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Today is the fifth annual World Patient Safety Day, one of the World Health Organization’s (WHO’s) official global public health days established in 2019 by the 72nd World Health Assembly.[1] Its aim is to increase public awareness and understanding of patient safety and encourage actions by governments, organisations and individuals to reduce avoidable patient harm.[2] Avoidable harm in health and social care What do we mean by patient safety? Simply put, patient safety is concerned with avoiding unintended harm to people during their care and treatment. WHO describes this as follows: “Patient safety is a framework of organized activities that creates cultures, processes, procedures, behaviours, technologies and environments in health care that consistently and sustainably lower risks, reduce the occurrence of avoidable harm, make error less likely and reduce its impact when it does occur.”[3] Modern healthcare is increasingly complex and there are many ways that avoidable harm can occur during care and treatment—it is estimated that one in every ten patients is harmed while receiving hospital care.[4] This harm can be caused by a range of patient safety incidents, and more than 40% of these incidents are preventable.[5] NHS England has stated that prior to the Covid-19 pandemic, there were around 11,000 avoidable deaths in the UK annually due to safety concerns, with thousands more patients seriously harmed.[6] However, in practice this figure is likely to be a serious underestimate, particularly as the situation has worsened due to the of impact of post-Covid pressures on primary care, social care and hospital care.[7] Reducing avoidable harm should be a top priority for governments, organisations and individuals for a number of reasons. Firstly, every avoidable death and disability is an unnecessary tragedy for patients, families and healthcare professionals. In addition, patient harm comes at a huge financial cost, with the Organisation for Economic Co-operation and Development (OECD) estimating that in high-income countries the direct cost of treating patients who have been harmed during their care approaches 13% of health spending.[8] Excluding safety lapses that may not be preventable, this figure is 8.7% of health expenditure.[9] Patient safety as a core purpose Given the scale and awareness of avoidable harm in health and social care, why does it continue to persist? The need to make significant improvements to patient safety is well-established in health and social care. However, despite this knowledge, and the hard work of many people involved in the sector, avoidable harm continues to persist at an unacceptable rate. Avoidable harm in healthcare is driven by our failure to address the complex systemic causes that underpin this. In our report, A Blueprint for Action, Patient Safety Learning sets out the need for a transformation in the health and care system’s approach to patient safety.[10] This outlines how too often, patient safety is typically seen as a strategic priority, which in practice will be weighed (and inevitably traded-off) against other priorities. To transform our approach to this, we believe it is important that patient safety is not just seen as another priority, but as a core purpose of health and care. Underpinned by systemic analysis and evidence, the report identifies six foundations of safe care of patients and practice actions to address them: Shared learning Professionalising patient safety Leadership Patient engagement Data and insight Culture. Engaging patients for patient safety So how does engaging patients for patient safety fit into this? The theme of this year’s World Patient Safety Day draws on one of the seven strategic objectives of the WHO Global Patient Safety Action Plan 2021-2030, ‘Patient and family engagement’. Setting out the importance of this for patient safety, it says: “Patients, families and other informal caregivers bring insights from their experiences of care that cannot be substituted or replicated by clinicians, managers or researchers. This is especially so for those who have suffered harm. Patients, families and caregivers can serve as vigilant observers of a patient’s condition and can alert health care professionals when new needs arise. Given proper information, the patient and family can help to be the eyes and ears of the system.”[11] At Patient Safety Learning, we agree with this sentiment, and identify patient engagement as one of our six foundations of safer care in A Blueprint for Action. We believe that patients should be engaged for safety at the point of care, if things go wrong, in improving services, advocating for changes and in holding the system to account. To highlight the importance of engaging patients for safety, we have been sharing a range of different blogs, resources and interviews in the run up to World Patient Safety Day. They are centred around four different aspects of patient engagement which are outlined below. Shared decision making at the point of care A key objective of this year’s World Patient Safety Day outlined by WHO is to: “Empower patients and families to be actively involved in their own healthcare and in the improvement of safety of healthcare.”