominates much of psychiatric treatment, roots mental illness within the individual and often as a function of genetic defect or a ‘broken brain’. This model relies heavily on labelling illnesses and using pharmacological treatment, and ignores or minimizes the importance of the emotional, spiritual, and environmental realms. It is insufficient to address the complexity of these challenges or provide the holistic approach wanted by consumers that bridges body, mind and soul and builds strong, healthy and inclusive communities. Within a consumer-focused recovery approach, the bio-medical approach is seen as one of many valued resources that people can draw upon to aid them in recovery. Recovery defined Although there is a growing interest in recovery, it is surprising to find that there is no shared definition of what recovery means from a consumer perspective. 21 Many clinical researchers and treatment groups identify recovery as the alleviation of symptoms and a return to pre-morbid functioning, including vocational functioning, independent living and positive family and peer relationships. 22, 23,24,25 Differences of opinion about recovery within the consumer community in large part rest on the perceived source of mental illness and whether it is a ‘diseased’ state, a consequence of severe emotional distress and trauma, and/or a reaction to situational events in ones’ life. For some consumers, recovery implies an acceptance of mental illness as a biomedical construct.
  8. 8. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 8 / 2 3 Others see it as a journey of discovery unique to all human beings dealing with disability and loss. Some consumers question whether “recovering what is lost through illness” is possible or even desirable. They see recovery, not about reclaiming the person who was before illness but learning to make meaning of what has happened and exploring who they want to become – of finding a new normal. Nevertheless, a consensus is emerging. Recovery, as the majority of consumers define it, holds that neither symptom remission nor a return to pre-morbid functioning is necessary for recovery to occur. Nor does it require professional support to be accomplished. 26, 27 Social inclusion and self-determination lie at the heart of the consumer-focused view of recovery along with a focus, not on symptom management, but on the pursuit of life goals and personal aspirations. At its core, recovery is about hope and meaning, it is about overcoming the stigma, discrimination and trauma associated with a diagnosis of mental illness. It is about assuming control over one’s life, being empowered to make one’s own decisions and being fully engaged and active citizens. 28,29,30 ,31 Consumers recognize it to be a uniquely personal and individualized process that can be either obstructed or fostered by supportive people and within facilitating environments. 32 In the words of consumers... Recovery is the awakening of hopes and dreams. The recovery process involves gaining the knowledge to reclaim one’s desires by learning to make choices that bring strength rather than harm. Recovery involves living a meaningful life with a capacity to love and be loved. The Canadian Consumer/Survivors’ Lexicon of Recovery 33 Recovery is…self-awareness and having more control over your life. Valuing yourself, taking advantage of opportunities, having a passion for life. Get rid of the past and move forward. Have faith in yourself. Anonymous participant in first episode psychosis clinic - Ontario 2008 The concept of recovery is rooted in the simple and yet profound realization that people who have been diagnosed with mental illness are human beings… The goal is to become the unique, awesome, never to be repeated human being that we are called to be. Those of us who have been labeled with mental illness are not de facto excused from this fundamental task of becoming human. In fact, because many of us have experienced our lives and dreams shattered in the wake of mental illness, one of the most essential challenges that face us is to ask who can I become and why should I say yes to life. Pat Deegan34 Recovery is happening when people can live well in the presence or absence of their mental illness and the many losses that may come in its wake, such as isolation, poverty, unemployment, and discrimination. Recovery does not always mean that people will return to full health or retrieve all their losses, but it does mean that people can live well in spite of them. L. Curtis. 35
  9. 9. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 9 / 2 3 Recovery involves a process of restoring or developing a meaningful sense of belonging and positive sense of identity apart from one’s condition while rebuilding a life in the broader community despite or within the limitations imposed by that condition. Larry Davidson, Ph.D.36 Despite a growing research base the idea of consumer-focused recovery remains “controversial and, some say, even illusory.” 37 The divergence of opinions creates a barrier to the formation of a shared understanding of what recovery means, how it is achieved, promoted, measured and evaluated. For consumers it is not a model that must be codified and operationalized but instead an important ideal that is in continuous evolution. Recovery holds promise for aligning services and integrating varied approaches to care that in the past have been battle grounds for debate. Recovery holds promise in unifying consumers, families and health care providers in the pursuit of a common shared goal. The Philosophy of Recovery Revolutions begin when people who are defined as problems achieve the power to redefine the problem. John McKnight, 199238 At its core, recovery challenged the stories that we’ve been told about our experiences and what they mean. It opens up the possibility of discussion about how we can work together in ways that really share power, risk, and expertise. It must be a process in which everyone moves out of old, comfortable roles and begins to talk about mutuality, boundaries, risk, and who gets to define and decide on treatment. For this to happen, everyone involved must challenge his or herself to respond in new ways. Sherry Mead39 Recovery has been described in many different ways as a process, a vision, a set of guiding values and principles. As a consumer movement it is based ‘more on a philosophical conviction than scientific evidence’ 40 (although there is supportive theory and evidence dating back to the 1960’s as well as a growing body of evidence to support the underlining principles of recovery). Consumer-focused recovery is not seen as a treatment modality but rather as a paradigm shift in thinking that fundamentally advocates for a new relationship between people with a lived experience of mental illness and their professional care givers and families. Recovery offers a different lens through which mental illness is viewed. It is about holding a hope-filled and optimistic belief, drive, and commitment to the principle that people can and do recover control over their lives, even when they may continue to live with ongoing symptoms.41 There are profound philosophical tensions between consumer-focused recovery and patient (or illness) focused psychiatry. Recovery is about equality and respect and giving people the tools to become active participants in their own care along with a rejection of the chronic nature of mental illness. Tensions arise when recovery- oriented approaches collide with treatments focused on managing symptoms, a dependence on medications, the use of compulsory treatments, an aversion to risk, and the neglect of psycho-social supports and the determinants of health. Consumer-focused recovery conflicts with mental health care systems where all of the expertise is
