What MPs need to know about Lived Experience
Published 15 July 2026
Changing Minds asked the Lived Experience community what you want MPs to know ahead of the upcoming 2026 General Election, to help us ensure the voices of people with Lived Experience are heard loud and clear in the important kōrero coming up. Here is what you told us, which we have collated into a letter to the political parties in Aotearoa.
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“I want them to think about the many factors that underlie distress and addiction - many of which are things they can influence with policy, budgetary and funding decisions. It is an unignorable truth that security of housing and access to food, transport, healthcare and education are foundational to wellbeing. Many decisions recently have undermined support in these areas. It sows the seeds for wellbeing challenges. I would like to particularly highlight the impact of uncaring legislation and policy that has been inflicted on some of our more vulnerable communities in quite a brutal way. Particularly three of my most important communities - disability community, ngā iwi Māori, and rainbow/LGBT+/takatāpui people. The message is clear from current policy makers - we are not cared about, not valued, our desire for equity is something to be ignored, our suffering is something they'll happily support, we are not the priority, and our belonging can be sacrificed. Landlords, the rich and corporations, particularly those who have donated are their priority. It has given us as society an experience of unaccountable and uncaring leadership and every single day I see the repercussions of that amongst peers and community members. It is crushing for some people. This does not provide conditions for healing and wellbeing. There is very clear research around the world that austerity politics increases suicide rates. Having said all that, I think we are lucky to have a Minster of Mental Health and I'm impressed by Minister Doocey in many ways, particularly his insight and support of peer led services and local community based support.”
“That it can be very hard to slot back into the things (work, sport, community, family, friends) we used to do before becoming unwell, but that one ideal way is making it more possible, for those who want to, to work in Lived Experience roles, to receive the education that may be needed, and therefore the funds allocated to increase this workforce would be a help.”
“We know firsthand what living with mental distress and addiction is like. This is an underutilised source of help which needs to be utilized to benefit the people wanting support. This can be done by expanding the lived experience work force - broadening the availability of peer run respites, drop in centers and warmlines/help phone lines where support is provided entirely by people who have been there.”
“That we matter. We have so much knowledge about the health systems that you need to hear. Nobody gets it like someone that's lived it!”
“Policy makers must shift from treating crises in hospitals to funding community-led, holistic care that addresses root causes like housing and poverty. They need to involve people with lived experience in leadership roles and ensure genuine co-design of services. Finally, they must prioritize culturally safe Māori and Pacific care models while keeping political debate empathetic and non-stigmatizing.”
“Having lived experience of mental health and serious addiction problems, with the be if it of rehab, and level 4 mental health and wellbeing, I feel like an underutilised resource.”
“Living with lived experience of mental distress and/or addiction in Aotearoa affects not only individuals, but whānau, families, and wider support networks. Whānau often carry the emotional, financial, and practical impacts of distress and addiction, frequently without adequate support, recognition, or involvement from services. Mental distress and addiction do not exist in isolation. For individuals and whānau, they are often shaped by poverty, trauma, colonisation, housing instability, discrimination, and social exclusion. Policies that focus narrowly on individual symptoms or behaviour fail to address these root causes and place undue burden on both people experiencing distress and those who support them. Access to support is often slow, fragmented, and crisis‑driven. People and whānau are expected to cope until situations become unmanageable before help is offered. Even then, support can be short‑term, inconsistent, or disconnected from what people say they need. Whānau are frequently excluded from care planning, despite being central to safety, recovery, and wellbeing. While lived experience is increasingly referenced in policy, it is often tokenistic. This applies to both individual and whānau lived experience. Genuine partnership requires shared decision‑making power, proper resourcing, and respect for experiential knowledge across policy design, funding, and evaluation. Many people and whānau have experienced stigma, blame, and loss of dignity within mental health and addiction systems. Approaches focused on risk and control can damage trust and make it harder for people to seek help. A rights‑based, trauma‑informed approach that values autonomy, connection, culture, and whānau‑centred practice is essential. Peer‑led, whānau‑inclusive, and kaupapa Māori supports consistently show what works, yet remain underfunded. People and whānau are not broken — systems need to change. Meaningful reform requires Government to shift power, invest in prevention and community‑based responses, and work alongside lived experience and whānau as equal partners.”
“Not everything can be supported digitally. We need Human connection when dealing with a medical bureaucracy that inherently dehumanises vulnerable people. Invest in caring people and resource them to ensure there is sufficient support for people on a recovery journey.”
“There needs to be more awareness in the community about OCD and how much it is affecting people’s lives. OCD also needs to be recognised as a disease that requires specialist treatment, not treatment used for general anxiety.”
