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Peter Sidgwick, a Consultant in Paediatric Intensive Care, and Julie Plumridge, a Senior Safety Partner, both work at Great Ormond Street Hospital. In this blog they explore the unique complexities of paediatric patient safety and why listening to children and families is critical to getting it right.  Patient safety is fundamentally about learning from harm to prevent it happening again, with the patient voice as a key factor in providing valuable feedback and sharing concerns following a harm event. However, in paediatrics, an equally important principal is “who we learn from”. Unlike adult care, where the patient can usually advocate for themselves, children rely on parents and carers to interpret their experiences, be their advocate and understand what they cannot yet articulate. When something goes wrong, the emotional and relational complexity around this advocacy role intensifies. Parents may feel guilt for not recognising harm earlier, powerlessness if they struggled to have their concerns heard or deep conflict between trusting the system and fearing it has let their child down. This is why meaningful engagement with children, young people and families in the patient safety processes that affect them cannot simply mirror the approaches used in adult services. The dynamics and emotional weight are different and so the way we listen must be different too. Understanding the family’s landscape from the start Engaging a family after a patient safety event requires more than understanding the clinical facts; it requires understanding the family context. Who was present at the time? What is the balance of emotional or practical burdens between parents? Are there siblings affected by the incident? Are there language, cultural or relational dynamics that shape how the family communicates and copes? Taking time to understand the nuance of this before the first conversation is essential. For some families, one parent may have felt unheard during the admission and will come into the investigation already emotionally raw. For others, the incident may have triggered feelings of guilt or self-blame, even when completely unwarranted. The needs of the child must also be considered; a traumatised teenager may require a very different approach from a frightened younger child who communicates distress through behaviour rather than words. These differing needs can place an additional emotional burden on parents. This preparation allows the investigation team to approach the family with empathy and clarity, avoiding assumptions and reducing the risk of re-traumatisation. The unique emotional burden of advocacy in paediatric patient safety Parents often describe a tension: they know they must advocate for their child, yet during the event they may have felt unable or unqualified to do so. When harm occurs, this tension can evolve into feelings of responsibility — even when the cause lies entirely within the system. This is one of the most significant differences between paediatric and adult patient safety engagement and acknowledging this openly can be transformative. Children’s hospitals routinely depend on parental insight – so often we hear that parents notice subtle behaviour changes long before clinicians do. When that insight isn’t acted upon, or gets lost amid the busy clinical environment, the emotional wound can be profound. If the investigation process does not make space for that, families may disengage or feel that their voice is “too little, too late”. Working in paediatric patient safety therefore demands that we help parents reclaim their sense of agency. We can do this by setting clear expectations, transparent boundaries and offer genuine opportunities for them to influence the investigation. When families feel they are collaborators — not observers — their ability to contribute meaningfully increases and the investigation gains depth and accuracy. Collaboration restores control and confidence A collaborative approach should show families: Their insight matters. Their questions will be answered. Their emotional needs are acknowledged. Their involvement has structure and purpose. Being explicit about how they can contribute (for example, sharing their insight into early symptoms or communication gaps, or helping in timeline construction) helps restore a sense of control. Some families want to be heavily involved; others prefer limited involvement. Either way, inviting participation and working together to agree how parental or carer choice will be respected and put into practice is critical. The power imbalance between families and healthcare systems is amplified in paediatrics – considered collaboration incorporating clear boundaries, consistent communication and respect for parental expertise begins to rebalance it. Closing the loop: feedback provides closure Families repeatedly say that what they want most is to know their experience has made a difference. Feedback should not be a dry account of “actions taken”; rather it should connect the dots: Here is what we learned from you. Here is what has changed. Here is how your child’s experience is improving care for others. This connection acknowledges emotional labour, honours their advocacy and begins the restoration of trust, all of which may make a sense of closure begin to seem possible. In paediatrics, where the sense of responsibility felt by a parent or carer for their child’s wellbeing is so very fundamental, this step carries an especially significant importance. Supporting staff doing emotionally challenging work Engaging with families sensitively after a patient safety incident can be emotionally demanding for staff involved in the investigation process. Patient safety professionals often absorb a wide spectrum of emotions including distress, guilt, anger and grief as families try to make sense of what has happened. Being exposed to these raw and often intense feelings, while also being viewed as the ‘face’ of the investigation or organisation, can have a significant personal impact. Despite this, staff are expected to approach each new case with the same openness, empathy and compassion, which can become increasingly challenging without the right support. If we are to sustain safe, honest, learning focused engagement, we must build structured support for patient safety teams. This could include: Debriefs after family meetings. Peer supervision. Reflective spaces. Psychological support when needed. Supporting the staff who support families is not optional - it is what makes continued high quality engagement possible. Conclusion Paediatric patient safety engagement is not simply adult engagement with smaller patients. It is relational, emotional and deeply influenced by the interplay of trust, advocacy, vulnerability and parental responsibility. When we acknowledge this complexity and build processes that are compassionate, personalised and transparent families become not just participants but powerful partners in patient safety. Share your insights Have you been involved in a patient safety investigation as a family or healthcare professional? How can patient and family engagement throughout be strengthened? Share your insights by commenting below (sign up first for free), or you can contact the editorial team at [email protected] . Related content Investigating harm with humanity - practical guidance for NHS investigators, clinical teams and legal representatives (by Corinne Cope) Accountability, and what it means to bereaved families and harmed patients (by Corinne Cope) Jenny, and why we must learn from her misdiagnosis of pulmonary embolism

In December 2022 Dylan Cope, a 9 year old boy, died of sepsis after being discharged from hospital. A coroner found the boy's death “would have been avoided if he had not been erroneously discharged”, and said what happened "amounts to a gross failure of basic care”. This guidance has been developed by Dylan's mum Corinne Cope, following her lived experience as a bereaved mother. Corinne says: "Multiple investigations failed to provide clear answers or accountability, causing significant secondary harm; an issue increasingly recognised among harmed patients, bereaved families, and healthcare staff." Corinne's guidance aims to support NHS investigators and system leaders to strengthen the quality and humanity of investigations, ensuring ownership, reflection, and sustained learning.

