Commentary | "I am not the same person that came into this…": Humanising Processes After Harm | PPR

"I am not the same person that came into this…": Humanising Processes After Harm

Summary of Research into Compounded Harm experienced by patients and their families after safety incidents Sara Boyce  |  Tue Mar 11 2025
New Script activist Mary Gould and Prof. Phil Scraton

According to the NHS, “patient safety incidents are any unintended or unexpected incidents which could have, or did, lead to harm for one or more patients receiving healthcare.”  In the event of such an incident, an investigation process is initiated with the hope that learning can be obtained and measures introduced to prevent similar incidents happening in future.

Whilst it is generally accepted that healthcare organisations may risk harming patients and their families through the physical, emotional and/or financial harm caused by safety incidents themselves, there has been less acknowledgement of the additional (or compounded) harm that can be caused, through the organizational response to the incidents.  A recently published research report, (December 2024) however, has thrown some light on this second type harm, by outlining some of the difficulties encountered by patients and their families, as a result of investigations in the aftermath of patient safety incidents

“Humanizing processes after harm Part 2: Compounded harm experienced by patients and their families after safety incidents”, is a research report compiled by 12 academics based in Britain and New Zealand.  Based on interviews with 42 people with lived or professional experience of patient safety incident responses, the research identifies six key ways that patients and their families experienced additional (compounded) harm as a result of the way they were treated during the intervention by professionals. These were feeling: (1) Powerless, (2) Inconsequential, (3) Manipulated, (4) Abandoned, (5) De-humanised, and (6) Disequilibrium/ Feeling left with unmet needs and changed assumptions of the world.

Six types of compounded harm experienced by patients and families:

Six types of compounded harm experienced by patients and families: powerless, inconsequential, manipulated, abandoned, de-humanised, disequilibrium

The descriptions of those interviewed will sound familiar to many patients and families who have experienced such investigations.  Patients and families often felt excluded from investigation processes, and powerless to become involved.  Some described being given false promises of involvement that never materialised.   Reports from professionals were described as often using inaccessible language, and, for some, showed that their questions had not been acknowledged or answered. Frustration was felt as the report was perceived to be accepted as an objective truth, with no right to reply.

“At some point, surely the patient should be brought in to have these things discussed... Talk to me. Include me. Don’t sit in a room and talk about my situation behind my back and then send me a report. Let me be there.” Patient

Patients and families in general, felt that investigation processes were not setup to meet their basic needs, but instead, aligned with organisational needs; that hidden organisational agendas can take priority.

Whilst all stakeholders felt that the investigatory system was built on an assumption of honesty and good intention, most perceived a degree of manipulation in the process. Patients and families in general, felt that investigation processes were not setup to meet their basic needs, but instead, aligned with organisational needs; that hidden organisational agendas can take priority.

“We were denied [the truth] by a secretive Trust that wanted to cover their own backs and that should not be.”  - Relative

There were a perception among patients and families that the process was designed to protect worried professionals, in the aftermath of an incident.

“All they were doing, they were covering their arses and preventing legal issues. Or, you know, minimising the cost to the Trust, and that unfortunately creates a world that is not right or fair.” - Patient

“It's not easy when you're amongst these professionals who think they know it all.  History has shown that they don't know it all.”  - Relative

“I am not the same person that came into this… I was somebody who would always have a default position of trusting somebody until they gave me cause not to… now I am exactly the opposite.” - Relative

“I felt like I got pushed towards the legal approach because I didn't want money, like, you know, this wasn't about that. This was about getting a proper investigation.” - Relative

Overall, people felt that investigation processes posed challenges at a time of vulnerability, and they were described as de-humanising.

The Report concludes with three main recommendations

  1. That the healthcare system should support people to be active partners throughout investigations into patient safety incidents and the subsequent learning to reduce the likelihood of patients and families feeling powerless and inconsequential.

  2. That honest and transparent regulatory and organizational cultures should be fostered and enacted to reduce the likelihood of patients and families feeling manipulated.

  3. That the healthcare system should reorient towards repairing and rebuilding human relationships with, and respecting the experiences of, patients and families, to reduce the likelihood of patients and families feeling abandoned and de-humanised.

This research builds on other research carried out in this field, as well as on the work of advocacy and campaigning groups working with people who have had to deal with investigations involving healthcare organisations.  Its main recommendations will no doubt resonate with many patients and families.