“We need a better system. We also need a more pragmatic and nuanced understanding of mental distress - that it's not always a single episode followed by a recovery, that sometimes there is chronicity and that's ok - but we need services that meet people where they're at, and don't drop away when someone still has lingering symptoms. Some of us can live independently and some of us can't - and there has to be places that accommodate people who need homes and ongoing, wrap-around support. And that sometimes, in crisis situations, police should show up - it's about safety, not just for staff and whānau, but also for the person themself. There need to be better places that can help and house people who are struggling. So many of us are landing in prisons because other support avenues no longer exist. We also need to look at why people are struggling - their communities, a country that's intent on moving the homeless on, a wealth differential that's growing, and the closure of community services and things that bring people together.”
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“Integrated Social Supports - funding structures need to be available that link mental health support directly to secure long term housing, education and employment initiatives. You cant expect someone to recover from MH or Addiction if they have no where to live.”
“They are not easily accessible, some people give up.”
“Support and services are worth investing in. Less heirarchy and bureacracy the better. Look after the staff, to ensure systems are sustainable, and pressures dont force them to leave.”
“There is not enough! And I see a shift moving towards peer support. We need access to specialists trained specialists not more people like ourselves. Do we refer cancer patients to other people with cancer and call that treatment.”
“Services seem to be few and far between if you're deemed 'well'.”
“Often the lived experience movement is represented by the loudest and more privileged voices, and I think this means a section of people are missing. My friends in this 'missing' group don't have access to technology, struggle with literacy, and won't be participating in surveys like this. Those of us who have ongoing severe-end mental illness likely have a different need and impression of services. For my part, I think there is too much focus on peers or lived experience people within services. When I am acutely unwell, I look at the person in front of me for support - and their life experience matters - but that's not necessarily an experience of mental health issues. I want someone warm and strong and don't care whether they had depression in their twenties or whatever. I just want good, wise, warm humans. My current mental health clinic is losing skilled clinical staff - Te Whatu Ora are not replacing valuable clinicians like occupational therapists and nurses, who bring unique skill-sets to mental health care. We need MORE OTs, and MORE nurses and MORE psychologists and MORE psychiatrists. As it stands, it is very hard to get an appointment with these folks. Despite their best efforts and wonderful humanity, they can't carry such a haemorrhaging workforce. We also need full clinical psychologists. The idea of getting Associate Psychologists to do this work is silly, as they may cause iatrogenic harm by virtue of lack of experience, and also will take up the time of full clinical psychologists because of a demand for supervision. We need more and better inpatient services! We need our inpatient facilities to be well staffed, safe, and actually therapeutic, in terms of their people, their organisation and their design. We also need better long term living options for people who, through no fault of their own, can't manage independently. We need NGOs and community groups to feel certainty that they will be able to exist irrespective of who's in government. And we need to make sure no groups (eg. Mike King's initiatives) ignore processes and take money from less loud but perhaps more evidence-based community initiatives. Our government should ensure all organisations follow proper processes. Finally, AI should be used very cautiously with a population who have mental distress. AI is not the answer - perhaps it can be useful to plug the gaps - but we need to VALUE our human workers and carers - to prioritise true interpersonal connection - and to show workers respect with pay-parity initiatives and safer working conditions.”
“There aren't enough services available, particularly in the regions.”
“Services improvement.”
“More support and service development especially in specialty areas like eating disorders. We need experienced clinicans and support services. The more early intervention and support in the community will decrease the need for crisis situations. But we do need crisis and long term services with experienced and properly staffed levels to support people who live with long term conditions. Everyone deserves quality support.”
“Support and services are often hard to access, fragmented, and crisis‑focused, rather than centred on prevention and recovery. Many people are expected to cope until distress escalates before receiving help. Whānau play a vital role, yet are frequently excluded from decision‑making and left without adequate support. Funding prioritises clinical, risk‑focused responses, while peer‑led, community‑based, whānau‑inclusive, and kaupapa Māori services that build trust and connection remain under‑resourced. Many people experience stigma and disempowerment within services. A rights‑based, trauma‑informed, culturally safe system, with lived experience embedded in design and delivery, is essential. People are not broken — the system needs to change.”
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“Extra consideration given to them so they can achieve and keep there jobs. Mental health workers to intervene with compulsory mediation talks if needed.”
