From Recovery to Wellbeing - A call for consumer leadership - an academic perspective
Article by Lei Ning, Consumer Advisor NorthWestern Mental Health of Melbourne Health and member of the National Register of Mental Health Consumers and Carers
The creation and continuing development of the concept of recovery and wellbeing has reinforced consumers’ self-care, self-management and self-determination as the foremost conditions in terms of establishing or re-establishing a meaningful life. Resilience and mindfulness are the essential ingredients for achieving wellbeing. Consumer involvement in mental health service planning, delivery and system reform is pivotal. Mental health services should move towards genuine consumer-centred services and be able to provide holistic support and care to meet consumers’ needs and expectations. The most effective way to realise consumer centricity is to nurture, embrace and support consumer leadership which may lead to revolutionise the current thinking, culture, funding methodology, executive structure and service delivery approaches of all mental health services. The Author was a member of the Victorian Recovery Framework Advisory Committee and the National Recovery Framework Working Group.
Recovery has been gaining increasing popularity within mental health services for more than 10 years internationally (Anthony,2007.,Davidson, et al. 2008., Slade, M. 2009). It is common to claim that a mental health service is a recovery oriented service. Unfortunately, the mental health consumer community criticised that recovery has largely become a rhetoric word rather than a word with real substance to influence cultural change and quality improvement for mental health services (Ning, et al., 2009). Recovery reached its peak in the Australian mental health system in the past couple of years and has been further accelerated by the launch of the Fourth National Mental Health Plan (2009 – 2014), the National Standards for Mental health Services (2010) and A National Framework for Recovery-Oriented Mental Health Services (2013).
It is encouraging to note that some mental health services are now making a real effort to translate recovery principles into their practises to make a real difference to their service delivery. The most recent development of recovery is that “A new evidence base is emerging, which is focused on wellbeing” (Slade, 2010. p. 1.). Wellbeing is an important concept which may influence the mental health service reform in the coming years (Ning, 2010). This paper will elucidate recovery and wellbeing, and discuss the concepts in relation to strengthening resilience, establishing mindfulness, holistic support, consumer centricity, and consumer leadership.
Recovery and wellbeing
Recovery is variously called a process, an outlook, a vision, a guiding principle. There is neither a single agreed-upon definition of recovery nor a single way to measure it (Anthony, 2007). However, it is essential to acknowledge that the modern concept of recovery was created by consumers based on their lived experiences (Anthony, 2007; Slade, 2009). Deegan (1988) declared that “Perhaps the phenomenon (recovery) is elusive, but it is so fundamental… we have lived it” (p 12.). The essence of the concept of recovery is to focus on self-care and self-determination.
What does recovery really mean to mental health service providers? It is primarily the development of skills, knowledge and attitudes to promote successful self-care, self-management and self-directed care. Some attempts have been made in terms of clinicalisation of recovery internationally and nationally, for instance: the collaborative approach, the strength based model, and personal recovery. (Anthony, 2007., Rapp, 1998., Slade, 2009). Some of these endeavours made limited progress in mental health service development and improvement due to the approaches hardly adhering to the core principle, which is self-help. Some consumers expressed frustration over what was perceived as the clinicalisation of recovery whereby recovery was “hijacked by mental health service providers” (Coleman, 2006).
Furthermore, the currently fashionable recovery push within Australian mental health services is only chasing the tail of the consumer movement which has already advanced from recovery to wellbeing (wellness) internationally (Ning, 2010). Recovery is a process whereas wellbeing is the optimal goal. Wellbeing is a dynamic state which is based on individuals’ resilience, mindfulness, and being able to contribute to their own communities. “This makes it possible for health services to orientate around promoting wellbeing as well as treating illness, and so to make reality of the long-standing rhetoric that health is more than absence of illness” (Slade, 2010. p. 1.).
