Patient_Safety_Learning

This account was shared with by Louise, a patient who recently underwent a hysteroscopy in Liverpool. Having read about many negative experiences, she wanted to share her positive and painless experience, highlighting the need for less variation and better experiences for all women.  I was saddened to read the horrendous experiences of hysteroscopy shared by women on this site and only discovered the accounts shared here after my procedure yesterday. I am 54 and underwent a hysteroscopy including biopsies (polyp) and a Mirena fitting after experiencing irregular perimenopausal bleeding. I have one child who was delivered by emergency C-Section 12 years ago (which was truly horrific and is a whole other topic and hospital). My hysteroscopy procedure took place at Liverpool Women’s Hospital and I can only describe the whole experience as gold standard. I was seen and treated under the 2-week target for referrals. When I arrived the gynaecology outpatient department was calm, relaxing and well-staffed by very caring and attentive nurses. I was offered a Saturday morning appointment that meant no time off work, which was a plus for me. Each stage of admission, observations, pain relief, preparation and the actual procedure was carried out with care and absolutely everything was explained to me in great detail. I was made aware during my referral appointment a few days previously about the possibility and levels of pain to expect and the pain relief options that would be available. I was expecting the worst, although I did feel mentally prepared. Pre-op I was offered ibuprofen and a diclofenac suppository which I took and during the procedure I had a local anaesthetic and plenty of gas and air. The local anaesthetic was akin to how it feels at the dentist, weird but I found it bearable. I was welcomed into the theatre by a very friendly female consultant and three nurses who explained everything and put me totally at ease. My experience of the actual procedure and how it felt was a level up from the initial speculum exam at referral stage and it felt scratchy and pinchy rather than painful, saline was introduced to help with the imaging (which I chose not to watch on the screen but could have if I wanted to). The gas and air helped massively (I took so much it made me burst out laughing and the team were worried I was crying!). It was over very quickly - I would say 15 minutes. The consultant asked me when I was dressing how my pain was on a scale of 0-10 and I answered honestly that it was 0. I experienced no bleeding at all. I was then asked to relax on a recliner in recovery with tea and biscuits and I was monitored for approximately 30 minutes. From arrival at 8.00am to discharge at 10.30am I felt looked after, cared for, respected and treated with the utmost dignity and compassion. I didn't need to stay in recovery long as I felt so well but I feel they wouldn't have discharged me in a hurry if there had been any signs of anything worrying. I was a bit anxious how I would feel after the diclofenac wore off (which I was advised was 16 hours) but I have woken up this morning with no pain, no bleeding and just a sense of how fortunate I have been to be treated at Liverpool Women’s Hospital. It really concerns me to hear of so many awful experiences around the country and just wanted to highlight for balance how well the experience went for me. I am lucky to live in Liverpool, and my heart goes out to those women who have been traumatised. Care shouldn't vary depending on where you are treated. Thank you for reading my story.

Lucy Harding is a Patient Safety Partner at North London NHS Foundation Trust, where she has also been a patient and Peer Support Worker.   In this reflective piece, Lucy shares her insights around how design in healthcare can impact patient safety. She draws on her professional background and lived experience of inpatient mental health care as an autistic person, to highlight the critical relationship between design and emotional safety. *Content warning: references to suicidality and self-harm.  I have a particular interest in how the physical environment shapes emotional regulation, sensory experience, and feelings of safety. As an autistic person, I also value sensory design and service accessibility, and I’m passionate about creating therapeutic spaces that genuinely support recovery. Design is a core component of patient safety My interest comes from experiencing first-hand how profoundly the built environment can affect emotional state, distress levels, and the ability to feel safe and engage in treatment. Poorly designed wards can feel chaotic, overwhelming, and sometimes frightening. My experience of patient involvement in co‑production projects, from artwork to furniture selection, helped me realise that design isn’t superficial; it’s a core component of patient safety and experience. As an autistic person, sensory design is very important to me, and I’ve experienced how unmet sensory needs can escalate distress. These experiences have made me want to advocate for safer and more therapeutic environments. Seeing the transformative impact of thoughtful design for mental health —such as improved acoustics, better lighting, and more predictable, calming spaces— has shown me how design can actively support or hinder safety. How the environment can impact patient safety Environments that feel like containment: institutional or outdated spaces can make people feel unsafe, watched, or confined. People should have access to outdoor spaces and fresh air, but not every mental health ward provides immediate access (eg. many wards require leave from hospital to be agreed by a care team, as there are not gardens designed into the ward environment). Sensory overload: harsh lighting, echoing voices in corridors, and unpredictable multi‑use spaces can heighten distress, especially for autistic people and those with experiences of trauma. There were times I had no control over sensory input as a patient, and this felt extremely destabilising and made me unsafe. I disengaged with and resisted treatment, and I self-harmed. The National Autistic Society reports that the average length of stay for autistic people in mental health hospital is 4.6 years, which is a considerably long time.