[2] When looking at reviews of patient safety incidents and experiences shared by patients after their treatment, far too often we find that patients are not being empowered in this way. In a blog for International Women’s Day earlier this year we specifically looked at one specific aspect of this, the impact of failures of informed consent in women’s health.[12] As well as improving processes around consent prior to and during care and treatment, another key part of improving the way that patients are included in their care is by creating a far greater focus on shared decision making, the joint process where a healthcare professional works together with an individual to reach a decision about their care. The Patient Information Forum (PIF) and the Patients’ Association published an important report on this in April, Removing barriers to shared decision-making.[13] Based on a co-production project which ran throughout 2022 in the Nottingham and Nottinghamshire Integrated Care Board, this report includes a set of recommendations for national action. Much work is still required to embed these principles across the health and social care system, along with the accompanying cultural change vital to implement them. Engaging patients for system improvement Patient experiences are a key source of patient safety insight. They are valuable in helping to identify patient safety problems, understand the causes of these issues and put in place measures to prevent them happening again. In a new interview this week, we spoke to James Munro, Chief Executive of Care Opinion, the UK’s non-profit online feedback service for health and social care. In this he highlights the value of patient feedback in boosting morale and enabling organisations to make real patient safety improvements.[14] 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. Care Opinion is just one of the routes through which patients can share their experiences of harm and make their voices heard. In a blog on the hub, Richard von Abendorff talks in more detail about other approaches, noting that: “Safety improvement rather than simply complaining (often seen as an administrative process) is what so many patients and families most want to see so others do not suffer the same way as their loved one”[15] As part of its Framework for involving patients in patient safety, the NHS have created a new role for patients to be involved in supporting and contributing to a healthcare organisation’s governance and management processes for patient safety, Patient Safety Partners.[16] Last month we published an account of a recent workshop run for Patient Safety Partners at Kingston Hospital, exploring the potential for these new roles and how they may develop over time.[17] However, these different routes to contribute and gather patient insights are only effective if our health and social care system acts on them appropriately. In another interview on the hub, Jono Broad discusses how we approach involving patients and families at a system-level and some of the barriers and challenges to patient involvement and engagement.[18] Engaging patients when things go wrong A theme that emerges repeatedly in inquiries and reports into serious patient safety incidents is a failure to listen to patients, family members and caregivers when they raise concerns, and subsequently not involving them in investigations after harm has occurred. In a new interview on the hub this week, we spoke to Derek Richford about how East Kent Hospitals University Foundation Trust and other agencies engaged with his family following his grandson Harry’s death in November 2017. As well as outlining how a culture of denial at the Trust affected his family, he talks about individuals and organisations that acted with respect and transparency. He also highlights what still needs to be done to make sure bereaved families are treated with openness and dignity when a loved one dies due to avoidable harm.[19] The NHS has acknowledged that engaging patients and families after incidents of harm is an area that needs significant improvement, and emphasises its importance both in the the NHS Patient Safety Strategy and its new Patient Safety Incident Response Framework (PSIRF).[6] [20] While these policies and proposals contain a number of commendable ideas, translating them into practice remains the key challenge. To be successful, organisations will need resources, commitment and a willingness to proactively seek the insights of patients and families with lived experience. Patients as advocates and campaigners As highlighted in Derek’s interview, when avoidable harm occurs, too often health and care providers and regulators are slow to identify or act on patient safety concerns. In the Independent Medicines and Medical Devices Safety Review, Baroness Cumberlege noted the shocking degree of avoidable harm to patients over a period of decades, stating: “… patients should not have to campaign for years or even decades for their voices to be heard. Patients should not have to find the evidence to say whether the treatments they are being offered are safe and will leave them better off than before. They should not have to join the dots of patient safety. But when they do just that, they deserve to be listened to with respect.”