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Patient Partnership Week 2026
Patient_Safety_Learning posted an article in Patient engagement
Patient Partnership Week (29 June-3rd July 2026) is a moment to focus on a simple but powerful truth: healthcare works best when patients are treated as partners. Across the week, The Patients Association are bringing together patients, professionals, policymakers, and researchers to explore what meaningful partnership looks like in practice and why it matters, where progress is being made, and what still needs to change. Patient Partnership Week 2026 webinars Understanding the causes of health inequalities and the role of trust in improving outcomes 29th June 2026, 3:45 - 4:45pm Book now Unlocking patient engagement with the People and Communities guidelines 30th June 2026, 9 - 10am Book now Do patients’ goals, values, and preferences really shape their care? 30th June 2026, 4 - 5pm Book now Power to the people? The 10 Year Health Plan, one year on 1st July 2026, 11am - 12pm Book now Why prioritising patient trust increases the value of using technology and data to improve research and care 2nd July 2026, 12:30 - 1:30pm Book now Equity in access: tackling barriers to treatment and care 3rd July 2026, 10 - 11am Book now Getting through: fixing how NHS communicates with patients 3rd July 2026, 2 - 3pmBook now -
Content Article
In this blog, Jean Almond and Sam Freeman Carney from Parkinson’s UK explain how their new time critical medication dashboard is: exposing the cost of missed and delayed medication encouraging renewed focus on improvements reducing avoidable harm. This blog is part of a series on noncommunicable diseases, in support of World Patient Safety Day 2026. People with Parkinson’s rely on their medication, and need to take it on time. A delay of as little as 30 minutes can mean the difference between functioning well and being unable to move, walk, talk or swallow. Missing doses can lead to severe and irreversible harm to their health. People with Parkinson’s need to get their medication on time, every time. It is deeply concerning, then, that less than half (42%) of people with Parkinson’s admitted to hospital last year received their medication on time, every time. To help support the NHS in addressing this issue, Parkinson's UK worked with The Public Service Consultants (The PSC) to develop a ground-breaking new data dashboard, which shows the health economic benefits of improving time critical medication management for people with Parkinson's in hospitals. What does the time critical medication dashboard do? The time critical medication dashboard estimates the direct cost for hospitals and the impact on patient outcomes of time critical Parkinson’s medication delays and omissions. It does so at national, Integrated Care Board (ICB), NHS Trust and health board levels across England, Scotland, and Wales. The model considers impacts on key measures, including length of stay, staff time, mortality, re-admissions, and associated costs. The dashboard helps organisations evaluate different approaches to improve the timely administration of time critical medications — such as self-administration, staff training, or e-prescribing — by modelling the cost savings gained from implementing improvements. Real-world success and traction The dashboard has already: achieved over 3,500 views, primarily from healthcare professionals been shared through the NHS England’s three-year medicines safety improvement programme focused on time critical medication been promoted by the Royal College of Emergency Medicine (RCEM) through their time critical medication quality improvement programme in Emergency Departments. Frontline teams are already utilising the tool to build local business cases for time critical medication quality improvement projects to improve patient safety. As one NHS Trust shared: "When we found the Dashboard, it helped us to show in real terms, financial terms, the impact missed and delayed doses of [Parkinson’s] medications were going to have on our Trust. We were able to use this to gain traction and benchmark our starting position. We hope to see a significant improvement in the dashboard as we work on our [Quality Improvement Programme]." The dashboard has supercharged our work at Parkinson's UK, opening doors with previously unengaged hospitals and shifting conversations from abstract risks to concrete, localised numbers. Award winning Our dashboard won the award for the ‘Most effective contribution to improving care for those with long term conditions’ at the HSJ Partnership Awards in March 2026. This is further recognition that our tool is helping address an avoidable, recurring patient safety issue and supporting the NHS in making the urgent improvements needed across the system. How to find out more and take action Alongside the dashboard, we provide a comprehensive suite of free resources to help health systems improve how they manage time critical Parkinson’s medication: Our 'Time critical medication: 10 recommendations for your hospital', developed by NHS health professionals living with Parkinson's, enable NHS organisations to support timely, safe and appropriate medicine management for people with Parkinson's. Our suite of resources and learning supports hospital teams to deliver time critical medication to people with Parkinson's. No one with Parkinson’s should fear going into hospital because they can’t get the medication they rely on. Our dashboard is a critical new resource to show how hospitals can and need to go further. We urge health professionals, NHS Trusts, Health Boards and Integrated Care Boards to use this tool and transform their management of time critical Parkinson’s medication. Share your insights What is your experience of time critical medication? As a patient or a clinician? You can comment below (sign up first for free) or get in touch with the Patient Safety Learning hub team at [email protected].- Posted
