DOMAIN Growing Consumer Leadership

In revisiting the Framework for recovery-oriented practice (2011) during the development of this Recovery Library website, the project team determined that a key field of endeavour central to recovery-oriented practice was missing relating to consumer leadership. With permission from the Victorian Department of Health and Human Services, the project team undertook a collaborative process to develop the content for an additional domain: Growing Consumer Leadership.

The content of this Domain is based on a conversation held in 2014 at the University of Melbourne with a small group of identified consumer leaders from the Victorian acute and community managed mental health sectors. In this domain, 'consumer leadership' equates to the idea of 'consumer participation' while the term 'service user' is used to indicate people who are currently using mental health services whether in the acute or community managed sectors.

Services have a crucial role in growing, promoting and embedding consumer leadership and confronting discrimination through a combination of creating conducive environments and ensuring that consumers have sufficient opportunities for the development of their expertise, skills and experience. Developing consumer leadership also encompasses capacity building and providing opportunities for local service users to become involved in the development, delivery and evaluation of services.

The concept of consumer leadership

Although the consumer movement is yet to fully articulate what the term 'consumer leadership' means, Gordon (2005) describes the work undertaken by the consumer workforce in mental health services as 'consumer leadership' rather than 'consumer participation'. This is the definition adopted here. Yet to be determined are such questions as: How does the consumer workforce best achieve influence? What are the work ethics of the consumer workforce? What is unique about consumer perspective practice?

A range of activities can be gathered under the umbrella term 'consumer leadership' - from consumers providing training to mental health practitioners, facilitating groups on wards, managing consumer teams in a service, designing a service project, conducting a satisfactions survey or being a member of a Consumer Advisory Group conducting (CAG). Consumer leadership is often thought of as having collective influence and being able to make things happen rather than having individual power.

Unique consumer roles

Designated consumer ('lived experience') roles in the mental health landscape are unique for many reasons. Roles centring on lived experience tend to deeply involve one's identity. The type of knowledge and expertise consumers bring is 'embodied' because it is based on things that have been directly experienced such as using mental health services and making the journey through recovery. Consumer leadership in mental health is additionally complex when there are embodied experiences of distress, trauma and/or discrimination. At an individual level such experiences may inform the motivation for wanting to do the work, while at the systemic level such experiences have informed the development of consumer perspective work in mental health services.

Ambivalence around power, authority and influence

For many consumers, concepts of power and influence are highly charged because of experiences of being subject to others' power and associations with bullying, hierarchies and coercion. Strategies consumers use in the face of this ambivalence include distinguishing between 'power over' (as negative) and power 'from within' (as positive) and making distinctions between the concept of 'having power' and 'having authority' or 'influence'. Another strategy consumers might use is to consciously aim to redistribute power.

Supervision, support and professional development

Unlike other disciplines in mental health the consumer workforce does not have its own professional association or body. On the other hand, consumer leadership arises from various socio-political rights movements and many consumer leaders think a good knowledge of this history and the consumer movement's principal concerns is foundational to all types of consumer work.

Due to the nature of roles where the deliberate use of lived experience is requisite, access to informal and formal self-chosen 'supervision' (whether internal or external) for the consumer worker is crucial. For example consumers may be working in spaces where they have previously experienced disempowerment and voicelessness and may need to strategise with peers and other consumer leaders. The need for such support should be regarded as integral to the work with time set aside for it. These activities should be understood as different from line management.

Individual consumers should have opportunities to identify any personal areas for leadership development and to have those needs met. For example, acting lessons can assist being clear and assertive in communication while project management training can support consumers' leadership skills and confidence.

Consumers often rely on, listen to and interpret what they are registering in their body as knowledge. This 'body knowledge' allows them to determine when something is not right in an interaction – to discern unfairness, disempowerment, ethical problems or hidden agendas. Consumer leaders speak of needing to find language and space for reflecting upon, making sense of and dealing with such responses whether with peers, or through other processes.

Formal roles for consumers facilitating reflective learning spaces with practitioners and/or peers are suggested as a way to provide safe spaces to gain consumer perspective that are mutually beneficial for all participants.

Core principles

Mental health services are committed to identifying and removing barriers to consumer leadership and ensuring consumer workers have a voice and are respected and valued for their expertise.

Mental health services authorise consumer leadership by providing opportunities, resources, and time for its development whilst ensuring consumers are not working in isolation.

Mental health services ensure opportunities are developed for service users to identify priorities for local reform activity.

