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An inclusive consumer participation of today. By Evan Bichara
Quote – “The complementation and flow of effective work could not be possible if not for two significant factors:-
˜ The precision and accuracy of organisations and networks formed
˜ And the fine co-operation of good people”
By an explorer leading the Antarctica Expedition.
Consumer participation of today can be seen from two major levels.
- The Micro Level: individual consumers reaching some form of recovery through one or multiple interventions.
- The Macro Level: Consumers assisting others collectively reaching recovery through their shared experiential/other useful knowledge.
Both these levels of consumer participation can either occur simultaneously or on their own depending upon the consumer interest.
However it is important to note here that both levels of consumer participation should be encouraged either by counselling services, through small talk with consumers and other incentives seeing fit to progress further consumer participation with the consumer in order for them to get well.
In order for us to determine the action of what mental health consumer participation would be in today’s current world, it is important for us to note what consumers of today would wish to want. What their current needs are and how service providers with consumers can establish or develop services collectively to address in fulfilling some of these outlined needs that we envisage to discuss.
Mental health consumers of today, like anyone else, want you (as a clinician or community member) to hear them. They want their mental illness to be secondary to their personhood and they want a life free from stigma and discrimination.
Mental health consumers of today also want access to individualised and holistic services to fit with their needs and wants – not vice versa. They do not have to wait until they are in dire straits to get these services.
Mental health consumers of today want meaningful work and permanent appropriate and affordable housing. They want a home not just a room.
Mental health consumers of today want transparent responses when they raise a complaint and they do not want bureaucratic responses to the letters they write to services, government departments of to politicians. They want simplistic responses to their letters.
Mental health consumers want to be able to make friends and enter into relationships and not have their mental illness etc in the way of attitudes of others.
Mental health consumers want to be treated with dignity and respect.
They want to have fun like anybody else.
They want people to listen to them when they express concern about the side effects of medication and be willing to do something about it.
They want to be seen and treated as equal partners to the community in which they live in and at the same time recognise the normality of their desire to retain contact with and use psychiatric disability services.
Mental health consumers of today want to be discharged from services when they are ready and not when the service is.
Mental health consumers of today want more focus on the quality of service delivery rather than through output and outcomes.
Mental health consumers of today want their lived experience of mental health recognised as an equal area of expertise to that of service providers and essential for respectful and responsible service delivery.
Mental health consumers of today do not want models of practice or theoretical ideas to override their unique humanness and be cost in the many models and theoretical principles delivered mostly to each prospective mental health staff (even though there is a need for these teaching instruments).
Mental health consumers of today want involuntary detention and treatment to cease being a habit of practice but rather used as an absolute last resort (emphasising once again an absolute last resort!)
Mental health consumers of today want you (as a nurse or other staff member) to talk with them, not at them!
Consumer participation in the mental health service takes place in a field permitted with moral and ethical dilemmas- not the least of which we the power imbalances between consumers and staff in the system and the many effects consumers say this has on them.
It is important to note that consumer participants within the mental health workforce generally operate within a highly principled and ethically challenging environment, which has evolved during the long and diverse history of the consumer movement. With self monitoring and shared peer encouragement of approaches built on a fundamental respect for the lived experience of consumers.
The value of the lived experience was highly recognised as valuable/knowledge to mental health staff/other people working alongside them.
The dynamics at work seem to be that consumers of today either individually or collectively are almost inescapably reliant on the support, validation and assistance of their peers-if they are to be effective in their participating roles.
This seems to apply more so than in may other fields.
With all of this consumer participation efforts set and a field of ongoing controversies of great importance surrounding the mental health system of today namely the predominance of the medical model of psychiatry, the modern social pressures since desensitisation of mental health service; the wider effects of changing political and economic policies with neo-liberalism, privatisation policies, the continual shrinkage of the roles of government and the winding back of the welfare state; and the consumer advisers we experiences in services and in the community. All this makes too often difficult to remain to navigate to the average mental health consumer of today.
These difficulties of today could eventually form part of an argument of why consumer participation programs should have a more demonstrated need to be better resourced so that more consumers can be directly involved in a more skilful and coordinated manner and for a greater inclusion of more marginalised groups of consumers.
Another issue of importance here might be possibly tensions between central coordination and the need for local autonomy and the wider scope for creative approaches when thinking about Consumer Participation initiatives.
It is important to note that having a positive and constructive engagement between consumer and service provider and trying to work collaboratively and enhance understanding, makes it possible to take consumer participation and make it work well beyond the realms of the adversarial.
This can allow creative and positive processes for building whole new mental health services systems which have new ways of organising services, new approaches for treatment and case management, new support methods, new ways of involving carers, families/friends with the treatment and added support for consumers. It may also lead to linking people into educational, vocational, employment options and other meaningful activities. Its so developmental and now there is this exciting group of people; full of valuable knowledge – the consumers of today. The added skill and knowledge due to firsthand experience of a mental illness and recovery to some extent and know a lot about the system; it’s a gold mine and bonus to activate the consumers of today to some constructive discussion and listen to what they love to say. There is just so much potential with today’s consumer and allowing them to have a leading role.
And what about consideration that must be given to cultural influences for our ethnic consumer of today? We know that culture affects an individual’s way of life as people’s values and customs are passed down from generation to generation, making consumers of ethnic origin face a rather complex phenomenon. However, that human quality of wanting to live and move life forward exists in all of us regardless of ethnicity. It is not enough to simply learn about some of the preconceived ideas about how consumers of ethnic origin should live and what they should think. Rather we are matured members of the community should be encouraged to engage in the journey with them. Our journey too could be slowed by engagement. Both in dialogue and in relationship we will discover the similar dimension of life as we put our lives together.
I feel that the issues relating to specific cultural groups are too wide and complex to be covered in this segment of writing. However, one must always consider the diversity within cultural groups, keeping in mind the following points to accommodate this wide diversity:-
- Cultural, definitions, beliefs about mental illness
- Language (written and spoken)
- Definitions of ambiguous terms (eg support, “keep in touch”)
- Interrelationships between medications/traditional remedies
- Interrelationships between psychological/traditional strategies
- Understanding mental health services’ procedures
- Understanding the expectations of the family
- Observance of religious practices
- The role of male and female in each culture/ appropriate gender specific behaviour
This list is far from complete and illustrates some of the considerations needed in servicing ethnic consumer/their families.
These points also need to be considered when dealing with ethnic consumers/their family member in designing psychosocial rehabilitation programs suited to encourage consumer participation.
In conclusion, it is through a glimpse at the wider community at many times and becoming more frequent within today’s consumers, when communci9ation and a cooperation between consumers, non-consumers and services is constantly occurring for the common good, when active good will is found in relationships that continue to inspire hope to consumers to participate at any opportunity and move forward in life as an equal citizen of our society.