  10. 10. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 0 / 2 3 assumed to rest with the professional, where coercion is used, and where the allocation of resources is given to those who are compliant. 42 Recovery vs. Rehabilitation Recovery is not the same thing as rehabilitation although they are often used interchangeably. Within psychiatry, rehabilitation medicine, through the use of the psychosocial rehabilitation model43 is beginning to refine its practices to incorporate more of the recovery principles with a greater emphasis on self-management, and a strengths-based approach, which emphasises what people can rather than can’t do.44 “Rehabilitation refers to the services and technologies that are made available to disabled persons so that they may learn to adapt to their world. Recovery refers to the lived or real life experience of persons as they accept and overcome the challenge of the disability.” Pat Deegan45 As interest in recovery grows so has concern that this consumer-focused concept is at risk of being appropriated by health care policy makers and professionals who, in their desire to create a recovery system, risk losing its more inspiring and life-affirming qualities. However, to be transformative, it is essential that recovery remains an ideal owned and defined by consumers. The fear is that recovery will become just another model that will be applied to people living with mental illness and its real meaning will be devalued.46 The Coalition of Alternative Mental Health Resources summarizes the challenge of recovery in this way: It (recovery) has given hope to service providers who clearly have had to work in a climate that must feel and have felt like Sisyphus' rock. It is giving hope to many more consumer/survivors who have had to live with the social death sentence of a 'serious mental illness'; with a label that stigmatized us as hopeless and helpless; and that immediately marginalized us. For many, the recovery word is also frightening. It has thrust itself onto the scene in the last several years and tends to raise more questions for consumers than anyone else. It 'feels' like something else we will eventually have to comply with, and not necessarily on our own terms. Robert Mackay 47 Recovery - Process or Outcome? Recovery is viewed both as a process and an outcome. Families and health care providers are most concerned with the outcomes of recovery which include managing illness, reduced symptoms and hospitalizations, engagement in work, having friends and living in a place of one’s choosing. A consumer-focus places less attention on measuring goals and outcomes and is more concerned with whether a person is “in recovery”. For consumers, recovery is about creating a new personal, positive vision of oneself beyond the limitations imposed by illness. It is about shifting from a place of despair, the awakening of hopefulness, and regaining a sense of meaning and purpose. It is moving from isolation and loneliness toward connection and engagement. It is about moving from a passive adjustment to illness and towards active coping. Recovery involves healing physically, socially, spiritually and emotionally. It is a uniquely personal process, which is non-linear and marked by progress and setbacks. However, people living with mental illness must overcome more challenges than just
  11. 11. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 1 / 2 3 those imposed by illness. They must also overcome the barriers to inclusion; the iatrogenic effects of treatment interventions; and the social stigma and discrimination attached to the illness. Factors that have been consistently identified as elements of recovery also include: having a spiritual or philosophical belief system that gives meaning to one’s experience; self-empowerment, where people take responsibility for managing their own recovery; and acquiring coping skills, self-esteem, self-acceptance, patience and confidence. Recovery comes with feeling stable, normal, at peace, engaged and passionate about life. The importance of reaching out to others, and interpersonal relationships between peers – through participation in psychosocial rehabilitation programs, peer run networks, and peers support programs - have also been identified as essential to recovery. Peers serve as role models of recovery, and provide a safe, accepting, non-judgmental and understanding community. The emergence of peer support specialists is showing tremendous promise in fostering recovery. Interestingly, the importance of connecting with family members and with professionals appears to be of secondary importance to consumers. Almost universally, the power of a single person who believes in the individual, even when they struggle to believe in themselves is seen as critical to recovery. 48,49,50,51,52,53 In ‘Out of the Shadows at Last’ report consumers spoke eloquently about the importance of peer support in their recovery and how self-help and peer support helped to empower them and counteract stigma by providing a place where they felt safe and welcome. This was of particular importance for those groups who have been poorly served by the mainstream mental health system. 54 Why self-help? People involved with their peers within self-help groups take on a proactive approach towards managing their problems and finding solutions. The focus is on wellness and not illness, on ability and not disability, on becoming at ease with one’s limitations and not remaining diseased within one’s limitations, on focusing on the beginning of the recovery process and not on remaining stagnant within one’s misery. It is about gaining the energy to have choice once again and setting about to plant the seeds of choice to enable the consumer- survivor once more to feel alive. Joan Edwards-Karmazyn 55 Components of Recovery In December 2004, the Substance Abuse and Mental Health Services Administration, USA, in partnership with other agencies, convened an expert panel including mental health consumers, family members, providers, advocates, researchers, academics, managed care representatives, accreditation organisation representatives, State and local public officials, and others to review existing literature and research, and to develop a shared understanding on recovery. Through a consensus process, they identified the following fundamental components of recovery. 56 The 10 Fundamental Components of Recovery Self-Direction: Consumers lead, control, exercise choice over, and determine their own path of recovery by optimizing autonomy, independence, and control of resources to achieve a self-determined life. By definition, the recovery process must be self-directed by the individual, who defines his or her own life goals and designs a unique path towards those goals.
