EONS 2012

Addressing the issue of personalised care

Professor Jessica Corner – Macmillan Cancer Support and University of Southampton, UK


You’ve addressed the issue, a very key issue in this conference, of personalised care. You’ve been answering the question, a difficult question, of is it achievable. So can you summarise what you’ve found about personalised care and what you think about the achievability of it?

What I was thinking about was, first of all, what is personalised care, what do we mean by that? And I’ve done a lot of thinking over the years about that and, particularly for me, I think about how we attend to somebody’s sense of themself, the things that are really important to them, that matter to them and the way we talk to people, the way we communicate, the information we give them, but that sort of care for who they are being at the heart of their experience.

What have you found in recent care experiences and has there been an improvement?

Over the last several decades we’ve been trying to put in a number of initiatives that address better care and support around the personalised care agenda – emotional support, information, co-ordination of care, some of those issues, being involved in decisions, involving family members.

You’ve been able to assess this?

We’ve been looking at what do you do to create that and all sorts of things have been done. It might be putting in place nurse specialists, training doctors and nurses to communicate better, charities have built information centres, a whole host of things have gone on.

Now is this part of the Cancer Patient Experience Survey?

What we’ve done recently is to look at what are the outcomes of all of that over the years, there are initiatives to improve personalised care. In 2010 we surveyed every person in England in every hospital that was treating cancer patients about their experience of being an in-patient or a day patient.

What did you find?

67,000 people answered the survey, a very large number of people, so it was huge, the biggest survey in the world. What we found was that largely people are positive but there are areas that are less positive but, more importantly even than that, I think what we found was that actually there’s huge variation of very positive experiences to less positive by hospital and also even by treatment of the particular disease you have, which means that different parts of any given hospital are getting it better than others.

One of the big areas that could be improved is simply levelling the playing field so that all hospitals reach the same standard. How easily is that achieved?

The kind of counterintuitive finding was also that some of the hospitals we thought might have done best, the famous London teaching hospitals for example, actually faired really quite poorly in this patient experience. So just because you’ve got great science, great treatment and a very famous teaching hospital, doesn’t necessarily mean that you’ve got personalised care and patient experience right. So that was a counterintuitive thing. We found that where people had a nurse specialist involved in their care, and 84% of patients had had a nurse specialist, their care was significantly better in terms of patient experience than patients who said they hadn’t. So it says the nurse specialist is an important component to providing that personalised care and support. But we also found that the experience of having care on a ward by nurses was something that looked less positive, so there’s something going wrong there and that reflects the national general patient survey in England and there are concerns in the press at the moment about whether personal care, attending to people’s needs, basic needs, care needs, like nutrition, diet, personal care around going to the toilet and some of those things actually are not so good.

So what was going wrong in the ward situation because that is, in many situations, the norm, to be on a ward?

We don’t know actually. One of the things I was calling the community to account for is to say we’d better look at this and seriously begin to think about how to address it and there are some indications of what might be going on there. I also talked about a study that was published only two weeks ago in the British Journal of Medicine which looked at nursing staffing levels and nurses’ experience of working in hospitals and patients’ experience of care across twelve European countries and the US. And there’s a clear relationship from that study shown that the management environment of the hospital is significant in a better outcome; staffing levels, not surprisingly, the better they are the better the outcome and that also flows through into patient safety. So clearly it says something about good management, a supportive management environment and getting staffing levels right are, actually not surprisingly, critical to getting experience right too.

Although, as you mentioned, the nurse specialist, highly knowledgeable, highly trained person, can be a big single factor that can improve things.

Very clear evidence and that was probably the first in the world where we’ve got clear evidence of the nurse specialist being such a key factor in improving experience. We sort of know it but actually there was data to tell us.

It’s good to have data and also the data about the management issues because the patient, you were saying, may have a whole range of professionals coming to see them but unless it’s properly managed it can make for little in terms of advancing the personal care.

Yes, and by management I don’t just mean are the shifts organised? Are the patients coming in and out? I mean the culture, the environment and the way that’s supporting staff to work and feel comfortable in their work and happy in their work. That’s just as important for delivering a personal satisfying experience for the patient, it seems, as making sure you keep your staff.

This is really vital then, what are the kind of messages that you would mention to make it possible to build up the right sort of environment to keep the staff happy and enough of them so that the patient gets personalised care?

These are challenging messages at a time when we’re having to cut back services and costs in healthcare as in other services, given the economic situation. But I think what it says is do that last because these are… cut back on some of these things, nursing staffing levels, attention to detail around some of the things that aren’t just about treatment, they’re about well-being and care are very important. They’re important for safety as well as they are for people’s experience, so that’s one message. The other thing is I think leadership is very important. From the top of the organisation down to the ward level, that makes a big difference.

So the leaders can enthuse the whole team?

And create a culture that supports giving personalised care and supports staff to do it.

And is compassionate and empathic.

Absolutely.

Thank you very much.