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For the East London NHS Foundation Trust (ELFT), collecting patient satisfaction data doesn’t go far enough to engage patients in quality improvement (QI). In addition to gathering feedback, ELFT offers interested patients and their caregivers — who they call “service users” and “carers” — opportunities to learn QI methods and join QI teams. What some organizations might consider radical — especially for a population of primarily mental health patients — ELFT has been doing for nearly a decade.

“We don’t see it as anything extraordinary,” says Paul Binfield, ELFT head of People Participation. “In fact, we often say that we need to do more and do it better. We feel as if it’s just business as usual.”

How did ELFT get to where it’s common for service users to be QI team members and organizations from around the world try to learn how to replicate ELFT’s success? In the following interview, Binfield and John Kauzeni, ELFT People Participation Lead, describe some of what they’ve learned as they’ve developed the People Participation initiative that has helped ELFT win national awards for patient safety and staff engagement.

Build Will

Paul Binfield (PB): We started engaging service users in People Participation about 10 years ago because our previous chief executive understood that it was important to get the perspective of service users, families, and carers to help us think about how we run our service and how to improve it.

John Kauzeni (JK): If you ask, you may find that getting perspectives from the people who use your services can help improve the way that you offer the service.

PB: As we started our improvement journey, we understood the need to build the will to commit to QI among our staff, but also among our service users and carers. We held information sessions to explain why we’re committing to QI, its purpose, and how to do it. We knew things can come and go in health care. We wanted to make clear that QI was the way we’re going to operate from this day forward. We’ve trained over a hundred service users and carers in QI methodology so far.

Develop Strengths

PB: We train people to become active members of a QI project along with our staff members. They’ll meet as regularly as the project meets. They can have some fantastic input because we’ve got people with a range of skills. We’ve got people who have worked in HR who’ve helped us with improving our recruitment. We’ve got people who have worked in business who help us with our business development work. Getting someone in who doesn’t know [our] system is often the best way of pointing out its flaws and ways we might make it better.

JK: [Teaching improvement skills] is not only for health or mental health. It’s for life as well. By teaching service users how to help with an improvement project, we also help them learn how to improve other things, how to process ideas for change, and how to improve their own lives.

PB: People are just not their illness or their condition. They’ve got a fantastic range of skills, motivation, and enthusiasm. Our goal is to build on that.

Proactively Address Concerns

PB: Some of the reservations that staff initially had about service users getting involved in QI were natural ones. Would participation interfere with the clinical, therapeutic relationship? Most of the time that’s not an issue. Staff also wanted to make sure we don’t exploit people. We’ve worked with the QI steering group to develop role descriptions. We’ve got processes in place regarding how to pay people. Staff are fantastic, but a lot of the times their anxiety about involving service users can put up a bit of an unintentional barrier, so it was important for us to be clear about exactly how we were involving service users to make the staff feel more comfortable. But once people start to see the benefits of engaging service users, they say things like, “Why didn’t we do this before? It’s making the work a lot work easier.”

How Patients Benefit from QI Participation

PB: We’ve just completed some academic research on the effect of People Participation on [mental health] recovery. Part of it was doing long-form, qualitative interviews. People reported they were getting a sense of achievement and a sense of purpose from being able to make improvements. Many of them also reported learning to be more sociable. Our service users are often quite isolated, so working together was something people really valued. They also reported growths in their confidence and self-esteem.

JK: I know a service user who has diabetes type 2 and some heart issues. When he first came to the service, he used to be afraid and unsure. After I recruited him to help with our QI work, he started coming to meetings, and getting involved in activities. He started to speak up. He’s become more assertive, more confident in saying what he wants. His participation transformed him.

Benefits to Staff

JK: Even though I don’t often mention it, I am satisfied when I see people make changes in their lives after being part of People Participation. Even though they may have still issues, many don’t seem to suffer in the same way. I’m happy when staff members, or other service users, notice the change within people.

PB: Our staff satisfaction around this goes up every year because when you’re working on improvement alongside people who you’re delivering the service to, you get a better result. And it’s more fun!

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