Act as if what you do makes a difference. It does.William James, Psychologist (1842 – 1910)
Two things seem to distress patient activists most. Firstly, the resistance to change is frustrating and is redolent of previous experience, sometimes of harm. This can be re-traumatising. How to work authentically for change, utilising one’s passion, wisdom and insight from ‘lived experience’ and bring oneself wholly to the work, without becoming unwell is a huge challenge.
The second thing is more subtle I think. Many activists seem oddly expectant that things should change due to their own efforts. And become frustrated due to not witnessing immediate impact. This is mildly ego-centric, and under-estimates the sustained power of professional and institutional paternalism. We should hope, but not expect - hold the dream lightly so not become embittered.
This article deals with the second problem.
Activists must recognise that ‘Simple Isn’t Easy – it took us months to resolve the lack of chairs with arms in waiting rooms in our musculoskeletal service. Once patients who had mobility problems said that they needed arms to get in and out of chairs, I tried to fix it. But nobody had immediate operational responsibility as we hired out the clinics from the local Trust and had already spent refurbishment money. I was about to go to Ikea and buy them out of my own pocket, when we wangled the money from a middle manager’s budget.
It wasn’t that those in power didn’t care. That’s lazy and convenient to infer, keeps us within our own biases and maintains the familiar ‘us and them’ binary thinking that many want to overcome.
Staff were unaware until there were opportunities for people to have a say (and a patient director in post, who gave those voices a bit more clout), but the systems weren’t in place to rectify things. In fact, staff became as frustrated as patients – the issue became known as ‘ChairGate’.
We must also recognise that power is diffuse – activists sometimes seem to live in a bygone era where they imagine one person can change things with a flick of a switch. It’s seldom the case. This is one reason why it is tricky for a staff member to admit they don’t always have the influence to change stuff. Sometimes they’re struggling too.
One clinical leader admitted to a patient partner ‘you think I have power? Blimey. I’m as frustrated by what’s happening as you are… but it’s making me feel vulnerable when I say that and am so honest with you, ‘cos I think you’re going to go out there and whip up hate, rather than be able to help’. It was only after long and hard discussions that a joint plan was developed and the patient partner finally admitted ‘well, it was hard hearing that, made me more angry that the system is such crap. But thank you for your honesty. Let’s try and work this out together’.
Change is gradual. You just never know whether, when, how or where your efforts make a difference. You are but one stone making ripples. On leaving my role as Patient Director, one staff member who I’d never met said she’d changed how she dealt with patients because of our work on patient leadership: ‘I think more about what happens before and after I see them – why they might be late, or even not turn up. Maybe something’s going on in their life I have no idea about, and I try to find out’.
It’s taboo to say so, but it’s also a bit ego-centric to imagine we can change things on our own, to decry the system because our own efforts don’t seem to be making an impact. I’ve been guilty of this thinking. Maybe we should change how we do things, and/or adjust our own expectations.
If, as activists, we can ‘shoot for the stars and be happy with the moon’, recognise that we are but one small stone thrown into a large pond, then this might at least help with one aspect of our frustrations.
If we can acknowledge that change can take a long time, then that shouldn’t dampen our efforts but reinvigorate them. Rome – and healthcare – wasn’t (re)built in a day, or a decade. The answer is not to flop around in self-pity, take out our anger on the cat (or the chief exec) or give up. It’s the reverse. Roll up our sleeves.