“Ahead of the 2026 General Election, the core priorities for Government, MPs, and policymakers regarding Lived Experience in the workplace across Aotearoa are: Value the Lived Experience Workforce Fair Pay and Infrastructure: Legislate fair remuneration, standardized competencies, and secure career pathways for the consumer, peer support, and whānau lived experience (CPSLE) workforce. Safe Environments: Ensure organizational cultures protect the unique dual role of these workers, mitigating burnout and eliminating the institutional stigma they face within clinical and corporate systems. Embed Leadership and Co-Production Decision-Making Roles: Shift from using lived experience as a token "feedback box." Fund and mandate senior leadership, governance, and advisor positions for tāngata whaiora within workplace health, safety, and system design frameworks. Cultural Competency: Support the growth of Māori and Pacific lived experience workforces, enabling culturally safe, relationally driven, and mana-enhancing practices in the workplace. Support Inclusive General Workplaces Flexible and Safe Disclosures: Update employment guidelines to ensure workers outside the health sector can safely disclose mental distress or addiction history without facing discrimination or stalling career progression. Proactive Well-being Support: Move general workplace policies away from standard crisis management toward systemic prevention, addressing workplace psychosocial hazards and the compounding impacts of the cost-of-living crisis on employee distress.”
“There need to be more programmes to promote awareness of mental illness, particularly OCD in the workplace.”
“It’s still shit. It’s still not understood and there isn’t enough penalties for when your manager does something completely inappropriate because you do have a condition.”
“Having colleagues specifically trained in peer roles allows me to open up and divulge things I otherwise would have nobody to talk to about.”
“Lived Experience Strategic roles are crucial across the system. Their expertise is invaluable and cant be taught theoretically.”
“Pay more money increase wages for lived experience peer support workers. They do some high level complex work but pay does not reflect this, especially as pay equity got scrapped. If you want to retain a workforce you need to pay more.”
“Going back to work after being unwell can be a very stressful time. You can be worried whether you will be ok, whether it may trigger a relapse, so although it's a workplace where the usual standards are expected, perhaps some psychological support wouldn't go amiss, or it is made clear that your employer is open to being a bit more flexible.”
“Lived experience is increasingly valued in workplaces across Aotearoa, but too often it is tokenised, under‑resourced, or misunderstood. People are expected to share deeply personal experiences without adequate support, power, or fair pay, and are sometimes treated as representatives rather than skilled professionals. Lived experience (and whanau lived experience) roles require clear boundaries, supervision, career pathways, and safe workplaces, just like any other role. Disclosure can carry real risks, including stigma, burnout, and discrimination. Whānau lived experience is also frequently overlooked and this needs to change across the mental health and addiction sector. To be effective and ethical, lived experience (& whanau LE) roles must be properly funded, supported, and embedded in decision‑making, with wellbeing, tikanga, and sustainability prioritised. Lived experience (& whanau LE) is expertise — not charity — and should be recognised and treated as such.”
“There is still stigma in workplaces, especially where people have mental distress that goes beyond anxiety and depression. There are workplaces that actively seek out lived experience, but often it's a narrowly defined idea of lived experience that can foster a siloed workforce - supporting itself in an insular manner and forgetting to attend to the on-the-ground needs of people at the 'ugly' end of mental health. There is better understanding of accommodating people with difference and/or disability, which has been helpful.”
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“EVERYTHING!”
“The advantages of mental health education to our children in schools.”
“Government, MPs, and policy makers must understand that current mental health education in Aotearoa is too reactive, underfunded, and inconsistent across schools, leaving youth without foundational coping skills until they reach a crisis point. Effective education must move beyond basic awareness campaigns and instead embed universal, culturally grounded emotional literacy and resilience programs into the core curriculum from an early age. To make a lasting impact, policy makers must provide schools with dedicated funding for sustainable, evidence-based resources and integrate lived experience perspectives into classroom learning, ensuring that educators are fully equipped to support students without compounding the stigma.”
“Mental health education in Aotearoa remains inconsistent and insufficient, particularly beyond schools and clinical settings. Many people and whānau lack accessible, practical information about mental distress, addiction, recovery, and how to navigate support systems. Whānau are often expected to support loved ones without understanding what is happening, what options exist, or how to care for their own wellbeing. Education is too often crisis‑focused and medicalised, rather than grounded in prevention, wellbeing, cultural understanding, and lived experience. Whānau‑inclusive, culturally responsive, and community‑based mental health education is essential to reduce stigma, build confidence, and strengthen early support. Investing in education supports not only individuals, but whole whānau and communities to respond with understanding, compassion, and care.”
“Stop focusing on just the high level stuff and support those with serious mental health conditions when I was diagnosed with bipolar I didn’t even get a pamphlet I’ve had to work it out all by myself.”
