I walked into Marylebone sweating and still took the microphone

By Sharif Mussa, With-you Associate, Mental health lived experience professional

This blog was originally posted via with-you, you can see the original post here.

I trained early this morning, as I do every day, with my Bushman Challenge community – a wellness initiative I established in the pursuit of mental wellbeing and community connection.  But I was mentally prepping at the same time for the day ahead. Not sat at a desk. Not even calm. Sweat on. Hunt for Wellness energy, but with a purpose.

Because I was going to be on a panel at One HealthTech London event: The patient’s voice is the most important voice in healthcare.

As a mental health lived experience professional I was there to represent the reality of those I support to contribute to a meaningful discussion in mental health product and service design. And I caught myself asking that backwards question I ask myself often. How did I end up here?

Me. A refugee. Someone with lived experience of mental health struggles. Standing in front of tech innovators, researchers, policy makers. In a swanky central London Marylebone Hill space that does not feel like my natural habitat.

I arrived in panic. Proper panic. My body went first. Sweat, heat, anxiety right there in the room.

They asked me to introduce myself. So, I told the truth.

I said I did my Hunt for Wellness this morning. Then I had an accident. Then I came straight here. My body is responding. I live with PTSD. I live with mental health challenges. I will be fine, I am just getting into the room. Which was the truth.

Then I stood up. I got off that chair and owned the room.

As a peer, I owned my crisis. I owned my trauma in real time. Not to perform it. To stop hiding it and allow myself to be authentic.

Because peer support is not just a role. It is a way of being with people. It is honesty with care. It is using your lived experience with skill, boundaries, and purpose. It is saying this is what is happening for me, and I can still stay with you.

That is what we champion as peers. We champion the humanity. We champion the dignity. We champion the truth, even when it is messy.

Once the discussion started, I could feel it. A lot of careful talking. A lot of polite circling. Good people. Brilliant people. Great audience. People trying to do the right thing. But still, pussyfooting around the real issue.

Everyone kept saying the same phrase. Bring the patient voice to innovation. Can we bring the patient voice.

We talked about innovation and tech. I said the NHS app has been fantastic. Millions of people signed up and are supposedly using it. But the people I see in crisis do not come through the app.

Almost everyone I see in crisis just presents. They walk in. They call. They show up. They do not arrive neatly through a digital front door.

From a peer support perspective, that makes complete sense. Because when people are in crisis, they are not shopping for services on their devices. They are surviving. They are trying to get held and hold in real life. Trying to be believed, listened to. Trying to be safe.

If we want tech that works, it must be directed by the patient voice and must be made safe by clinicians and health services. And then it must be scaled in a way that makes it accessible. In my experience that last part is where things fall apart but we mustn’t give up hope and keep trying.

AI and peer support discussion came up right at the end. That timing told me a lot. AI and peer support is the biggest innovation right now in mental health services proving to work. Our Patients are using it. We are using it. But we still leave it till the end like it’s a side topic.

That shows how little of ourselves we bring into these well-meaning panel conversations. How we keep the real stuff out. The fear. The mistrust. The barriers. The fact that a lot of people do not trust devices at all, a lot of clinicians don’t trust the systems they work in and live with scrutiny of their practice every day.

If we cannot speak about that in rooms like this we design tools for the majority, the people who already feel safe. And we will leave everyone else behind to fend for themselves.

Peer support champions something different. We champion authenticity. We champion saying I don’t have all the answers, but I will stay with you. We champion sharing power. We champion hope that is grounded in the possibility of recovery, not fluffy.

In the Q&A, the question that landed directly on me was. Do the people you work with want tech innovation?

I said no.

Not because people are anti progress. Because people are tired. People are burnt out. We have been sold too many promises and fixes by systems and structures that never materialise.

The panel discussion was good. The feedback was complimentary for my points and language I used. But I left with one thought sitting heavy in my heart.

We keep asking for the patient voice while leaving our own voice out of it. However, peer support keeps pulling us back and grounding us to the basics. If it will not work for clinicians, why would it work for patients. If it becomes extra paperwork, another badge, another ladder, another NHS banding flex, it will never be organic. It will never be authentic.

Peer support makes room for being human. It makes room for not having the answers. It makes room for getting things wrong and coming back again.

The patient voice is human. Sweaty. Messy. Honest. And in the room.

Being an associate at With-you, for me, is about keeping that truth alive. Championing lived experience with respect. Backing peer support to be more than a token seat at the table. Making sure people are not just invited in but held well once they arrive.

If an innovative room can’t hold that, the tech won’t hold the people either.

View the original blog post here.