Patient Safety Spotlight Interview with Lesley Goodburn, Experience of Care Lead for Provider Improvement at NHS England

Summary

This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Lesley talks to us about how personal stories enrich our understanding of data, drive real quality improvement and remind us that healthcare is all about people. She also explains how her own personal experience drives her work to improve healthcare experiences for patients and their families.

About the Author

Lesley Goodburn is Experience of Care Lead at NHS England and leads on provider improvement and the Heads of Patient Experience (HOPE) Network. She has a passion for looking at quantitative, qualitative and narrative data, triangulating the experiences of patients, carers, families and staff in order to improve the quality of care for everyone. 

Lesley's personal experiences of end of life care prompted her to create a play, a film and an educational resource to share the story of her husband Seth, who died 33 short and heart-breaking days after being diagnosed with the pancreatic cancer.

Questions & Answers

Hi Lesley. Please can you tell us who you are and what you do?

I’m Lesley Goodburn and I work in the Experience of Care team at NHS England. I lead our work around provider improvement, working with mental health, acute, ambulance and community trusts. We use something called the Patient Experience Improvement Framework, an diagnostic tool that helps NHS trusts assess how they are performing in terms of their experiences of care. I also lead the Heads of Patient Experience Network (HOPE Network) which aims to help leaders in patient experience to learn from each other, influence policy and develop skills to push forward patient experience improvements.

How did you first become interested in patient safety?

My primary interest is in the link between patient safety and experience of care. My own personal experience started my interest in this area—my husband Seth died from pancreatic cancer in 2014, and our experience of end of life care wasn’t quite the way we wanted it to be. Seth died quickly after his diagnosis, which is common for people with pancreatic cancer, as symptoms often appear quite late. There were only 33 days from his diagnosis until his death. 

When I sat down with Seth’s medical notes six months after he died, I decided to write down what happened on each of those 33 days. I found myself writing letters to healthcare professionals as I remembered what the care Seth had received felt like to me, Seth or both of us on specific occasions. I tried to share those letters with the hospital and the Clinical Commissioning Group (CCG) who commissioned Seth’s care; my hope was that as the carer, the provider and the commissioner, we could sit down together and talk about how to improve things. But eight months after sharing it, no one had replied to me.

I felt it was so important to tell our story, so working with a playwright and the National Council for Palliative Care, I created a play and then later a film about our experience. We also created an educational resource to be shared alongside the play. The process sparked me to pursue how we can use people’s stories to improve experiences of care and aspects of safety.

Which part of your role do you find the most fulfilling?

I find my work with the HOPE Network very fulfilling. It gives me the opportunity to really listen to people working in experience of care and support them to improve. It’s so important to take the time to understand the challenges and issues they face. At the start of the pandemic when everything shut down, it became clear that the NHS wasn’t conducting its usual national surveys in areas such as inpatients’ mental health and experience of care. The HOPE Network wanted to use the opportunity to shift the focus from purely quantitative data to include more narrative, qualitative information, so we started on a process of exploring stories as a means of improvement. We did some work with the NHS in Wales who had been embedding stories into their improvement processes for some time. Over the last three years we have trained 150 people from the HOPE Network to create digital stories and use those across trusts and NHS England. We want organisations, whatever their size and remit, to deeply listen to a personal experience and make changes as a result.

How have you seen storytelling about experiences of care lead to quality improvement?

We take the stories we gather to the NHS England Quality Board and different trusts in the HOPE Network, and we collect feedback from staff who have heard them. We’ve also co-produced an Impact and Outcomes Framework that looks at where the story has gone and how many people have seen it. We also assess whether action has been taken as a result of sharing the story, and what the impact of that action was.

We have shared two or three stories at the NHS Quality Board that prompted whole policy reviews around care partners. There’s another story that I know has prompted local and national work around people’s understanding of inclusion, equality and diversity issues. So we’ve seen that sharing stories can lead to big changes and new pieces of work both nationally and at a local level.

In March, we held an online storytelling conference where we shared some of the work we’ve been doing, launched the framework and looked at different storytelling approaches such as monologues and creative performance pieces. One carer shared her experiences of caring for two boys with muscular dystrophy over 14 years, focusing on what it’s like coordinating their care. She shared her story in the format of a fairytale called ‘And I’ll blow your house down’, which interspersed her personal experience with the story of the three little pigs and the big bad wolf. It’s all about finding compelling ways to share, hear and understand different peoples’ experiences of care.

How do people within the health service respond to the storytelling approach?

I’ve found that people generally appreciate a new approach and find the links we make between quantitative national data and people’s individual experiences helpful. It enables people to see and understand more, as a single story can crystallise issues hidden in the data that wouldn’t necessarily seem as significant without being brought to life through the story. It makes it real. For example, we’ve captured a story called Sophie’s Legacy where a family’s story maps back to the quantitative data captured by the Under-16 Cancer Experience Survey. There are three key issues the story helps illustrate in real life terms: that there is something wrong with children’s food in hospitals, that we should feed parents and that play specialists are needed at the weekends as much as on weekdays. Our aim is to make stories data with heart.

What patient safety challenges do you see at the moment?

One challenge is that experience of care teams can be quite small, so it may be difficult for them to make links with other parts of their organisation and get a good level of engagement. Coupled with the general pressures on the healthcare system at the moment, it makes translating experience of care into actual improvement challenging. There are also an awful lot of experiences of care to capture.

What do you think the next few years hold for patient safety?

I think Integrated Care Systems (ICSs) offer a major opportunity to make improvement work more cohesive, but we need to make sure we still focus intently on what happens at the point of care delivery. We must be even more intentional about listening to what patients and staff say to us about experiences of care and safety. 

There is a balance we need to strike between having the right governance in an ICS and being able to focus on point of care delivery for every type and size of provider. I hope that Integrated Care Boards (ICBs) will help bring these two areas of focus together. Governance at one end without focus on experience of care at the other won’t bring the change we need.

If you could change one thing in the healthcare system right now to improve patient safety, what would it be?

If I could change one thing, I would ensure that leaders and managers had the humility to really listen to people’s experiences, and not defend those experiences. They would then be more able to use that insight to make improvements.

It’s often tough for healthcare leaders to hear what patients and staff are saying, and because they understand the system and how it should work, they tend to give reasons for poor experiences of care, rather than taking on feedback. The good thing about personal stories is that people do tend to listen more deeply to them. 

We’ve also seen that where we’re able to share stories on a particular theme from a different organisation, it can help people address their own issues. The fact that what we’re presenting them with is not ‘their patient’ or ‘their setting’ helps them let down their guard, giving them space to explore the issues involved. People don’t feel they have to defend something that happened in someone else’s organisation.

Are there things that you do outside of your role that have made you think differently about patient safety?

As well influencing what I do for my job, my experience of Seth’s journey with pancreatic cancer has also shaped what I do outside of work. I take part in awareness raising around pancreatic cancer, as well as being involved in research and support for people who receive a late stage diagnosis with a short prognosis. Giving patients and their families psychosocial support is so important—the impact of knowing someone is going to die soon and that nothing can be done for them apart from palliative care can be huge. My focus is on asking how we can better support people on that short journey.

Can you tell us something about yourself that might surprise us?

I have trekked the Great Wall of China and I plan to do a long distance bike ride later in the year, from Saigon in Vietnam to Angkor Wat in Cambodia! At the moment I’m working hard on my under-desk bike stepper, but I’ll start proper outside training soon.