[1] The Assuring Transformation dataset can help ICBs to look at where inequalities are for autistic people without LD in comparison to the general population.[2] I am curious about how much building design contributes to this inequity (rather than the clinical care provided). Lack of temperature control: wards that become extremely hot or cold can make rooms unsafe both physically and emotionally. Hot rooms feel stuffy and uninviting to use, both for staff and patients. High temperatures can make me feel more irritable and less rational. Many psychiatric medications also impact body temperature regulation. As temperatures are rising globally, improving ventilation and prioritising resources for this is becoming more essential. Poor acoustic design: noise and echoing make communication difficult, increasing misunderstandings and conflict. Lack of safe respite spaces: without somewhere quiet to withdraw, people may seek unsafe alternatives. I hid on my windowsill often as a patient, escaping observations and noise – but being unseen for two hours was a risk, and I wasn’t always keeping myself safe. Old buildings and shared facilities: shared bathrooms and dormitory bedrooms, and a lack of purpose-use ward spaces can create conflict, distress, and act as a barrier to treatment being therapeutic. Designing ensuite bedrooms, creating dedicated rooms for therapy, group activities, and quiet/sensory rooms can make a difference to how safe a ward feels. When design supports safety An example of a positive design change I experienced was the installation of a sound‑absorbing panel at an inpatient mental health service. It made a noticeable difference- reducing echoing and softening the overall noise level, which helped communication feel calmer and more respectful. This kind of acoustic improvement reduces the intensity and unpredictability of sounds on a ward. Also, seeing our photographs on the wall made me, as a patient, feel safe, heard, and included. Connecting with others through art and design ultimately lifted me out of a state of intense suicidality and depression. That lens has led me to be very passionate about design being directly connected to patient safety. Challenges and barriers Key challenges and barriers to designing healthcare environments in ways that support patient safety: Budget constraints: sensory‑friendly or trauma‑informed design is often seen as optional rather than essential. Legacy buildings: older wards may be structurally unsuitable for modern design standards. Competing priorities: safety is often interpreted narrowly (eg ligature reduction, or a reduction in a particular category of reported incidents) rather than holistically, which can overshadow sensory and emotional safety. Lack of awareness: designers and decision‑makers may not fully understand sensory needs or lived experience perspectives. Operational pressures: busy wards can deprioritise environmental improvements or require more focus and time than ward staffing allows. Limited co‑production: without meaningful involvement from service users, important design needs can be overlooked. These barriers mean that environments sometimes prioritise containment over comfort, despite evidence that therapeutic design improves safety. Considerations for safer design Co‑production from the start: involve service users, carers, and staff in every stage of design—not just as a consultation step. Sensory‑informed design: consider lighting, acoustics, temperature, predictability, and access to quiet spaces. Flexibility and choice: offer different types of spaces for different needs—calming rooms, social areas, private space, and low‑stimulus zones. Accessibility as standard: such as acoustic design for autistic people, people with hearing impairments, and sensory processing differences. Trauma‑informed principles: prioritise dignity, autonomy, and emotional safety. Feedback loops: continue involving patients after the building opens to refine and improve the environment. Final reflections Feeling safe is not the same as being objectively safe, and both matter equally in mental health settings. Design should never be an afterthought: it is a therapeutic intervention in its own right. When we create environments that respect sensory needs, reduce distress, and promote autonomy, we support recovery and reduce risk. Co‑production with patients isn’t just good practice, it’s essential for designing spaces that truly work for the people who use them. References 1. National Autistic Society. Number of autistic people in mental health hospitals: latest data. June 2025. Accessed online 13/15/26. 2. NHS England. The Assuring Transformation dataset (Table 3, column F&G: average length of stay for autistic patients without a learning disability). March 2026. Accessed online 13/05/26.