[21] As we have seen in cases such as harm related to mesh surgery and major maternity scandals, such as the recent case of East Kent, we are often reliant on the persistence and tenacity of harmed patients and families to both highlight serious concerns and to prompt the subsequent patient safety investigations and inquiries that take place.[22] [23] To underline the important role that patient advocates and campaigners play in improving patient safety, we spoke to three people campaigning for patient safety improvements: Sandra Igwe – CEO of The Motherhood Group. Tim Edwards – campaigner for improvements in pulmonary embolism care and diagnosis. Soojin Jun – co-founder of Patients for Patient Safety US. In a video, they each talk about their experiences of engaging with the system and the challenges they have faced, as well as offering advice for others seeking to campaign for change in healthcare.[24] The insights they share help evidence the need for healthcare organisations and frontline staff to work with patients, their families and campaigners to improve safety and reduce inequalities. Share your experiences on the hub This blog highlights some key issues that show the important role of involving patients for patient safety, what happens when this is not the case and where improvements can be made. However, this is not an exhaustive list and we are always keen to highlight and amplify voices on these issues. Are you a patient with experience around patient involvement or engagement for patient safety you would like to share? Or perhaps you are a healthcare professional looking to share your frontline insights to help improve patient safety? You can share your thoughts with us by commenting below (sign up here for free first), submitting a blog, or by emailing us at content@pslhub.org. References 1. World Health Assembly, WHA 72.7 – Global action on patient safety, 28 May 2019. 2. WHO, World Patient Safety Day 2023: Engaging Patients for Patient Safety, 17 September 2023. 3. WHO, Patient safety – About us, Last Accessed 14 September 2023. 4. WHO, Patient Safety, 13 September 2019. 5. de Vries EN, Ramrattan MA, Smorenburg SM, Gouma DJ, Boermeester MA., The incidence and nature of in-hospital adverse events: a systematic review. Qual Saf Health Care. 2008;17(3):216–23. 6. NHS England and NHS Improvement, The NHS Patient Safety Strategy: Safer culture, safer systems, safer patients, July 2019. 7. WHO, Implications of the COVID-19 pandemic for patient safety: a rapid review, 5 August 2022. 8. OECD and Saudi Patient Safety Center, The Economics of Patient Safety. From analysis to action, 21 October 2020. 9. Helen Hughes, Improving patient safety: a financial imperative, Healthcare Financial Management Association, 17 May 2023. 10. Patient Safety Learning, The Patient-Safe Future: A Blueprint For Action, 2019. 11. WHO, Global Patient Safety Action Plan 2021-2030, 3 August 2021. 12. Patient Safety Learning, Failures of informed consent and the impact on women’s health, 8 March 2023. 13. Patient Information Forum and the Patients Association, Removing barriers to shared decision-making, April 2023. 14. Patient Safety Learning, Patient Safety Spotlight Interview with James Munro, Chief Executive of Care Opinion, 12 September 2023. 15. Richard von Abendorff, How can patients’ voices be heard and acted upon when they attempt to report incidents of harm?, 5 January 2022. 16. NHS England, Framework for involving patients in patient safety, 29 June 2021. 17. Melanie Whitfield and Helen Hughes, Patient Safety Partners – A workshop at Kingston Hospital, 4 August 2023. 18. Patient Safety Learning, The involvement of patients and families in a healthcare safety management system: In conversation with Jono Broad, 21 February 2023. 19. Patient Safety Learning, “Getting the hospital to be honest with us felt like a battle from day one.” An interview with Derek Richford, 13 September 2023. 20. NHS England, Patient Safety Incident Response Framework, August 2022. 21. The Independent Medicines and Medical Devices Safety Review, First Do No Harm: the report of the Independent Medicines and Medical Devices Safety Review, 8 July 2020. 22. Patient Safety Learning, Redress, research and regulatory reform are still needed: An overview of patient safety issues related to surgical mesh, 1 May 2023. 23. Patient Safety Learning, Will lessons be learned? An analysis of the systemic failures in the East Kent Maternity report, 17 November 2022. 24. Patient Safety Learning, Campaigning for safety as a patient, family member or advocate, 11 September 2023.