Mental health services understand the difference between undesignated lived experience roles, designated lived experience roles peer support roles and consumer participation activity and value these equally (see Queensland Alliance position paper).

Mental health services are clear about the purpose for seeking consumer leadership (See CIS Arnstein's ladder).

Mental health services establish mechanisms (such as Consumer Advisory Groups) directly linking service users to organisational governance structures.

Mental health services build the capacity of service users to contribute to service development, delivery and review for example through the development of mentoring and apprenticeship opportunities for service users or employing external consumer expertise to facilitate consumer leadership development.

Key capabilities

 

Mental health professionals

Behaviours
  • use their own authority to manage any negative attitudes other staff may have towards consumer leadership and assist others to become more comfortable with new ideas
  • challenge others' attitudes when necessary for example, the risks of adopting an innovative idea might be mitigated if worked through with some time and effort
  • take on board consumer leaders' ideas and raise them at decision-making bodies
  • defer to the expertise areas of consumer leaders
  • provide opportunities for consumers to identify professional development needs and ensure these needs are met so that consumer leadership can thrive
  • take action as well as sharing ideas – "walk the walk" and seek to achieve
  • create mutually respectful relationships and be open to being challenged
  • share what you have learned from consumers with others in the organisation.
Attitudes
  • are open to seeing things in new ways
  • hear and heed consumer advice and expertise
  • are open to dialogue about ideas and work
  • accept and encourage consumer leadership for the expertise it brings
  • respect the autonomy of consumer leadership whilst supporting its aims
  • trust consumer leadership.
Skills
  • build on successes for example choose a small project of mutual interest to consumers and the organisation to get 'runs on the board'
  • use consumer knowledge for self-reflection and practice improvement
  • are inquisitive about consumers' work and help disseminate it
  • are a champion for consumer leadership within the organisation
  • show appreciation for consumer leadership and what it is achieving
  • help consumers to see and further develop their own leadership skills.
Knowledge
  • have knowledge of what consumer leaders do and why they do it
  • appreciate that consumer leadership is uniquely based on expertise derived from lived experience
  • have knowledge of the variation in consumer workforce roles including "representative", "peer supporter", "consumer consultant", "educator/trainer", "advocate", "academic" and "researcher".
  • are interested in and understand how to collaborate with consumer leaders (see CIS "keywords": co-production).

Good practice

  • Allocate time and resources so people can meet to develop their ideas and thinking about what can be new and different about the service.
  • Devote time, resources and support in order to grow consumer leadership.
  • Support consumer leaders to achieve their priorities especially where they do not have access to decision-making authority.
  • Invite external consumer leaders into the organisation to broaden knowledge of consumer perspective and hear other ideas.
  • Provide influential opportunities for consumer leaders to be engaged in meaningful, well supported and resourced pieced of work.
  • Avoid tokenism by creating multiple opportunities for and building capacity of service users to be involved in service development delivery and review.
  • Create a safe environment for consumer leadership where consumers' ideas and suggestions can be explored openly.
  • Be attuned critically to power – who has it, who controls the agenda, who is making decisions, and being prepared to relinquish power.
  • Develop a real or virtual library of consumer perspective resources from which all staff can borrow and circulate the writings of consumer leaders.

Good leadership

  • Have a 'can-do' attitude in relation to the consumer workforce's agenda and honesty about any limits to what is achievable.
  • Delegate real authority to consumers to drive areas of work.
  • Audit organisational readiness for consumer leadership and provide training/orientation to staff in relation to consumer leadership.
  • Facilitate the creation of structures that will embed consumer leadership within the organisation.
  • Support consumer leadership by creating spaces for consumer workers to identify their workforce needs and to connect with peers, recognising people's support needs will be individual.
  • Understand and promote knowledge of two major streams of designated 'lived experience' roles of 'peer support' (direct service provision) and 'consumer leadership' (systemic activity).
  • Advocate for resourcing and growth in the range/variety of consumer leadership roles eg peer support workers, consumer consultants, managers, project workers, researchers, educators, consumer participation officers, consumers in governance positions.
  • Develop processes for seeking the views of a diverse range of service users and resource this as a leadership activity.
  • Ensure there are mechanisms to enable services users to set the agenda and priorities for work.
  • Ensure there is support for consumer leadership 'at the top'.
  • Promote the role of consumers in governance.
  • Engage in a process of envisioning what consumer leadership could or should be within the organisation.

Resources

Alternative approaches

Consumer leaders' website

Consumer leadership articles

Lived experience workforce

Organisational resource

Peak organisation

Peer support

Resource centre

Policy and reform

Videos