Risa Mallory is a retired psychotherapist from Canada and a hub Topic leader. After a serious cardiovascular event in 2018 she became a patient advocate, collaborating with organisations across the globe.  In this blog, Risa contends that patient-centred care provides a good foundation but should not be the end goal. She calls on healthcare systems to evolve towards patient-led care, suggesting that this is key to ensuring that patients are treated as partners rather than participants.  When you live with heart disease, healthcare stops being abstract very quickly. It becomes personal, constant, and at times overwhelming. Appointments, medications, test results, lifestyle changes—these are not theoretical concepts, they shape how you live each day. Over time, I have learned that how care is delivered matters just as much as what care is delivered. That is where the distinction between patient-centred and patient-led healthcare becomes meaningful. Patient-centred care Patient-centred care is a term I hear often. Clinicians use it to describe care that considers my needs, values, and preferences. On the surface, this sounds exactly right. As a cardiac patient, I want to be treated as a whole person, not just a heart condition. I want my concerns listened to, my fears acknowledged, and my circumstances taken into account. When patient-centred care is done well, it feels respectful. My cardiologist explains options, my nurse checks in on how I’m managing, and decisions are made with me, not just about me. But as someone who lives with this condition every day—not just during clinic visits—I have come to realise that patient-centred care still often keeps control firmly within the healthcare system. The care may be tailored to me, but it is usually still designed, paced, and directed by professionals. I am invited to the table, but I do not always get to set the agenda. That is where patient-led healthcare differs. Patient-led care Patient-led care recognises something fundamental: I am the one living inside this body. I am the one who feels the side effects, manages the fatigue, navigates fear after a hospital admission, and tries to balance medical advice with real life. In a patient-led model, my lived experience is not just considered—it is treated as expertise. As a cardiac patient, being patient-led does not mean I reject clinical knowledge or expect to make decisions alone. I still rely deeply on my healthcare team’s training and experience. What changes is the balance of power. Instead of being asked, “What matters to you?” after decisions are mostly formed, patient-led care asks that question at the beginning—and allows the answer to shape the pathway forward. For example, when discussing treatment options, patient-centred care might present several evidence-based choices and ask which one I prefer. Patient-led care goes further. It asks how those options will affect my daily life, my mental health, my ability to work or care for family, and whether the recommended plan is realistic for me to sustain. It allows me to say, “This may be clinically ideal, but it doesn’t fit my life,” without fear of being labelled non-compliant. From participants to partners The difference becomes especially clear after a cardiac event. In hospital, patient-centred care might ensure good communication, compassionate interactions, and shared decision-making. Once discharged, however, the burden of care shifts heavily onto the patient. Medications, monitoring symptoms, lifestyle changes—suddenly, I am expected to lead my own care without always being given the tools, confidence, or ongoing support to do so. Patient-led healthcare recognises this gap and works to close it. Patient-led care values partnership beyond appointments. It supports education that empowers rather than overwhelms. It acknowledges emotional recovery as part of cardiac recovery. It invites patients into service design, research priorities, and policy decisions—not as a token gesture, but as equal contributors. After all, systems built without patient input often fail to meet patient needs. From my perspective, patient-centred care is an important foundation, but it is not the end goal. It still positions patients as recipients of care, even when that care is compassionate and individualised. Patient-led healthcare moves us from being participants to being partners. It trusts that patients, when supported appropriately, can help guide better, safer, and more humane care. Living with heart disease has taught me that my voice matters—not just in my own treatment, but in shaping the systems meant to support people like me. True progress in healthcare will come when patient-centred care evolves into patient-led care, where lived experience is not an afterthought, but a driving force. More blogs by Risa Compassion is medicine: a patient safety perspective The power of being heard in healthcare When lived experience is embedded at every stage of research Women’s heart health - a patient safety priority Why the patient voice matters when things go wrong

This short film shows a fictional scenario of a handover between two healthcare workers. It has been created by Patient Safety Learning to help facilitate a group discussion around bias. Please read the guidance below (and attached) when using this within your teams. How to use this resource: exploring bias in handover This short video is designed to help you recognise how biases can influence clinical handovers and, ultimately, patient safety. It works best as a group learning activity. Step 1: Watch the video Watch the handover between Celia and Doreen all the way through once without interruption. As you watch, think about: What information is emphasised or dismissed. How decisions are explained. Whether anything feels “off” or incomplete. Or: Play “Bias Bingo”. Before watching again, either individually or in small groups, use a simple “bias bingo” card (you can create one using common biases such as confirmation bias, anchoring bias, etc.). Your task: Spot where different biases occur in the handover. Tick them off as you notice them. Note down the exact words or behaviours that suggest the bias. You may spot more than one bias in a single patient discussion. Step 2: Group discussion In small groups, discuss: Which biases did you identify? Did everyone spot the same ones? Where did opinions differ? How might these biases affect patient care or outcomes? Encourage open discussion—there are no “trick answers”. Step 3: Feed Back The group feeds back: One example of a bias they identified. Why they think it is that bias. What the potential risk to the patient could be. Have you seen similar situations in real handovers? What strategies could reduce bias? (e.g. structured handovers, questioning assumptions, using checklists). What would you do differently in Doreen’s position? Share your feedback If you use this resource, we'd love to hear from you. Was it useful? Did anything in the discussion surprise you or spark wider action? Please comment below or get in touch with us at [email protected].

