Project FAQ
This is the place to find the answers to all your questions and get clarity on the terms used in the project.
The ‘whats’?
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A National Representative Body is a structure that brings together collective Lived Experience views to ensure these views are heard, used, and answered in decisions about mental health and addiction systems, services, and policy.
A national body is being considered because there is a need for a credible, visible, and coordinated pathway for collective voice for tangata whaiora and whānau in Aotearoa New Zealand.
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There are Lived Experience organisations, networks, and groups who engage with mental health, addiction, and wellbeing service and system matters. The connections provided are a mix of formal and informal and dependent on local, regional, and national relationships.
The representation of Lived Experience cannot be assumed or guaranteed. Therefore, this project will provide a map of existing mental health and addiction Lived Experience networks.
The map will help to understand how representation is currently operating, and will enable a vision to form for how it may operate into the future based on the taonga already in operation.
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The design process will involve national engagement, ensuring a wide range of experiences across regions, cultures, and service contexts are included and reflected.
The engagement process will explore the possible purpose, functions, form, and design features of a National Representative Body. It is not making final decisions about establishing the body, funding arrangements, or implementation details. The focus at this stage is on developing recommendations and identifying what matters most in the design.
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The design process is responsible for delivering:
a map of existing Lived Experience networks, their pathway into system and services, and how they are resourced.
a recommended set of functions, or work, of a mental health and addiction lived experience national representative body, with clear purpose
a recommended form, or structured way of working, of a mental health and addiction lived experience national representative body, with clear reason.
The project will enable the Ministry of Health to have a clear understanding of what tāngata whaiora and whānau, and stakeholders need from a National Representative body, and what shape this would need to take in order to be effective.
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Likely benefits will be better understood through the design process. But, we can expect a Lived Experience National Representative Body will bring greater consistency for community relationships, engagement, shared knowledge, and action aligned with Te Tiriti o Waitangi and equity commitments.
For tangata whaiora and whānau, the work of a National Representative Body could support:
people to speak ‘truth to power’ and to see action in their ongoing care
trusted relationship between communities and the mental health and wellbeing systems
collective and growing Lived Experience knowledge and influence
restorative action and therapeutic activism as part of recovery. Learning self-advocacy skills as an important platform for wellbeing.
citizenship rights in care and outcomes.
For tangata whaiora and whānau working with systems and stakeholders, stronger Lived Experience collective representation could benefit:
accountability and quality improvement
structures to meet legislative and policy expectations
consistent system‑level decision‑making informed by Lived Experience consideration and impact.
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The goal is to design for effective representation based on a clear function and form, to include: Its purpose, functions, and work
How it could work with tangata whaiora and whānau
How it should reflect Māori voice, whānau voice, and realities for priority groups
How it could work with health system and other agencies
What success might look like over time.
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The function of a National Representative Body refers to what it should do, who for, and for what benefit. The function refers to the work the Body will do.
The form of a National Representative Body refers to how it is structured and organised to deliver its functions. The form refers to how it will operate or be structured to do the work.
The ‘whys’?
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Collective Lived Experience knowledge and engagement is increasingly required for service and system support and obligated by legislation, policy and strategy. For example, the Code of Expectations for health entities This code is required by the Pae Ora (Healthy Futures) Act 2022 and is underpinned by the health sector principles.
Representation for people means tanagata whaiora and whānau voice is heard, used, and answered in a way that is accountable to those who speak their truth. This requires a credible and accountable pathway for people to engage with and her from systems.
All in the Lived Experience workforce are a critical connection in the chain of people who provide pathway for voice. The Lived Experience workforce need a reliable connection to support how they hear from people, how they are accountable, and how the Lived Experience workforce can give effective use to voice.
The mental health and addiction system, including services, will gain knowledge from structured representation. The Lived Experience knowledge gained from collective representation will help the system to make better decisions. The structured approach will give the Ministry of Health and other stakeholders structures to engage, improve quality, develop policy, and have accountability to tangata whaiora and whānau.
At present tangata whaiora, whānau, and organisations who engage cannot be sure their representation is credible and reflective of community and collective perspectives. There is no single national mechanism that can collect, coordinate, and represent a collective Lived Experience voice across the mental health and addiction system.
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Key design considerations include how function relates to mental health AND addiction, and tangata whaiora AND whānau. Form many, these considerations will be quite distinct.
The reason for this approach is to challenge artificial categories and silos and represent the person. the system wants to eliminate.
