How do we experience care at the end of our lives?

In April 2020 a group from Dorset Healthcare University Foundation Trust, University Hospitals Dorset NHS Foundation Trust, Lewis-Manning Hospicecare, Forest Holme Hospice Charity, Care Opinion, Magma Effect, and volunteer with personal experience of bereavement, came together to invite people to share their experiences of care towards the end of life using Care Opinion.

We are sharing what we learn here…

“Why we set out to do this and why we decided to do it this way”

Standard surveys are relatively impersonal.

When was the last time you completed a survey or feedback questionnaire? Did you have any sense that there would be someone at the other end to read your words? A person interested in learning from what you had to say?? Or did it feel more like your responses were likely disappearing into a virtual black hole?...

We don’t learn as much as we could from people’s experiences, both what went well and what needs to improve. The analysis and reporting of results are often dispassionate too. Headline “findings” often fail to resonate with staff and their practice failing to inspire the positive change  we seek.

We want to learn how to do this better.

This isn’t only about people working in end of life services learning how to improve what we do. We also want to make it easier for people who receive those services , and their families, to share their experiences, learn from and support each other.

We have set out to understand people’s experiences better in several ways: hearing directly from people in conversation; noticing what’s happening and what’s not happening; surveys; all feeding in to our reflective practice. In this blog we’re focusing on our work with Care Opinion.

Care Opinion enables people to share their experiences about an organisation in their own words, anonymously, online. Staff at the relevant  hospital, hospice or community trust are notified and able to respond personally in real time. This has several benefits, enabling:

- People directly involved in care to be aware of people’s experiences, appreciation and suggestions for improvement.

        - Greater appreciation of the impact of care, often positive

        - Improved staff morale, confidence and sense of purpose at work

        - Real time improvements in care and support 

   - A more human response, rather than a standard organisational line “thank you for your feedback, please contact Patient Advice and Liaison Service to discuss further…”.

        -The person sharing their experience feels seen and heard, that their experience            is valued and makes a difference

- Members of the public to read about experiences shared anonymously, as well as personal responses from members of staff.

        - People feel less alone in what they are going through

        - People are better informed about what may happen and the care and support         they can expect

        - The organisation is perceived  as more human, caring and compassionate

Crucially, we also want to understand more about why what matters, matters.

Might the language of the stories that people share with us about their experience indicate the underlying values which matter most at this time?

If the stories can point us to heartfelt values, can they be harnessed to make things work better for staff, for people nearing the end of their lives, for families and carers?

Stories are, and have been for thousands of years, a powerful medium through which we human beings capture and share meaningful information. Mining stories for values is going to be a challenge – hundreds of people, thousands of words – stay tuned and we’ll let you know how we do it and what we discover along the way. 

Thanks for reading

What do you think? What are your experiences of inviting people to share their experiences? We’d love to hear from you. Drop us a line in the comments below or join in the conversation on Twitter. You can reach us at 

@careopinion

@saskie_dorman

@MagmaEffect

Thanks to Dorset CCG for funding this work, colleagues at Dorset Healthcare University Foundation Trust, University Hospitals Dorset NHS Foundation Trust, Lewis-Manning Hospicecare, Forest Holme Hospice Charity, Care Opinion, Magma Effect, Tracy Hixson and all who have shared their experiences.