  12. 12. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 2 / 2 3 Individualized and Person-Centered: There are multiple pathways to recovery based on an individual’s unique strengths and resiliencies as well as his or her needs, preferences, experiences (including past trauma), and cultural background in all of its diverse representations. Individuals also identify recovery as being an ongoing journey and an end result as well as an overall paradigm for achieving wellness and optimal mental health. Empowerment: Consumers have the authority to choose from a range of options and to participate in all decisions—including the allocation of resources—that will affect their lives, and are educated and supported in so doing. They have the ability to join with other consumers to collectively and effectively speak for themselves about their needs, wants, desires, and aspirations. Through empowerment, an individual gains control of his or her own destiny and influences the organizational and societal structures in his or her life. Holistic: Recovery encompasses an individual’s whole life, including mind, body, spirit, and community. Recovery embraces all aspects of life, including housing, employment, education, mental health and healthcare treatment and services, complementary and naturalistic services, addictions treatment, spirituality, creativity, social networks, community participation, and family supports as determined by the person. Families, providers, organizations, systems, communities, and society play crucial roles in creating and maintaining meaningful opportunities for consumer access to these supports. Non-Linear: Recovery is not a step-by-step process but one based on continual growth, occasional setbacks, and learning from experience. Recovery begins with an initial stage of awareness in which a person recognizes that positive change is possible. This awareness enables the consumer to move on to fully engage in the work of recovery. Strengths-Based: Recovery focuses on valuing and building on the multiple capacities, resiliencies, talents, coping abilities, and inherent worth of individuals. By building on these strengths, consumers leave stymied life roles behind and engage in new life roles (e.g., partner, caregiver, friend, student, employee). Th e process of recovery moves forward through interaction with others in supportive, trust-based relationships. Peer Support: Mutual support—including the sharing of experiential knowledge and skills and social learning—plays an invaluable role in recovery. Consumers encourage and engage other consumers in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, and community. Respect: Community, systems, and societal acceptance and appreciation of consumers —including protecting their rights and eliminating discrimination and stigma—are crucial in achieving recovery. Self- acceptance and regaining belief in one’s self are particularly vital. Respect ensures the inclusion and full participation of consumers in all aspects of their lives. Responsibility: Consumers have a personal responsibility for their own self-care and journeys of recovery. Taking steps towards their goals may require great courage. Consumers must strive to understand and give meaning to their experiences and identify coping strategies and healing processes to promote their own wellness.
  13. 13. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 3 / 2 3 Hope: Recovery provides the essential and motivating message of a better future - that people can and do overcome the barriers and obstacles that confront them. Hope is internalized; but can be fostered by peers, families, friends, providers, and others. Hope is the catalyst of the recovery process. Mental health recovery not only benefits individuals with mental health disabilities by focusing on their abilities to live, work, learn, and fully participate in our society, but also enriches the texture of American community life. America reaps the benefits of the contributions individuals with mental disabilities can make, ultimately becoming a stronger and healthier Nation. 57 Stages of Recovery Pat Deegan, PhD, a person recovering from Schizophrenia and a Clinical Psychologist, describes with elegance the journey of awakening hope, the first crucial step of recovery, in “Recovery and the Conspiracy of Hope”58 . Some people may take years for the light of hopefulness to penetrate the darkness of despair or denial. Although not a linear process, people recovering from serious mental illness describe going through a series of stages on their journey to recovery. 59 These include: 1. Moratorium – A time of withdrawal characterized by a profound sense of loss and hopelessness; 2. Awareness – Realization that all is not lost and that a fulfilling life is possible; 3. Preparation – Taking stock of strengths and weaknesses regarding recovery and starting to work on developing recovery skills; 4. Rebuilding – Actively working towards a positive identity, setting meaningful goals and taking control of one’s life; 5. Growth – Living a meaningful life, characterized by self-management of the illness, resilience and a positive sense of self. This ‘stages to recovery’ approach harmonizes with the Stages of Change Model developed by Prochaska and DiClemente 60 used to understand and support recovery from addictions. This conceptual model of change provides a useful roadmap on how family and care providers can support and nurture recovery at its various stages. The similarities of the stages of change, identified through first person narrative accounts of recovery, and the approach developed by Prochaska and DiClemente creates the potential for a bridge of understanding and commonality across the existing silos that divide the addictions and mental health systems. Both acknowledge that change does not happen all at once, that people make progress at their own rate, and that they must master a unique set of issues in order to make meaningful change. As with recovery, change is seen to come from within the individual and cannot be externally imposed. Change requires taking risks, trying, failing, and trying again. The Acceptability of Risk Many mental health professionals and families hold firmly to the belief that people with mental illness are vulnerable and must be protected from harm. The vulnerability and the lack of insight assigned to people living with mental illness is an overarching concern that underscores many coercive actions, legislation and treatment approaches which deny people living with mental illness their basic rights. Recovery offers a conceptual
