“When you need us, we’re ready… but if you’re ready, we need you too”

Towards a new mantra — and a set of practical tools — for healthcare charities

At the New Citizenship Project, we believe the most fundamental human need is to have agency in the things that matter to you. That’s why our work is all about involving people in shaping those things, finding ways to create meaningful, joyful agency for more people, more often, in more aspects of their lives. Now we’re looking for health charities to partner with us in a new project that takes that approach to where — for me as one of NCP’s co-founders — it all began.

In early 2011, I contracted an extremely rare and painful sight threatening eye infection. The next five years would be a journey through often intense pain, drug regimes, experimental treatments, at times feeling like I had lost myself completely. Almost as bad as the physical pain was the loss of control and agency; the feeling of being a passive recipient of others’ decisions about what was best for me and my health. The best times, and on occasions the only way I could find my way through, were when I created something, or was given opportunities to contribute. Ultimately, I may have lost the sight in one eye, but in a different way I have come to see the world so much more clearly.

Reclaiming my agency was critical to my recovery, not something that happened after I recovered. It was about drawing on who I am, and what I can do, not just to shape my own experience of my condition, but also that of my fellow patients, the hospital where I was treated, and increasingly now the healthcare system as a whole. I helped bring together clinicians and my fellow patients to co-produce patient information for our condition, information that genuinely answered the questions we were holding. I got involved in eye-care research, eventually becoming a co-investigator and then lead author of published papers on my condition. I used my creative background to campaign for a “no water” warning on contact lens packaging to help prevent others suffering what I had. And I fundraised, gave talks about my story, went on the tv and radio to help raise awareness. And as I was starting to do these things, and one thing led to the next, I reconnected with Jon and recognised what I was doing in the ideas he was developing. Together we founded the New Citizenship Project and started to take these ideas and approaches into every aspect of society — but healthcare is where it all began.

A new mindset, a new mantra

Now we’re launching a new Collaborative Innovation project, a way of working which allows us to work collectively with lots of organisations at the same time, rather than consulting one on one. We’re bringing together a group of health charities from across a wide range of conditions to explore how they draw on the latent resource of ideas and energy that is represented by the people affected — and by working with them, to do even more to make the lives of those people better.

That’s not to say this doesn’t happen at all today. Indeed, at least when it comes to governance of these organisations, the mantra of “nothing about us without us” is now well observed. Rare, now, is the health charity which does not have the voices of those living with the condition in question on its board. And there’s more — health charities are increasingly seeking actively to employ people with lived experience, and engage them as volunteers.

But there is a gravitational pull deep in the mindset of these organisations which is understandable, but damaging. It stems from the simple fact that people living with health conditions often need support. That’s just a fact, and it is vital that health charities say “when you need us, we’re ready.”

The problem is that this need to be helped comes to define those living with health conditions. We become people who have stuff done FOR us — seen as “service users” or “beneficiaries” — and at worst TO us. It happens for entirely understandable reasons, but the risk is this: when health conditions diminish our agency, too often the organisations that are there to give help get stuck in a kind of hero complex, and become complicit in diminishing it even further.

That’s why this Collaborative Innovation project will start with a new mantra, one that goes a step further than “nothing about us without us,” and adds something on to “when you need us, we’re ready.” We’re going to work with health charities to help them say:

“When you need us, we’re ready… but if you’re ready, we need you too”

Three barriers, three opportunities

We’ve heard three main barriers come up in the work we’ve done to date in this sector. We’re planning to reframe these as opportunities and creative questions, taking them as starting points to generate a set of tools that will help the charities involved in the project, but also others.

Barrier 1: “Our mission is just so big — people just can’t take it on at that scale”

Health charities can often feel like the work they’re trying to do in addressing the whole context of a given condition is so big that individuals affected can’t possibly get a hold on it, especially with the day-to-day pressures those people are living with. But we believe that can be a creative challenge, one that can be harnessed to help people develop a bigger sense of themselves in which they can find confidence and power. Our starting question here will be:

How can we make our mission feel like something everyone can contribute to?

Barrier 2: “People need our support right now — it’s difficult to expect more from them”

Especially when it comes to conditions that are life-changing, or life-limiting, “expecting more” definitely isn’t right. It’s also true that not every participation opportunity will be right for every organisation. But a sneaking hero complex can hide in this kind of statement. The challenge is to create opportunities that are right for the condition in question, the people in question, and to leave the door open, not try to force people through it. Our starting question here will be:

How can we create participation opportunities that are right for people’s lives and situations?

Barrier 3: “People don’t want to get involved — look how few are participating in the ways that are available already”

As above, there are some really substantive participation opportunities available already in many health charities, particularly in governance and in-depth involvement and co-production work. Sometimes these can be hard to make happen, because they require a lot of people and a significant time commitment. This difficulty can make charities feel like there’s little point investing effort in more, or conclude that making the existing opportunities as easy and convenient as possible is the key. Our starting point is a little different, but this is going to be a central challenge of the work. We’ll ask:

How can we broaden the ways people can shape our organisation and contribute to our mission?

UPDATE

We’ve shared a further update on this work (Aug 2023) sharing some learnings from conversations so far, with a renewed call for contributions. Click here to read and get in touch if you’d like to find out more.