The tough road to wellbeing is about being able to tap into innate personal resources to discover or rediscover a self-defined life. A clinical emphasis on taking medication, avoiding stress and offering unrealistic positivity and hope, lacks an empathic understanding for people with mental health challenges. For some consumers a self-defined goal of wellbeing is relatively achievable, yet for others, their mental health difficulties are part of their daily lives. The only thing that can carry them through day by day is the intrinsic human quality of resilience. Resilience connotes the ability to adapt positively to adversity (Lamond et al., 2009). Therefore, building and further developing an individual’s resilience is the key to the recovery process. The ever distant hope may come closer when the individual has strengthened his or her inner resilience. People who have struggled the most will establish an extraordinary level of endurance and resilience, which lays the foundation for change. Self-reliance and self-determination are essential for people to overcome their mental health difficulties and challenges. As such consumers need to be recognised as experts in their own conditions.
In 1977, the consumer leader, Judi Chamberlin encouraged consumers to raise their consciousness and self-esteem, and belief in their own abilities (Chamberlin, 1979). This can be achieved through the development of mindfulness. Mindfulness is a form of self-awareness training adapted from Buddhist mindfulness meditation (Epstein 1999; Siegel, 2007) Mindfulness embraces reality rather than denying truth. Mindfulness affirms one’s own strengths, identifies one’s limitations and sets out to actively improve the limitations. Mindfulness creates self-awareness, an understanding of one’s own mental health needs and challenges, and allows connection to a self-defined social support network. Mindfulness is to eliminate self-pity, ameliorate anger, and to establish or re-establish a positive self. Mindfulness involves taking leadership of one’s own unique recovery process to work diligently and creatively towards wellbeing.
Mindfulness is an important aspect of wellbeing for mental health consumers. The stigma and discrimination towards consumers is still enormous in our society (Mental Health Council of Australia 2011). Consciousness raising processes are a necessary step in overcoming this stigma and moving closer towards a peaceful and meaningful life.
The consumer at the centre
The concept of recovery and wellbeing confirms that consumer needs, expectations and priorities should be at the centre of mental health system reform. A consumer-centred mental health system is a “wrapped around” system to meet the consumers’ needs. There is a misunderstanding that the consumer centred approach is the same as the person-centred approach. The difference between these two approaches is that the consumer-centred approach requires that consumers are naturally at the centre of all aspects of mental health services; whereas the person-centred approach is where service providers put or allow consumers to be positioned at the centre of treatment and care.
To achieve a truly consumer-centred mental health service system requires much stronger commitment, meaningful partnerships, innovation and creativity rather than falling short by just reconfiguring the system to satisfy managerial needs. Our common aspiration is to develop a consumer-centred or consumer-driven mental health system which is actually a call for consumer leadership even though it may not be a conscious intention. Gordon (2005) foresighted that:
“Consumer involvement makes mental health services more effective… the paradigm shift from consumer ‘participation’ to consumer ‘leadership’ may be more fruitful in realizing the considerable benefits that result from effective consumer involvement in mental health services”(P. 365).
People have to rely on the goodwill and invitation of others to participate. However consumers are equal to others, are the most informed about their needs, and are able to take leadership. Unlike participation, leadership assumes people with mental health problems have the power to set the agenda, make major decisions and control resources (O’ Conner, 2009). Consumer involvement in mental health services is advancing in a new direction from passive participation to active leadership, which is a new challenge for all stakeholders within the mental health sector.
Mental health services
Mental health services are a key source of advice and support for consumers. Professional input remains important in real recovery and wellbeing-oriented services. However professional expertise is not automatically given authority. Instead, dialogue and negotiated agreement should lead to a shared understanding. Substituted decision making should be replaced by supported decision making.
It is necessary to take risks in order to learn and grow. Mental health services must learn how to minimise real risks rather than perceived risks; and not be overwhelmed by assumed responsibilities which override the right of experience and grow (South London and Maudsley NHS Foundation Trust and South West London and St George’s Mental Health NHS Trust, 2010). Mental health services must create the conditions in which consumers feel empowered, in order for their sense of personal “agency” to flourish (Shepherd, Boardman, & Slade. 2008).