  14. 14. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 4 / 2 3 framework for overcoming the sense of alienation between those who provide care and the intended beneficiaries who may reject the help that is offered. Recovery does not diminish the importance of professional competence, the importance of health care practitioners or their knowledge, skills and expertise. Nor does it deny the usefulness of medications as a tool to support recovery. Instead, it moves the pieces of the practice of psychiatry requiring change into alignment with other health care specialists whose role it is to assess, diagnose and educate the person about the cost and benefits of approaches available to treat their condition, and to provide appropriate care based on an agreement to act. The responsibility for making good health decisions is then left up to the individual and their loved ones, and not to the health care provider.61 This does not mean that when a person is at serious risk, care providers should not act. However, negotiation of care during periods of wellness and the development of Advanced Care Directives reflect a commitment to a recovery approach. Pat Deegan asks us to consider: Have we embraced the concept of the “dignity of risk” and the “right to failure”? “Chronically normal people” (CNP’s !), or people who have not been psychiatrically labeled, are allowed to make dumb, uninsightful decisions all the time in their lives. My favorite example is Elizabeth Taylor who just got her eighth divorce. We might say, “She lacks insight! She is failing to learn from past experience!” However, when she embarks on marriage #9, no SWAT team of nurses with Prolixin injections will descend upon her “in her best interest”. But just imagine if a person with a psychiatric disability were to announce to their treatment team that they were about to get married for the 9th time! People learn, and sometimes don’t learn from failures. We must be careful to distinguish between a person making (from our perspective) a dumb or self-defeating choice, and a person who is truly at risk. 62 Recovery and First Episode Psychosis The majority of qualitative research on consumer-focused recovery has been undertaken with individuals with long-standing mental illness. The core elements that define recovery may or may not be transferable to those in the early stages of psychosis. Researchers in Ontario recently (March 2008) examined the meaning and processes of recovery from a service-user perspective seeking an understanding the personal experience of treatment. They identified three important self-described recovery domains that are fairly consistent to those described by other consumers with a longer mental illness history: 63 1. Personal recovery elements: Developing an understanding of the illness experience that was coherent and meaningful, acceptance and integration of the illness experience, the attainment and enactment of individual strategies for managing and coping (control). They identified five elements of personal recovery: Restoration - of self-worth and self-confidence; Recognizing – changes located in self; Reckoning – determining what is illness and what is self, constructing an interpretation; Reconciling – “coming to terms” with losses, moving forward, “acceptance” of illness; Restoring – regaining sense of agency in the experience, increasing self-efficacy and self-confidence, increased sense of control; and Redefining – regaining sense of worth and esteem, full integration of the illness experience, transformation. 2. Social recovery: A restored sense of social worth, a restored sense of social competency, meaningful engagement in work or school, meaningful and fulfilling relationships. Core to social recovery included
  15. 15. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 5 / 2 3 resumption of roles (returning to school, graduation) and the presents of relationships including reciprocal friendships, healthy relationships with family and romantic relationships. 3. Illness Recovery: The elimination or diminishment of symptoms, the control rather than elimination of affective symptoms, positive symptoms of psychosis, negative symptoms of psychosis, and cognitive symptoms. Creating Recovery Oriented Systems “You can do it. We can help.” 64 The consumer-focused recovery vision is fundamentally altering the way in which mental health services are being delivered around the world including: the USA65 , New Zealand 66 , Australia67 and the Scotland68 /United Kingdom. Recovery is becoming the overarching goal or mission that unifies and integrates, in a holistic way, the efforts of all services in mental health including self-help services, basic support, rights protection as well as treatment and rehabilitation services. 69 70 It has been argued that much of psychology and psychiatry for the past 100 years has focused on deficits and disorders. The objectives of recovery-oriented services move away from a focus on symptom relief and relapse prevention and towards a strengths based practice building on the belief that people with mental health problems also have resilience, skills and strengths that need to be honoured to support recovery.71 Dr. Larry Davidson’s use of the Home Depot’s slogan “You can do it - We can help” effectively to emphasizes the changed relationship between services providers and consumers within a recovery-oriented system. Recovery implies a very different power relationship between professionals and the people they serve, built on respect, openness, honesty and trust. It requires that care providers move from a position of power and authority over patients to someone who behaves more like a coach or trainer. The professional provides the person with expert knowledge, insights, resources, and information to help them make informed choices. They build skills and encourage links to natural support systems (family, friends) networks and supports (peer support) that will help them manage their condition. There are also important basic material resources such as: a livable income, safe and decent housing, healthcare, transportation and a means of communication that move people towards recovery. Poverty and a lack of basic resource undermine safety and hold people back in their recovery. 72 Dr. Dan Fisher, a leader in the consumer movement and a psychiatrist, speaks of the importance of creating “a positive culture of healing” within human service organizations which is promoted through creating a “culture of inclusion, caring, co-operation, dreaming, humility, empowerment, hope, humor, dignity, respect, trust, and love. "Recovery-oriented environments are characterized by “tolerance, listening, empathy, compassion, respect, safety, trust, diversity, and cultural competence”. 73 Recovery systems are committed to hopefulness beyond symptom reduction and maintenance, and encourage the pursuit of meaningful dreams and quality of life. 74 A healing culture is also oriented toward human rights for all individuals and groups. Consumers' rights are incorporated into all decisions, and informed consent is part of the bedrock of daily practice. This includes the avoidance of coercion, restraints, seclusion, community treatment orders or involuntary commitment. The use of these strategies is seen as an indication of treatment failure. According to Davidson, recovery-oriented care identifies and builds upon assets, strengths, areas of health and competence to support each person’s efforts in managing his or her condition while regaining a meaningful, constructive sense of membership in the broader community. It is based on person-centred care planning and
