Patients: Permission to be Powerful

If you thought things would settle down in the NHS in England after the passage of “that” Act, think again. For starters, it’s pretty clear that the “Nicholson 2″ challenge will now extend to 2020 and the “savings” total will rise to £40bn.  In these conditions whatever we call “success” will have to be much, much more broad -based and much deeper than what’s been achieved so far. And have a far wider base of popular support.  Very challenging indeed.

There is a way to do this. Survival of the NHS in any recognisable form under that sort of enduring resource pressure will only happen if users, carers and communities understand and support the case for radical change and are enabled and supported to take much, much more responsibility for their own health.  And someone has to lead change of this magnitude.  It cannot come from “on high”, but from “down home”.  Those people in the leadership position must be the patients.

Follow my patient leader

It’s the patients and carers and active citizens who have to be the leaders to achieve real change on this scale. It’s the “professionals” who should follow the well-informed “customers”, not the other way around.

A big part of the answer about how to do this will, we hope, come out of the work of the Centre for Patient Leadership (CPL) a new venture co-directed by David Gilbert and Mark Doughty.  There has to be commitment to invest in this new approach to leadership so that patients can be transformers and enablers of change.  As we’ve said before, the driving seat for reformed public services has to be shared space.

Let’s be clear. This is not “expert patient plus”.   As the CPL co-directors sayour model of patient leadership, which draws on positive psychology, solution-focused coaching, mindfulness, the learning organisation and transformative and authentic models of leadership. It has similar values to professional, community, civic and lay leadership, but its origins and particular strengths seem to us, to be unique and the consequences profound.

In other words, it’s about patient-centred solutions to health dilemmas and learning to build collaborative relationships.  This means that being a patient becomes a strength not a weakness.  It enables individuals to move from dependence to independence and interdependence.  It’s when they get to that stage that they are in a position to be effective leaders.

Permission to be powerful

There’s another blockage to consider here. Nigel Crisp’s recent essay Patient power needs to be built on strong intellectual foundations  wonders why so many patients still lack the clout to determine what happens to them inside the health system.  He concludes that as citizens, we have a problem when it comes to authority.

[We] don’t set the terms of [our] relationship with the professionals and economic interests. The whole system is geared towards citizens and patients fitting in with these interests. I believe this reflects the fact that there is as yet no satisfactory and coherent intellectual underpinning for an alternative approach based on the counterbalancing power of patients and citizens.

This is more than just a problem of residual social deference. George Bernard Shaw was more pungent about the professionals’ “conspiracy against the laity”, but you get Crisp’s drift.  Shame he’s only realising now from his perspective of jet-setting retirement that the real issue is and always has been about power and equality for patients with professionals and institutions they dominate.  All those years he was NHS CEO could have been used to do something about this instead of colluding with it.

I think there is an intellectual underpinning already for what Crisp is seeking.  It’s in patient leadership to overcome the dysfunctional and dependence-creating and perpetuating system we have now. David Gilbert mused in his blog recently about what the practical problem really is. “….  on the whole, patients, patient leaders and the patient movement remain infantilised by the NHS. But let’s not wait for our parents (aka professionals) to change, or expect permission to be more powerful. There’s also something subtly disempowering about relying on government and policy makers to be the ‘drivers’ of change. I think the move towards patient leadership starts closer to home. 

That’s the point, perhaps uncomfortable for many.  It is simply not enough to expect the “professionals”  and policy makers and institutions – however well meaning –  to achieve what is needed.  It is fundamentally against their interests.   It can only come up from the patients.  And it has to  happen that way if the NHS is going to survive the disruptions that are about to beset it in addition to the Nicholson financial straitjacket.

A bumpy ride

No less a body than the Royal College of Physicians recently said that  in order to improve safety and quality of care, 1 in 3 hospitals should just shut.  And then there’s the (delayed yet again) Francis Report on Mid Staffs which is due to hit the NHS like a nuclear blast and release what its author has already called a “tsunami of anger” breaking over the entire NHS.  You can’t say we haven’t been warned.

So fasten your seat belts. The ride is going to be bumpy.  When it’s over, the NHS will be different in ways we cannot predict now.  One thing is sure: when the ground stops shaking beneath it, the NHS will need its patients more than ever to be powerful in order to help lead it. They don’t need permission. They have the power if they will but use it.

We have to start facing up to the patient leadership challenge now and investing where leadership matters to people most – “closer to home”.

 

The Moore Adamson Craig Partnership supports user and public participation, trains lay representatives and develops responsive health, care and education organisations. We are ready to work with and support all those who want to make sense and a success of the new structures of patient and public engagement within the new arrangements for health and social care commissioning and providing. Feel free to contact us to discuss the opportunities.

Comments

  1. Richard Grimes says

    As a patient I want QIP to be permanent, that is Quality-Innovation-Prevention should be ingrained into every part of the NHS. The obsession on the last P is political and comes about from politicians without the courage to accept that increasing demands means increasing funding – unless we resort to overt rationing and co-pay. The move to a £40bn QIPP “saving” will break the NHS. It just isn’t possible, so let’s focus on what is important: QIP without the other P.

    Locally, I am seeing service changes, some of them for the better and some of them with healthcare delivered cheaper. The problem is that they are being imposed top down, often without even consultation: “we no longer do it that way…”. For my own condition – type 1 diabetes – I am being told that telehealth is the solution and soon I will have a set top box which I will be expected to use to fill in my blood glucose readings to be sent to a remote diabetic nurse. I won’t use it. No one has ever asked *me* how I can be helped to improve my self-management. Instead, I am told how I am *supposed* to treat my diabetes. I was dianosed with diabetes 36 years ago and I was taught to self-manage it 36 years ago. Although I have had incremental updates, my management is based on what I was told 36 years ago. I am told that a DAFNE course (which I would like to attend) is too expensive, but a set-top box and a telehealth service contracted out to Serco, which I don’t want, will be imposed on me. Where is the patient choice?

    It is a relief for me to meet other diabetics at social events because when we talk together there is a whole stream of comments like “oh, I do that too”, “yes, my doctor doesn’t believe me about that either”, “ignore what the diabetic nurse told you about that, I do what you do and it works”. Consequently, what is said in the consulting room between me and my doctor about my diabetes is very different to the diabetes that I actually have or that most diabetics have.

    Let’s be clear about this: I want quality of life and I want my condition to have as little effect on my life as possible. That does not mean ignoring it (quite the opposite) but equally so, it does not mean I have to be the perfect diabetic that my clinician wants me to be.

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