I have recently been involved with two events where patient involvement figured highly. One was presenting at a conference on patient involvement in education, and at the other I was a participant in the Health Foundation Q Initiative. At both I heard it was a great idea to involve patients – indeed it’s now mandated by Health Education England (HEE) – yet the reality was, for some, very different.
Away from the successes outlined in keynote speeches, I heard lots of reasons (or maybe excuses?) as to why it wasn’t happening – these ranged from ‘no time to do anything different’, and ‘it’s too hard to find patients to be involved’, to ‘what if they go ‘off-piste?’, ‘we can’t guarantee the quality of what they say’, and even unbelievably, ‘we have to protect our students!’. Sadly, I experienced a genuine mood amongst some, but thankfully not all, that a patient experience was unfortunately somehow short of the ‘evidence base’ that academic programmes require.
At the Health Foundation, my sadness was altogether different. I listened to several patient participants tell their stories of being involved. At times it was uplifting and at times very painful – a patient recalled how a clinical member of staff called her a liar in an open meeting, flatly denying that what she experienced could ‘ever have happened on my ward’. The patient was then left, with no de-brief, to find their way home alone.
In the 2008 book Nudge: Improving Decisions About Health, Wealth, and Happiness, Richard Thaler and Cass Sunstein talk about the prompts that make us change our behavior. If we are truly going to transform the NHS, the nudges we receive from listening to the patient experience and doing all we can to involve them in their care – as much as they wish to be involved – is a good place to start. You may think you already do this really well, and indeed you might. But we can all improve. We should accept without the ‘yes but…’ and learn. Here, Mark Doughty talks about meaningful patient engagement and the ‘unique lens’ patients have which can help us deliver the care they need. Some of my fellow conference presenters were students who had been taught by patients over a period of time and what they all said echoed this. They reported the biggest nudge was interacting outside of the clinical setting.
‘Patients’ became people with interesting careers and diverse lives, not a set of symptoms to be sorted and as professionals they told of greater empathy and massively improved communication skills. It’s by listening to patients, really listening to patients, that we start to truly understand the impact our services have on them. We learn of the hugely positive difference we have made to their lives and also when we could have done things differently in order to meet their needs. It’s more than just caring ‘for’ people clinically; it’s learning to care ‘about’ them as individuals.
Now that is something you will never learn from a book.