Co-design to co-creation please!
Two people walk into their local emergency department. Same gender. Same age. Same symptoms, and then they both begin having seizures.
One is given life-saving medication while the other is told to “just breathe deeply.” “It’s just in your head”. What’s the difference?
The second person's medical record said some important words. “History of mental illness”. So when they said they were having a seizure, they weren’t believed.
They ended up in a coma.
The only reason they’re still alive today is because a nurse from another ward happened to know them personally and stepped in. If that sounds like an exception. I’m really sorry to tell you—it’s not. It’s the rule.
My name is Asha and I speak from a lived and living experience of mental health challenges and suicide crisis. I’ve spent the past three years working as a peer worker, supporting people after suicide attempts, and I’ve spent the past fourteen years navigating my own mental health challenges.
I’m not writing this as a case study, but as someone who has moved through these systems and helped others do the same while distressed, afraid, and begging for help.
My voice is one among many, but it reflects patterns, not exceptions
Good crisis support isn’t complicated— but it does require a shift.
3 essentials
Listen
Let’s start with something that sounds simple. Listening.In physical health, there are often clear standards.If someone presents with a broken leg, there’s a process. And it’s usually the same every time. But we’ve taken that same approach and applied it to mental health crisis.That’s where things start to break down.
The DSM-5 lists over 450 mental health diagnoses.
Over 450. And I know, because I counted them.
That’s over 450 different ways mental illness and distress can show up—
different experiences, different needs, different responses.
And yet, they are all treated the same.
If we treated physical health like this, the consequences would be dire.
But in mental health, this has become the standard.
Providing support that actually helps requires listening. Real listening. Not just “active” listening, but listening to the human in front of you.
Listening without interrogation.
Listening without judgement.
Listening with genuine curiosity.
Listening and remembering that you are speaking to a human being,When people are truly listened to, they will tell you what is happening. They will work with you.
And I see this every day in peer work.
People de-escalate,
People feel safer,
People stay.
People get better. Not because of a specific intervention, but because someone finally listened.
Believe
There is a fundamental difference between seeking help for physical health and seeking help for mental health.
I had a very interesting experience recently when I had to call the ambulance because my grandmother had broken her hip. Once the paramedics arrived, I noticed my body was able to calm down, and trust that everything would be okay. It only hit me a day later the stark difference in how I feel when calling for a mental health crisis.
See, when paramedics show up, or you finally get to speak with a clinician, there is the opposite feeling. You are forced into a heightened state. You are forced to become the perfect self-advocate. You must explain what is happening correctly. You have to seem sick enough to need help but not too sick that you aren’t believed, articulate enough to be understood but not so articulate that they think you’re lying or being manipulative.
Because one wrong word can mean losing autonomy, losing rights, losing control.
Or, not being helped. Being left alone.
Right now, our system is telling people:
You need to get better before you can get help.
If you say the wrong thing, things will quickly escalate, and your autonomy will be taken as restrictive practices are often the first thing used on people with mental health challenges. You’ve reached out for help because you feel unsafe and end up being medically sedated or worse.
These Practices increase fear.
Increase shame.
And break trust.
A truly effective system should be person-centred and recovery-oriented.
Person-centred means treating people with dignity, respect, and compassion and recognising that they are the experts in their own lives. Even when that challenges your training and assumptions.
Because what matters most in crisis is simple:
Safety.
Dignity.
Choice.
And being believed.
Invite
In the disability rights movement, there is a very important phrase.
Nothing about us without us.
This is more than a slogan. It means that decisions about our lives, our care, and our systems cannot be made without us being actively involved in shaping them.Not as storytellers. Not as a tick-box exercise. But as decision-makers.Because being “at the table” is not enough if you are not being heard. And being heard is not enough if nothing changes.We must be in the rooms making the decisions With real influence. With real authority.
I have sat in those rooms, again and again where people with lived experience have clearly said what is needed. And been dismissed. Only for those same systems to later ask: “Why isn’t this working?” The answers were already there.
Your lived experience workforce knows what needs to change. But too often, we are consulted and not trusted.Heard but not acted on.What is happening is not collaboration. It’s tokenism.
Real change requires more than listening.
- It requires sharing power.
- It requires putting ego aside.
- It requires recognising that lived experience is not an “add-on”, it is expertise.
There are peer-led services doing incredible, life saving work.
My past three years of peer work was with a service known as The Way Back, providing 3 months of psychosocial support after a suicide attempt. This service worked but only because us peer workers were pushed to our limits. We constantly cried out to our funding body for a conversation which was never received.
We also see services in our community that are providing important support losing funding every day. Only for this funding to be moved to create a new service doing something different but worse.