Recovery and wellbeing-oriented mental health services require change from a single focus on mental illness towards holistic support which can have input in physical health, and all the social determinants of wellbeing for consumers, such as housing and safety, environment, meaningful activity, good quality food, leisure, education, affordable transport and financial security.
The creation and continuing development of the concepts of recovery and wellbeing reinforce consumers’ self-care, self-management and self-determination as the foremost conditions to establish or re-establish a meaningful life. Resilience and mindfulness are the essential ingredients for achieving wellbeing. Consumer involvement in mental health service planning, delivery and system reform is pivotal. Mental health services should move towards genuine consumer-centred services and be able to provide holistic support and care to meet consumers’ needs and expectations. There is no doubt that the most effective way to realise consumer centricity is to nurture, embrace and support consumer leadership which will revolutionise the current thinking, culture, funding methodology, executive structure and service delivery approaches of all mental health services.
- Anthony, W. A. Toward a vision of recovery for mental health and psychiatric rehabilitation services. Boston: Center for psychiatric rehabilitation, Boston University, 2007.
- Chamberlin, J. On Our Own: Patient-controlled alternatives to the mental health system. NY: McGraw-Hill, 1979.
- Coleman, J. Consumer day speech. Proceedings of the Mental Health Services Conference 2006. Townsville, Australia, 2006.
- Commonwealth of Australia. A National Framework for Recovery-Oriented Mental Health services, 2013.
- Commonwealth of Australia. Fourth National Mental Health Plan – An agenda for collaborative government action in mental health 2009 – 2014, 2009.
- Commonwealth of Australia. National Standards for Mental Health Services, 2010.
- Deegan, P. E. Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation Journal 1988; 11(4): 11-18.
- Gordon, S. The role of the consumer in the leadership and management of mental health services. Australasian Psychiatry 2005; 13 (4): 362-365.
- Davidson, L., Rowe, M., Tondora, J., O’connell, M. J. & Lawless, M. S. A Practical Guide to Recovery-Oriented Practice: Tools for Transforming Mental Health Care. New York: Oxford University Press, 2008.
- Epstein, R. M. Mindful practice. JAMA: Journal of the American Medical Association 1999; 282:833–9.
- Lamond, A. J.; Depp, C. A.; Allison, M.; et al., Measurement and predictors of resilience among community-dwelling older women. Journal of Psychiatric Research 2009; 43 (2): 148–154.
- Mental Health Council of Australia. Consumer and carer experiences of stigma from mental health and other health professionals 2011. Canberra: MHCA.
- Ning, L. Building a ‘user driven’ mental health system (2010) Advances in Mental Health, 2010; 9 (2): 112 – 115.
- Ning, L., Woodhouse, S. Weavell, W. Making the Right Move. the Australian Journal on Psychosocial Rehabilitation, Winter 2009.
- O’Hagan, M. Leadership for empowerment and equality: a proposed model for mental health user/survivor leadership. International Journal of Leadership in Public Services 2009; 5 (4): 34-43.
- Rapp, C. A. The Strengths Model: Case Management with People Suffering from Severe and Persistent Mental Illness. NY: Oxford University Press, 1998.
- Shepherd, G., Boardman, J., & Slade, M. Making recovery reality. London: Sainsbury Centre for Mental Health, 2008.
- Siegel, D. J. Mindfulness training and neural integration: differentiation of distinct streams of awareness and the cultivation of well-being. Social Cognitive and Affective Neuroscience 2007. 2(4): 259-263.
- Slade, M. Personal recovery and mental illness: a guide for mental health professionals. Cambridge: Cambridge University Press, 2009.
- Slade, M. Mental illness and well-being: the central importance of positive psychology and recovery approaches. BMC Health Services Research 2010; 10 (26): 1-14.
- South London and Maudsley NHS Foundation Trust and South West London and St George’s Mental Health NHS Trust Recovery is for All. Hope, Agency and Opportunity in Psychiatry. A Position Statement by Consultant Psychiatrists. London: SLAM/SWLSTG, 2010.
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Article contributed to the newsletter Perspectives - October 2014. Please note that this article is from an individual contributor and does not necessarily reflect the views of Mental Health Australia