Why patients are reluctant to give feedback

What do patients know? Not very much, I would have said as a rather overconfident junior doctor back in the late 1980s. After all, I’m the one that went to medical school.

I’m older and wiser now, and after nearly 10 years reading thousands of stories posted by patients and carers on the Patient Opinion website, I realise how wrong I was. I’ve learnt that, actually, patients know a lot about healthcare. They know when systems work, when they don’t, and how they could. They know when you are working as a team and when you are not.

‘Patient know a lot about healthcare, when systems work, when they don’t, and how they could’

They know whether your service makes them feel safe and cared for, or the opposite. They know whether you gave them hope, or took it away. They know whether they trust you. And they know whether they’re coming back.

There’s a lot of valuable insight here for health services to benefit from, and which patients would gladly share for free. But most patients, most of the time, won’t tell you what they know.

Overcoming the feedback obstacles

Why not? In short, they are scared to. Plus, they think it would be pointless, because you don’t seem to want to know.

Evidence from both the National Audit Office and the Care Quality Commission suggests that obstacles for patients in raising concerns are fear that it will affect their care or the care of a loved one, and that their feedback will not lead to change. The evidence also suggests that they are not entirely wrong.

These problems are not insoluble, but they won’t be fixed by wishful thinking. Addressing them depends almost entirely on you and your response over time when patients raise concerns. You’ll need to build trust.

So what will patients tell you when they feel safe enough to do so?

Sometimes they’ll tell you something that only patients can know. For example, in feedback of extraordinary intimacy a patient recovering from hip surgery reported that the toilet seats on his ward were not fit for purpose.

‘Seeing care through the eyes of an outsider gives a fresh perspective’

And a patient seeking treatment after a cycling accident, herself a doctor, described how it feels to be undressed in accident and emergency without being asked.

Sometimes, seeing care through the eyes of an outsider gives you a fresh perspective on something that had become so familiar that it somehow seemed normal like a recent heartbreaking account of a visit to a mentally ill sister.

Of course, it’s not all bad - in fact, most of it is very good.

Patients know what good care feels like and why, and they will tell you so. They’ll tell you who it was that made them feel human again and how they did that. One patient wrote of a radiographer: “Your kindness and simple conversation helped me to feel like a person rather than a patient.”

Listen and learn

What should you do, when patients and carers tell you what they know?

At minimum, you must show that you are listening. Simply stating you are listening is not enough. You must respond with empathy, respect and, ideally, practical action to address any concerns raised.

Contributors to Patient Opinion (for the most part) don’t expect that issues can be solved immediately or even at all - but neither do they expect to be ignored. And in a world where online communication is now entirely normal for a large majority of the population, a stock answer of “please contact [patient advice and liaison services]” feels like a throwback to an earlier age.

What is the impact of listening to patient stories, responding constructively, and showing in public the small, incremental service improvements that result? Is it worth it?

‘The organisation’s culture will become increasingly patient centred in reality, not just in rhetoric’

In my experience, it is: as your patients gain trust in your willingness to listen and learn, they will share more with you, and you will learn more.

Your colleagues will overcome their own fears of feedback as they discover how powerful it can be. In turn, as staff begin to trust their patients they will become more confident that, if their service falls short, their patients will tell them, and perhaps even help them put things right.

Gradually, the culture of the organisation will become increasingly patient centred in reality, not just in rhetoric.

Sometimes, with the best will in the world, and even with the best healthcare, things don’t turn out well.

Sometimes, for example, the patient dies. As a young doctor I would have seen this as a clinical failure. But what is remarkable here is that the loss is made bearable by the fact, clearly visible to a bereaved family, that the staff truly cared.

Listening to patient stories has taught me is that sometimes, after all the medicine is over, what people care most about is exactly that.

Dr James Munro is chief executive of Patient Opinion