Just in Case: Patient-led solutions to A&E problems

Like many people who spout rhetoric about the NHS, I am guilty of indulging in the blame game. Some professionals and policy makers ‘blame’ patients for ‘inappropriate attendance’ at A&E and we have millions spent on campaigns to urge us to ‘choose wisely’ when thinking about heading that way (assuming that we do not make rational choices).

Likewise, I can blame professional for thoughtless and ineffective policies and practices. Or, I can point the finger at ‘the system’ for being professionally-centric. Note that the notion of blaming ‘the system’ is itself a neat trick that casts a blanket of blame over others, without requiring us to be more precise about where the problem lies. It is also a familiar tactic for the traditional patient movement through which we can maintain an ‘us and them’ attitude and an adversarial posture towards improvement.

However, this one vexes me. I have been active on twitter declaring that the A&E crisis is also an opportunity to demonstrate the benefits of patient and public engagement like never before. If patients could step up to be partners for change and help foster improvement in this of all situations, then wouldn’t that be fantastic? Maybe we would then be taken more seriously at strategic level.

So, what would a patient-led solution to the A&E crisis look like?

As many of us know in the patient-led movement, it is not about me being ‘the expert’. Nor is it about me purporting that my solutions are the only ones. Nor does it mean basing any answer solely on my own personal experiences, though it might mean starting there as a way of exploring perspectives to gain insight into the problems.

I think it is more about how I and we contribute towards a process that allows us (patients and other stakeholders) to come together towards a shared understanding of the issues to be tackled, helping to generate a wider set of options and contributing towards a shared vision of what those solutions might be.

A recent Harvard Business Review article stated that one of the markers of a good leader was the ability to understand context and to understand why and how our ‘adversaries’ hold the views they do. This is a version of ‘seeking to understand, before seeking to be understood’.

In the context of the A&E debate then, why is it that policy and practice is directed (I would say mis-directed) towards demand management mode and diversion at the ‘entry gate’? This is a mindset that seems to patients more about saying ‘go away’ then ‘welcome’. This in turn leads to developing more ‘alternative’ services away from the hospital (111, better GP out of hours services, etc), communication efforts to send people to these services, and urging people to ‘choose wisely’.

Though I find it hard not to get angry about these tactics (for reasons I will explain), they are legitimate responses to the problem of a ‘pressurised’ service that is finding it hard to cope with ‘demand’. Staff work extremely hard to cope, the service is struggling, and when people are struggling, there is a tendency to point the finger at those who are ‘doing the demanding’ and to do something about those people ‘causing’ the problem.

It is a short step then to assume that the reason people keep on coming is that they simply don’t understand about those alternatives and that effort should be made to get them to ‘trust’ those other places. In short, the NHS should speak LOUDER and more sloooooowly, to get them to do the right thing. A dose of logic and good PR will do the trick. But it won’t work. Why? From a patient-led perspective, I think there are several reasons.

The ‘just in case’ mind 

Firstly, there is a basic psychological error at the root of the A&E debate. When my child is ill, or when I am hurt, I am in pain and feel vulnerable. On top of that, I am uncertain about what may be causing it, and fearful of the consequences.

Moreover, when considering choices about where to go to get help, it is not that I do not know about 111, or the GP, or even the minor injury unit. It is because my primal mind switches to ‘just in case’ mode. I will want things checked out ‘just in case’ something serious is the matter with my child or me. I seek safety and certainty when I am feeling at my unsafe and unwell. I am not irrational or uneducated. I am hurt and scared.

If, in addition to that, I have had experience of 111, or my GP previously referring me to A&E. Or, if I have a hunch that when I eventually get advice, they could refer me on (just in case). Or, if I reckon that they have what I need at A&E (the x-rays, all the right staff for any event), then it makes sense to go to the place which will be safe, effective and cost-effective (in terms of my time and resources). I am not irrational or uneducated. I am making a sensible decision based on circumstances and evidence.

If policy makers and healthcare staff really understood the ‘just in case’ mentality (and many do, but are probably equally powerless in implementing improvements), then my guess is that different solutions, including co-location of services at A&E, would be the norm.

So, why isn’t this happening? Because Patients are not partners for improvement and change.

Patients as partners for change

Patients are excluded from policy and practice decision-making. We have no power at strategic level, and without us these challenges to orthodox thinking are not made. The groupthink is that this is a ‘demand management’ problem, the questions and answers are professionally defined and implemented. And more and more money is wasted on actions that will not work.

In quality improvement circles, people use Action Effect Diagrams. In essence this is just a fancy name for a way of getting lots of people in the room to discuss the problem they need to tackle. It is a step that allows people to think through what the ultimate aim is of an improvement project and the steps that could get us there. But if patients are not in the room, the danger is that the outcome is wrong – that it is not patient-centred and focuses on what ultimately matters to people who use services.

I can well imagine a service improvement team doing an AED and nodding their heads sagely that the ultimate outcome for improving A&E services is ‘making sure that people use alternative services to A&E for less urgent cases’. The assumptions would possibly rest also on theories that people need to be educated about wiser choices and would be directed towards generating ways that can help that aim.

My research with the CLAHRC NW London Fellowship into the benefits of patients being partners in quality improvement, shows that if patients are in the room, they will bring deeper and wider understanding of the issues that need tackling. This shifts the focus of improvement efforts. They will go on to generate a wider set of options and this will lead to better decisions and changes in practice.

When it comes to A&E, if the right people were in the room, then my guess is that the ‘just in case’ mindset would be acknowledged, and efforts might be made towards different solutions. Co-location of services at A&E would be one option. Another would be more patient-centred solutions to the ‘back-door’ problem (see my previous blog on ‘Patients as Pus and why we need to think differently about discharge processes’).

Simon Stevens urges staff to ‘think like a patient, act like a citizen’. But you can’t do that if patients are not in the room, helping to co-design improvement activities and generate solutions.

If ever there was an opportunity for effective patient and public engagement and patients being partners for change, this is it. Anyone want to try?

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Some of these issues will be explored in a forthcoming Patient and Public Engagement in Commissioning Masterclass – see here for details: http://www.healthcareconferencesuk.co.uk/patient-public-engagement

David Gilbert is a former mental health service user. He has 25 years experience of working with, and for patients. Amongst other things, he was Head of Patients and the Public at the Commission for Health Improvement, and Patient and Public Involvement Director at NHS Croydon. He has also worked at the Kings Fund, OPM and Consumer Association. He set up InHealth Associates seven years ago. He was co-founder of The Centre for Patient Leadership that originated the notion of patient leaders and patient leadership (with Mark Doughty), and was awarded ‘star leader’ status in the recent HSJ/NHS England Patient Leader Awards. He currently works part time as Patient Director, Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. David is a leading thinker and doer in the field of patient and public engagement and is a respected strategist, facilitator, researcher, trainer, writer, connector and communicator. He has worked with over a hundred local, national and international organisations to help develop effective ways that patients can be true partners in health and healthcare.

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