As luck would have it, I’ve been reading Annemarie Mol’s ‘The Logic of Care’. Just in time for the response to my NHS complaint about the events leading up to LB’s admittance to the unit to plink through the letter box.
These events are recounted on this blog in some detail but can be summarised as, er, a complete lack of care. Mol argues that the current emphasis in health (and social care) on choice is inadequate. This, too, is timely. Choice schmoice if you ask me. She’s concerned that an emphasis on choice leads to things becoming fixed and constrained; the circumstances in which we make our choices, the alternatives we choose from and so on. And choice is tied to individual responsibility. Instead we should pay attention to the actions of care. We should be doing things. Collective practices and attempts to make life more liveable.
Well I’m liking Mol’s interpretation largely. So, what about the response to our complaint? It has been investigated. Key people have been interviewed. The initial findings were further challenged and we have a detailed and considered letter. I don’t want to go into the details of this here as there are some outstanding issues, but I do want to draw attention to a phrase that is explicit and implicit throughout the letter; ‘the clinical care and support was satisfactory and of the standard of care that would be expected from the service’.
Now in Mol’s research, when people complained about their healthcare, they were not stories relating to a lack of choice, but experiences of neglect, of feeling abandoned. That nobody cared. Our experience of the period leading up to LB’s admittance to the unit was that health and social care didn’t care. The two professionals I howled down the phone to that Friday afternoon, after LB had punched his teacher in the face, didn’t care. But they weren’t the only non-carers. There was a structural and systemic lack of care across the health and social care board.
But we apparently experienced the ‘standard of care expected from the service’. Whose expected standard of care is the glaring question here? Based on what criteria? What we experienced was nothing that could be remotely daubed as “care”. And, as always, I’m left with my litmus test of wanting to ask the people involved during that period; ‘Can you just, for a moment, imagine if this was your child? Experiencing this level of “care”? What do you think you would feel?’
So, we’re left with a misplaced (or mis-used) choice agenda and a system in which the expected standard of care equals no care. Luckily for us, there was a supporting cast of dazzling carers; family, friends, Charlie’s Angels, head teacher, school nurse, cake-makers, neighbours, twitter buds, colleagues, and random strangers. That’s what care looks like. Collective attempts to make lives more liveable.
“A structural and systemic lack of care across the social care board”; so often what happens and, I’m sure, never what was intended. Seems that we need to inject some empathy into the system. But how? @jan_sutton
I agree but I don’t know how really. Maybe the suggestion of experience-based co-design below?
This sounds like a service in dire need of some experience-based co-design. Here’s my favourite quote from a hospital consultant who took part in our study of EBCD. It shows how the lightbulb goes on, once you get professionals and users together as equal partners really working jointly to redesign care, rather than fobbing people off with ‘expected standard of care’ and ‘I’m sorry to hear you feel that way’ defensive responses. I love how this long list of human attributes comes tumbling out:
‘So I can see that this person is not only a human being, but he is also a father, he is a son, he is a brother, he is a friend, he is a cousin, he’s a plumber or an electrician, he is a sportsman, he has an interest in horse riding, whatever it happens to be. He has a dog, he has a budgie, he has plans, he has expectations, he has regrets, he has feelings.’
I love this quote. And it even has the pets in it 🙂 Brilliant.
ooh so it does, I didn’t even notice the pets!
From “The Careless Society: Community and Its Counterfeits” by John McKnight. Try this: “Care is the consenting commitment of citizens to one another. Care cannot be produced, provided, managed, organised, administered or commodified. Care is the only thing a system cannot produce. Every institutional effort to replace the real thing is a counterfeit.”
Loved your last paragraph and your true “supporting cast of dazzling carers”.
I will look this up. Thank you.
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This “expected standard of care” phrase reminds me of the time after the Chernobyl nuclear disaster that I invited council officials round to test our vegetables in the garden here in north Wales. The officer declared that the tests were all “within expected limits”. They were higher than the levels I’d understood were safe, but the officer was quick to “reassure” me that since Chernobyl the council had reviewed its “safe” levels of radioactivity and basically revised them upwards. Can’t help feeling that the standards of care expected by state agencies and corporate/charity providers are in a frantic race to the bottom.