In this BMJ Opinion article, Miles Sibley, Director for the Patient Experience Library, reflects on why there is still a failure to listen to patients and bereaved families when things go wrong. Instead we find that over and over again, when patients die avoidable deaths, their shocked and grieving relatives are locked out of investigations, refused access to information, and denied justice.
In this article, Miles suggests that we need to recognise that the culture of any one organisation does not arise in isolation. It is part of, and to some extent derives from, an overarching NHS culture. And the national culture does not always seem to treat patient feedback as a valued resource for learning. Evidence of this includes the following:
- We tolerate the use of dismissive language. Patient feedback is routinely referred to as 'anecdotal evidence'. That diminishes patient experience, and robs it of its value for learning.
- We are comfortable with a double standard in use of evidence. Medical evidence is cherished, preserved and used. Patient experience evidence is treated as disposable. Both sets of evidence should be accorded equal value.
- We are content to weaken the independent patient voice. Healthwatch, set up in the wake of the Francis Inquiry, was meant to be a strengthened successor to the Local Involvement Networks. But Healthwatch funding has fallen by over a third since 2013.
So what can be done? Miles says we can make a start straight away by tackling the cultural issues referred to above. The term 'anecdotal evidence' must be challenged wherever it is used. Directors of Nursing could lead on this. Patient experience evidence should be embedded in professional training, clinical guidelines and practice protocols—just as medical evidence is.