Power to the people

So Francis is finally upon us. The battle is joined and it will be big. A lot more than 400 dead in Mid Staffs and more than enough blame to go round. A time of reflection, remorse.

When the Mid Staffordshire NHS Foundation Trust Public Inquiry – led by Robert Francis QC – reports on Wednesday, there will be a lot of talk of ‘lessons will be learnt’ and ‘cultures will have to change’.

There will be lots of warm words, but few buttered parsnips. There will be a litany of recommendations and regulations; but for every recommendation loaded onto the front of the NHS lorry, a ‘must do’ from the scandal before last will fall off the back.

Compassion – the missing piece of the jigsaw

The problem is that a central piece of the jigsaw is missing. You can declaim in response to Francis that ‘lessons will be learnt’ all you want. But the question is how – oh how – do you engineer compassion into the system?

The lesson of the past ten years (that we clearly have not learned!) is that none of the usual nostrums work – not protocols or targets, not contracting services out or financial incentives, not competition, not choice, not markets.

Paradoxically, part of the reason that compassion failed on such a massive scale at Mid Staffordshire is that over the past 30 years the cost of systematising care has fallen.

Digitisation meant that it became easier and cheaper to count the process of care, to do service-line budgeting, to write and implement care pathways. This is a good thing – many patients are alive now because of care is more systematic.

But along the way, the ‘how’ of care, the compassion, got crowded out by the stuff that we could measure. And since it is almost impossible to systematise compassion let alone enforce it, we are stuck with services that focus on the ‘what’ of care rather than the ‘how’.

The lesson here is that the very tools that the NHS reaches for at times of stress actually contribute to crowding out compassion. To get out of this trap we need to look for answers outside the citadel of the NHS, outside the institutional ways of doing things.

Getting care to Bed 7, using the person in it

Let’s begin with the fact that the person with the greatest incentive to get great care to Bed 7 is the person in bed 7. What is more, we know that by and large the person in Bed 7, together with their family, positively want to help staff deliver that great care.

So we have this huge wealth of willing volunteers just waiting to help. They may not be experts in ‘what’ should happen next (that’s largely down to the evidence and the docs) but they are experts in many aspects of the ‘how’ of care – whether they are being treated with respect and dignity, whether staff are compassionate or not.

Given that patients have always had an intense interest in getting the best care what is new now? The game changer is that the person in Bed 7 (or his wife or son) now has a public voice so they can talk to us, and about us, on their own terms.

This is the bedrock on which a compassionate revolution could be built. Its effects are profound.

A revolution with profound impacts

Firstly, the public nature of these new channels means that staff and patients cannow discover what each is saying quickly and cheaply.

No longer are the conversations about your mum’s care just held round the school gate, the water cooler or down the pub. Instead, they are at the end of an RSS feed waiting to be found.

And if staff and services choose not to listen to what I think about the way they do or do not care for my mum, I know that others will.

Secondly, conversations are the very the stuff of relationships, so if it is care and compassion we are short of then these new public conversations should be a rich resource with which to reshape care.

After all, it is exactly those things which patients want to talk about – their gratitude, fear, anger – that are the ingredients of compassionate care.

Finally, both sides of this revolution cost little or nothing: patients want to help whilst the technical means to build these conversations already lie close to hand in Twitter, Facebook and platforms like Patient Opinion.

Broadening the discussion

So what would a compassionate revolution built around these tools look like? Well, you can see early fore runners in how some trusts are beginning to use Twitter, but by extrapolating from current Patient Opinion data it is possible to get a slightly more detailed view.

In a few years’ time, imagine 100,000 patient-initiated conversations shimmering across the NHS in public each year.

If these conform to our experience at Patient Opinion, around 45% of these will be completely positive, people saying “thank you” to their great staff – whilst around 5% will be highly critical. Around 12,000 will lead to a service improvement.

There will be about 10,000 staff receiving automated alerts tuned to their specific responsibilities and of these some 2,000 will have responding rights meaning that each one has around one story per week to reply to. A wide range of agencies can already be seen to be listening to these conversations.

Add in the ability of patients to invite their own friends and family to follow their story, so that they get alerts to any comments about it, and you begin to see a cheap, scalable system capable of focusing staff on the compassionate aspects of care day in and day out and at very low cost.

It’s a nail. But it’s a good nail.

Of course, to a man with a hammer everything looks like a nail; and since I run Patient Opinion it may be that I am overly obsessed with my particular kind of hammer.

The future may not look like this, but what is exciting is that this kind of networked infrastructure is not just more of the same. What’s more, it runs off the energy of the web not the centralised dictats of Francis or the NHS Commissioning Board. As such, it fits the ecology of the 21st century.

On this analysis the answer to Mid Staffs does not lie primarily within the NHS but within the citizenry. Yes, lessons will be learnt but not in response to incentives or protocols or regulations.

Rather, lessons will be learnt through patients, families and service users exercising their new public voices. A new variety ofconversations is emerging on the empowered networks that swarmaround and increasingly through healthcare.

The outcome of all this is as yet unclear but of one thing I am certain – for good or ill, compassion over the next ten years will be shaped more by voice than by choice, more by transparency of web-based conversations, than the deliberate actions of professional elites.

About the author: Paul Hodgkin is chief executive of Patient Opinion, a website on which patients, service users, carers and staff can share their stories of care across the UK. Patient Opinion is a not-for-profit social enterprise based in Sheffield.

Until 2011 Paul also worked as a GP and has published widely including in the BMJ, British Journal of General Practice and the Guardian and the Independent. Follow him on Twitter @paulhodgkin.