“Education should start early. Understanding and awareness not only means people are more comfortable talking about mental health at all levels. It is so important for children to understand and to break down the stigma mental health still carries.”
“During primary and intermediate school years, there could be a focus on learning how to deal with challenges and to learn how to emotionally self-regulate. There could be better education for the whānau and communities around how to support people who are different and people who may experience mental distress. Indirectly, education at the family level could help illustrate relational and lifestyle things that might support better mental health - especially families with young children. Being resilient should be celebrated. And teaching good mental health and how to foster it should be a focus rather than just looking at difficulties and deficits.”
“It is severely lacking.”
“There needs to be more education provided.”
“It could be made more accessible and affordable. It could be offered at a younger age in schools.”
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“Alongside the increase in peer workers working with tāngata whaiora, I would like to see an increase in those with lived expertise (lived experience, community knowledge, and professional experience combined) in leadership roles, making decisions, developing policy, forming new legislation. I would really like to see more recognition of te ao Māori perspectives on different ways of being and experiencing and some depathologisation where that pathology perspective is unnecessary and damaging. Particularly in relation to neurodivergence. I think we need much more recognition of neurodivergence in mental health and addiction and support and treatment to meet specific needs. The siloing and separation of mental health from disability support is a significant barrier to good care and a very big barrier for those of us who are neurodivergent.”
“As well as above, prioritizing people with severe mental health distress and substance histories for routine physcal health interventions such as cancer screenings. People in the Mental Health system in NZ face poorer physical health outcomes and lower life expectancy due to diagnostic overshadowing. Harm Reduction and Detox Infrastructure - shifting drug and alcohol policy from a criminal justice lens to a health harm reduction lens. This includes shorter wait times for voluntary detox facilities and increased funding for community led solutions. Also increase services for detox in rurally isolated areas of NZ. People shouldnt have to move away from their whanau and supports to go to detox or rehabilitation.”
“Health education awareness program.”
“To genuinely transform mental health and addiction policy in Aotearoa, legislative framework shifts must move away from the current system's historical reliance on coercion, fragmentation, and reactive crisis-management. ⚖️ Enact and Prioritize Legislative Reform Progress the Delayed Mental Health Bill Uphold Human Rights: Parliament must urgently resume debate on and pass the new Mental Health Bill to completely repeal and replace the outdated Mental Health (Compulsory Assessment and Treatment) Act 1992. End Seclusion: The new law must establish a rigorous, rights-based standard that actively reduces—and ultimately eliminates—the use of seclusion and compulsory community treatment orders (CCTOs), which disproportionately impact Māori and Pacific communities. Recognize Lived Experience in Strategy and Law Legislate Co-Design: Mandate that all future mental health and addiction strategies (such as the national Mental Health and Wellbeing Strategy) legally require the co-production of services alongside tāngata whaiora. Formalize the Peer Workforce: Build a distinct regulatory or supportive framework that protects, properly remunerates, and standardizes career pathways for the consumer, peer support, and whānau lived experience (CPSLE) workforce.”
“Having peer support workers available at all levels and departments overseen by these laws and policies.”
“Mental health and addiction policies and laws in Aotearoa need to shift power toward people with lived and whānau experience and move away from crisis‑driven, risk‑focused approaches. Strengthening a human‑rights‑based framework, including reducing coercive practices and increasing choice, dignity, and autonomy, is essential. Policy must address the social determinants of wellbeing by aligning mental health reform with housing, income, employment, and education policies. Prevention and early support should be prioritised, rather than relying on acute and compulsory responses. There should be sustained investment in peer‑led, whānau‑inclusive, community‑based, and kaupapa Māori services, with funding that supports long‑term delivery rather than short‑term contracts. Whānau need formal recognition, resources, and a meaningful role in policy and care decisions. Lived experience and whānau leadership must be embedded and resourced across policy design, legislation, service commissioning, and evaluation. Real reform requires courage to redistribute power and invest in what people say actually works.”
“Make sure all policies align to Te Tiriti o Waitangi for the health and safety of our country going forward.”
“We need more quality services right throughout the country. In rural areas and cities. We need to be able to staff services to a safe level and provide ongoing support and education. I believe the more community based services with an education and support focus will help prevent crisis situations and escalating issues. More services are needed but a holistic approach is also vital - We need to address poverty, housing, health and other social pressures. Mental health needs investment.”
“Emphasise dignity and respect for tangata whaiora, emphasise mental health as a concern for everyone, rather than putting people into 'well' and 'unwell' boxes.”
“Ad campaigns about OCD to raise awareness should be created . Similar to the ad campaigns relating to depression which worked really well in raising awareness!”