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On Thursday 17 September 2026 the seventh annual World Patient Safety Day takes place, focused on the theme of “Safe care for noncommunicable diseases”. In this blog we explain what noncommunicable diseases are, and why they are a patient safety priority. World Patient Safety Day encourages us to reflect on some of the most persistent and complex challenges facing health systems globally. Some of the most significant of these relate to noncommunicable diseases (NCDs). What are NCDs? NCDs, simply put, are long-term diseases that are not passed from person to person. These account for a significant proportion of illness, disability and premature mortality. NCDs include: cardiovascular diseases (such as heart attacks and hypertension) cancer chronic respiratory diseases (including COPD and asthma) diabetes neurological conditions genetic conditions. Unlike infectious diseases, which are caused by pathogens and can spread between individuals, NCDs are typically the result of a combination of genetic, physiological, environmental and behavioural factors.[1] Common risk factors include tobacco use, unhealthy diets, physical inactivity and harmful use of alcohol. Impact of NCDs NCDs are one of the leading causes of death worldwide. Global health estimates from the World Health Organization (WHO) indicate that over 43 million people were killed by NCDs in 2021.[2] More than 18 million NCD deaths were among people younger than 70 years of age. A recently published report from the Organisation for Economic Co-operation and Development (OECD) assessed the health and economic benefits of tackling NCDs.[3] It highlighted that: Despite decades of national efforts, NCD rates have continued to rise between 1990 and 2023. Among members of the OECD (high-income and middle-income countries), if there were no NCDs, health expenditure would be about 40% lower. Tackling and reducing the rate of NCDs is one of the biggest global health challenges we face. NCDs and patient safety While much of the discourse around NCDs focuses on prevention and public health interventions, there is an equally important patient safety dimension that warrants attention. One of the core objectives of this year’s World Patient Safety Day is to raise awareness of the patient safety challenges associated with NCDs throughout the course of a patient’s care and treatment.[4] People living with NCDs often require long-term care, multiple medications and interactions with different parts of the healthcare system. This complexity increases the risk of safety incidents such as medication errors, delayed diagnoses or fragmented care. From a patient safety perspective, NCDs highlight the need for coordinated, person-centred care. Patients with multiple conditions may see several specialists, each with their own treatment plans, which can sometimes conflict or lead to unintended consequences. Ensuring clear communication across healthcare teams, and with patients themselves, is critical to reducing harm. Health inequalities also play a significant role. In the UK and globally, NCDs disproportionately affect people in more deprived communities. These groups may face barriers to accessing care, lower health literacy and increased exposure to risk factors. Addressing these disparities is not only a matter of public health, but of patient safety and equity.[5] Role of patients and families Raising awareness of and tackling the patient safety issues associated with NCDs also requires recognition of the important role that patients and families can play. The promotion of meaningful engagement of people living with NCDs and their communities is a key objective of this year’s World Patient Safety Day.[4] People living with NCDs often develop a deep understanding of their conditions and can be valuable partners in identifying risks and preventing harm. Encouraging shared decision-making and supporting patients to speak up about concerns are key components of safer care. Looking ahead to World Patient Safety Day, it is clear that tackling NCDs is not just about managing long-term conditions—it is about designing systems that are safer, more integrated and more responsive to the needs of those who use them. This requires collaboration across sectors, sustained investment and a commitment to learning from both success and failure. By placing patient safety at the heart of NCD care, we can move towards a healthcare system that not only treats illness and reduces healthcare expenditure but actively works to prevent harm and improve quality of life for millions of people. Share your views and experience on the hub Do you have experiences or views around the theme of this year’s World Patient Safety Day that you would like to share? You can share your thoughts with us by commenting below (sign up here for free first), submitting a blog, or by emailing us at [email protected]. References 1. WHO. Noncommunicable diseases. 25 December 2025. 2. WHO. The Global Health Observatory – Noncommunicable diseases: Mortality. Last accessed 11 May 2026. 3. OECD. The Health and Economic Benefits of Tackling Non-Communicable Diseases. 15 April 2026. 4. Patient Safety Learning. World Patient Safety Day 2026. 30 March 2026. 5. Department of Health and Social Care. 10 Year Health Plan for England: fit for the future. 3 July 2025. -
