The Ockenden Report (2022) recommendations are applicable to specialties beyond maternity. A key recommendation relates to listening to families. In his statement to parliament, the Secretary of State for Health and Social Care said:
‘The report shows a systemic failure to listen to families affected, many of whom who had been doggedly persistent in raising issues over several years. One mother said that she felt like a “lone voice in the wind”. Bereaved families told the report that they were treated in a way that lacked sensitivity and empathy and appallingly, in some cases the trust blamed these mothers for the trauma that they had been through.’
Reflecting with colleagues, we all recall patient safety incidents where listening to families would have improved their experience. McQueen et al (2022) explored ‘good’ patient and family involvement in healthcare adverse event reviews. Nineteen patients and families who had experienced an adverse event during the provision of their care or that of a family member were interviewed, resulting in four themes.
Communication: Being listened to, feeling heard and having a person-centred approach where people felt included were important during any review process. When this didn't happen, interviewees mentioned feeling ‘like a statistic, rather than a person’. The human side of communication, asking about peoples' preferences and what was important to them, was emphasised:
‘I was never asked about what mattered to me or what type of method of communication worked best. If they had, they'd have known I wasn't interested in the serious adverse event review, their long-winded report, or monetary compensation, I just wanted answers and to move on.’
Trauma: This theme represents the challenges experienced with review processes. Participants reflected on the length of time it took, sharing that perceived inactivity during a lengthy review could impact negatively on mental health and lead to feelings of frustration and anxiety. Not being offered answers or a timely explanation also contributed to negative views and impacted on wellbeing during what were already challenging times:
‘We are drawing this [the review] out longer and longer and longer. And I must be careful, I don't drown myself in this whole process … I shouldn't have to sacrifice my own health and wellbeing just to get answers.’
Learning: This was important to all participants. Lack of engagement with patients and families contributed to fear of missed opportunities for improvement in the healthcare system and the same adverse event occurring to other patients. Although an apology was important, many participants wanted to know what changes had been made:
‘In terms of proper engagement … it would have been good to see what actually changed as a result …we don't know, and we will never know, actually, because the complaint was closed at that point because essentially, we were satisfied that the complaint was upheld.’
Litigation. Where participants did not feel included, listened to, and supported in a compassionate way, or where there was no evidence of learning, or a lack of timely communication, this increased the likelihood of seeking legal advice. Compensation was not the original intention of any of the interviewees, learning mattered more with litigation being a last resort and used only when attempts to get answers were unsuccessful:
‘Right from the very beginning, people had said to go straight to a solicitor, but I didn't want to do that. I wanted just to make sure it never happens to anybody else. However, in the end, I thought that I've got nowhere, I really don't feel that they are taking much responsibility, so I just decided I would take it further.’
The study concluded with eight key points:
- Apologise—In line with Duty of Candour
- Person-centred—Ask what matters to families and the patient
- Inclusive—Actively listen and include family insights in any reviews
- Communication—Remain empathetic, be open to criticisms without becoming defensive
- Close the loop—Share what learning will take place
- Timing—Provide regular updates
- Heart of review—Put patients and their families at the heart of reviews
- Support for staff—Create a just culture.