How to Turn Lived Experience Into System Change

Been through something that should not happen to anyone? Your experience can help change things. You get to decide how, when and whether.

Systems often listen to patterns better than they listen to one person. That is not fair, but it is how a lot of them work. So one way to turn your experience into change is to show that it is part of a pattern.

Here is a way to do that, one careful step at a time.

Step 1. Look after yourself first

You do not owe anyone your story. Telling it can bring things back. Before you start, ask yourself:

• Am I steady enough to do this now?
• Who can I talk to afterwards?
• Is the thing I am describing finished, or still happening?

If you are still in the middle of it, deal with that first. Change work can wait.

Step 2. Write what happened

In order, with dates, the way you would for any advocacy email. Facts first. This version is for you.

Step 3. Find the pattern

Read it back and ask:

• Where did it get stuck?
• Who was meant to do something, and did not?
• Was the problem a person, or the way the process was built?
• Have I heard of this happening to anyone else?

A person having a bad day is one thing. A process that sends everyone in a circle is a pattern. Our article on finding the system pattern goes deeper, and the System Red Flags page lists some common ones.

Step 4. Add evidence

One story is powerful. A story with a timeline, copies of letters and a few examples from other people (with their permission) is much harder to set aside. Your Evidence Should Tell a Human Story shows how.

Step 5. Choose where to take it

Different places do different things.

The service itself. Feedback or a complaint. Good for fixing something specific.

An independent body. An ombudsman or a commission. Good when the service will not listen.

A consultation or review. When a government is asking for views. Good for shaping rules.

A peer or advocacy group. Good for finding others with the same experience and for safety in numbers.

A story shared publicly. Powerful, and it cannot be taken back. Think hardest about this one.

Step 6. Protect people

Before you share anything beyond the service:

• Consent. If other people are in your story, ask them. Their name is theirs.
• Names. Leave out names of individual workers unless you have a very good reason. Describe roles, not people.
• Detail. Remove anything that could identify you or someone else if you do not want to be known.
• Safety. Ask yourself whether sharing this could make things harder for you with that service.

Step 7. Ask for a specific change

“This should be better” is easy to nod at. “Please add a named contact to every referral” is something an organisation can act on. Be as concrete as you can.

Your pace

You can stop at any step. Writing it down and keeping it private is a perfectly good outcome. Telling one person is another. You decide.

If you have no energy for any of this

Do just step 2, for yourself, and put it somewhere safe. It might matter later.

What to remember

Your experience is not only a story about what went wrong. It is information about how a system works, and you are one of the few people who has seen it from the inside. Treat it with care, and use it on your terms.

Read more in Why Lived Experience Is Expertise.

Madeleine x