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”. In this blog, Dylan’s mum Corinne Cope draws on her lived experience to explain what accountability means to bereaved families and harmed patients.  For me, as a bereaved mother, accountability isn’t a theoretical concept - it’s deeply personal. And for harmed patient’s/bereaved families, it’s not what is said - it’s what changes, and whether anyone can see it. I think many people are working incredibly hard within investigations. But from a family perspective, the outcomes don’t always reflect that effort, particularly when learning isn’t visible, or when the process feels defensive or incomplete And we need to be clear about what accountability is, and what it isn’t. To any reasonable person, accountability isn’t blame or punishment. Ownership, explanation and demonstrable change What accountability means to harmed patient’s/bereaved families When harmed patients and bereaved families talk about accountability, we are not asking for the impossible. We’re asking for: a full, honest explanation of what happened and why clear ownership of actions, omissions, and decisions - and their consequences genuine reflection and sincere, timely apologies for both individual and organisational failures organisational responsibility for system failures, with prompt correction and visible evidence that meaningful, timely learning and reflection has taken place And that final point matters most. Because accountability is not what is said - it’s the change that matters. Where the system is failing From a family perspective, accountability often feels delayed, filtered, or out of view. Learning is described…but not always demonstrated. Apologies are offered…but often without ownership. And too often, the harmed/bereaved find themselves driving the process. In my own experience, after Dylan’s death, I didn’t just seek answers; I found myself proposing a sepsis awareness campaign. I also found myself working to improve how investigations are carried out; encouraging organisations to respond differently to preventable harm or death, and to say: “We do not always get things right, we are truly heartbroken that this tragedy happened under our watch; and here is what we are doing to improve.” Something practical. Something needed. But that learning wasn’t led by the organisation…much of it was driven by me. And that is a huge part of the problem from my perspective. Harmed patients and bereaved families should not have to investigate, push, or drive safety improvements in response to harm or death. When they do, it doesn’t feel like accountability, it can feel like a continuation of the harm. And when similar failures happen again, with little visible change, that becomes very difficult to reconcile. Apology and honesty I also want to say something about apology, followed by a lived example. A sincere, timely apology is not a legal risk - it is a professional and human responsibility. Too often, what families receive is not an apology for what went wrong, but a general expression of sympathy…“I’m sorry for your loss.” Condolences are not the same as acknowledging failures in care. While well-intentioned, they do not meet the expectations of candour, and for many families, they fail to acknowledge responsibility or the reality of what went wrong. Individual errors can and do occur alongside wider system failures and both must be explored with equal rigour, because understanding one without the other limits learning and risks repeating the same harm. A just culture doesn’t exclude holding individuals to account where there is evidence of serious or gross negligence. From a harmed/bereaved perspective, there is a concern that in practice, ‘no blame’ can sometimes become ‘no accountability’. Honesty and reflection matter very deeply. But in my experience, those elements can sometimes be delayed or filtered out. And I wonder whether apology is sometimes still viewed through the lens of blame rather than responsibility. And that raises an important question… Is the system, at times, protecting itself at the expense of truth and learning? Humanity filtered I want to give a brief example. There was suboptimal treatment identified in Dylan’s hospital readmission. A healthcare professional involved in Dylan’s care wrote in an early statement draft that they “wished” they had stayed with him. I only saw that years later. That single sentence - an honest expression of reflection - meant a great deal. But it was removed from the final version. In my experience, the very things that support accountability - reflection, honesty, humanity - were either delayed or filtered. And when investigations feel defensive, opaque, or incomplete, the impact is not neutral…it causes secondary harm. It erodes trust. And it drives families to seek answers elsewhere. Final thoughts Accountability requires action. Because learning without visible ownership…can feel hollow. And accountability without learning achieves very little. And crucially: families should not have to drive that change themselves. If nothing visibly changes, and families are left to fight for answers or without a timely and sincere apology, then from a family perspective, it isn’t accountability. It’s just process, that is deeply insulting and guaranteed to compound harm. Related content Investigating harm with humanity - practical guidance for NHS investigators, clinical teams and legal representatives (by Corinne Cope) Destructive investigations: our experience of the investigation into our son's death Seeking better sepsis awareness in Wales (a film by Corinne and Laurence Cope) Dylan's Story (Welsh Ambulance Services University NHS Trust)