  16. 16. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 6 / 2 3 practice principles oriented to the individual’s goals. It allows for maximum choice and is culturally sensitive. It also holds providers accountable for positive outcomes and includes consumers in evaluating the usefulness of the treatment and support provided in meeting their recovery goals. 75 The inclusion of consumer-run services is essential to recovery-oriented systems. Consumers are included as services are planned, implemented and evaluated. Examples include: advocacy, peer support programs, alternative services to hospitalization, crisis services and warm lines, economic development initiatives and programs which provide role modeling and mentoring. 76 To achieve system-level change, recovery cannot be seen as an ‘add-on service’ but rather as a fundamental change in the way supports and services are designed, delivered, funded and evaluated. Priorities such as housing, employment, friendships, purpose, and involvement in one’s community become central objectives to treatment. Treatments, whether physical, psychological or social, are only seen as useful if they assist the individual in attaining these goals. The values of recovery can be applied regardless of the type of service being provided (i.e., mental health promotion, treatment, case management, rehabilitation, crisis intervention, etc.). However, to be recovery-focused, services need to incorporate a minimum of four core recovery values: 1) person orientation; 2) person involvement; 3) self-determination/choice; and 4) growth potential. People are not treated as “cases” but as partners in a relationship built on respect and co-operation, not compliance. A number of key principles necessary for system-level change to be successful include: 1) Recovery cannot be seen as an ‘add on’ to existing services, supports and systems but as an over-arching aim; 2) Recovery is not viewed as a specific type of service, intervention or support. It is something that people do for themselves in order to manage their illness and “get their lives back”; 3) Recovery is not something service providers can do for people. It is up to people living with mental illness to lead the way and define recovery for themselves; and 4) Consumers and service providers must both share a positive vision of what constitutes a recovery-oriented system of care, and all supports and services must be focused to lead to recovery. 77, 78 In the United States in 2002, a National Study of Consumer Perspectives on What Helps and Hinders Recovery was undertaken to define a set of mental health system performance indicators on recovery. These include: • Mental health servicesmust recognize and allow for self-agency while bolstering, or at least not undermining, such efforts. Seeing people as whole persons beyond their labeled identity is integral to recovery. • A shift to a recovery orientation will require attention to wellness and health promotion, not simply attention to symptom suppression or clinical concerns. Attentionmust be paid to basic needs in safe and affordable housing, health care, income, employment, education and social integration. • A recovery orientation will require close attention to fundamental rights and needs. Re-orientation away from coercion requires alternative resources as well as training. • There needs to be a continual evolution in our thinking, and for development of knowledge concerning recovery amongdiverse communities. For example, the balance of autonomy and self-reliance versus group or family focusmay differ in recovery based on such factors as ethnicity and culture. Special attention is needed for people who have experienced trauma or who have substance use disorders.79
  17. 17. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 7 / 2 3 Recovery, research and training When you change how you look at things, what you look at changes. Wayne Dyer Within a recovery-oriented system, what is researched and evaluated and how it is undertaken changes. Service users truly become consumers and take an active role in evaluating whether the supports and services they received are aligned in a manner which supports their recovery. Measures of quality of life focus more on established recovery principles, and less on symptom reduction, treatment compliance, hospitalization and employment. Measuring recovery also requires the use of qualitative research and participatory action research design to get at those measures missed by quantitative research. Consumers and families are also included not as the object of research but as research partners; they play a role in defining the priorities of inquiry, such as what needs to be researched to improve recovery outcomes. In this way knowledge exchange becomes imbedded into the research process. As well, a recovery-oriented system requires rethinking how professionals are trained. There needs to be careful consideration given to the core competencies required of mental health care providers across the continuum of care. In New Zealand they identified the following core competencies: knowledge of recovery principles; supporting resourcefulness; accommodating differing views about mental illness, treatments and services; skills in self-awareness and respectful communications; protecting service users’ rights; cultural safety; and supporting family support in services.80 Recovery and Stigma Stigma and social exclusion are important contributing factors in the occurrence and persistence of mental illness/ disorders and result in significant discrimination in multiple areas of living. Although there has been a decade of public education to reduce the stigma towards mental illness, there is evidence to show that it is increasing towards people living with serious mental illness and addictions.81 Professional training and public education has traditionally emphasized that mental illness is a biologically-based illness or brain disorders, that is neither anyone’s ‘fault’ nor a sign of personal weakness. An unexpected consequence may be that the public looks upon people with mental illness as incapable of recovering and therefore hopeless, leading to increasing social distance and discrimination. The Canadian Alliance for Mental Illness and Mental Health’s Mental Health Literacy research also found that amongst Canadians surveyed “having a medical understanding of mental disorders increases stigma and social distance, and reduces optimism about treatment outcomes, perhaps because the disorder is viewed as fixed and chronic”.82 Dr. Bruce Link found in surveying the public attitudes of Americans that biological causes, mental illness labels, and psychiatric treatment seeking are reliably associated with increased perceptions of dangerousness and decreased assessments of competence. As Dr. Link states “We cannot address these problems through the message we have already delivered… that mental illnesses are illogical and genetic causes that can be treated… those are important messages in themselves but they do not solve the problems of stereotyping and discrimination.” Dr. John Read found similar results in population studies in NZ.83 The negative view of mental illness, as presented by health care professionals, can also contribute to self-stigma unemployment 84 , and has influenced public perception of dangerousness. Recovery-oriented systems are less concerned with diagnosis and labeling disorders than with the overall health and well-being of the individual and in providing direct support to assist people in functioning as full citizens within their communities. This means attending to issues of stigma, discrimination, self-identity and disclosure