Content Article
Join the Patient Safety Partners Network
Patient_Safety_Learning posted an article in Patient Safety Learning
Patient Safety Partners (PSPs) are being recruited by NHS organisations across England as part of NHS England’s Framework for involving patients in patient safety. This page explains: What a Patient Safety Partner is. What the Patient Safety Partners Network is. How to join the Network. How members are benefiting. What is a Patient Safety Partner? Patient Safety Partners can be patients, relatives, carers or other members of the public who want to support and contribute to a healthcare organisation’s governance and management processes for patient safety. What is the Patient Safety Partners Network (PSPN)? The Patient Safety Partners Network is for Patient Safety Partners, in both paid and voluntary positions within NHS organisations, whose role is to improve patient safety. It is hosted on the hub by the charity Patient Safety Learning, who provide a monthly drop-in session, sometimes with guests, to talk through topical and relevant issues. This facilitates information sharing, peer support and safe space for discussion. The Network has over 200 members. How can I join the Network? Membership is open to people who are: UK hub members (it’s free) in a health or care service provider organisation in a Patient Safety Partner role. Membership is open to PSPs from Integrated Care Boards, mental health, ambulance, acute and community trusts, as well those from NHS England, independent providers and the third sector. You can join by signing up to the hub today. When putting in your details, please tick the Patient Safety Partners Network (PSPN) option in the ‘Join a private group’ section. If you are already a member of the hub, please email [email protected]. I am a Patient Safety Partner – how will I benefit from joining the Network? We asked some of the Patient Safety Partners who are members of the Network to share their thoughts… “The PSP network has given me the confidence to challenge some things at my Trust and reassured me in terms of what I can be doing and how I can be positively involved in patient safety.” Sue Strudwick, Patient Safety Partner at Kingston and Richmond NHS Foundation Trust. “I have learned so much in my time as a network member and the generous advice and support I have received from colleagues is worth its weight in gold, I really recommend you give it a go- give it a try and I guarantee you won’t be disappointed.” Marion Endicott, Patient Safety Partner at South West London Integrated Care Board. “The PSPN is valuable and important to me as a sounding board & shared experience forum, providing support with a shared goal in promoting patient safety.” Joanne Foley, Patient Safety Partner at NHS Essex Integrated Care Board. Related resources Patient Safety Partners: a toolkit of resources Letter from Patient Safety Partners calls for fatigue to be added to organisational risk registers (20 January 2026) -
Content Article
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- Posted
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15 top picks: Men's health
Patient_Safety_Learning posted an article in Men's health
At Patient Safety Learning we believe that sharing insights and learning is vital to improving outcomes and reducing harm. That’s why we created the hub; providing a space for people to come together and share their experiences, resources and good practice examples. We have collated 15 resources relating to men's health, including information about male cancers, men's mental health, how to engage men earlier and insights around the impact of traditional ideas of masculinity on patient safety. *Trigger warning: some of the content below focuses on suicide. 1 Men's Health Strategy for England This document sets out the government’s 10-year strategy for men’s health in England. It details the government’s vision for men’s health over the next 10 years and actions they are taking now to improve the health and wellbeing of all men and boys in England. 2 Men’s Health: How to improve health outcomes, knowledge, and behaviours This report sets out the findings of new research conducted by Healthwatch England to inform the Government’s first-ever men’s health strategy for England. They commissioned a nationally representative poll of 3,575 men aged 18+ in June 2025 and also drew on local Healthwatch engagement, with men from diverse backgrounds, spanning a wide range of ages, ethnicities, occupations, and areas. 