It is estimated that around 1 in 4 people with Myalgic Encephalomyelitis (ME) are severely or very severely affected. In this briefing paper (attached), campaign group #ThereForMe explain that due to a lack of specialist care, patients and their carers are facing immense challenges. The briefing outlines several patient safety risks, the Government response, recent changes, and a set of clear recommendations for safer care.

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.

Nurses are at the forefront of health and social care delivery. Often they are also leading, championing and driving change for patient safety. In this edition of our ‘Top picks’ series we celebrate some of the amazing work nurses are doing to prevent avoidable harm and improve patient and staff experience. The examples below include blogs, interviews and practical improvement projects. They have been shared with us by members of the hub, a global community of people passionate about patient safety. You can sign up to the hub here, it’s free and easy to do.  Safety tools, approaches and insights Implementing the aSSKINg pressure ulcer care bundle – a blog by Susan Martins Nurse-led use of technology to enable better care - Homerton University Hospital Action Card App Yellow kits - an innovation to reduce the risk of falls in Accident and Emergency departments Friends of African Nursing: Training perioperative nurses across Africa Measuring standards of care, not negative outcomes Nobody left behind: Improving the health of people with learning disabilities and reducing inequalities across primary care Tackling antibiotic underdosing: Interview with Ruth Dando, Head of Nursing for Theatres, Critical Care and Anaesthetics at BHRUHT Insights from a reducing falls project at the University Hospital Southampton How a catheter removal project improved care for patients while saving money and carbon emissions Safety culture How a simple newsletter can improve culture and communication within teams It’s time to look beyond perceived barriers to Family Integrated Care in the NICU and create a culture for change Safety Incident Supporting Our Staff (SISOS) Safety Chats Interviews with nurses In our series of Patient Safety Spotlight interviews, we talk to different people about their role and what motivates them to make health and social care safer. Martin Hogan, Lead Professional Nurse Advocate at Central London Community Healthcare NHS Trust Kathy Nabbie, Theatre Scrub Nurse Practitioner and Non-medical Surgical First Assistant Angela Hayes and Caroline Morris, Palliative Care Nurse Specialists at The Christie NHS Foundation Trust In an episode of our Speaking up for patient safety interview series, we spoke to Rebecca Wight, a nurse consultant practitioner. Rebecca talks about what happened to her when she tried to raise patient safety concerns about a colleague. Speaking up for patient safety: Rebecca Wight in conversation with Peter Duffy and Helen Hughes Could you share for safety? Are you a nurse with a passion for patient safety? Do you have insights, projects or practical tools and resources that could be shared for wider benefit? Perhaps you’d like to feature in one of our Spotlight interviews? You can get in touch with our hub editorial team by emailing us at [email protected]

Dr Claire Kilpatrick is a consultant to the World Health Organization (WHO) and has co-led on World Hand Hygiene Day since its launch. In this blog, Claire explains why she has always been actively involved in the campaign and what it means for patient safety.  World Hand Hygiene Day (WHHD) is a global campaign commemorated on 5 May every year, sharing targeted calls to action to support safer healthcare. Today marks its 18th year, and I have been privileged to be part of this campaign since its conception. So why do I continue to be an active supporter? The threat to patient safety Health care-associated infections, which are avoidable infections, continue to be a daily potential threat to patients in every hospital and clinic. Health care-associated infections: contribute to the antimicrobial resistance (AMR) burden cause immense suffering to patients, families and health workers can cause premature death and disability result in higher health care costs and hamper efforts to achieve high-quality care for all. Preventing harm A substantial proportion of these could, however, be prevented if hand hygiene and other infection prevention and control (IPC) actions were taken at the correct times. IPC and hand hygiene action provide a high return on investment within health system expenditure and have a significant positive effect on health outcomes for all countries. Hand hygiene and IPC best practices continue to be compromised by a substandard-built environment, including where inadequate provision of clean water, lack of effective sanitation, waste management and hygiene exist. We are seeing more of these issues arise - and not just in low and middle income countries but across