PPIE Rookie's Blog 

'Patient & Public Involvement & Engagement (PPIE) Rookie’s Blog' is written by Deb -  A member of our Lived Experience Advisory Panel (LEAP) on their experience of joining the research team. 

I’ve been part of the Complex Emotions LEAP for eight months now. Honestly, I’m not entirely sure how I got here. I don’t live in Sheffield or Plymouth. I’ve no background in research. Maybe it was some tenuous link to a University, or my LinkedIn stalk of the professors involved, or perhaps I just made something up & hoped for the best.

Whatever the reason, I’m here. I’m in! 

A Leap of Faith

I had no idea what to expect. I’d never worked in academic research. I’d never had a remote job. Would I take to it? More importantly – would it take to me?

Sure, there was an opt-out-clause in the paperwork; but still five years is a chunky commitment. And let’s be real – there’s also the stigma, sporadic (& minimal) pay, and the inevitable opportunity cost. 

No matter - I leapt! 

My Thing

Turns out, not knowing much about research is actually my edge - having no (or very few) preconceptions means I’m free to challenge & bring fresh ideas to the table. I can get away with asking silly questions - shake things up a bit.

In fact, I’ve come to believe that if I don’t understand something, maybe it’s not because I’m an ignoramus. Maybe it just doesn’t make sense.

Niggly Bits

Of course, there are niggles. Ideas are discussed. Then discussed again. Then agreed by committee & maybe a second committee – which tends to dilute everything & slows things down. Frustrating, especially for someone like me – used to a fast-moving commercial environment, & (let’s be honest) not blessed with patience.

And when it comes to comms projects, I can’t keep my ‘Lived Experience’ hat on straight. The writer in me takes over. I start obsessing over words – to the point that I’ve had to bow out of meetings. 

And the timesheets. After every meeting on some projects. Really? 

The Perks

That said, the pros far outweigh the cons – no question. It’s remote, ad hoc & flexible – easy to fit around work. And if (like me) you’ve got the capacity, there’s plenty of opportunity to take on more, to follow your curiosity, develop your skills & grow. 

Best of all? The people. The LEAP’s made up of 12 complex, inspiring, authentic & courageous humans – each one of us forged out of fire. 

The Big Thing Is

Here - you don’t need to apologise for your BPD (Complex Emotions). You can lead with it. Own it. That in itself is revolutionary.

Here - no one bats an eye if you show up in full pyjamas, or spend half the meeting on mute sobbing, have a nap, lose your rag, or sit stroking a cat & vaping in a Bond- villain chair (sadly that one’s not me!). 

Here - the depth, insight & empathy that comes from a lifetime of Complex Emotions (50+ years in my case) are seen as assets. 

Here - just turning up – vulnerable & expressive – shapes meaningful research that will help save lives. Literally. 

And the wildest part? This is a niche. Being your unfiltered, messy self is the job & it’s useful. 

Who knew?