  18. 18. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 8 / 2 3 as important areas of focus. Consumers must play a leadership role Consumers across the world have played a leading role in promoting recovery as an antidote for pessimism, as the art of the possible and a road map for moving forward together. Those jurisdictions which have gained traction in advancing consumer-focused recovery systems have invested financial resources in building consumer and family leadership, so that they can actively participate in orienting the mental health systems towards recovery, fostered consumer and family participation in research, and support the developing consumer-led supports, services and economic development enterprises. Over the last few decades, consumers across Canada have banded together to provide mutual aid, peer support and economic development, often with no or paltry support from governments. Research has identified that this type of support is highly valued, does promote recovery and reduces reliance on mental health services as well as hospitalization. Canadian consumers are playing an important role in bringing a consumer-recovery focus to the attention of governments and service providers, and are participating in system planning, often without respect and financial support and against considerable resistance. While there is a vibrant consumer community in Canada, it remains a ‘fragile revolution’ due to a lack of fiscal resources to support consumers’ playing a leading role. If the Commission hopes to drive systemic transformation, then it will require the support and leadership of consumers and family members across the country to provide the engine for change. As with any marginal group, involvement must be of a critical mass to move from tokenism to partnership. Transformation will come when consumers take a meaningful and leadership role in steering their own care and shaping the mental health system as a whole. Recommendations for the MHCC “Everyone loves progress - no one likes change” Anon. The MHCC came into being to address the enormous unmet needs of people living with mental illness and their families, and to unite a fragmented ‘system’ of care to better serve the needs of Canadians. Through the Senate’s report85 and its multiple consultations86 , 87 the Commission has heard from stakeholders that recovery is uniformly considered a strategic priority for the Commission. Recovery provides a set of values, principles and practices that is increasingly evidence-based. Most importantly, it gives us a clear vision of our destination. Consumer-focus recovery provides a compelling and coherent overarching framework to guide the development of a National Strategy that holds promise for bridging existing silos and uniting stakeholders around a common goal - promoting mental health and improving the quality of life for people living with mental illness and their families. It provides an approach that can be easily measured using meaningful parameters, and therefore allows public funders a way of determining value for money. Moving towards recovery does not require an investment in new services, so much as a re-tooling of what is already in place. Moving towards a recovery-oriented focus will take time and effort built on a shared understanding and a commitment to move forward. 1) Share discussion paper with the MHCC Consumer Council in DRAFT, seek comment and revise. 2) Share discussion paper with the broader MHCC family and seek in-put through an on-line survey to identify issues and concerns and gauge level of endorsement.
  19. 19. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 1 9 / 2 3 3) Invite recognized leader in recovery to orient Board and Advisory Committees to recovery. 4) Engage the consumer community to establish a base-line of how aligned the current mental health system is to promoting their recovery. Seek input on next steps for building consumer leadership to drive recovery forward. About the writer Although this discussion paper attempts to provide a balanced, informed and evidence-based review of consumer-focused research on recovery, I must declare that I am far from neutral in seeing the importance of this perspective in the work of the Commission. Mental illness has been a constant companion in my life. I have seen the consequences of a parent with an
  20. 20. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 2 0 / 2 3 untreated serious mental illness compounded by substance abuse and so I am no stranger to the damage mental illness can cause within a family. I have also seen the tremendous benefits that come from quickly accessing appropriate care when a sibling developed bipolar with a dramatically different outcome. My personal history has played a pivotal role in my pursuit of a career in psychiatric rehabilitation. I have worked across the mental health system at the inpatient, outpatient, community treatment, peer support/self help, research and policy level. I have worked with amazingly intelligent, kind and compassionate professionals and consumers. I have also experienced the severe sting of stigma and discrimination, within the health care system, and witness the low expectations held towards people living with mental illness and their families. Like many women I have been part of the ‘sandwich generation’ supporting young children and ill and aging parents. So, it is not surprising that ‘the wheels fell off my wagon’ in mid-life and I too was visited by Depression. Whether this was a consequence of genetic vulnerability, early experience of trauma, or the consequence of an imbalanced lifestyle I don’t know. Probably all of the above and I am not sure it really matters. What I know is that good treatment, the support of family and friends, purpose, meaning and hard work keeps me well. The profound sense of personal belonging I feel within the consumer community has helped me reclaim my identity as ‘whole person,’ and not feel isolated and ‘defective’ because of all my experiences of mental illness. Sharing an experience of mental illness is not without risk but it is also the seeds of hope. I believe we owe a tremendous debt to all the consumers and caregivers who have pushed forward to create a better reality for others. Their voice must play a central role in the work of the Commission. Neasa Martin, MHCC Advisor on Stigma and Discrimination REFERENCE 1 A note about language - there is considerable debate about how to refer to people with a lived experience of mental illness. In Canada leaders within the community use the term ‘consumer’ as their preferred term. 2 Darrell Burnham, Executive Director of the Coast Mental Health Foundation, told the Senate Committee: 74] 3 Psychiatr Serv Piat et al. 59 (4): 446. (69K) 4 Deegan PE. Recovery: the lived experience of rehabilitation. Psychosoc Rehabil J. 1988;11:11–19. 5 McDermott B. Transforming depression. The Journal. 1990;1:13–14.