some settings in high income countries where sanitation is a challenge. For WHHD 5 May 2026, the World Health Organization (WHO) has called on all those providing and supporting health care to refresh their action on hand hygiene and IPC, to ensure patient and health worker safety – because Action saves lives, as this year’s campaign slogan goes. Share your WHHD actions WHO supports campaign efforts every year by issuing a range of resources. Anyone can take part in the campaign using these or their own resources. And there is a way you can share your actions, either here on the hub (by commenting below – sign up first for free) or in the WHO IPC community of practice. Every year I collate examples from around the world and present them in the webinars! Action really does save lives - we can all be a part of WHHD.

Professor Rob Galloway is an Emergency Medicine Consultant and Founder of the charity Rare People. In this article, Rob talks about his daughter’s recent diagnosis of a rare genetic condition. He describes the barriers to safe and equitable care for people with rare diseases, and his hopes for future treatment development, supported by AI. On 7th July 2025, we were told our daughter was one of around 200 people in the world with an ultra-rare genetic brain condition - DeSanto-Shinawi syndrome (DESSH). I remember the date with uncomfortable clarity. For months before that conversation, I had reassured myself that everything would be fine. Frankie was slower than other children her age. She was late to crawl. Her words were few. There were subtle developmental differences, but nothing dramatic. I anchored to what felt safer: she had had meningitis as a baby, and developmental delay could be explained by that. Temporary. Understandable. Reversible. When bias tries to protect Even when experienced clinicians gently suggested there might be something more going on, I reframed their concerns in my own mind. I did not dismiss them openly, but internally I diluted their signal. Looking back, the cognitive biases are obvious. Anchoring bias fixed me to the meningitis explanation. Confirmation bias led me to search for reassuring signs and discount the rest. Optimism bias made the best-case scenario feel like the most probable one. Emotional bias did the rest. When it is your own child, the mind protects you. Individually rare, but collectively millions When the diagnosis came, it felt like a bomb going off in slow motion. The genetics were explained clearly. A change in a single letter of the WAC gene. One functioning copy instead of two. Reduced WAC protein, crucial in early brain development. Lifelong neurodevelopmental consequences. And then the hardest sentence - there is no medical treatment. Therapy and support, yes. But no drug to alter the biology. No realistic gene therapy on the horizon. For a condition this rare, commercial drug development is not viable. For families across the UK, the annual Rare Disease Day shines a light on this reality. Organised nationally by Genetic Alliance UK, it highlights the inequities faced by people with rare conditions: delayed diagnosis, fragmented care, limited research infrastructure and a system not designed for small numbers. Each condition is individually rare. Collectively, they affect millions. There are over 7,000 rare diseases. In that context, rarity is not marginal. It is structural. Multiple barriers to safe care Rare disease is a diagnostic safety issue, because children are often reassured repeatedly before referral. Developmental differences are attributed to variation. Early signals are softened by probability thinking. It is an equity issue, because funding and infrastructure follow prevalence and commercial viability. And it is an innovation issue, because rare disease is now reshaping how medicine thinks about treatment. After Frankie’s diagnosis, I immersed myself in the biology. I read the literature on WAC protein, studied animal models and tried to understand which pathways were disrupted and which might theoretically be adjusted. I connected with the DESSH Foundation and learned from the work of Professor Shinawi and others who had characterised the condition. The gene was known. The pathway was increasingly mapped. What was missing was treatment. Hope found in AI and existing drugs Then I came across the story of Matthew Might, a computer scientist whose son had an ultra-rare genetic condition. Rather than accepting that a genetic diagnosis was the end of the road, he treated it as the beginning. Using machine learning and large-scale biomedical data analysis, he interrogated genetic networks and drug databases. His work contributed to the development of the US National Institutes of Health Biomedical Data Translator, an open-source AI platform designed to connect genes, proteins, pathways and existing drugs. The question shifts from “Can we fix the gene?”