3 Men’s health: The lives of men in our communities Men in England are facing “a silent health crisis”, dying nearly four years earlier than women, while suffering disproportionately higher rates of cancers, heart disease and type 2 diabetes, according to a report by the Local Government Association. They are urging the Government to implement a men's health strategy similar to the women's health strategy of 2022. It wants men’s health to be recognised as “a national concern”. 4 Overcoming the barriers to engaging with prostate cancer Orchid is the UK’s leading charity for those affected by male cancer. In this interview, we speak to Ali Orhan, Chief Executive and Director of their Overcoming the Barriers to Engaging with Prostate Cancer project. Ali tells us how they are working alongside a network of volunteer community champions to improve awareness, support better outcomes and reduce health inequalities. 5 Prostate Cancer UK: risk checker Prostate cancer is the most common cancer in men, but most men with early prostate cancer don’t have symptoms. Use this risk checker to find out what you should do. 6 Samaritans Handbook: Engaging men earlier: a guide to service design This handbook from the Samaritans provides a set of principles upon which wellbeing initiatives for men should be based, drawn from what men have said is important to them. By following these principles, wellbeing initiatives are more likely to be effective for, and appeal to, men going through tough times before reaching crisis point. 7 Infopool prostate cancer patient resource This patient resource created by Prostate Cancer Research aims to equip patients and the public with information about prostate cancer. It contains information on testing and diagnosis, treatment choices, living with side effects, and clinical trials. 8 Men's Health - How can we take action? Here are our top 5 things to know and do Top tips for men on keeping healthy and advice on prostate and testicular cancer. 9 Prostate Cancer UK: Best practice pathway Developed to support healthcare professionals at the front line of prostate cancer diagnosis and care, Prostate Cancer UK's Best Practice Pathway uses easy to follow flowcharts to guide healthcare professionals deliver best practice diagnosis, treatment and support. 10 HSSIB report: Management of acute onset testicular pain This investigation reviewed the diagnostic and treatment pathway for testicular torsion. There was a predominant focus on delays and the human factors associated with the pathway. The investigation identified system-wide recommendations designed to prevent delays to the identification and treatment of testicular torsion happening in the future. 11 Prostate cancer: getting information and support This leaflet helps signpost people to support and information about prostate cancer, both nationally and regionally. 12 Why harmful gender stereotypes surrounding men’s approaches towards their feelings need challenging This blog explores men's mental health – how men are reluctant to seek support when they are struggling, why the suicide rate is so high, what initiatives exist to encourage men to seek help and what more could be done. 13 King's Fund blog: Inequalities in men’s health: why are they not being addressed? Almost half of England’s population is male, yet inequalities in men’s health seldom get specific attention. The women’s health strategy for England shone a light on the health care needs of girls and women through their life course, highlighting areas specific to their health – such as maternity and the menopause – and inequalities in health outcomes. But the wide, and widening, health inequalities experienced by men also require focus. 14 The incredibly obvious thing you should do about painful testicles Watch this short film about what to do if you experience pain in your testicle/s, by Cardiff Fertility Studies and the British Fertility Society, made in partnership with Orchid. 15 An Unfilled Prescription: Tapping Pharmacy's Potential to Boost Men's Health This report from the Men's Health Forum examines the role of community pharmacy in improving men’s health in the UK, the theme of Men’s Health Week 2026. The report sets out a five-point plan that pharmacies should adopt to become a male-friendly pharmacy, which encourages more men to engage. Share your insights and experiences Have you, or a loved one, experienced any of the issues raised in this blog? Would you like to share your insights to help improve outcomes in men's health? Perhaps you work in men's health and can share some of the barriers to safe care and what you believe needs to change to improve outcomes. You can share your thoughts in the comments below (sign up first for free) or email our team at [email protected].- Posted
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My hysteroscopy experience felt like gold standard
Patient_Safety_Learning posted an article in Women's health
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. -
Content Article
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.- Posted
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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- Posted
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Exploring bias in handover: a free learning resource
Patient_Safety_Learning posted an article in Handover
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]. -
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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) -
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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. -