  21. 21. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 2 1 / 2 3 6 Chamberlin, J. (1984). Speaking for ourselves: An overview of the Ex-Psychiatric Inmates’ Movement. Psychosocial Rehabilitation Journal, 2, 56-63. 7 Anthony WA. Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosoc Rehabil J. 1993;16:11–23. 8 http://www.bu.edu/resilience/examples/recovery-conspiracyofhope.txt 9 http://www.ct.gov/dmhas/lib/dmhas/publications/practiceguidelines.pdfwhat 10 http://www.scmh.org.uk/pdfs/Making_recovery_a_reality_policy_paper.pdf 11 Nika Dorrer, N. (2006) Evidence of Recovery: The ‘Ups’ and ‘Downs’ of Longitudinal Outcome Studies. SRN Discussion Paper Series. Report No.4. Glasgow, Scottish Recovery Network 12 Chris Summerville, D.Min., CPRP) http://ccamhr.ca/communications.html 13 Social Exclusion Unit (2004) Mental Health and Social Exclusion. Office of the Deputy Prime Minister: London 14 Harding, CM. Changes in schizophrenia across time: paradoxes, patterns, and predictors. In: Davidson L. , Recovery from severe mental illnesses: research evidence and implications for practice. Boston: Center for Psychiatric Rehabilitation; 2005. pp. 27–48. 15 Davidson, L. & McGlashan, T.H. (1997) The varied outcomes of schizophrenia. Canadian Journal of Psychiatry, 42, 34–43. 16 DeSisto MJ. Harding CM. McCormick RV, et al. The Maine and Vermont three-decade studies of serious mental illness: I. Matched comparisons of cross-sectional outcome. Br J Psychiatry. 1995;167:331–338. 17 Harrow, M. Jobe, T. Factors Involved in Outcome and Recovery in Schizophrenia Patients Not on Antipsychotic Medications: A 15-Year Multi-follow-Up Study The Journal of Nervous and Mental Disease • Volume 195, Number 5,May 2007. 18 http://www.ccmhi.ca/en/products/toolkits/documents/EN_PathwaystoHealing.pdf 19 Canadian Collaborative Mental Health Initiative. Pathways to healing: A mental health guide for First Nations people. Mississauga, ON: Canadian Collaborative Mental Health Initiative; February 2006. Available at:www.ccmhi.ca http://www.ccmhi.ca/en/products/toolkits/documents/EN_PathwaystoHealing.pdf 20 Building Bridges Symposium Report, November 2007. http://www.mooddisorderscanada.ca/buildingbridges/building-bridges.pdf 21 McGrath, P. & Jarrett, V. (2004). A slab over my head: Recovery Insights from a Consumer’s Perspective. International Journal of Psychosocial Rehabilitation. 9, 1, 61-78 22 Young SL. Ensing DS. Exploring recovery from the perspective of people with psychiatric disabilities. Psychiatr Rehabil J. 1999;22:219–231. 23 Larry Davidson, Ph.D. , Maria O'Connell, Ph.D. , Janis Tondora, Psy. D., Thomas Styron, Ph.D. , Karen kangas, Ed.D. The Top Ten Concerns About Recovery Encountered in Mental Health System Transformation by 24 Spaniol L. Wewiorski NJ. Gagne C, et al. The process of recovery from schizophrenia. Int Rev Psychiatry. 2002;14:327–336. 25 Davidson L. Strauss JS. Beyond the biopsychosocial model: integrating disorder, health and recovery. Psychiatry: Interpersonal and Biological Processes. 1995;58:44–55. 26 Anthony, WA. Cohen, MR. Farkas, M., et al. 2nd ed. Boston: Boston University, Center for Psychiatric Rehabilitation; 2002. Psychiatric rehabilitation. 27 Deegan P. Recovery as a journey of the heart. Psychosoc Rehabil J. 1996;19:91–97. 28 Ridgway PA. Re-storying psychiatric disability: learning from first person recovery narratives. Psychiatr Rehabil J. 2001;24:335–343. 29 Fisher DB. Health care reform based on an empowerment model of recovery by people with psychiatric disabilities. Hosp Commun Psychiatry. 1994;45:913–915. 30 Jacobson N. Curtis L. Recovery as policy in mental health services: strategies emerging from the states. Psychiatr Rehabil J. 2000;23:333–341 31 Resnick SG, Fontana A, Lehman AF, Rosenheck RA. An empirical conceptualization of the recovery orientation. Schizophr Res. 2005 Jun 1;75(1):119-28. 32 McGrath, P. & Jarrett, V. (2004). A slab over my head: Recovery Insights from a Consumer’s Perspective. International Journal of Psychosocial Rehabilitation. 9, 1, 61-78 33 http://www.ccamhr.ca/resources.html 34 http://www.pcemanitoba.com/resources_recovery.html 35 Curtis, L. 1997. New Directions: International Overview of Best Practices in Recovery and Rehabilitation Services for People with Serious Mental Illness, A Discussion Paper. NZ: The Commission to inform the development of a National Blueprint for Mental Health Services. http://www.mhc.govt.nz/publications/1997/New_Directions.htm 36 www.csg.org/policy/health/documents/Davidson.ppt
  22. 22. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 2 2 / 2 3 37 Farkas, M. The vision of recovery today: what it is and what it means for services. World Psychiatry. 2007 June; 6(2): 68–74. 38 McKnight, John (1995). The Careless Society: Community and Its Counterfeits. United States: Basic Books, p 16. 39 http://www.namiscc.org/Recovery/2005/ToolsForSystemChange.htm 40 . Buchana-Barker… The Tidal Commitment: extending the value base of mental health recovery 2008. 41 http://www.scottishrecovery.net/content/default.asp 42 Ralph, R. & Corrigan, P. Recovery in Mental Illness: Broadening Our Understanding of Wellness 43 http://www.psrrpscanada.ca/ See - Recovery Overview. 44 Roberts, G., Davenport, S., Holloway, F. & Tattan, T. (2006) Enabling Recovery: The principles and practice of rehabilitation psychiatry. Gaskell: London. 45 Deegan P. Recovery: the lived experience of rehabilitation. Psychosoc Rehabil J. 1988;11:11–19. 