—often impossible—to “Can we adjust the biological pathway using a safe, already licensed drug?” For rare diseases, this reframing is transformative. If a gene reduces the production of a protein, and that protein sits within a measurable pathway, then perhaps an existing medication could nudge that pathway in a favourable direction. Trialling treatments safely At Mayo Clinic, scientists including Laura Lambert and Dr Whitney Thompson began exploring whether this computational approach could be applied directly to children with specific rare conditions. In one child with DeSanto-Shinawi syndrome, AI-driven pathway analysis identified a licensed paediatric neurology drug that might plausibly increase WAC protein expression. Before prescribing anything, the team tested the drug in the cells taken from the child. WAC protein levels increased towards normal. It was not proof of cure. It was not certainty. But it was measurable biological change. After careful discussion and risk–benefit analysis, treatment was started. The developmental progress that followed was described by the child’s family as striking. It’s one person’s experience. Hope is not evidence. But hope grounded in measurable biology becomes hypothesis, and hypothesis becomes trial. Raising funds to reduce inequity The barrier is not plausibility. It is funding. Repurposed drugs are often off-patent. There is little commercial incentive to fund small, rigorous trials for conditions affecting a few hundred children worldwide. That is why Rare People – The Research Charity I set up was established. Our mission is to raise funds to support high-quality, properly designed clinical trials of AI-identified repurposed drugs for rare genetic neurodevelopmental conditions. The first funding priority is a formal clinical trial in DeSanto-Shinawi syndrome, with ethics approval in place in the United States and work underway to enable participation from children outside the US, including in the UK. Rare diseases can shine a light on wider possibilities Beyond one charity and one condition, something larger is emerging. Rare disease research is demonstrating the practical power of AI in medicine, not as hype but as structured, hypothesis-generating science. AI can interrogate millions of data points across gene networks and pharmacology, surfacing plausible connections that no individual clinician or researcher could reasonably synthesise alone. Used responsibly, with transparent governance, peer review and rigorous trial methodology, these tools can strengthen rather than threaten patient safety. Rare diseases are showing us that treatment may become more personalised, pathway-driven and responsive to measurable biological markers. They are challenging us to design systems that do not overlook small populations. They are exposing how cognitive bias operates quietly even in experienced clinicians. And they are demonstrating that when families, scientists and clinicians collaborate across borders, innovation can move faster than traditional commercial pathways allow. Frankie Frankie is a joyful, loving little girl. I would not change who she is. But I do want her to have the same opportunities, the same freedom to dream and the same access to scientific ambition as children with common conditions. Equity in healthcare must include those with the rarest diagnoses. If we build a system capable of recognising rare disease earlier, mitigating cognitive bias, and harnessing AI safely and ethically, we build a safer system for everyone. Photo shows Rob holding Frankie, both looking and smiling at the camera Share your insights Have you been affected by any of the issues raised in this blog? Do you or a loved one have a rare disease, or perhaps you work with people who do. If you have insights to share around rare diseases and patient safety, you can comment below (sign up first for free) or email the team at [email protected]

Last month, Public Policy Projects hosted their annual Patient Safety Forum in partnership with Patient Safety Learning. Held at the Royal College of Surgeons of England in London, it was attended by senior healthcare leaders, patient safety experts, representatives from the HealthTech industry, frontline healthcare professionals and patients. In this article, Patient Safety Learning reflects on the recurrent theme of safe systems and safe cultures.  Safe systems and cultures formed an integral theme throughout the Forum. Across the discussions, one message stood out clearly—safety cannot be something we focus on only when inspections are approaching or when things go wrong. It has to be built into everyday practice. One speaker framed this idea simply—every day should be a CQC (Care Quality Commission) day. Not because staff fear inspection, but because the systems around them consistently support safe care. When systems work well, healthcare professionals can deliver the care they want to give without constantly battling the structures and culture around them. Yet the conversations during the day also highlighted how far many parts of the system still have to go… Fatigue—“I’ll sleep when I’m dead” A significant discussion focused on staff fatigue and the culture that has developed around it in healthcare. Rather than being treated as an exceptional risk, fatigue is something that is just expected. In some cases it has become a misplaced badge of honour—evidence of dedication to the job. The example phrase of “I’ll sleep when I’m dead” resonated with many. A response no doubt born from a sense of utter powerlessness and lack of evidence that things will change. But normalising exhaustion creates unsafe systems for both staff and patients. Senior Nurse, Maggie Pacheco, shared an example from her own experience. After working six consecutive night shifts she