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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.- Posted
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Top picks: Nurses championing patient safety
Patient_Safety_Learning posted an article in Nurses
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]- Posted
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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. -
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From diagnosis to system change: what rare disease is teaching us about safety, bias and AI
Patient_Safety_Learning commented on Patient_Safety_Learning's article in Rare diseases
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Hi @Rosanna Hunt if you would like to share more detail about your project, we may be able to add it to a page on the hub and share your request. You can email us at [email protected] if this is of interest.- Posted
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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]- Posted
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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].- Posted
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Martha’s Rule is a patient safety initiative to support the early detection of deterioration by ensuring the concerns of patients, families, carers and staff are listened to and acted upon. It has been developed in response to the death of Martha Mills and other cases related to the management of deterioration. Central to Martha’s Rule is the right for patients, families and carers to request a rapid review if they are worried that a patient’s condition is getting worse and their concerns are not being responded to. In this video, Dr Ronnie Cheung, consultant paediatrician, shares his experience of Martha’s Rule. -
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Martha’s Rule is a patient safety initiative to support the early detection of deterioration by ensuring the concerns of patients, families, carers and staff are listened to and acted upon. It has been developed in response to the death of Martha Mills and other cases related to the management of deterioration. Central to Martha’s Rule is the right for patients, families and carers to request a rapid review if they are worried that a patient’s condition is getting worse and their concerns are not being responded to. In this video, Martha's mother explains Martha's story. -
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Martha’s Rule is a patient safety initiative to support the early detection of deterioration by ensuring the concerns of patients, families, carers and staff are listened to and acted upon. It has been developed in response to the death of Martha Mills and other cases related to the management of deterioration. Central to Martha’s Rule is the right for patients, families and carers to request a rapid review if they are worried that a patient’s condition is getting worse and their concerns are not being responded to. In this video, nurses Jo and Anna share their patient experience of Martha’s Rule. -
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In December 2024, in response to growing concerns about medicines shortages in the UK, the Royal Pharmaceutical Society (RPS) published Medicines Shortages: Solutions for Empty Shelves. The report provides a comprehensive assessment of the causes of medicines shortages, their impact on patients and healthcare professionals, and what more could be done to mitigate and manage them. The report was developed with healthcare professionals, patients and stakeholders across the medicines supply chain, its recommendations stressed the urgency of work to strengthen the UK’s resilience to medicines shortages, reduce pressure on healthcare teams and ensure patients can access the medicines they need. This ‘one year on’ report provides an overview of progress in line with those recommendations, noting where improvements have occurred, where further work might accelerate progress, and highlighting areas of concern. -
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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 a discussion at this event between a panel of experts to discuss the ambitions set out in the NHS 10 Year Plan and what it means for patient voice and patient safety. At the heart of the discussion was a simple but important question: are patients truly at the centre of the system, and how do we make sure their voices lead to meaningful change? A positive shift towards patient choice The NHS 10 Year Plan places strong emphasis on patient choice, agency and feedback. These commitments were widely welcomed by the panel. For many working in patient safety, the idea that patients should be central to their own care has long been a core principle. Giving patients greater choice and making it easier for them to share their experiences is a positive step. It reflects years of calls for healthcare systems to listen more carefully to the people they serve. However, some participants noted that, despite the focus on patient voice, patients themselves were not included on the panel. While there were patients on other panels during the conference, there was surprise that a patient safety partner or patient safety advocate had not been