Dedicating WPSD 2023 to patient engagement presents a unique opportunity to unite stakeholders and drive action across healthcare settings and at all levels of the healthcare system. Patient safety is a universal concern that transcends borders and cultures, emphasizing the shared imperative of reinforcing patient safety through patient empowerment. T This webinar aspires to bring patient voices and experiences to the attention of decision makers. It further aims to empower patients and families to be bold and step forward to share their experience of harm so that lessons learnt can be used to mitigate future harm T This programme will focus on the perspectives of patients, paying tribute to those who have experienced avoidable harm from unsafe care. The goal is to raise awareness about the significance of patient engagement in improving healthcare safety and to provide a platform for stakeholders to collaborate, share experiences, and discuss effective strategies for patient engagement in patient safety. Register

Patient safety is a paramount concern in healthcare systems worldwide. Empowering patients and their families to actively participate in the process of care and pharmacovigilance contributes significantly to reducing medical errors and adverse events. This webinar proposes an exploration of the crucial role patients and families play in enhancing patient engagement and pharmacovigilance, ultimately leading to improved patient safety and better healthcare outcomes. Objectives of the webinar: Raise awareness on patient safety amongst stakeholders. Help to understand the role of all stakeholders in medication safety. Strengthen awareness of the Global Patient Safety Action Plan, Strategic Objective 4: Patient & Family Engagement Engage and educate patients and families to become the patient advocates for patient safety. Intended audience: The intended audience includes patients, caregivers, patient advocates, patient-led organisations, civil society organisations and NGOs, pharmaceutical companies, pharmacists and pharmacies, HCPs, regulators etc. Register

If you saw a news item announcing that you could now book online to have a face-to-face meeting with a person from your bank, or to visit a kitchen showroom, you’d find it bizarre. You’d be asking, “Why is this newsworthy?” Yet week after week I see headlines trumpeting how wonderful it is that patients can now make an online booking for an outpatient appointment, or something similar. These new technologies have misleading names such as ‘patient engagement platform’[1] when actually they are simply an online appointments application. Why do organisations use terminology that is so misleading? It’s a problem because many patients really do want to be engaged in their care, yet find the whole system opaque and generally impenetrable. Headlines like this make the promise that patients can have more involvement in their own care, then fail to deliver on that promise. The NHS has even got a way of scoring how involved patients are in their own care, called the Patient Activation Measure (PAM)[2]. It is the top rung of a ladder of patient involvement that starts with patient engagement, then moves up to patient empowerment. Sadly, the PAM seems to be almost invisible when one looks at NHS plans and progress reports—perhaps this is illustrative of the fact that so few parts of the NHS really manage to involve their patients adequately. Many papers have been written on the benefits of involving patients in the own care, generally pointing to the better health outcomes, better care experiences and reduced use of healthcare resources of engaged patients (Hibbard and Greene, 2013)[3]. Patient engagement in digital health attracts no fewer benefits and potentially has even more. ‘Co-design’ and ‘co-production’ are terms used very heavily these days to explain how the end users of a solution ought to be involved in its early design, development, prototyping and pre-launch testing. Despite NICE mandating this through its Evidence Standards Framework[4], it still happens far less than it should. Why is this? Digital health innovators are in a catch-22 situation. They want to pilot their solution to gain access to patients and show evidence of impact, but often they are not given that opportunity unless patients have already been involved in the genesis of the solution. That is not always possible as these innovators (many of whom are originally from outside of the health and care domain) have no knowledge about how to find and engage with patients or end users. In my opinion, one of the key things that NHS England ought to be doing via Health Innovation Networks (HINs, formerly called AHSNs [5]), is helping digital health innovators access appropriate patients who can help them to design and develop their solutions. By working in a collaborative way, these patients are not only going to be potentially supporting their own wellness journey, but that of thousands of other people too. The patients involved should represent multiple sectors of the population and embody the principles of the Core20PLUS5[6] programme in terms of reducing healthcare inequalities and improving access to digital therapeutics. NHS organisations have recently been encouraged to recruit Patient Safety Partners (PSPs)[7]. This is a new and evolving role developed by NHS England