We are the Disrupters

We are the disrupters!


You know, the thing about being a volunteer activist in healthcare is that it’s sooo frustrating.

There are various mantras around…

Nothing about us without us…

Do it with us not to us…

But we’re always fighting against an imbalance of power. Against a hierarchy where we are at the bottom, if even not in it at all.

We attend meetings where the agenda is set by the organisation, the hierarchy.

We make our points, we challenge, we suggest, we want to “work with” to get change.

And we’re told…

Well that’s not altogether true…

We can’t do that…

Our staff are sick of action plans, we can’t do any more…

Staff are sick of innovation and change projects…

So we are squashed into submission, because of course we don’t have the power.

Most healthcare (and other) organisations are old power hierarchies. They do to people. They hand down directives and projects. Managers are trained to follow project management techniques scientifically.

They communicate with very few people. Just those staff who immediately above it below them in the hierarchy. And they all perpetuate their version of reality.

And they really don’t like people disrupting their hierarchies.


So when I (or another disrupter) come along and challenge them, what happens?

They say you can’t possibly be right because you don’t have the knowledge that we have.

They say they won’t listen to you because you don’t represent anyone but yourself.

They decide that if they ignore you you’ll go away.

And they continue to maintain their closed loop hierarchy, in which they are cocooned away from divergent thinking and creativity.

Because they know best. They hold the old power.

I went to a meeting if a new group for people with lived experience of dementia last week, set up by the organisation to get feedback and suggestions on how they can improve the services they provide.

Quite a bold move, with quite significant commitment of funds for one or two years.

I applaud them. Bold and open…

During the day we split into two groups to discuss the agenda items they had decided for us. One group of family carers and one group of people living with dementia.

First they wanted to know what we thought of their service. But we hadn’t experienced it, because it’s for families where the dementia is advanced. So we said actually we don’t know really what you do.

Then we were given four statements which their execs wanted us to talk about in coming meetings. Which would we prioritise?

That’s where things fell a little apart. Because those statements were based on a consultation premise, not a co-design premise.

We said these are not where we would start. They needed to be re-framed…by us.

We’d rather start with…what matters to us? Not…what matters to you?

And it became very clear that we were disrupting the process.

In fact we rejoiced in calling ourselves the disrupters.


I have found, with real pleasure, that almost all of the people living with dementia who I ever work with are disrupters. We promote and constantly remind…

What matters to us? Don’t did it to us, do it with us.

And we use our networks, which cross all sorts of conventional boundaries, to spread that belief and commitment.

We don’t have much of a hierarchy.

(There is a bit of one, with too few people being asked too frequently to be the person with lived experience. But we’re starting to change that.)

We depend for our energy and continuing activism on our networks of support. Facebook, twitter, blogs…that’s where the new power is growing. The occasional face to face get togethers are the invaluable glue which binds us together and re-energises us when we feel beaten down by the old power.


So we are the disrupters.

Have a look at this slide set from the wonderful Helen Bevan, about disrupters and old v new power.

Click to access improvement-transformation.pdf

And watch this TED talk too.

I’ll end with part of a slide from Helen Bevan’s presentation:

WHO will make the change happen?

• The mavericks and rebels
• The deviants (positive). Who do things differently and succeed
• The contrarians, because they can
• The nonconformists who see things through glasses no one else has
• The hyper-connected. Good or bad, they spread behaviours, role model at a scale, set mountains on fire and multiply anything they get their hands on
• The hyper-trusted. Multiple reasons, doesn’t matter which ones

Source: adapted by Helen Bevan from Leandro Herrera

4 thoughts on “We are the Disrupters

  1. Hello George,

    As a leading community aged care provider in Sydney, Australia, when you write “We’d rather start with…what matters to us? Not…what matters to you?” could you share with us readers one example of “what matters to us?” that you would have liked to have been taken on board.

    This is so that I understand where you coming from. Only if you have time. Thank you, George, Kate Lambert, CEO, Daughterly Care


  2. I guess I’m talking about agenda items for patient group meetings including the latest staff survey results. We actually want to talk about the inpatient survey results, because they are what matters to us.
    Or a health economy dementia steering group not asking us (people living with dementia) what we think is needed for support, rather than just addressing the concerns of providers.
    Or an organisation asking users how we think they might gather evidence to support their service, rather than what do we not do that you would like/need?
    It’s this business of starting from the user rather than the provider. What ask us along if you don’t want to know what matters to us? Like peer group support, or having our own mug for drinks in hospital, or stopping night staff from talking and keeping us awake?


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