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The power of story telling

Simon Morgan
Simon Morgan
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Last week saw the 2012 International Forum on Quality and Safety in Healthcare in Paris, and day two started with an inspiring keynote from the President of the International Health Institute (IHI), Maureen Bisognano. During her address, Maureen used a secret weapon that she believes helps to change the way healthcare is provided to patients – the power of story telling. She recalled examples of patients and colleagues who are creating better care experiences by placing themselves and their families at the centre of everything.

In one example, she talked about a visit to Wisconsin, where she spoke to a nurse who keeps a photo on her desk of a 94-year-old lady, called Ethyl, who lost her husband of many years. As a result of her sad loss, and with no other family members that she could turn to, Ethyl suffered a deep form of depression and before too long was confined to a wheelchair. Maureen described how one day the nurse pleaded with her patient: ‘Ethyl, what matters to you?’ – a question which has a different meaning to the more traditional ‘What is the matter with you?’ Ethyl’s reply was simple: ‘I want a dog’.

Taken aback by the response from Ethyl, the nurse replied: ‘But I’m a nurse who cares for and treats patients – I’m not an expert with animals.’ As weeks went by, so did similar exchanges and Ethyl’s condition unfortunately further worsened. She became more and more tired and frail until, one day, the nurse drove past a dog pound and made a spur of the moment decision – she picked up a dog and gave it to Ethyl during her routine welfare visit.

And that’s not the end of the story: during the following weeks, Ethyl’s condition significantly improved and it wasn’t long before the previously frail, elderly lady who was completely dependent on home support, went on to play the violin for other patients in the hospital’s lobby. 

Maureen also recounted the story of Christian Farman – a young man from Sweden with kidney disease. Christian was a mechanic who found that the side effects of his treatment (nausea and constant tiredness) were ruining his quality of life. After carrying out much research on self dialysis, he firmly believed he could reduce the side effects and have more consistent care if he alone were to provide his dialysis, rather than different clinical staff.

He pleaded with his nurse at Ryhov County Hospital in Jönköping to help him treat himself and regain control of his life. After persuasion, the nurse agreed. It wasn’t long before Christian was using the equipment and confidently administering his own treatment. Soon, he noticed the side effects had reduced and, as a result, his quality of life improved.

And there it was – the acorn of change was planted. It wasn’t long before other patients on the unit were taught self dialysis and thereafter the practice became accepted on the unit. 60% of unit’s patients have since followed in Christian’s footsteps to manage their own treatment with support from the clinic. This has not only led to a better quality of life for patients, but has led to cost savings for the department – largely attributable to fewer complications. Now, the unit plans to push their goal of self care to 75% of patients. 

Maureen firmly believes that to bring about real change to the way that healthcare services are delivered to patients around the world, leaders need to be effective at story telling. Through telling these stories, she highlighted the importance of flexibility – taking bold decisions and finding out from patients what truly matters to them, as opposed to asking them ‘what’s the matter?’ For me, these cases really demonstrated how empowering patients and their families to be active partners in choosing and managing their treatment led to better outcomes and experiences for all.

At the Health Foundation we're exploring the role of stories and other ways of representing patient and staff experience to help make healthcare better. Stories are powerful because they show people as human beings and their emotions, so they need to be handled very sensitively. We will be sharing more thoughts on this soon.

As for Christian, he never returned to his previous role as a mechanic – instead he now works with other healthcare professionals as a nurse on the Ear, Nose and Throat (ENT) ward at the very hospital where he inspired a new way of delivering a vital service to so many patients.

Simon is a Media and Communications Manager at the Health Foundation.





 
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I very much like this idea of story telling as a way of effecting change. We desperately need to get away from 'the patient' attitude that dehumanises a person and reduces them to a set of symptoms that we don't have to get 'involved' with as we are 'to busy'. What I would also like to see working in conjunction with this is Leaders listening to the stories of the foot soldiers (front line on the shop floor) trying desperately to care but stunned into confusion self doubt and inertia by the onslaught of yet more paperwork, more audit, targets and CQINS to try and 'prove' that we 'care' Perhaps with effective listening of the stories to be told by ALL parties that an ALL party solution can be found that can move us forward to the 21st century health care system that we seek.
We are working on a project with healthtalkonline.org which draws on real stories of patients' (and carers') experiences of conditions. It includes the following great quote from Philip Pullman.

"True stories are...nutritious and sustaining. They feed the mind with information and the heart with hope and strength."

Story telling by carers of people with dementia (who are often unable to communicate their own thoughts & feelings) are even more powerful but often carers struggle to be heard in the health care setting. They act as advocates and expert carers knowing the person's life story and thus can help the professional staff understand the needs and reactions of the person cared for. Members of Uniting Carers at the charity Dementia UK (www.dementiauk.org.uk) regularly talk to health & social staff and trainees about their journey of caring. Very often this is the most powerful part of any training course.
The Life Story Network has just trained 500 people from the health & care sector, including voluntary & independent sector in life story work, underpinned within a human rights based framework as part of the national dementia strategy workforce development. Trainees have felt empowered to really embrace this approach in everyday practice. Comments like - "you touched upon core values which brought them into this work that has probably been dormant or at very least buried amongst beaurocracy over the years". It's not difficult - put yourself in the patient's (or carer's) shoes and ask yourself what would I want?
Story telling is indeed powerful - and fashionable. So much so, I used the method to keep 300 school staff fully engaged on team working in a hot room on the first day of term. But, when it appears it is being used too instrumentally and ubiquitously, then the power of narrative reduces. Plus some of the stories i have heard leaders share after their 'story telling courses' are not that engaging or transformative. And we, the people, don’t like being played and left feeling manipulated. As Gwen, comment above, implies helping individuals and groups share their own stories - with leaders and helpers listening - is maybe the most useful and long-lived approach. And if leaders are going to tell stories, then this 15 year old piece (Conker Tree by Trisha Greenhalgh here BMJ1997;315:1315.1 and in Narrative Based Medicine) shows what is key - it has to have the humility needed for major impact.
In the 1000 Lives Plus work in Wales we have discovered story-telling to be a fundamental tool in improving the safety and quality of patient care.

Not only does it remind us how our actions impact our patients and their families, but it also helps to identify areas of good practice and where improvements may be needed. Using stories can help us engage with people in a different way and support the spread of patient driven care.

The collection and use of stories should be encouraged by all staff – from leaders to the frontline – and individuals in between, as everyone can benefit from the experience. Stories are also uniquely placed to helpful us understand how co-ordinated (or uncoordinated) the care provided is – which is why we should be working with partner organisations to help share stories and the learning and insights they provide.

In NHS Wales, organisations are learning together on how to spread the use of stories for improvement, increasing staff capacity and skills to collect and develop stories that can be used in different ways to support improvements.

Further details of this work in Wales is available online at www.1000livesplus.wales.nhs.uk/stories
Apologies for joining the party so late, but it's great to see others within the health community discussing the powers of storytelling. I lead the heath business in a consumer storytelling agency called Aesop www.aesopagency.com. Our role is to help businesses and brands within the health space understand and tell their stories. We'd love to hear more about what others are doing....
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