to help improve patient safety across the NHS as part of the new Patient Safety Incident Response Framework (PSIRF). The NHS Patient Safety Strategy includes the ambition for all safety-related clinical governance committees (or equivalents) in NHS organisations to include two PSPs by June 2022, and for them to have received the required training by June 2023. Anecdotally, this seems to be running around a year behind schedule. From a review of the job description, the PSP appears to be a policy and governance oversight role. PSPs might have been a much more valuable addition to the NHS if they had been asked to become involved in the creation of safer tools and therapeutic services that patients would eventually use. An opportunity missed, but NHS trusts could change this themselves in the future if they wished to. From my recent interactions with the NHS as a patient and carer, I can honestly say that patients and their needs are not at the centre of the services provided. It is really centred around staff–their availability, skills and capabilities, and their ability to effectively communicate with each other and their patients. We are a long way from value-based care,[8] in which health and care providers are incentivised to give their patients the best outcomes possible. Until the financial levers of the NHS are aligned with the interests of patients, and the huge benefits of digital solutions are factored into that, patient care in the NHS will sadly remain sub-optimal. References 1 Gateshead Health NHS launches innovative digital patient engagement service. Gateshead Health NHS Foundation Trust website, 29 August 2023 2 Patient-centred intelligence: A guide to patient activation. The Strategy Unit, 18 November 2019 3 Hibbard J, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32(2):207-214 4 Evidence standards framework (ESF) for digital health technologies. National Institute for Health and Care Excellence, 9 August 2022 5 NHS and Government back AHSNs to continue to lead innovation, under new name. The AHSN Network, 26 May 2023 6 Core20PLUS5 (adults) – an approach to reducing healthcare inequalities. NHS England, 10 November 2022 7 Appendix 5: Patient safety partner role description. NHS England, 24 June 2021 8 Hurst L, Mahtani K, Pluddemann A et al. Defining value-based healthcare in the NHS: CEBM report. Centre for Evidence Based Medicine, 2019

Hi Derek, thank you for speaking to me today. Firstly, can you describe the attitude of managers and senior clinicians at the Trust towards your family after Harry’s death? Leaders and staff at EKHUFT were closed off to us from the beginning. At every step, it very much felt like they were saying, “There’s nothing to see here.” Looking back, I realised very soon after Harry’s birth that we needed to start documenting what was happening because the Trust was not being honest. When I arrived at the hospital, we asked a nurse for the name of the doctor who had overseen my daughter-in-law Sarah’s care, and who my son Tom had expressed concerns about. The nurse told us, “You can’t have that information, it’s confidential.” At that point I started photographing Sarah’s notes as I wanted to make sure we had a record. Once the Trust’s internal investigation into Harry’s death started, they told us they couldn’t talk to us while it was ongoing. When we said that we wanted to contribute, we were totally shut out. It was upsetting that the investigation was used as a reason to avoid engaging with us, but we allowed them to get on with it for four months until they released the root cause analysis report into Harry’s death. We were offered a meeting at the Trust in March 2018, so we requested to see the report beforehand. After initially saying they would just show us the report at the meeting, they eventually agreed to send us a hard copy by post, saying they couldn’t send it by email. When we finally got to read it, the report was full of errors and just didn’t add up. At the meeting, it became clear that we knew more about their report than the consultants in the room did. They were totally in denial that Harry’s death could have been avoided and were told that there was no way it needed to be referred to the Coroner. I couldn’t put my finger on exactly what was going on, but I just knew something was wrong with the way Harry’s death was being treated. I began to suspect that what happened to us had happened to many, many families before us—the Trust had avoided taking responsibility and failed to make referrals to the Coroner for years, saying that baby deaths were ‘expected’. Their argument that Harry’s death was expected was that they didn’t have to factor in anything that happened more than 24 hours before they withdrew life support. Later we found that, on their internal notes, Harry’s death was described as an unexpected outcome. It is undoubted that there had been a cover up in the maternity department for many years and I don’t think anyone would deny that now. To quote the Kirkup report, “This pattern of behaviour by the Trust, clearly evident in this case, recurred in many others that we examined. It included denying that anything had gone amiss, minimising adverse features, finding reasons to treat deaths and other catastrophic outcomes as expected, and omitting key details in accounts given to families as well as to official bodies. Although