was asked to take on a seventh. It did not feel safe, and during that shift a near miss occurred. Her story reflected a wider reality—systems that rely on exhausted staff are systems that increase risk. Sue Strudwick, Patient Safety Partner, highlighted that fatigue also shapes how care is delivered. When staff are constantly depleted, the system pushes them into reactive responses rather than preventative thinking. Creativity, reflection and improvement require energy and time, both of which fatigue removes. If healthcare is serious about safe systems, then fatigue cannot remain normalised. Staff support must be prioritised and built into the design of rotas, policies and expectations. Structural change is required, not symbolic gestures. Staff safety as a foundation of safe systems The forum also highlighted the importance of ensuring that staff themselves feel safe at work. Healthcare workers continue to face violence, harassment, racism and sexual abuse in some workplaces. These experiences damage morale, wellbeing and the ability to focus on patient care. A safe healthcare system cannot exist if the people delivering care do not feel physically and psychologically safe themselves. Protecting staff is therefore not separate from patient safety—it is part of it. When silence signals risk Another strong theme was the importance of psychological safety, particularly when it comes to speaking up and raising safety concerns. Silence in an organisation is sometimes interpreted as stability. In reality, it can indicate the opposite. Panellists described the presence of “shut up signals” within teams and organisations—signals that speaking up is unwelcome or risky. These signals may appear through dismissive responses, defensive leadership or negative consequences after raising concerns. Once staff recognise them, they quickly learn that raising issues carries a personal cost. The impact on patient safety is significant. When staff do not feel able to speak openly about risks or mistakes, organisations lose their early warning systems. Problems remain hidden until they escalate into serious harm. Language and responses after incidents play an important role here. Punitive reactions can discourage openness and suppress learning. Safe cultures, by contrast, make it easier for staff to raise concerns and share information when something goes wrong. Many of the guests in our Speaking up for patient safety interview series highlight the same issues surrounding psychologically unsafe cultures, and the devastating impact this can have on patients and staff. From blame to systems thinking Closely linked to speaking up is the way organisations respond when incidents occur. Healthcare is a complex system where harm rarely results from a single individual’s actions. During the forum, Ted Baker, Chair of the Health Services Safety Investigations Body (HSSIB), highlighted the importance of shifting the question from “who is to blame?” to “how did the system allow this to happen?” Frontline staff frequently create workarounds to protect patients when systems or policies do not function well in practice. These adaptations often keep services running safely despite structural weaknesses. If organisations focus only on individual blame, they risk overlooking the system conditions that allowed harm to occur in the first place. A systems approach enables learning and improvement rather than fear and defensiveness. Leadership and culture change Underlying many of these issues is the need for a different style of leadership. Creating safe systems requires leaders who listen, collaborate and engage with those delivering and receiving care. Solutions are more likely to be sustainable when they are developed with frontline staff and patients rather than imposed from above. Working with patients, the public and Patient Safety Partners were repeatedly highlighted as an important part of cultural change. A healthcare system that values patient experience alongside operational metrics is more likely to identify risks early and respond effectively. What organisations measure also shapes their culture. When success is defined solely through activity and productivity, the human experience of care can easily be overlooked. Balanced measures that include safety and experience are essential for creating systems that truly support quality care. Culture is the system The conversations at the Patient Safety Forum made clear that safety cannot be separated from culture. Policies and processes matter, but the everyday behaviours, expectations and norms within organisations matter just as much. Safe systems are created when staff are supported rather than exhausted, when concerns can be raised without fear, and when organisations seek to understand system failures rather than simply assign blame. Changing culture is never quick or easy. But if healthcare systems want to improve patient safety, they must be willing to challenge the norms that have become embedded in everyday practice and redesign systems that allow safe care to happen consistently. Share your insights Have you seen patient safety affected either positively or negatively by culture and systems? Share your thoughts on this article and the issues raised by commenting below (sign up first for free). Or you can email our editorial team at [email protected].