Working With Lived Experience Advisors

“Lived experience” has become one of the most-used and least-examined terms in the UK charity sector. Charities want lived experience advisors on their boards, in their service design, on their fundraising panels, in their communications. The intention is broadly right; the practice is frequently wrong.

Done well, lived experience input transforms the quality of charity decisions. Done badly, it becomes a form of extraction: people with hard-earned knowledge of a difficult system are asked to advise, on top of often demanding lives, with limited pay, limited authority and limited follow-through. What follows is a grounded guide to doing it well.

The pre-condition: clarity about what you want

Three different things often called the same thing

• Consultation: gathering input from people with lived experience to inform a decision the charity will make.
• Co-production: making the decision together, with lived experience advisors and staff sharing authority.
• Leadership: people with lived experience hold the decision-making role itself.

These three are not interchangeable. Most failure cases come from a charity calling it co-production when it is actually consultation, then making decisions the advisors did not endorse and surfacing the gap too late.

Name the mode upfront

Tell prospective advisors which mode applies, in writing, before they take on the role. Different modes attract different people, carry different time commitments and require different governance.

Pay, contracts and basics

Pay properly

A professional rate, in line with other consultant input. Travel, subsistence, caring costs and access support paid on top, not deducted from the fee. Pay promptly, ideally on day of work.

Issue contracts

A short written agreement covering scope, hours, pay, confidentiality, IP, complaints route and exit. The contract signals that the relationship is professional and provides redress if it breaks down.

Cover access needs

Accessibility (physical, sensory, neurological, financial) should be addressed from the first conversation, not retro-fitted. Budget for it.

Support and safeguarding

A named lead

Every advisor has a named contact at the charity who is their point of liaison. The named lead should be senior enough to escalate concerns and consistent enough to build trust.

Pre-brief and de-brief

Before each engagement, a short pre-brief covering the meeting purpose, what kind of input is sought, what is and is not in scope. After, a de-brief covering wellbeing, follow-up actions and any concerns. Twenty minutes either side.

Reflective and wellbeing support

Lived experience work can re-surface difficult experiences. Make access to wellbeing support (EAP, counselling, peer support) available, funded by the charity, without requiring disclosure of why.

A safeguarding pathway

Standard safeguarding policy applies. The advisor is a person the charity has duties towards, not just a contributor to its decisions. Train the lead and the wider team accordingly.

Authority and decision-making

Be honest about authority

If the advisory group has decision-making authority, document that clearly: which decisions, with which thresholds, with what review mechanism. If it is advisory only, say so plainly. The damage comes from ambiguity.

Document responses, not just inputs

When advisors give input, the charity should record both the input and the response: what changed, what did not, and why. Without this loop, advisors increasingly feel their time has produced nothing and disengage.

Avoid the single advisor trap

One lived experience advisor in a room of fifteen staff is structurally vulnerable. Plan for two or more in any given room, or for the advisor group to convene separately and bring a shared view.

Recruitment and reach

Outside the usual networks

Charities that recruit advisors through their existing networks tend to get a particular slice of perspective: people who already know the charity, often comfortable in formal settings. Casting wider (community partners, peer groups, frontline services) produces richer input.

Fixed terms, with renewal

Two-year terms with one possible renewal work well. Long enough to build influence, short enough to bring fresh perspective.

Pathways onward

Where appropriate, build pathways from advisory work to other roles: trusteeship, staff roles, paid consultancy. Lived experience is not a one-way contribution.

Practice mistakes to avoid

Asking advisors to validate decisions already made

Bringing a near-final plan to advisors and asking for sign-off is consultation theatre. Bring the question early, while the answer is still open.

Treating lived experience as a single perspective

Two people with experience of the same system will often disagree about what should change. The advisory function is to surface that range, not to manufacture a single line.

Confusing identity with expertise

Lived experience is one form of expertise; it does not collapse into all forms. Advisors should be respected for what they know and supported where the work touches expertise they do not claim. The right combination of lived experience and professional expertise tends to produce the strongest decisions.

Letting the function quietly atrophy

Advisory groups that meet less and less, with weaker briefings each time, are common. Annual review of the function (purpose, attendance, decisions influenced, advisor feedback) keeps it honest.

Lived experience advisory practice is the test of whether a charity actually means what its values say. Whatever the policy claims, the contract, the pay and the meeting notes will tell the real story.

A 90-day set-up plan

1. Days 1 to 30: agree the mode (consultation, co-production, leadership). Draft contract, pay rate, support package.
1. Days 31 to 60: recruit a small initial group. Run pre-brief, first meeting and de-brief. Document responses.
1. Days 61 to 90: review with the advisors. Adjust pay, format and authority based on their feedback. Set a 12-month review point.

Three steps. The point is not to launch perfectly; it is to launch honestly, hear from advisors, and adjust.

Further reading

An EDI Policy That Staff Actually Use | Environmental Sustainability for Small Charities | A Hybrid Working Policy for Charities That Actually Works