Lived experience leadership: whose experience counts, and what does it change?

We need a broader understanding of the experiences people bring into organisations, and a better way of recognising their value without asking people to surrender their privacy to secure funding.

There is an important principle behind funding lived experience leadership: people affected by an issue should have the resources and power to shape the response to it. They should not have to rely entirely on institutions interpreting their lives, defining their needs and deciding what a solution should look like.

At Do it Now Now, we believe in that principle. But believing in it also means being willing to question how it is put into practice, including in our own work.

Whose experience counts? Which experiences are we overlooking? How do we know whether the people represented within an organisation actually influence its decisions? And when we ask an applicant to demonstrate lived experience, are we asking for relevant information, or inviting them to disclose something deeply personal because they believe their funding depends on it?

A narrow understanding of lived experience can exclude valuable knowledge. A poorly designed assessment can turn a meaningful commitment to community leadership into a transactional exercise. An organisation can collect the right demographic information without changing who holds power.

The purpose should not be to establish who can tell the most compelling story of hardship. It should be to understand what an organisation knows, whose knowledge shapes its work, and how that knowledge changes its decisions.

Three forms of lived experience

We propose thinking about lived experience through three levels: primary, secondary and tertiary.

These terms describe different relationships to an issue. They are not a ranking of suffering, personal worth or leadership ability. Nor are they fixed categories that place each person into a single box.

Each offers a different kind of knowledge and has a role to play.

Primary lived experience

Primary lived experience means having experienced the social issue yourself, whether currently or in the past. That might include addiction, violence, homelessness, severe debt or exclusion from essential support.

This is the knowledge of what it feels like to live through something: how it enters your daily life, what decisions become possible or impossible, what support helps, and what a service provider might misunderstand.

A person who has experienced severe debt, for example, may recognise that a technically correct intervention still feels inaccessible, humiliating or impossible to follow. They may understand why someone avoids a letter, misses an appointment or does not trust an offer of help.

That knowledge should have meaningful authority in decisions about the issue. It should not be included only after a strategy has been written or a service has been designed.

But primary experience does not make one person representative of everyone affected. People encounter the same issue under different circumstances, with different resources, identities, relationships and opportunities. Recognising direct experience should deepen our curiosity about those differences, not end it.

Secondary lived experience

Secondary lived experience comes through caring for or supporting someone who experiences an issue directly.

This might be a parent advocating for a child, a partner supporting someone through addiction, or a family member navigating services alongside a loved one.

Their experience is not identical to the experience of the person they support. It is nevertheless real, consequential and their own.

They may have spent years dealing with providers, challenging decisions, coordinating appointments or trying to understand systems that do not speak to one another. They may have carried the practical, financial and emotional responsibilities of unpaid care. They may have experienced grief, exhaustion, uncertainty or the consequences of repeatedly being unable to secure appropriate support.

Calling this experience “secondary” must not make it sound second-rate. In relation to unpaid caring, that person has primary lived experience. The description depends on which issue we are considering.

Recognising secondary experience allows us to understand more of the world around an issue: the relationships that sustain people, the work that happens beyond formal services, and the consequences that extend through families and communities.

Tertiary lived experience

Tertiary lived experience, within this proposed framework, comes from working within the systems responding to an issue.

This may be the practitioner who repeatedly encountered the same institutional failure. The internal changemaker who tried to improve a service but could not move the bureaucracy. The person who eventually established an organisation because they believed a different response was necessary.

Their knowledge is not simply that they hold a qualification or have worked in a relevant sector. It is the experience of operating inside a system: understanding its routines, incentives, constraints, relationships and resistance to change.

They may understand where discretion exists, why a referral pathway breaks down, or how an apparently straightforward policy becomes difficult to implement.

That is a valid form of experiential knowledge. It is not the same as having experienced the issue as a person seeking support, and it should never be presented as a substitute for that perspective. But it can be important to building solutions that work.

The question is how that knowledge is used, and whether it remains accountable to the people the system is meant to serve.

Different experiences belong in the same decision-making room

These categories overlap.

Someone may have experienced homelessness, supported a family member through a housing crisis and worked within a housing service. A professional role does not erase a personal history. Caring for someone does not mean a person has no direct experience of their own.

Nor should we assume that everyone wants to disclose every part of that history.

The value of this framework is not that it creates three new boxes for an application form. It is that it encourages us to notice the different kinds of knowledge an organisation needs.

Imagine an organisation designing support for people in severe debt.

Someone with primary experience might identify why the proposed first conversation would feel frightening or judgemental. Someone with secondary experience might notice that the model assumes a family member can repeatedly take time off work to help. Someone with tertiary experience might understand why the proposed referral arrangement will fail under existing processes.

Together, these perspectives can reveal weaknesses that any one of them might miss.

This matters within boards, leadership teams, staff groups, advisory structures and funding panels. But recognising different forms of experience does not mean treating them as interchangeable. A room full of professionals cannot reasonably claim to offer the same perspective as a room in which people directly affected hold meaningful power.

Broadening our understanding of lived experience must not become a way of pushing primary experience further from the centre.

Equally, protecting the importance of primary experience should not require us to dismiss the knowledge of carers or people who have worked to change institutions from within.

The task is to bring these perspectives into a productive relationship, with clarity about what each can, and cannot, speak to.

Representation is not the same as influence

An organisation can be diverse in its composition and still be narrow in its decision-making.

People with relevant experience might be present but unable to challenge the chief executive. They might contribute to an advisory group whose recommendations can be ignored without explanation. Their stories might appear in fundraising materials while their views have little effect on budgets or priorities.

