The logic of care

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.

Patient choice? My arse

Ding dong time this afternoon with the Practice Manager (PM) of our GP surgery. They’ve introduced a crackpot system where you can no longer book an appointment with a GP. You have to arrange for a GP to call you back that day to assess your need for an appointment. It’s all in the name of patient centred care and choice.

So I had a 30 minute call with PM  who’d swallowed the health policy rhetoric manual but could not explain why I couldn’t make an appointment without a screening call. The gig was that I could agree to a GP call-back and potentially get an appointment the same day, or I could be allocated a loser slot, out of hours on a Tuesday night or Saturday morning.

In response to the (numerous) concerns I raised, she tried to persuade me that GPs were so flexible in this new system that call-back could be arranged to coincide with tea-breaks for people at work who didn’t want to discuss symptoms in front of colleagues, and that an online option existed so patients could type their concerns quietly. No reflection on how unrealistic or burdensome this was.

Yes, in some contexts of course it’s fab to have the option of managing some health related issues by phone. I howled for that when a GP rigidly insisted on ‘seeing’ LB in the surgery before re-referring him to neurology after he’d spent a night in A&E recovering from a massive seizure. But not a blanket screening system. That’s just crap.

Eventually, she suggested making an out of hours appointment in 2034. I told her I’d just crawl off into a corner and quietly die. She didn’t budge. It was screening call or crappo appointment. That was the system. I said I should probably contact the local paper about it. She booked me an ‘in hours’ appointment in a few days with my GP.

So, this new system is also going to feed into and reinforce health inequalities highlighted by, and remaining/increasing, since the Black Report. Fucking great.

Twitter; what’s the point?

I love Twitter. But lots of people I know, don’t. They don’t get it. They hold onto facebook as a space for sharing stuff with chosen, monitored and policed others. Facebook is more intimate, apparently, and isn’t about stalking Scoph, Stephen Fry or Justin Beiber. Facebook doesn’t restrict status updates to 140 characters. What can you say in 140 characters for fuck’s sake? Well, I’ll come back to that..

I went to a social media talk recently by an expert from York University. He strongly cautioned against our increasing over reliance on social media, saying it would lead to us all creating very narrow social lives, funnelling down, bookmarking our favourite websites and increasingly closing ourselves off to broader social experiences. Facebook can do that. We select certain people that we allow into our circle and can even restrict levels of access to our personal lives. It is static, dated and restrictive.

Twitter smashes things wide open. Even though we choose who we follow, once we follow people, we can’t choose what they retweet to us. So if I was to follow 100 people, and they each followed a hundred people, and so on and so on (I ain’t no mathematician so I’m not even going to attempt to develop this equation/sum), that means I am potentially open to shedloads of information, in bite size pieces.

Yeah, yeah, yeah. I hear you twitter doubters say. What-effer. You can interact via email or facebook. Not as fast or as effectively. Increasingly, Twitter is part of media stories about particular events. Twitfeed is feeding into live tv and news coverage. It’s forcing governments, institutions, people to be more accountable. Through Twitter, a recent petition against proposed NHS reform has got over 170,000 signatures in a few days. Through Twitter a group of disabled people were able to raise funding, research, write up and disseminate their report into the proposed Welfare Reform Bill. Through Twitter (not through the BBC or other media channels) we know that Andrew Lansley’s recent trip to the Royal Free ended up with him being chased by a doc down the corridor to the words “Your bill is rubbish. And you know it!” Through Twitter, people are able to demonstrate and provide evidence of lies, deceit and cheating (largely by the current UK government at the mo’).

What can you tweet in 140 characters? Well, a lot. You’ve just got to be concise, pithy and cut out so much crap that we usually produce/circulate. It’s a liberating experience.

Twitter is what you make it. Depending on who you follow. It can be supportive, political, social, entertaining, funny, informative, creative and always fresh.

Finally, for mates that have shouted ‘help!, I don’t know how to use it’.. here are a few things that I’ve learnt in the last few months (or days;);

  • Use bit ly to shorten web links you want to tweet.
  • Don’t get overly hung up on what you tweet – just have fun
  • At first you are tweeting to yourself, but people will start to follow you
  • Don’t get hung up on numbers…
  • … but if your followers start to unfollow you en masse, you may want to revisit your tweet content 😉
  • #ff means follow Friday and is a way of sharing ‘good’ people to follow

Now, if someone wants to let me know the best way to manage lists, that would be great.