‘I’m sorry Simon,’ wrote a colleague in a group email in the friendliest of ways, ‘but you are not a patient advocate.’
Well, that was 25 years of my life well-spent then, I said to myself.
I knew what they meant though. That the NIHR badge I wear, my role, goes before any lived experience I may have as a patient or a carer. That the latter – if they exist – are obscured, opaque, a little like seeing someone behind the frosted window in a door. I get that. I accept it.
But it troubles me this tendency to define difference by what our friends and colleagues are not, rather than what they are, the value they can bring. I sense a deep anxiety beneath it which is both understandable and yet vexing.
Another example might be the trend to describe people in disparaging terms as ‘PPI Professionals.’ About those who’ve been around a long time. Or those that get paid. Or newcomers who have a ‘history on the other side’ as someone once described it to me. Since when has wisdom borne out of experience or drawing a salary for doing something you are passionate about been a crime, or asking people to take lie detector test our style?
Let’s not pretend it’s researchers who are saying this about us in their neurosis about representativeness. We are saying and doing this about ourselves. And forgive me for saying this but there is a bit of the kettle calling the pot black going on at times.
We have to find our way through this. Otherwise it’s a sure path to division and ultimately self-destruction. What is an emerging and highly successful movement will become, fragmented, marginalised and ignored.
Once you start to question people’s motivations, where do you stop? The more appropriate maxim we should adhere to is: ‘Never question a person’s motif, question their judgement.’
The beginning of the way through this – whether nationally or on a research project – is to be sure that collectively and individually we are sharing the same values and principles as we approach the work. That’s why INVOLVE’s values and principles work is so important. http://www.invo.org.uk/posttypepublication/public-involvement-in-researchvalues-and-principles-framework/
Dig them out. Reflect on them. Talk about them at your next group meeting. Ask yourselves how you will live by them. I’m going to.
In the meantime I think it’s only right for me to tell you that some of my best friends are PPI professionals.
And I’m not going to apologise for it.
Simon Denegri Sent from my Work iPhone
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