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

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  • Hayley Crawley

    Please read my story at http://www.cure4hayley.com and tell me if I qualify. I am fighting for life and against the system, yet I still find the time to care for others, as I did in my 28 years of nursing. Cancer patients are being denied the best that medical science has to offer, without any meaningful debate. Crowdfunding is my only hope. Shameful! Why are people not outraged! NHS rejection letters don’t even use my name. I am referred to as “this patient”. My name is Hayley, I was a nurse, I am a stage IV colorectal patient let down by the system, I am a leader. Above all, I am a mum and I will fight to see my wonderful son Callum become a man. To life!

  • e-Patient Dave deBronkart

    Well, this is a brilliant and needed pot-stir. Thank you; you summarise the many different aspects of this complex socio-cultural problem.

    My only disagreement – or perhaps expansion – is that I envision a world where patient/consumer/beneficiary/constituents are actively engaged in the process WITHOUT having a life-changing illness. I know first-hand that such an episode grabs the attention, but what if we incorporated the family’s voice in the system before we get there?

    In my case as an activist / advocate, I experienced no harm at all while being saved from Stage VI kidney cancer ten years ago. Certainly my near-death was a life-changing experience, but as I’ve since learned about the many ways healthcare falls short of its potential, I’ve concluded that one fundamental gap is the assumption that healthcare is something that needs to be done TO us, when it might be quite different if it was done WITH us.

    I want us to start learning from other disciplines, for instance from Arnstein’s Ladder of Citizen Participation, described informally in this five minute mini-speech. dave.pt/empoweredengaged

    In short, the person WITH the problem ought to be actively involved in not just alerting and fixing problems; s/he should be actively involved in creating the system that serves the problem.

    In that video, note that citizen participation is preceded by a functional definition of empowerment, because to be effective in a such a role, a patient voice must gain the capacity to take effective action. I mention this because so often I hear policy people and hospital administrators talk about how the patients they know aren’t able. The remedy to that is to ENable them.

  • Thank you for this thoughtful blog post – and thanks to the BMJ for this platform. My favorite point: “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.” This poetically states the fundamental problem: those with power want to preserve it. Dave is right that we must learn from other disciplines. We are not the first powerless group of citizens to be forced to demand our rights. Women and black people did not even have citizenship itself about a hundred years ago in the U.S.

    And patient leaders are a diverse group. So it’s challenging to describe us. There are likely some universal qualities and goals, but we have different circumstances, personalities, and methods. I felt bits of your description of patient leaders did not apply to me. I wonder if there are others like me since we are so diverse.

    Instead of feeling a “need to belong,” I have felt most of the time like I am doing the solitary work of blazing a trail. It seems like I’m advocating change and peaceably resisting the status quo, as some of my American heroes did – like Susan B. Anthony and Rosa Parks. The work is often daunting and lonely, but of course we do “belong” to our fellow advocates, and gain strength from them.

    What about this notion of “training patient leaders”? Who trains them / us? If the NHS or a health system itself is in charge of training, then what do patient leaders learn? I have learned from mentors, like Dave deBronkart, and from working in the trenches answering tens of thousands of patient questions. Most of what I have learned goes contrary to the medical establishment. This is the whole reason I work as a patient leader – to challenge the unacceptable status quo. Politely, and with reason.

    I am a very nice person, but I realize the establishment sometimes considers me a fly in the ointment. You say we must “display kindness, humility” and be able to “listen properly,” and I do; but I worry that this is a little like telling women a hundred years ago to know their place and properly represent their gender. What authority is telling the establishment to speak with humility to us? Respect must go both directions.

    This week, while a woman cut my hair, she told me the story of her rare deadly cancer and how her doctors only offered her pain medicine so she could go home and die. Unsatisfied with that suggestion, her sister looked for help online. She found the Life Raft Group who led her to a helpful physician, and she is now several years post-cancer. It’s a story I’ve heard many times, as we used to say “same story one more verse, a little bit louder and a little bit worse.” Life Raft was formed by patients and caregivers who felt they could save lives by linking arms – like many other patient advocacy organizations.

    Like you said, we should not accept less than what feminists or other groups would. It’s a long-term struggle to improve the system. But in the meantime, I think most patient leaders are gratified that they have helped many individual people along the way.

  • Sara Riggare

    Thank you David for your honest writing! I completely agree that there is a desperate need for more outspoken patient leaders, the system won’t change on it’s own, that much is clear.

  • Tamas Bereczky

    Patient involvement and conscious empowerment through knowledge have a very strong and vigorous tradition in the HIV/AIDS field where I come from and where I have been working as a peer helper for many years. In the European AIDS Treatment Group we don’t use the term “patient leader” but we prefer “patient expert” or “expert patient”. Some argue that there is a difference between the two, but this is not what I want to discuss here. It is much more the notion of learning and knowledge that matter here. We believe that the best way for patients to overcome the power imbalance that permeated health care systems is by learning and knowing, supporting open science, and participating in citizen science (or community based research as we tend to call it). And, we find, leadership comes then naturally. Of course, not all patients will become experts, and they shouldn’t. The bottom line is that you acquire the language of science and knowledge (hence power) and then consistently represent the patient community’s interests – which include solidarity, fight for better access and a more supportive environment in health care that is conducive to healing and the preservation of health. The nascent patient activism movement across Europe is mainly led by these principles, and this is also why patient education and patient academies are increasingly important and recognised. It’s just knowledge: If you could learn it, I can learn it, too. 🙂

  • Michael Gill

    I think that patient leadership and patient centricity are two different things. When I hear about patient leaders/helpers/supporters working within the structures of the current institution such as a hospital I wonder if these people are really about change at all. Think of ’embedded journalists’ in military units. So are patient leaders about banging on the door from the outside or screaming quietly from the inside? I have argued that the current siloed and episodic design of the current system for the treatment of chronic disease people does not work well enough. Yelling from the inside is, I suspect, not a very effective change approach. To be patient centric really goes to the key issue of who owned the data/health record and has the patient got the right to demand. A few short comments!