I used to think it was easy to ask questions. Easier at least than providing answers. Now I’m not so sure. Asking truth of power risks further hurt.
When I was 15, I asked my parents whether things were OK. I sensed the vibes. My mum said that I was thinking too much, and of course everything was alright. Six months later my parents divorced.
Perhaps from then on, I’ve questioned the validity of my insights, sometimes getting it horribly wrong. Sometimes horribly right. I’ve always looked to others for advice and got paralysed when the plethora of well-meaning, but subjective views of my situation conflicted.
Lately, I’m asking lots of questions of NHS power – whether a man should lead a specialist women’s trust; about the concentrated policy clout of ‘thinkies’ as one friend calls the think tanks; and of course about why patients – those who have had life-changing illness, injury or disability – have no power in the system.
I find myself particularly irritated these days – and there I was imagining a mild middle age with pipe and slippers. Sad grumpy git. Maybe I’m still not quite balanced after another shitty time of terrible anxiety. Or maybe I am just flexing my professional authority (???).
Maybe the questioning is indicative of me getting older and feeling nothing is changing. I know social movements take an age, but FFS when is another organisation going to pick up the baton of Patient Director role? It’s a no brainer – see my recent blog.
But what gets my goat most is that patients have no part in policy making. I know Simon Stevens means well. But I see little seriousness from him, despite the rhetoric, or from ‘thinkies, from clever social media commentators, or ‘movers and shakers’ that give me confidence in the direction we are travelling in.
This at a time when wonks come on the radio and say ‘the public has to decide’ about the future of the NHS. Well, if you don’t let us in, how can we?
But maybe the tone and framing of my question is wrong – maybe I should phrase it more politely? ‘What will help patients to be more involved in policy making?… Mr Stevens? Please? Hello? Hello?…’ When nobody is listening, when you have no power, what can you do but try to shout a little louder?
The questional hypothesis
I have come up with a hypothesis – that, if you feel powerless, that the closer you are to decision makers the further away you are from asking difficult questions. I call it the ‘questional hypothesis’. You can challenge Trump safely on twitter and feel that you are doing something. But what about challenging the local authority about litter? Or making a complaint to the NHS? Or tackling neighbour’s about the noise. Not easy. Better to keep your head down. Quiet life tablets.
Look at how difficult it is for a women interviewer to ask a tricky question of a middle aged white man in charge of a football club. You get threatened with a slap – of course it’s a joke… or is it? Who dared question Fergie? Or now Mourinho?
Equalising power in the room is the answer of course – taking the time to facilitate trusting relationships means safer environments to ask questions – but you’ve got to be in the same room first. It is hard long work trying to even out power relationships.
But then the opposite danger is apparent – cosiness. You love everyone so much that you won’t challenge at all. This is why powerful and wise organisations prefer to have people ‘pissing from inside the tent, than outside’.
Anita Roddick said she kept the door open for mavericks to challenge her because she knew the dangers of over-cosines and group think.. Meanwhile Elton John realised he was going mad when he wrecked a hotel room that had the wrong coloured flowers. He noticed that not one of his minders raised a finger to stop him.
That’s why we have to ask questions. Always. Forever. Never ever give up.
I am tired
But it is wearying. It’s part of the emotional labour of being a patient leader (or any other disrupter of the status quo). You become the lightning rod for other people’s anxieties about the questions you raise. People – particularly those in power – can pile in and try to bury the questioner as if they hold a view contrary to their own.
I am tired: I am tired of thirty years of saying ‘what about patients’? I am tired of seeing the same arguments come round and listening again and again to my spiel about how to do engagement. I am tired of running focus groups that won’t change anything. I am tired of pointing out that it is the same folks in the NHS and think tanks that dominate public discourse.
I am tired of seeing defenders of the status quo puff themselves up over invitational breakfasts or leave just after their event presentations before the speaker on co-production – yes Ally, that’s for you 🙂
I am tired. What was the question? Can you keep on asking?
If you liked Ines this blog, see more at http://www.futurepatientblog.com
(c) David Gilbert 2017