we did not find evidence that there was a conscious conspiracy, the effect of these behaviours was to cover up the truth.” When it came to Harry’s inquest, the Trust didn’t expect or want it to happen and were obstructive throughout the process. When the Coroner suggested that it should be an Article 2 inquest, the Trust disputed it, arguing that it didn’t even come close to the criteria, which was obviously untrue. If the hospital had been upfront with us about what had happened in Harry’s case right at the beginning, we would have been able to forgive the staff and move on. But they didn’t do that. Instead, it felt like a battle from day one and I had to force myself into areas they did not want me to look. At times, I have been painted by Trust staff as a trouble maker. The Trust’s Chief Executive had to apologise to me after writing to our local MP Sir Roger Gale that I was trying to “undermine the reputation of the entire hospital.” This was in response to a letter Roger wrote to the Trust when I raised concerns that they were rating their maternity department 10/10. When NHS Resolution finally investigated, they found that the Trust was actually only scoring 6/10, and the Trust had to repay the large rebate the maternity department had been awarded for their self-audited high score. How were you able to keep pushing for answers in the face of the Trust’s attitude to your family? As Harry’s grandfather, I was one step removed from the situation. That enabled me to stand back and look at what was going on, to ask questions and raise issues that newly bereaved parents would struggle to raise. I call it ‘the grandparent effect’, and it made a huge difference in this case. I was able to be an advocate for Harry’s parents Sarah and Tom, who were obviously severely affected by losing their baby. I looked into the various reviews and audits the maternity unit had been through, and kept uncovering more evidence. The Trust was lacking in so many areas—I dug and dug and with every layer of the onion I took off, I found more rot beneath. I feel it’s so important to share what we’ve been through and what we managed to achieve by not backing down. Once the inquest was over, I learned how to set a website up and published Harry’s Story. I wanted to collect all the information and evidence we had gathered in one, accessible place. I’m still working with EKHUFT now, trying to help them make improvements and deliver Bill Kirkup’s Reading the Signals report, but there’s still such a long way to go. How easy was it to find out which organisations you could refer your concerns about Harry's care to? The Trust left us to our own devices, so I took any route I could to try and find out the truth about what happened to Harry. I went to many organisations such as AvMA and kept being told, “Yes, we hear of these things happening, have you tried X organisation?” We were being sent from pillar to post, but kept trying to find out how we could take it further. I happened to have a relative working for an unrelated department of the Care Quality Commission (CQC) and she recommended that I make a report to the CQC. It was an uphill struggle to be heard by them and I initially found that they really didn’t want to engage with me. They eventually, after 10 months, got back to me saying there was nothing for them to investigate, and at that point I replied by copying in Professor Ted Baker, then Chief Inspector at the CQC. At that point, things started to change! Although the CQC eventually started to engage with us, I’m struck by how we were expected to go to them. We were invited to a meeting in London—we paid our own train fares and Tom had to take a day off work, which is difficult as a teacher. Were there individuals who engaged with you and your family well? What was it about their response that was positive? The individuals who engaged well with us were honest and listened to what we had to say. The Director of Maternity for Healthcare Safety Investigation Branch (HSIB), Sandy Lewis, was so helpful. She would call me with regular updates and communicate how much Harry’s case mattered to her. I could sense her commitment to seeing change. HSIB in general were exceptionally helpful, but there were hurdles to overcome there too. Harry was born in November 2017, but HSIB only had the remit to investigate cases from April 2018. I spoke with various individuals at the organisation including the medical director, who was keen to take on Harry’s case as he recognised its seriousness. They eventually found a way to take it on, by carrying out a learning investigation rather than a maternity investigation. The coroner’s officer was also fantastic—she listened and was so encouraging. I was constantly emailing new evidence over and in every email I would apologise for the extra reading, but she was so affirming and would say, “Send me whatever you want, I’ll make sure the Coroner sees everything.” The Coroner was also very respectful and told me what a difference I was making; after Harry’s inquest, he said to me, “You’ve done a good thing. Without you this wouldn’t have come before me Mr Richford.” I get very emotional thinking about it even now. You and your family suffered a terrible loss. How did the responses of the Trust following Harry's death affect your family further? We’ve discussed this as a family before. The