The first of four webinars co-hosted by the WHO Department of Integrated Health Services (IHS) and the Global Health Partnerships (GHP) (formerly THET) to explore the transformative potential of relationality in community engagement and how it can be leveraged for people-led change. It’s part of a series being run by WHO and the Global Health Partnerships (GHP) (formerly THET), building on last year’s policy report on this issue launched at the World Innovation Summit for Health (WISH) https://wish.org.qa/wp-content/uploads/2024/09/Relationality-in-Community-Engagement.pdf Register

This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. James talks to us about the value of patient feedback in boosting morale and enabling organisations to make real patient safety improvements. He also describes the power of the unique perspective patients have on safety, and asks how we can use this insight to shift culture and provide safer care.

This webinar shares the findings of a co-production project in Nottingham and Nottinghamshire Integrated Care Board (ICB) to remove barriers to shared decision making. The partners in the project were the ICB’s Personalised Care Team, the My Life Choices lived experience panel, the Patient Information Forum (PIF), and us, the Patients Association. The project was one we highlighted during Patient Partnership Week last year; you can learn more about it before attending this webinar by watching the recording of the Partnering with patients and communities - what's happening in ICSs session. Over the course of six co-production meetings, we developed simple resources to support patients and professionals to have better shared decision making conversations. This webinar shares the findings of the project. Speakers will discuss practical solutions to help patients and professionals get the most from limited appointment times which can be applied nationally. Register

The Health Research Authority is holding its first research transparency week. The effectiveness and relevance of research is improved when opportunities to be involved in research are made more visible, open and accessible to the public. This is because it gives a study the best chance to involve the full range of people who will benefit from the outcomes of research. By having research opportunities more publicly available, researchers will be able to recruit and retain a wide, diverse range of research participants. As a result of increased diversity and better opportunities to access diversity and better opportunities to access research for more people, research will be more relevant, effective, trusted and transparent. At the same time, health professionals, commissioners, researchers, policy makers and funders can use research findings to make informed decisions, which will enhance public trust in research evidence and enhance public accountability. It is equally important to have an awareness and understanding of potential barriers that may restrict members of the public getting involved in research. Identifying these challenges and putting measures in place to counter them is therefore essential in the delivery of transparent research. This will be a two-hour online workshop, chaired by the co-Chairs of the Make it Public campaign group, Matt Westmore, Chief Executive of the HRA, and Derek Stewart, public contributor. The objective for attendees of this workshop will be to work together in facilitated small groups to explore this theme, and produce a set of 'top tips' to support best practice for those active in research. There will also be a short panel discussion, where attendees can hear directly from the study leads and research participants of studies, as well as organisations, working creatively and progressively in this area. NIHR Be Part of Research Patient Research Ambassador scheme, Maidstone and Tunbridge Wells NHS Trust Register for the workshop

Making Families Count has developed a new Webinar, based on extensive experience of it's members, to explore how mental health professionals can work effectively with families when they raise safety concerns about their relatives. This webinar focusses on effective risk management in the community and how healthcare professionals can work better with families when they raise safety concerns about their relatives. This webinar explores what happens when critical information is absent from treatment plans and how to utilise families effectively as part of the care team. It will also address issues of how to work well and effectively with families after a serious incident or mental health homicide. Use this link to find out who is speaking and to book your place for this online event: https://www.makingfamiliescount.org.uk/what-we-do/webinars/#managing-risk

The New Existence Webinar Series will take an in-depth look at The New Existence framework from The Beryl Institute. Helping to link core ideas and apply practices, each session in the series will focus on a key aim and corresponding actions of The New Existence. This webinar series will help to explore how lead together into the future of healthcare. The full webinar series is listed below. Webinars are scheduled from 2:00-3:00pm ET/1:00-2:00pm CT. Participants are not required to attend each webinar in the series. Click on a title below to register for the individual webinars in the series. Care teams Redefine and advance the integrated nature of and critical role patients and their circle of support play on care teams. January 28: Redefine the care team February 25: Invite and activate partnership March 25: Commit to care team well-being Governance & leadership Reimagine, redefine and reshape the essential role of leadership in driving systematic change. April 22: Create transparency across the healthcare ecosystem May 27: Restore and nurture confidence June 24: Transform healthcare in collaboration with diverse voices Models of care & operations Co-design systems, processes and behaviors to deliver the best human experience. July 22: Co-design intentional, innovative and collaborative systems August 26: Innovate processes of care to transform behavior Policy & systemic issues Advocate for equitable institutional, governmental and payor policies, incentives and funding to drive positive change. September 23: Hardwire human partnership in the healthcare ecosystem October 28: Research, measure and dismantle the structures and systems that lead to disparities November 23: Modernise the surveys and democratise the data