invited to contribute directly to the discussion. This absence highlighted a key tension: even when patient perspectives are recognised as vital, they are not always embedded in the decision-making or discussion processes themselves. However, while the overall direction of travel is encouraging, the discussion also highlighted areas where the 10 Year Plan could go further. What’s missing from the conversation? Although the plan speaks clearly about choice and feedback, it is less explicit about patient innovation, co-production and the experiences of harmed patients. These are crucial areas in patient safety. Patients and families often hold unique insights into where care has gone wrong and how it could be improved. When those perspectives are included early in improvement work, they can shape safer systems. Panel members felt these aspects need clearer recognition if the ambition of truly patient-centred care is to be realised. Trust, independence and the Dash Review The conversation also touched on Dr Penny Dash’s review of the patient safety landscape, published last year, shortly after the 10 Year Plan. The review included a number of proposals with direct implications for the visibility and independence of patient voice at a national and system level. This included plans to bring patient feedback mechanisms “in house” within a new patient experience directorate and moving functions of Local Healthwatch into Integrated Care Boards and providers. While this may improve efficiency, it raised concerns about independence and trust. If feedback systems are managed solely by the organisations being complained about, patients and families may feel less safe raising concerns. Independence plays an important role in ensuring transparency and confidence that concerns will be taken seriously. Maintaining that trust is essential if feedback is to remain open, honest and useful for learning. Are patient experiences just “stories”? Language became an unexpected but important theme. Patient experiences are often referred to as “stories”. While this language can humanise healthcare and highlight the real impact of harm, the panel reflected on whether the term always serves patients well. Referring to experiences as stories can unintentionally imply anecdote rather than evidence, potentially diminishing the seriousness of harm. The panel was asked a simple question: which patient story has actually led to meaningful change? When change only happens after escalation Paula Sussex, the Parliamentary and Health Service Ombudsman (PHSO), shared an example of a complaint that reached Ombudsman level. In that case, input from both the patient and the organisation led to significant improvements. It demonstrated the power of the patient voice when it is truly heard. But it also raised an uncomfortable question: should change only happen once a complaint escalates to that level? If meaningful improvements rely on escalation, it suggests earlier opportunities to listen and learn may have been missed. A similar example was shared by Norma Findley from Seating Matters, who described how a large legal claim had acted as the catalyst for organisational change. Again, the discussion returned to the same point: should it really require litigation and serious harm before learning happens? Too often, patient voices seem to gain traction only once they enter a formal or adversarial process. A more proactive model in maternity safety Louise Pye from the Maternity and Newborn Safety Investigations (MNSI) programme highlighted a different approach through their work around HEART and HEWS: HEWS: Health Equity Warning Score – this has been developed to classify a person’s risk of experiencing barriers to health equity. HEART: Health Equity Assessment and Resource Toolkit – this goes beyond HEWS and provides prompts and questions in relation to a person’s protected equality characteristics and social determinants. By using HEART and HEWS, MNSI aim to ensure that their investigators make safety recommendations and prompts to NHS trusts that focus on health equity to ensure that they consider personalisation in all areas of maternity care. Here, engagement with families is built into the investigative process from the beginning, rather than being added afterwards. Louise suggested that healthcare needs a clear and consistent model for working with patients and families — one that is embedded, compassionate and applied across organisations. The importance of co-production Chris Graham from Picker emphasised the value of co-production and involving people with lived experience directly in improvement work. Patient feedback can take many forms: Structured feedback Solicited surveys Systematic data collection Each serves a different purpose. For example, feedback collected for regulatory assurance may be very different from feedback intended to inform service redesign. Being clear about why feedback is collected makes it far more useful. Complaints as a gift Returning to the role of complaints, Paula Sussex explained how the PHSO analyses complaint data to identify recurring themes and systemic issues across healthcare. She encouraged organisations to view complaints as a gift, an opportunity to learn and improve rather than something to fear. For this to work, however, organisations must demonstrate visible change as a result of what