My colleagues
Can rage be a gift? I tumbled into the PPI world eleven years ago when I found myself appointed deputy lead of the PPI theme at the Collaboration for Applied Health Research and Care (CLAHRC) South London, having to both embed and research PPI practice in research – a thing I understood little about at the time. And embed and research I did, for five years, or at least I tried to. In an article I co-authored, we made a sombre diagnosis. PPI, we declared, is a limpet on a ship: not integral to research but rather “constitutively out of sync and out of place”. We ended that article by calling for “ways of breaking apart and remaking the [ship’s] hull”.
Meanwhile, by the time that article was published, I had already seen how you, my colleagues, whose roles I had not known much about and whose dedication I was initially somewhat sceptical of, had been busy for years, tearing small holes in the hull and then attentively and patiently reforging the steel around them. So, I determined to dedicate my work to all of you, because of what you had shown me about care and because I had come to care for you as workers immersed in this labour, in institutions, universities in particular, which are more concerned with metrics than care. I wanted to understand what care for what we do and for who we do it with or for, can achieve in such reputation shielding, cost-efficiency proclaiming, performance indicator ridden institutions. Is this care an aberration, a small act of resistance, evidence that something might be slowly shifting? Or does it, in fact, simply serve to perpetuate institutional norms? What does this form of care enable and what does it foreclose?
So, I approached (some of) you, interviewed you and listened to the diaries you generously made for me. And you spoke of a labour of love, by which you meant a persistence, despite everything, in the often gruelling and seemingly impossible task of trying to build and sustain connections and trust between such uncaring institutions and those the institutions have historically excluded and often continue to exclude. You spoke of mediating, training, modelling trust, getting it wrong, carefully crafting personalised emails to public contributors well into the night and into weekends and into leave days, orchestrating meetings, events, celebrations to ensure that academics and lay people do not talk past each other, getting it wrong again, trying to hold the pain and terror of others without disclosing your own, fearing that you are redoubling that pain, redoubling that pain, feeling unsupported and alone, your time often salami-sliced into a hundred tiny grant fractions, talking of humanising the institution while being expected to be fluent in corporate speak, in metrics and performance indicators.
And often, through and between words, anxieties would surface: I am doing what I can, I am proud of what we have achieved despite everything, but am I simply serving corporate agendas? Also, how can PPI thrive when universities and health services are being throttled? When funding for research is being cut to the bone and redirected where it is politically expedient? When wealth and social inequalities, racism, government enabled transphobia are soaring, when government policies can result in thousands of deaths, when fascism is at the door?
A few years ago, I sat with one of you, one of the most generous and committed PPI leads I have known (call her Evelyn), taking stock at the end of a cycle of events she had been leading. And I was about to tell Evelyn how grateful I was for the way she had shown me – and so many others – what this work can achieve and why it matters. But then Evelyn turned around and told me how she and her team had been unceremoniously dumped by the institution with little warning. She then added: you have told me much about rage. I am experiencing this rage now.
As my own contract expired, I, like Evelyn and like many of you, my colleagues, also felt I had been unceremoniously dumped. And it is not the being dumped itself that is enraging: it is that persistent corporate din through which the dumping is served. The institutional pieties and endlessly churned value statements affirming the importance of coproduction, of inclusion, of relationships, of community, of people-at the-centre-of-everything-we-do, which continue to fill our ears, just as the government abolishes patient experience organisations, funders quietly terminate PPI-dedicated contracts and UK universities announce wave after wave of redundancies. And as our backsides smart from that kick.
And as the world burns. (But it is unprofessional to keep talking about the world burning. You cannot festoon a burning world with lanyards. It does not make for a ‘good news’ story.)
My colleagues in PPI, you have taught me so much about care. Now, more than ever, it is time for rage. And yes, I believe that rage can be a gift. Because it gifts us clarity: it keeps us alive to who it is that the corporate din hurts, to how it undoes us all and how it destroys the work we most value. Trust your rage. Rage is not ‘having a moan’: it is not selfish and it is not petty. You rage not only about yourselves but also about those people and those principles you love. About a world we may be on the cusp of losing.
Rage can be an act of care, of love even. I know that Evelyn did turn that rage into a different way of enabling care. But to give rage more of a chance, we also need to raise it through collective action. Because collective rage is more likely to lead into collective forms of care and less likely to be eaten up by institutions eager to brandish so called ‘value statements’ while they dump us all. They are less likely to leave us, and those we most care for, bereft and adrift. Be guided by this. As I have been guided by you.
I thank you all
Stan Papoulias
2.4.2026