Systems: A User Perspective

A short reflection on the relevance of cancer to systems thinking

Since I was diagnosed with cancer 9 weeks ago I’ve thought a lot about what my experience can teach me about complexity and systems. Not every day. Some days I’ve curled up into a small ball, and wished cancer – and the diabetes that it caused, and the chemo that accompanies it, and the existential questions about life, death and the pursuit of happiness – would all just go away. But I was a systems thinker before I was a cancer patient. I see connections everywhere. I work with people trying to develop systems leadership approaches, explore systems thinking and gather evidence about how it is to work in uncertain, complex and volatile contexts.

Much of what I’m going through has relevance for systems work.

#1: Complex Identities

Taking up a systems leadership role isn’t a binary choice. Leaders – clinicians, managers, board members, convenors, Band 8’s, administrators, politicians – don’t get to choose to be either/or. Systems leader is an identity that has to be held alongside all the other identities we assume in our lives. Therein lies at least part of the rub. Some of those identities conflict. Some carry more ‘weight’ than others. Some have a voice in the system and others plainly are ignored. Everyone in the health and care system has a wealth of data but it isn’t always obvious how the data join up. Only by finding ways to bring together all the information we have – the identities, the stories and the numbers – can we get a true shared picture of what is going on.

So too as a cancer patient. I am still all the people I was three months ago, but I have an additional badge that conveys meaning to other people in the system and, at times, negates or trumps previous identities. Assumptions are made about me as a patient – that I will give up work (I won’t), that other pressures on my time are flexible at best, irrelevant at worst (actually, time has become even more precious to me since my diagnosis and I find myself resenting long hours spent in waiting rooms even as I empathise with the over-stretched NHS staff who are treating me), that other people know my body better than I do. Bits of it, yes, they do.

But humans are complex. Reducing me to one identity and even specialist sub-identities for appointments – I see the oncologist separately from the surgeon, and quite independently of the diabetic specialist nurse, the Macmillan nurse, my GP and the radiologist – may be organisationally efficient. But it means the connections between may be missed. Not everyone attends the MDT meeting. Props to the OOH GP who wrote me a “prescription” for two books on diet and the microbiome – in one short meeting joining the dots between steroid-induced diabetes, the chemo-induced nausea, and my need to feel empowered to do something for myself to get better.

#2: Mapping the System

In the complex health and care system we know that no individual can have sight or knowledge of the whole system. We teach the importance of setting boundaries, of simple rules, and of collaborating with multiple, and competing, perspectives. We use mapping as a technique to enable conversations about connections – who is in this system? Who has influence? Who’s invisible?

One example of the impact of mapping as a tool is the training of beauty therapists to encourage women to go for smear tests (see more here https://www.independent.co.uk/life-style/women/smear-test-cervical-cancer-screening-beauty-salons-women-wax-treatwell-public-health-england-campaign-a8885396.html). In original discussions about what to do with regards the low take-up of screening appointments amongst young women, beauty therapists weren’t in the conversation.

If I were to map the system around me as a patient there would be a great many people who are, like the beauticians, not in the health and care system. But they’re crucial to my treatment, and my recovery. My hairdresser and wig fitter is one; the pharmacist who checks I’ve got my meds, the women on the WhatsApp chemo group who share tips on food to eat when everything tastes like sewage, and how to avoid nails falling out, the YouTube exercise guru, and the wild swimming group; colleagues who keep me connected to and supplied with work; friends who check in every few days, and then the experts in diet, fitness, and the ones who keep me mentally strong. And family, who are going through their own changes in relationship to me and cancer.

As a patient, the system boundaries have been drawn squarely around my illness and treatment. It’s left to me to explore the networks and connections in the wider system who can help, and I’m lucky. I have internet access readily, I’m used to navigating complexity, I work mostly for myself, I don’t have dependents and I’m in a home I own. What if my system also included the school, my landlord, the benefits adviser, my employer? How can we help develop system-sightedness, when the way things are organised requires people to be specialists in their own bit of a very complex, multi-layered system?

#3: Leading Through Uncertainty

Nobody offers certainty to cancer patients. We work on probabilities. We can cope with a great deal of ambiguity, in fact we’re experts in it. Because the plain truth is nobody knows know how long we have, whether we’re Stage 1 or Stage 4. I would automatically distrust anyone who told me they did know. There are no guarantees the treatment will work: my WhatsApp group is currently debating the risks and benefits of the various chemotherapy regimes we’re on and working out which side effects are manageable and which just make life intolerable. There’s a diagnostic test (OncoDx) which can help you assess whether chemotherapy is worth contemplating at all, and there are new treatment regimes being researched all the time. And, even though the odds are stacked in their favour, some people die.

Despite all the uncertainty, we get on with living.

This ought also to be true for system leaders. We frequently talk about the challenges of leading through uncertainty for leaders in the health and care system. But it’s a fallacy that the system was ever anything but uncertain, unpredictable. Covid-19 sent a very clear message that the crucial requirements for good health leaders were adaptability, courage, and the ability to collaborate. Not, knowing the right answers, leading from the front and unwavering commitment to a course of action. And yet somehow we still hear the calls for ‘strong leadership’. Meaning, leaders who can get things done, offer certainty to their staff, tell us where we’re going.

We need leaders who listen. Who are unafraid to change their minds. Who can encourage, and motivate their staff even while acknowledging that they’re sometimes making it up as they go along. Who genuinely want to collaborate, who know how to connect, and who take the time to understand the complexity of the people and the system they lead.

As a patient that’s what I want from the people around me too.

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