I can't stand up for falling down

by David Gilbert

June 25, 2020

The silent senseless fury – the why without an answer that is true – is the worm that turns in the heart.

‘We loved your ideas, thanks so much, I got a lot out of the conversations, but we are going to decline your kind offer’

‘Thank you for spending the time with us helping with our ideas, but at this time, there is no budget after all’

‘I am sorry, we can’t afford to pay you, but we appreciate your work so much. We will take the work in-house’

Three different responses from three different organisations in the NHS – all agencies with shed-loads of money somewhere tucked behind a professionally controlled budget. All professing to ‘put the patient at the heart of care’. Insidious articulation of an ill-conceived vision. Baseless rhetoric. 

Of course it is partly about the money, because money is a key currency with which to bestow value. But it is also about the ruthless unconscious predation of our souls – the brains and hearts of patients, service users, carers and citizens who want to give back – who, because the NHS is seen as of public value, are willing to bestow ideas upon the NHS. Now more than ever…

I am split. I work for an organisation half my time that tries to model collaborative leadership and was the first in the world to recruit a patient director. Then, in the rest of my week I see the NHS systematically unable even to see its own blindness.

I wrote an article on Michael Seres last week for the BMJ who said ‘we have to be three times as good Patient leaders have to deal with their own conditions, they have to be extra good to break into and change the system and they have to be as good a leader as those who are in the system – we need to be three times as good as those who have been brought up culturally entitled to a leadership position. We have to be three times as good to be treated as an equal.’

And everyone said ‘wow, what a man, what a thing to say, oh how true’ bla bla. But people in the NHS, particularly those in power, blind to their privilege - do not understand that degree of emotional labour. And they will not put their money where their mouth is until they do.

I believe increasingly that it is our job – that of ‘patient leaders’ or whatever you want to call those who have been through stuff, who know stuff who want to change stuff - to infiltrate the citadels of power and bring down current power structures. As well as to create alternative villages and towns – ‘user-led’ agencies – outside the walls that become the new citadels.

The NHS, its professional, political, national and local leaders will not do this for us – we can’t any more seek permission. We can do all the ‘relational’ training we like, but unless we see the raw bloody-toothed power for what it is, hiding behind the oil paintings of ermine-gowned Royal College portraits, we too are asleep.

We continue to believe that system leaders have the best of our interests at heart. If they truly did, we would be welcome in the corridors of power. If they did, the hundreds of millions spent on leadership programmes would be shared. If they did, there would have been a national network of patient leaders ten years ago. If they did, patient directors would be the norm. If they did, the public interest would be represented at the heart of the Covid response and beyond.

If they did, those of us who had pursued relentless avenues to become established would not be dying or relapsed along the way. My friends might be alive – both those who killed themselves under psychiatric care and those patient leaders who have died or become seriously ill along the patient leadership route. If they did, those conversations I had would have converted into real work easily and simply – I would not have been fighting for and losing out on crumbs from the tables of the elite.  

I am also wondering whether those who have been tagged as ‘representatives’ in the system and many so-called patient organisations and worthy charities are actually colluding with the status quo and whether they should collectively boycott institutional mechanisms. And start talking about true power. To take their lead from BLM, feminism and activism.

I have come to believe that the NHS is institutionally discriminatory against patients. So it is also time for somebody to pick up the legal cudgels. But not me. I am yet again feeling defeated. Thin skinned from the amount of knocks I have had in this thirty year career. As Elvis Costello sang “I can’t stand up for falling down”.

Words seem my only weapon these days. Fat good it seems to do. But at least they can’t silence me as those three organisations who promised the world have effectively done. Over to you my friends.

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2 comments on “I can't stand up for falling down”

  1. Wise words indeed. As a service user who goes round in ever decreasing circles I wonder at the waste of money. I'm seen by professionals who never see me as a person, just a patient. They never look at the whole picture and offer me all sorts of things that I can never do. Then, when I've been round the block, it all starts again at the same place.

  2. I could not agree more! Having moved from Exec Leadership roles to promote, design and fight for safer care, I’ve seen directly how resistant the power structures in healthcare are. Lots of talk about sharing knowledge, resources and ‘changing the way we do things’ to address avoidable harm. Lots of talk, less doing. The patient and citizen voice has to be at the heart of that change!

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