Patient-centred care has been a long-standing goal of the NHS but one it has never fully reached, say Naomi Chambers and Jeremy Taylor.
When Cathy gave birth to her baby son, almost everything that could go wrong, did. She contracted sepsis on the labour ward and the nurses almost failed to spot it. Her request for an epidural was ignored, she needed an emergency Caesarean, the post-natal ward was a nightmare, her milk wouldn’t come through. And days after discharge she was readmitted with another bout of sepsis. Yet, overall, Cathy feels she received excellent care.
Tim has lived with epilepsy since he was a child. He describes it as a hidden disability which has had a massive and pervasive impact on his education, relationships and working life. He has been on the receiving end of ignorance, fear and prejudice. At one point, his girlfriend's father believed him to be possessed by a demon. In his many dealings with the NHS he has encountered fantastically kind nurses, high-handed doctors, and a GP who is “more happy to give out some pills than she is to talk about it”.
Cathy and Tim’s stories are just two of 25 accounts that we have brought together in our new book Organising Care Around Patients. These are varied and powerful stories of people’s experiences of receiving care from the NHS, from birth to death and all stages in between - the good, the bad and the ugly.
Just listen to your patient
In our professional lives as, respectively, a healthcare management academic and a patient advocate, we have both been exercised by the question “why doesn’t patient-centred care happen?” The Victorian physician Sir William Osler once famously advised: “just listen to your patient, he [sic] is telling you the diagnosis”.
We have both felt that lack of listening is a persistent problem in the NHS. We acknowledge the huge emotional effort involved in this (now more than ever) for hard-pressed health care workers, who are sometimes just battling to get to the end of their shift. Nevertheless, in compiling this book, we wanted to model the behaviour that we would like to see more of in the NHS. And so we listened – we hope we really listened - to the fascinating and insightful accounts of our storytellers.
This is not scientific data-gathering, it was a small sample of people and there were all kinds of biases in how we found them. Like many other researchers we faced the paradox that those you most want to hear from are often the least likely to engage with you. Nonetheless, there is a richness and nuance in these testimonies that cannot so easily be extracted from survey responses.
They invite reflection on a number of important themes, such as actively managing expectations, continuity of care, communicating complex information and the mental toll of long-term physical conditions. They also touch on themes such as racism and ageism, patient experiences of power hierarchies between professions, the importance for mental health of being in work, and the pros and cons of labels and diagnoses.
Ingredients of patient-centred care
Above all, these stories taken together illuminate what we have identified as five key dimensions of patient-centred care: kindness, attentiveness, empowerment, professional competence and organisation competence. Listening underpins all of these: the will, driven by leadership for patient-centred care, to get to the heart of what really matters to patients and their families.
Patient-centred care has been a long-standing goal of the NHS but one it has never fully reached. The record £36 billion increase in funding over three years for health and social care reform announced this week offers a glimmer of hope, despite some analyses that it is not sufficient and not a panacea.
As the nation tries to ‘build back better’ after the ravages of COVID-19, and the NHS goes through yet another spurt of restructuring, wouldn’t it be wonderful if patient-centred care were accorded the priority it deserves?
No-one doubts that this will be a huge challenge in a service that is as complex, overstretched and COVID-19 battered as the NHS. But everyone has a role to play in this and we hope our book will help. It invites you to put yourself in the patient’s shoes and to reflect on how you could make your own practice and your own leadership more patient-centred. Whether you are a policymaker, clinician, manager or student - or indeed a patient or carer - we hope these stories will have something to say to you.
*To mark the launch of the book, Alastair McLellan, Editor of the Health Service Journal, will be joined by Professor Chambers and Jeremy Taylor for a live panel discussion asking how care can be better organised around the needs of patients. The event is on September 17th at 12.30pm and you can register here.
*You can view this author video introducing the key themes and messages from the book. Watch: