Getting involved: contributing lived experience to research

Dorit Braun – author of this blog

I applied to join the Learning from Deaths: Learning and Action research Public and Relatives Steering Group in the hope that our family’s dreadful experience might be put to some good use. We don’t want other families to have to go through what we have suffered. I also knew that meeting other people who’d had harrowing experiences might be helpful to me because it might reduce my sense of isolation. The Steering Group was set up by the main researcher on the project, Dr Zoe Brummell, Anaesthetic and Intensive Care Trainee at University College London NHS Trust.

The aim of the research is to improve patient safety and experience by enabling better learning and action following deaths occurring due to problems with care within the healthcare system. This includes an evaluation of the implementation of the National ‘Learning from Deaths’ guidance at NHS trust level and how this compares with expectations of what the programme would achieve. The aim of the National ‘Learning from Deaths’ programme was to provide a ‘framework for NHS Trusts on identifying, reporting, investigating and learning from deaths in care’. The objectives of the guidance included supporting the NHS to develop an understanding of the reasons why deaths contributed to by problems in care happen, with the aim of ensuring that findings are shared and acted upon, and recurrence prevented. A key part of the ‘Learning from Deaths’ programme is to ensure open and transparent engagement with families and carers.

I have appreciated being part of the Steering Group. I’ve met some truly inspirational individuals. I’ve learnt from them about our shared experiences, especially being traumatised by the impact of the investigations and complaints processes, and the inquest into what we all feel were the avoidable deaths of our loved ones. Also about how individuals cope differently with the trauma we have experienced. I’ve been able to contribute suggestions and comments on drafts, which were skills I already had, put to good use, which has felt like giving some kind of a legacy to our beloved Mari. I’ve been surprised and humbled at the approach of the main researcher, Zoe Brummell, and her willingness to be open to ideas and open about what she learns. Zoe’s approach and attitude offers hope to me for how professionals can behave.

And I’ve been able to contribute a bit to MFC which also feels like a blessing to me – another possible legacy. I wrote a blog on mental illness and another on our experience of the inquest. I shared a blog with Zoe and was humbled by her response:

The blog for MFC is really helpful to me, as I’m sure it will be to others who read it. What a horrific and harrowing experience your son and wider family have been through and are still living with. When I hear or read about the events surrounding deaths where healthcare professionals have caused harm I always feel terrible for the families involved and embarrassed to be a healthcare professional. I can see why many search for justice and sometimes accountability. But I have to admit there is always a part of me that thinks – in the same circumstances could I have acted in the same way that the healthcare professional involved did and search for reasons that could explain or lessen the awfulness of some of the behaviours. I think this uncomfortable dissonance explains in part why progress in Learning from Deaths and other safety incidents is so slow and difficult to move forward. The healthcare professionals feel uncomfortable and want to move away from it and can, but of course the families involved can’t. I really do think that the only way to significantly improve patient safety is to enable more harmed families and patients to oversee the process.

Being on an Advisory Group isn’t for everyone: it’s not about putting right what happened to our loved one. It’s about leaving some kind of legacy in the future. When you can’t put things right it can be hard to be part of the group – but the shared experiences also make it easier. And the possibility that things may improve for others makes it feel worthwhile.