46 Position paper 08: A common purpose: Recovery in future mental health services By Care Services Improvement Partnership (CSIP), Royal College of Psychiatrists (RCPsych), Social Care Institute for Excellence (SCIE) Published June 2007 47 http://ccamhr.ca/papers/Lexicon%20-%20MacKay.pdf 48 Ridgway PA. Re-storying psychiatric disability: learning from first person recovery narratives. Psychiatr Rehabil J. 2001;24:335–343. 49 Spaniol L. Gagne C. Koehler M. Recovery from mental illness: what it is and how to assist people in their recovery. Continuum. 1997;4:3–15. 50 Davidson L. Strauss JS. Sense of self in recovery from severe mental illness. Br J Med Psychol. 1992;65:131–45 51 Young SL. Ensing DS. Exploring recovery from the perspective of people with psychiatric disabilities. Psychiatr Rehabil J. 1999;22:219–231. 52 Jacobson N. Experiencing recovery: a dimensional analysis of consumers' recovery narratives. Psychiatr Rehabil J. 2001;24:248–256. 53 Forchuk C. Ward-Griffin C. Csiernik R, et al. Surviving the tornado of mental illness: psychiatric survivors' experiences of getting, losing, and keeping housing. Psychiatr Serv. 2006;57:558–562 54 http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/SOCI-E/rep-e/rep02may06part3- e.htm#_Toc133223182 55 http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/SOCI-E/rep-e/rep02may06part1- e.htm#_Toc133223003 56 http://mentalhealth.samhsa.gov/publications/allpubs/sma05-4129/ 57 National Consensus Statement on Mental Health Recovery U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration Center for Mental Health Services. Available at http://mentalhealth.samhsa.gov/publications/allpubs/sma05-4129/ 58 http://www.bu.edu/resilience/examples/deegan-recovery-hope.pdf 59 Andresen, R., Caputi, P, Oades, L. (2006) Stages of recovery instrument: development of a measure of recovery from serious mental illness. Australian and New Zealand Journal of Psychiatry, 40, 972–980. 60 http://www.cellinteractive.com/ucla/physcian_ed/stages_change.html 61 http://www.ct.gov/dmhas/lib/dmhas/publications/practiceguidelines.pdf 62 http://www.patdeegan.com/pdfs/articles_hope.pdf 63 Windell, D., Malla A., Norman, R. Ontario Working Group on Early Intervention Conference, February 29, 2008 64 Home Depot slogan 65 http://www.mentalhealthcommission.gov/reports/FinalReport/FullReport.htm 66 http://www.mhc.govt.nz/documents/0000/0000/0009/BLUEPRINT1998.PDF 67 Ramon, S., Healy, W., Renouf, N. “Recovery from Mental Illness as an Emergent Concept and Practice in Australia and the UK.” International Journal of Social Psychiatry, Vol. 53, No. 2, 108-122 (2007) 68 http://www.scottishrecovery.net/content/default.asp?page=s16 69 Mueser K. Drake R. Noordsy D. Integrated mental health and substance abuse treatment for severe psychiatric disorder. J Pract Psychol Behav Health. 1998;4:129–139. 70 Marianne Farkas. “The Vision of Recovery Today: What It Is and What It Means for Services.” World Psychiatry 6 (June 2007): 4-10 71 McCormack, J. (2007) Recovery Strengths Based Practice.
  23. 23. C O N S U M E R F O C U S E D R E C O V E R Y Promoting a shared understanding of recovery Me n ta l Hea l th C om m i s si on of C a na da : C on s um e r F oc u sed Re co ve ry A D is c us s io n P a p er 2 3 / 2 3 72 A National Study of Consumer Perspectives on What Helps and Hinders Recovery (Public Release Date: Mid October 2002). http://www.namiscc.org/Recovery/2002/MentalHealthRecovery.htm 73 Fisher DB: Towards a positive culture of healing, in The DMH Core Curriculum: Consumer Empowerment and Recovery, Part 1. Boston, Commonwealth of Massachusetts Department of Mental Health, 1993 74 Farkas, M. The vision of recovery today: what it is and what it means for services June 2007 http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2219905#B66 75 On Defining Appropriate Consumer-Centered Mental Health Care www.csg.org/policy/health/documents/Davidson.ppt 76 Jacobson, N., Greenley, D. What Is Recovery? A Conceptual Model and Explication. Psychiatric Services 52:482- 485, 2001. 77 http://www.namiscc.org/Recovery/2002/MentalHealthRecovery.htm 78 Davidson, L. Creating a Recovery-Oriented System of Behavioral Health Care: Moving from Concept to Reality. Psychiatric Rehabilitation Journal Vol. 31, Number 1, Summer 2007 pg 23 - 31. 79 http://www.namiscc.org/Recovery/2002/MentalHealthRecovery.htm 80 Recovery Competencies for New Zealand Mental Health Workers Mental Health Commission of NZ March 2001. http://www.mhc.govt.nz/publications/topics/show/37-2001 81 Link, B.G. “Stigma – Related Attitudes and Beliefs in the United States 1950 - 2006 Presented at Hotchkiss Brain Institute Research on Stigma Conference, Calgary Alberta, June 2008. 82 Mental Health Literacy: A Review of the Literature, Updated May 2007 http://www.camimh.ca/files/literacy/LIT_REVIEW_MAY_6_07.pdf 83 Read J, Haslam N, Sayce L, Davies E. Prejudice and schizophrenia: a review of the mental illness is an illness like any other approach. Acta Psychiatr Scand 2006: 1–16. 84 //www.scmh.org.uk/news/2008_use_proven_ways_of_getting_into_work.aspx 85 Out of the Shadows at Last: Transforming Mental Health, Mental Illness and Addiction Services in Canada (Literature review, expert advise, online consultations and public hearings). 86 Moving Forward Together: Stakeholder perspectives on the priorities of The Mental Health Commission of Canada. Nation-wide stakeholder consultations. 87 Martin, N., Johnston, V. Time For Change: Tackling Stigma and Discrimination Sept. 2007. (Literature review, expert consultations, on-line stakeholder consultations.

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