MHP Research Summit: A Lived Experience Perspective

Deb is a member of our lived experience Steering Group. She attended the Mental Health Platform Research Summit on 10th October 2025, and tells us about it from a Lived Experience, Non-Academic Perspective.

Acronyms: MHP: Mental Health Platform | PPI: Patient Public Involvement | SMI: Severe Mental Illness | BPD: Borderline Personality Disorder

Reports of solid PPI at the Platform level & across Hubs were encouraging. And by co-chairing, taking part in workshops, asking incisive questions, & properly engaging, those of us with Lived Experience sent a clear message:

This is about & for people like us. We know what’s important. We need to be heard. We’re integral, not optional.

I built up a bit of momentum of my own (especially after coffee #3) - mega bonding with the Lived Experience, Comms, & Complex Emotions teams; introducing myself to every head honcho from London & Oxford I could find (angling for more Lived Experience work, writing, & involvement in any drug trials going); & handing out business cards to anyone with an open paw or pocket (printed far too many!).

Disconnect

But huge positives & best intentions aside, a few things didn’t quite land for me.

Some of the language used about patients, findings & outcomes felt stark - stripped of compassion. I know that’s how research language rolls, but it didn’t always feel like the Lived Experience members in the audience were considered. And we definitely could’ve done with a trigger warning before the slide about suicide/attempted suicide rates for BPD. (Necessary, maybe - but upsetting nonetheless).

While the research developments themselves were obviously positive, it wasn’t particularly clear what that might mean for someone with SMI in terms of tangible improvements, creating a better quality of life, making a life worth living. The So What? was missing - a gap that certainly needs to be bridged.