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Listening to patients, carers, staff and communities... do we care enough?


The message from every speaker and through every presentation at the Fund’s seventh annual leadership summit was clear – intensely portrayed by passionate descriptions and powerful images: we need to hear the stories, we need to work with compassion together, we need to care.

‘I felt pain… I couldn’t speak… I felt so scared… but I was still there… I was still me…’ The moving story recounted by Kate Allatt of her frightening experience with locked-in syndrome brought back vivid memories of my work as a doctor. I remembered the countless times I had seen patients unable to fully express their stories – for pain, for fear of embarrassment or being a burden, because they didn’t know, or couldn’t say, because there wasn’t enough time. But I also remember the tremendous difference it made when we took time to elicit this information – and how essential it was in providing safe and effective care.

When I was working as a Fellow in Trauma and Orthopaedic Surgery in London, I recall an elderly patient who was refusing emergency surgery for her hip fracture, insisting instead on being discharged home despite her agonising pain and inability to walk. It was only by taking the time to find out her whole story (beyond our medical questions) that we learnt she had caring responsibilities for her frail husband and felt unable to leave him unattended to accept treatment for herself. Knowing this enabled us to arrange care for this lady and her husband, achieving a positive outcome for both. But without knowing her whole story, we could not have truly cared in this way.

In one of the workshops Joe Hall demonstrated that it is no different at a population level. He presented the story of St Paul’s Way Medical Centre**,** describing the initial angry outpouring of feeling from local residents about the previous quality of care when his team took over a failing GP practice, and how they worked with the community to overcome this. He described listening intently to their stories and caring about their perspectives, persistently facing the challenges together. And as a result, they created a GP practice that is now rated outstanding by the Care Quality Commission. Participants at the summit agreed: leaders need courage, resilience, the ability to listen, and collective approaches to working through challenging situations. Michael West stressed the need for such compassionate leadership in creating quality and safety in systems of care.

This reminded me about my work as a public health consultant and interest in Michael Marmot’s work on health inequalities. Those with the greatest need often find it hardest to access support. To provide services that meet the needs of the people we serve (individuals, communities, populations) we therefore need to work in partnership with local people, involve public health services, understand the data (and gaps), find ways to identify unmet needs, and join forces to do this together. These are useful considerations for emergent systems of health and social care integration – something echoed as important by our Accountable care organisations learning network. I remembered my Population Health Improvement team’s efforts to proactively understand needs at a population level rather than just being reactive to those presenting at our services directly; and the great examples of colleagues doing this that we found locally and across the country – Hello our aim is, Social Care Institute for Excellence’s one-page profiles, King’s College London’s IMPARTs project, King’s Health Partners’ outcomes books, NHS England’s Patient Activation Measurement, Queen Mary University of London’s Clinical Effectiveness Group, Lambeth Living Well Collaborative, and many others too.

And finally, David Wylie highlighted the importance of listening to workforce stories in a similar way – arguing that without understanding of staff motivations, without hearing their challenges, without valuing diversity, that modern leaders were unlikely to be able to create high-quality health and care systems.

In our recent paper Organising care at the NHS front line, Chris Ham, Don Berwick and colleagues highlighted the need for leaders to ‘go to the gemba’ – and listen carefully to the ideas and experiences of all staff in order to fully understand how things work (for example, issues impacting on quality and safety). For me, this demonstrated a level of care to look deeply into stories, far beyond the surface, to reach the people who receive care, their families and carers, the communities and care givers, and also those who truly need care who may not be receiving it. It surfaces questions we may ask of ourselves:

  • Do we truly understand the needs of the people we serve?

  • Do we work together in partnership with our patients, their carers, our staff and communities to hear their stories, understand what is important to them and make the tough decisions together?

  • Is this reflected in our systems leadership and plans for the future – for example, our sustainability and transformation partnerships?

  • Are we demonstrating the attributes of compassionate leadership in everything we do?

For if we truly do care, then surely we would.