David Gilbert: Why we need patient leaders

There’s not much point in training patient leaders unless there are meaningful opportunities for them in decision-making roles

david_gilbertThe NHS loves to unleash (sic) its buzz words, euphemisms, and catchy soundbites. I’m not sure which is more depressing. Watching their footprints (sic) come. Or go.

But the phrase “patient leader” seems to be sticking. What does it mean?

To be honest, when it came into my head a few years back, I laughed—put two contested terms together. Light fuse. Stand well back and watch the fun. Patient leader—marmite. Love it? Hate it? At least we are talking still about it. I have seen people slip back into their chairs at its mention, others puffed with a new found pride at finding a stronger status—”yes, that’s me.”

It was also the culmination of other questions I had: what do we call idiots like me who, instead of just wanting to heal in peace, return to the NHS in a different guise? The troublemakers, the grateful. Those who bring back jewels of wisdom from caves of suffering and want to help or heal the system.

A growing and growling gang. We need to belong, find our individual and collective identity, support each other to be effective change-makers (or healthmakers, as Karen Maskell has so beautifully put it), whinge and gossip over cake. Heal together. Was there a name for our tribe? So rich, so diverse yet driven by common cause.

I don’t like the traditional connotation of the word “patient.” But by linking it to the term “leader,” it turns heads and meaning on its head—a reclamation, a bit like the gay movement reclaiming “queer.”

Meanwhile, I watch the failure of the engagement industry—reliant on child-parent feedback mechanisms and adolescent-parent institutional arrangements that pit representatives against professionals (or co-opt them) in tedious sub-sub-committees. And yields… not much to be honest.

Everywhere I look, power is neutralised and buffered. We are patted on the head, told to play with broken toys rather than join in with the big boys. The passion and wisdom gained through suffering and resilience is not valued. This is a caricature, but I believe it largely represents recent reality.

And now the questions—How can a patient be a leader? Who do they “represent?” How do you get to be one? Who decides? Isn’t “people” a better term? And many more. They are good questions. But we don’t have agency in the system or collective “comms strategy” to articulate what we mean. We lack the power and rely on guerrilla techniques such as blogs! And these questions are also symptoms of institutional elites feeling threatened and wanting to undermine the inevitable shifts in power (in my opinion).

What is a Patient Leader?

For me, a patient leader is “someone who is affected by life-changing illness, injury, or disability who influences change through working in partnership.” The shorthand: “people who’ve been through stuff, who want to change stuff.” Thus for me:

  1. Patient= (a) someone who has been affected by a life-changing illness, injury or disability (or long-term condition, LTC) PLUS (b) someone who is, or has used, healthcare services regularly. I wish we had a different term—one that stressed both these aspects in a strong way. Call us user/consumer/client etc and it still emphasises “use” of services. Call us citizens/lay people and that ignores what we have been through. I wish there was a colour for us—the ecologists got lucky with green. We are, of course, people and human beings. But we also bring a different angle to a citizen tax-payer who does not know what it is like to be years in the caves of suffering. And yes, my definition includes “carers” (i.e. those “affected” by).
  2. Leader= for me, a leader is someone who manifests what it means to be a true leader in their way of being and doing. I lean on models of collaborative leadership highlighted in all good leadership programmes for clinicians and managers—this includes someone who has a vision, leads change, inspires others, etc etc. In other words, it’s the “ship” in leadership that steers the way (pun intended).

This thinking has been helped by many people over my years in patient and public engagement, including Jocelyn Cornwell, Harry Cayton, Mark Doughty (who co-founded the Centre for Patient Leadership) and Steve Laitner. And of course, the gang.

True “patient leaders” display kindness, humility, are able to listen properly and work together. And they are often very strategic. Many with health conditions can do that, precisely because they value it so much when it comes to how they are cared for and supported. And they can see clearly what is right and wrong in the system.

But take a good look at yourself—can you truly work in partnership? Do you want to? Can you work with your own anger, and not be led into provoking it and maintaining the binary us and them? Can you bring your difference—be the grit in the oyster—and also assert a common thread of humanity? Are you part of the solution? Do you want to be, even when it is really really hard… ?

What about roles?

I have always been interested in power and justice. There’s not much point in training patient leaders unless there are meaningful opportunities for them in decision-making roles, rather than “being involved” in a project or committee. Unless we have “Patient Directors” “patient CEOs” etc, then we can’t change the way the NHS works. I doubt feminists would accept being focus group fodder within a service aiming to be “women-centred.”

There are so many ways to be a “patient leader.” You can be an entrepreneur like Michael Seres, Denise Stephens, or David Festenstein. You can be a community development activist or digital specialist like Roz Davies. You can work at national and/or local level as an improvement specialist, like Ceinwen Giles, Alison Cameron or Sibylle Erdman. You can help train and educate, or be into self-management implementation, like Anya de Iongh or Lynne Craven. Or become Patient Editors (like the late great Rosamund Snow). Or any combo of the previous.

Can a clinician, administrator or manager be a “patient leader”? Maybe it depends what hat you are wearing at any particular time. As long as we recognise that we need both “outsiders” and “insiders” in the room when making decisions. What I will say is that, in my experience, when you are “inside”, there is a risk you can become narrow in your views—this is happening to me, sometimes realising that I can focus more on what is possible for the system to deliver than “what matters.” Or what I think is possible. Maybe because that is more comfortable.

Thus, in my current organisation, my role as patient director is more about creating opportunities for other patient leaders to congregate and meet with staff, than for me to be a “patient leader”. Or maybe that’s a role for any “patient leader”—bring in others. And that’s one aim of this blog.

And if you still don’t like the phrase, don’t use it. No-one is forcing it on anyone else. More importantly, we are not going away, whatever we are called.

David Gilbert is a mental health service user, Director of InHealth Associates that provides advice and support for patient and public engagement. He is also Patient Director at Sussex MSK Partnership (Central). The views in this article are his own. He blogs at http://www.futurepatientblog.com and is on Twitter @DavidGilbert43