Where do we go from here?

When Dr King published Chaos or Community in 1967 he perceived the future – either we come together as a community or we fall apart in chaos.

The past fifty years have seen lots of coming together and falling to pieces.

Community was a theme at this year’s BMJ/IHI conference – specifically in an approach to envisioning the delivery and provision of health and social care within a context of ever mounting pressure.

We can only improve the care of those we welcome in to our community – and this means re-defining community.

Doctors, nurses, therapists, patients, politicians, advocates. All groups aligned in tribal chaos.

It doesn’t matter how beautiful your organisational structure, how seamless the graphics the balance of boxes and lines; take one geometrically perfect structure – hospital – care home – university and mix it up, intertwine me with you – the patient who is a doctor, the doctor who is a carer, the patient who is more expert at their disease than the professor, mix and match – the Woolworths sweet selection and off you go; the system can’t cope.

Who is in charge? Who is responsible? Where is the permission? The rules and regulations; who will govern us!

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One of the speakers at the conference was Tim Omer. He has type one diabetes. He is also a hacker – in the more modern, nuanced sense (cf Girl with Dragon Tattoo), in that he uses his skills to hack technology, translate the functionality of one gadget into something else, something potentially better that results in patient empowerment; the translation of the concepts of patient and disease into something else.

Moving from the pin-prick blood-sugar sampling that most people with diabetes experience, through the insulin pump and transdermal blood sugar monitor to Wi-Fi connectivity to phone then watch; All mixed-up into a device that monitors blood sugar, adjusts the amount of insulin released and informs the user of their glycaemic control.

Simples.

The device Tim showed us was a hack. The users, the patients, the diabetics engaging in what the regulator would perceive as chaos.

Prototypes used on people who have placed themselves and their wellbeing centre-stage.

At the conference, Tim was centre-stage and it was fantastic to hear someone talk about the move from the passivity of patient to the activism of hacker.

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I heard the term Wicked Problems used more than once during the conference;

An artificial pancreas isn’t a Wicked Problem – it is a tamed technology, homeostasis, linear processing, binary on and offs.

The Wicked aspect is freeing-up the capacity of the patients, their doctors and nurses, the health and social care system to allow the rules to be bent.

Watching Dallas Buyers Club last week, demonstrated the same problem.

Patients deciding, they aren’t going to be cowed by the tricky relationships of hospitals, regulators and big-pharma; taking direct action. Coming together and shaping the future.

And how can I help?

How can I support this move inside my little microcosm of Doncaster?

A start might be another idea I heard at the conference – breaking the rules.

How many pseudo or made-up rules and regulations exist in our hospitals, health and social care systems?

There are the obvious – those which most wouldn’t challenge – smoking beside an oxygen tank, checking allergy status, smiling and being polite.

Beyond these no-brainers are the more opaque – visiting times, PJs and what you can and cannot wear or bring in to hospital (flowers, plants, puppies, miniature ponies?), using your mobile, listening to music, questioning the doctor or nurse; challenging. Enquiring. Costumes, uniforms, leaving early, working late, creative thinking outside the norms.

Question, question, ask and challenge, accept dissatisfaction – safe is never safe enough, better is not adequate; Chaos drives the Community.

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