This is why asking who is in the room is necessary, but insufficient.

We also need to ask what they can change.

Can people with relevant experience shape the organisation’s priorities? Can they challenge an approach before resources are committed? Do they influence recruitment, service design and the allocation of money? When they disagree with a decision, is there a meaningful response?

For an organisation working with Black communities, being Black-led should not mean assuming that one person’s experience captures the whole community. Disability, queerness, class, gender, age, geography and caring responsibilities may all be relevant to the perspectives an organisation needs to hear.

This is not an invitation to assemble a checklist of identities. It is an invitation to remain attentive to whose understanding is missing, whose contribution is being overlooked, and whose voice carries the most weight.

The quality we should be interested in is the quality of understanding, participation and influence, not the supposed quality of someone’s suffering.

When recognition becomes extraction

There is nothing inherently wrong with a funder wanting resources to reach people with lived experience of the issues they are working to address.

There can also be a legitimate reason to reserve a particular funding opportunity for organisations led by people with primary experience. A broader framework does not mean every fund must treat all three forms as equivalent.

But funders should be clear about that choice, rather than allowing a narrow eligibility definition to become a judgement that other forms of experience are not valid.

They should also think carefully about how the question is asked.

Anecdotally, we have heard from leaders who felt that funding questions required them to recount moments of real trauma. The intention may have been to understand their connection to an issue. The experience of answering was something else: returning to a painful event and deciding how much to reveal to someone with the power to fund their work.

That is not an acceptable price of access.

There is a difference between confirming a relevant connection and narrating the most distressing details of someone’s life. There is a difference between someone freely choosing to share their story and feeling that withholding it might weaken their application.

The same care is needed around declarations of disability, sexuality and other aspects of identity.

Queerness is not a social problem. Nor should a disabled person have to present their life primarily as a story of hardship. Identity may be relevant to understanding exclusion, access, community knowledge or the purpose of an organisation. It should not automatically become an invitation to disclose diagnoses, discrimination, family rejection or other intimate experiences.

Lived experience also includes belonging, creativity, solidarity, care and knowledge of what already works. We diminish it when we recognise only its relationship to pain.

People should be able to explain what they know and how they lead without proving how much they have suffered.

Ask about the organisation, not for a personal confession

A better assessment would distinguish between two things: the relevant experience held within an organisation, and the way that experience informs its work.

The first can often be understood through proportionate, self-declared information.

Depending on the purpose of the fund, this might include the percentage or broad proportion of board members, senior leaders or people in other meaningful decision-making roles who hold relevant experience. It might distinguish between primary, secondary and tertiary experience where that distinction genuinely helps the assessment.

The relevant group matters. A percentage across an entire workforce tells us something different from a percentage among the people who control strategy and resources.

These questions also need room for overlap and privacy. Someone may belong in more than one category. Someone else may choose not to disclose. Non-disclosure should not automatically be recorded as an absence of lived experience.

And percentages are not automatically anonymous. In a team of two or a small board, a precise figure may effectively identify someone. Broad ranges, an organisation-level declaration or a brief explanation of why greater detail would compromise privacy may be more appropriate.

The second part of the assessment should focus on practice.

A funder could ask:

How does relevant lived experience influence your organisation’s decisions? Briefly describe one example of something you changed because of it. You do not need to share anyone’s personal history.

That answer could reveal far more than a detailed account of the founder’s most painful experience.

It might explain why an organisation changed its opening hours, removed a burdensome requirement, redesigned its communications or chose not to pursue a service model. It could show whose input mattered and what happened as a result.

A complementary question might be:

Where do people with relevant lived experience hold decision-making authority, and how can the people affected by your work challenge or influence your approach?

This moves the assessment towards power, learning and accountability.

It should not become another elaborate reporting exercise. Small organisations should be able to explain how they work in ordinary language, drawing on existing practice rather than creating new committees or producing polished case studies for an application.

The aim is to understand the organisation, not reward its ability to perform participation on paper.

An honour system is not an absence of accountability

Much of what organisations share about identity and lived experience is already self-declared. Asking for more intimate detail does not necessarily make that information more reliable. It may simply make the process more intrusive.

An application form does not become a better verification tool because it produces a more painful story.

We should be willing to use clear definitions, proportionate declarations and an honour system for information that does not require an intimate account to establish relevance.

Where a fund has specific eligibility requirements, it can ask for the minimum confirmation necessary and explain why that information is needed. A private confirmation of eligibility is different from a personal narrative written to persuade an assessment panel.

Trust can sit alongside appropriate scrutiny of an organisation’s governance, activities and decision-making arrangements. Funders can examine whether an organisation does what it says, listens to the people affected by its work and responds when concerns are raised.

None of that requires asking an applicant to bare their soul.

Fund the knowledge. Look for the power.

Lived experience leadership should be more than a description of who founded an organisation. It should be visible in what the organisation understands, how it makes decisions and who can hold it accountable.

Our proposed framework of primary, secondary and tertiary experience is an invitation to see that knowledge more fully. It recognises the person directly affected, the person caring alongside them and the person who has experienced the system from within, without pretending that they occupy the same position.

For organisations, the challenge is to bring different experiences into genuine dialogue and give them meaningful influence.

For funders, the challenge is to ask questions that reveal that influence without turning identity or trauma into a currency.

These are questions for us at DiNN, too. Supporting lived experience leadership means continuing to examine what we recognise, what we ask people to share and what our processes reward.

The better question is not: “What happened to you that makes you deserving of this money?”

It is: “What does your organisation understand because of the experiences within it, and how does that understanding change what you do?”