loss of Harry was on one level, but the denial and the way we were treated by the Trust was almost worse—I would say it added at least 50% to the trauma. The approach taken by the Trust was to deny, delay and defend, and the damage that has caused us as a bereaved family is immense. Have you seen any positive change in how bereaved families are treated by the system? One positive move is that I was recently involved in the panel to appoint the new Chief Midwife for England. It was a privilege to be part of the process, and it felt like being told, “You are welcome at this table.” So maybe we are making a difference, but progress is far too slow. For patients and families, the cost of engaging is far more than it should be, both emotionally and financially, as I mentioned earlier. It’s only because I run my own business that I was able to do what I did. I spent hours and hours investigating Harry’s death. We need the NHS to actively help make it easier for people to engage, and to overcome barriers such as financial cost and working hours. During our first meeting with the CQC, I realised that we had access to information that they didn’t—for example, they weren’t aware of a Royal College of Gynaecologists (RCOG) report about EKHUFT that was referenced in the Trust’s board papers. I had done the legwork to draw all the evidence together, which none of the statutory organisations had done. Eventually the CQC agreed to prosecute the Trust for unsafe care and treatment. The prosecution was successful, and the evidence we had collected contributed significantly to that. Lots of families whose babies have died due to harm in or after labour get in touch with me, and their experiences tell me that bereaved families are still being treated with suspicion and a lack of care. I recently discovered that some of the families who took part in the EKHUFT Kirkup investigation—and whose cases featured in the final report—are having to go through a whole new investigation process to claim compensation through NHS Resolution. That means reopening case notes and revisiting yet again the harrowing events that led to the deaths of their babies. The level of trauma this will cause for parents who had hoped the inquiry would bring the justice they need is huge. It is yet another example of how the system is not designed to support victims of harm, and how it fails to place compassion and dignity for patients and their families at the centre of pathways and processes. What do we still need to see change in how organisations respond to families when a loved one dies due to avoidable harm? We need people like me (but not me!) at the top of the NHS—‘real-life’ people who can represent the patient perspective at local board level and right up to the top of the NHS. Most of the people who are currently in leadership have only ever worked for the NHS or have worked there for years, and they don't know any other way of working. There’s an extent to which NHS leaders are institutionalised—they accept the foibles of the system as normal. In the face of serious patient safety concerns many seem to simply say, “No, that’s not what goes on here.” We need leaders who are upfront and honest and will say, “We made a mighty mistake and we’re sorry. We’ll do something about it.” We also need to see trust leaders being held to account. During our experience, we heard the phrase, “the Trust has done this,” a lot, with no individuals taking ownership of actions and decisions. Ultimately, people in leadership were responsible for so many of the lies we were told, but they never had to answer for that. In any other business, people would be held to account, but I am concerned that NHS leaders are allowed to do whatever they want. If this doesn’t change then very little else will. You can read more about the investigations into Harry’s death and Derek’s work to improve the safety of maternity care on the Harry’s Story website.

To celebrate World Patient Safety Day, PAHO will hold a virtual seminar that will bring together patients, decision makers, health teams, and academics to discuss and share their experiences and reflections on how to increase patient and family participation in improving the quality and safety of health care. Further information and registeration

This video has been produced in support of World Patient Safety Day 2023 and the chosen theme of 'Engaging patients for patient safety'. Related content Engaging patients for patient safety: World Patient Safety Day 2023 Working with People and Communities to Improve Health Outcomes Jenny, and why we must learn from her misdiagnosis of pulmonary embolism Racial disparities in postnatal mental health: An interview with Sandra Igwe the Founder of The Motherhood Group Patient Safety Spotlight interview with Soojin Jun, Co-founder of Patients for Patient Safety US Share your views Do you have experience of campaigning for patient safety improvements? What advice would give to other campaigners? What would you say to clinicians wanting to work with people who have lived experience? Perhaps you work in health or social care and are passionate about collaborating with patients and others to improve care? Can you share an example of how working with others has improved safety? Please comment below (sign up first for free) or get in touch with us at content@pslhub.org to tell us more.