In 2022 we published this chapter in Arts for Health - STORYTELLING by Michael Wilson
This is Our Story:
Digital Storytelling in Swansea Bay Health Board By Prue Thimbleby Back in 2012, I landed my dream job as arts coordinator for the NHS in the Swansea Bay Area of South Wales. I had been working freelance as an artist running a business called Swansea Digital Storytelling. Before that, I had been a visual artist, and before that I had been a midwife and a nurse, so this job brought together all the things that I was most passionate about. But the NHS is a big complex organisation and there were 17,000 staff in Swansea Bay Health Board. No one had been appointed to lead on Arts before and they were very nervous that the newspapers would get hold of the fact that the Health Board had appointed an artist, and there would be a lot of bad press. As a result I wasn’t appointed as a normal NHS member of staff. I was appointed for an 18 month pilot project, part time, and based in the local university. So I started with a big uphill task to win over hearts and minds. I had heard the phrase ‘patient stories’ and I came to understand that every board meeting started with a patient story. But I soon realised that they weren't really ‘stories’. They were sometimes patients visiting and talking about what had happened to them. Or they were case studies written by members of staff. Or thank you letters from patients. Or PowerPoints, with quite a lot of technical detail in them. At the same time, there was an embarrassingly large backlog of complaints. The first digital story that I was asked to make was with a couple who had been complaining for five years and had not found resolution from the complaint process. I arranged to meet them, and rather than ask them to script something, I just let them talk. They were very angry and they sometimes talked over each other, but I listened to them and recorded an hour of them talking. Because you’ve got the voice recorder on, you need to be silent and you can’t interrupt them. It is such deep listening - I love that. I then edited the audio, and made a story for the wife and another story for the husband. I played the stories to the complaints team and gave the couple a copy each. It was a very powerful experience for the couple and brought their complaint to a real point of resolution. That was the beginning. Soon after this I began to train frontline staff to become story facilitators. Some of them really flew with it and did lots and some of them did the training and then didn’t manage to translate it into practice because of the demands on their time and struggles with the technology. Meanwhile I continued to work with serious complaints and gradually the digital stories began to get shown at the beginning of board meetings. Eventually the chair of the board got fed up with case studies and the length of time that they were taking. He said ‘from now on we only want digital stories’. So that was really encouraging, and a really good platform for building this work. One of the things that is different from the Californian digital storytelling model is that I never ask people to write a script of what they want to say. Sometimes they come with scripts and I let them read their script, but then I say ‘now can you turn the script over and tell me the story again?’ And that’s what they do, and the quality is so much better when they do that. Sometimes I know it is going to give me a really big editing job, but it’s always worth it to have something which is told from the heart. Another difference is that I do the editing rather than people doing it themselves. But I always really emphasise that the storyteller is the director of the story and they need to be involved at every stage and help make changes until they are happy that it expresses what they want it to say. Things haven’t always gone smoothly. We’ve had ups and downs. I’ve made mistakes and got things wrong occasionally. There was a short period where we stopped training and stopped making stories whilst we went through a whole governance process to really think clearly about what we were doing. We already had a consent process, but at this point we introduced what we call the request and submission form. Part one of the form is the request where whoever is asking for the story, which can be a patient or a family member or a member of staff, explains what the story is about and why it’s important, and how it’s going to be beneficial to make the story. And then they also have to include all the people who have been informed that the story is being made so that there are no surprises for people when a story is played. And then the submission part, part two of the form, has become really important because that’s about the actions that need to be taken as a result of the story. Sometimes there aren’t any actions, but if it’s a complaint story, there are often actions and changes that need to be made. The actions are put onto the final slide of the story and this part can be updated as changes are made so that people watching the story in the future can see the outcomes. We are always thinking about how to improve. For example one of the things we changed a couple of years ago is that we no longer store the consent form in the online library with the story, we actually embed the consent in the story – so the first slide of a story lists where the story can be played. This means that the personal information on the consent form doesn’t have to be stored in the library. Anybody who watches the story can see right at the beginning what permissions that story has and that information is never separated from the story. Over the years there have been 200 - 300 stories made in the Health Board. One of my favourite ones is the one where the lady texted me the next day and said ‘Last night, after I had told you my story, was the first night that I had slept right through in the 13 years since my complaint began.’ Another favourite was a transgender story which stopped a situation escalating to the courts and instead became something that the storyteller promoted as best practice. Many stories have improved services and policies, such our family-witnessed resuscitation policy, incident reporting, and end of life care. Stories are regularly used in training, such as a story by a family who wanted to be more included in a serious complaint investigation, and a staff story about an unexpected discovery of a grade 4 pressure ulcer. In 2017, I decided to run a conference called Storytelling for Health, and I asked Emily Underwood Lee from the University of South Wales if she’d run it with me. We put out a call for contributions and much to our great joy people applied from all over the world. It was the most glorious two days of interaction and conversation and performances, with a really healthy balance between artists/storytellers, academics and clinicians - and many of those people were also patients. It was so much fun that we did it again two years later, and we have just, in 2021, done the third version of it, which had to be slightly different because there were restrictions following the pandemic. Just before lockdown, I was in conversation with NHS England about delivering some training for them. Then lockdown happened and I moved everything online. It has been a silver lining of lockdown as nobody had to travel. I have trained 9 groups of staff from across England, all of whom are working to improve patient experience in the NHS. The training is now accredited by the University of South Wales, so they can get MA level credits for the training if they wish to. It began with working in serious complaints, and many of the stories that I’ve recorded and worked on with people are advocacy stories. I am still passionate about doing those stories, but I’ve also learned over the years that the good news stories are better stories to help change attitudes and behaviours. Like the traditional story of the sun and the wind arguing about who’s the most powerful. The sun wins because the man held on to his coat more tightly when the wind blew but when the sun shone down strongly, then the man took off his coat. Good practice stories are like the sun: they lead to behaviour change. We currently have 12 frontline story facilitators in the Health Board. The patient experience team manage the library of stories and provide stories for staff running meetings and training events. We are about to start a one year research project to assess the impact of the storytelling programme in partnership with the George Ewart Evans Centre for Storytelling at the University of South Wales. We are looking forward to building the evidence for the real quality improvements that storytelling brings in the health service.
The impact report is now published and the Welsh NHS have adopted our methodology as policy for how we gather digital stories from people and our communities throughout Wales.