Real lives do not divide neatly into those categories. Someone may be a service user, a whānau member, a carer, a person experiencing addiction, and a person experiencing mental distress, all at once or at different times. This real life approach is particularly important in relation to te ao Māori and more relational understandings of identity and belonging.
The challenge is not simply to combine categories administratively, but to design something that will operate for all and help eliminate silos.
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This project has been contracted by the Ministry of Health. The design work will allow the lived experience partners to listen to a range of people to provide clear recommendations for the right foundations for effective representation and participation now and for future need. The Ministry of Health has recognised that without good design foundations, based in the knowledge of people with lived experience of needing representation, alongside what organisations requiring representation need, opportunities may be missed. With good foundations, representation could be built more quickly.
The Ministry of Health has contracted work to understand what the design could look like. This information will inform advice to the Minister responsible for any future next steps. Next steps are not guaranteed to happen. But, without good design these decisions cannot be considered.
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The action of representation reflects relationships. It is critical that all people feel safe, seen, connected, and valued. Also, there must be mutual benefits. Therefore, design work will engage tangata whaiora, whānau, and stakeholders.
Representative success will require the National Body to hold dynamic, two-way relationships with the broad range of Lived Experience communities and with the range of government agencies, NGOs, and intermediary organisations who use tangata whaiora and whānau voice to inform their work. Therefore, it is important to consider what relationships are needed, for what benefit, and how they might work.
The ‘whos’?
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The National Representative Body is for all tangata whaiora and whānau across the motu; regional, local, community, urban, rural.
Representation is equitable for tangata whaiora and whānau experience of mental distress, addiction distress, cultural responsiveness, and different service experiences. The inclusion of whānau recognises their influence at the point of distress and for recovery.
Representation must include groups who are more vulnerable because the system intervenes more deeply in their lives, including situations where people can lose voice, autonomy, and even the ability to have their own account of their experience treated as credible.
Through the design process we want to engage with diverse groups to collect varied experiences and views. The design work is expected to include representation from Māori, Pasifika, Asian, Disabled, Youth, and Rainbow communities, and reach:
Individuals and whānau receiving compulsory care, including those in inpatient, forensic (including in-reach facilities), and long-term rehabilitation settings, as well as those with eating disorder service experience (across mental and physical health settings).
Individuals and whānau with experience under the Substance Addiction (Compulsory Assessment and Treatment) Act (SACAT).
Individuals who have accessed Opioid Substitution Treatment (OST) services.
Individuals who have participated in residential medical detox programmes.
Individuals accessing or who have recently accessed residential rehabilitation services, including NGO, private, and therapeutic community options.
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Tāngata whaiora refers to people seeking wellness and includes all people who have personal, firsthand experience with mental distress and/or addiction.
Language and the terms we choose to identify with are important, and we recognise that there will be differences in how people choose to describe their personal experience and preferences.
Other commonly used terms that describe lived experience of mental distress and/or addiction include person with lived experience, consumer, service user, survivor, patient, client, diagnostic language, and identity-based terms. All forms of expression are respected and valued.
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Whānau refers to people who support or care for tāngata whaiora during their journey with mental distress or addiction. This could include family members, partners, friends, and support networks.
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System stakeholders are any organization who require tangata whaiora and whānau voice to support their work, and have accountability for their response.
System stakeholder engagement will identify the wide range of organisations who want to hear Lived Experience voice. Engagement will prioritise health agencies (such as the Ministry of Health, Health New Zealand, Mental Health and Wellbeing Commission etc), NGO representation, and Workforce representation. Also, engagement opportunity will be extended to organisations outside of health settings but connected with tangata whaiora.
The ‘hows’?
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Te Tiriti o Waitangi and Māori voice are priority considerations in this work. The process is intended to be informed by tikanga, Māori leadership, and specific attention to how Māori authority and Indigenous voice should shape the design of any future body. This includes considering whether Māori voice is embedded within the body, partnered with it, or reflected through distinct governance or representative arrangements.
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Feedback will be gathered and listened to carefully to identify common themes, points of agreement, and areas where views differ. The analysis will be used to make recommendations about the design of the National Representative Body. The intention is that participants’ views will directly shape the advice and options developed through the project.
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This is not a Professional Body for the Lived Experience workforce.
The National Representative Body is for tangata whaiora and whānau representation for mental health and addiction service and system matters.
Tangata whaiora and whānau in the Lived Experience workforce could contribute to the National Representative Body in a non-workforce capacity.
The Lived Experience workforce can use knowledge and functions of the National Representative Body to support their work.
The design project are required to keep the perspectives of those who work in Lived Experience roles as stakeholders of the National Representative Body, just as others in the system will be.