they hear. Listening alone is not enough. Digital data and the risk of losing the human story The panel also explored the growing role of digital analysis. Large datasets can now be analysed quickly to identify patterns in patient feedback at scale. This can be powerful, helping organisations spot trends that might otherwise be missed. But there is also a risk. When experiences are reduced to coded data points, the emotional and relational context behind them can disappear. The challenge is to balance efficient analysis with preserving the human meaning behind patient experiences. Learning from social media Norma Findley also highlighted the potential value of social media communities, such as Facebook groups, as a source of patient feedback. Increasingly, patients are sharing experiences outside formal healthcare channels. These spaces can offer valuable insights into patient concerns, expectations and emerging issues. Used responsibly, they could help organisations become more responsive and transparent. From listening to action Across the discussion, one message came through clearly: Patients want to be heard — but more importantly, they want to see change. Acknowledging feedback is important, but what builds trust is demonstrable improvement. Paula Sussex also noted that the statutory duty of candour, while well established in policy, is not yet fully embedded in practice. This reflects a broader challenge in healthcare: the gap between policy intentions and lived experience. Key themes from the discussion Several key themes emerged from the forum: Escalation as a catalyst for change - Improvements often occur only once complaints reach Ombudsman level or result in legal action. Independence and trust - Bringing feedback systems in-house could risk reducing perceived independence. Language and framing - The term “patient stories” can humanise experiences but may unintentionally minimise harm. Data versus narrative - Digital analysis offers scale but risks losing context if not balanced with human insight. Co-production and lived experience - Genuine partnership requires structured engagement with patients and families. From feedback to action - Patients want to see tangible improvement, not acknowledgement alone. The implementation gap - Commitments such as the duty of candour are still not consistently realised in practice. A shared commitment to doing better What stood out most from the discussion was a shared commitment to strengthening patient voice and patient safety. The conversation recognised that progress has been made, but also that structural, cultural and linguistic shifts are still needed. Rather than becoming influential only once harm has escalated into a formal complaint or legal process, the patient voice is most powerful when it is: embedded early in improvement work treated with respect and seriousness analysed thoughtfully and linked directly to visible change. If the ambitions of the NHS 10 Year Plan are to be realised, ensuring that patient voices lead to meaningful improvement will remain one of the most important challenges ahead. Share your insights Have you seen the impact of the patient voice in patient safety? 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]. Find out more about the Patient Safety Forum 2026 You can read more about different discussions and panel sessions at this year’s event in the below: Designing AI with patient safety at its core: Reflections from the Patient Safety Forum 2026 Safe systems, safe cultures: reflections from the Patient Safety Forum 2026- Posted
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The national survey of patient safety partners is now live Researchers from THIS Institute are inviting patient safety partners across the NHS to take part in a new survey exploring how the role is developing. This national survey will help them understand: Who is taking on the role What patient safety partners do in practice How the role is evolving and how it can be supported Your contribution will play an important part in building evidence to support patient safety roles nationally. The survey closes on 15 June 2026. 👉 Take part here: https://www.thiscovery.org/project/patient-safety-partner-t2 -
Content Article
There are many different types of bias, some more commonly known than others. This resource has been created to help explain different types of bias and to provide some practical examples of how some of these can impact patient safety. The content has been developed following a Patient Safety Education Network session led by Samia Sakuma, lead Quality Governance Lead for Paediatrics at West Hertfordshire Teaching Hospitals NHS Trust. Types of bias and practical examples Anchoring bias – Sticking with your initial impression. Example: "I was right the last time". Aggregate bias –- Assuming evidence from population groups applies equally to an individual patient. Example one: A frailty pathway recommends conservative management for older adults with pneumonia. An individual patient who is usually very active and independent is not considered for escalation early, despite clinical deterioration. Example two: Pain assessment guidance based on average recovery patterns following surgery leads staff to underestimate significant postoperative pain experienced by one patient whose response differs from expected norms. Ascertainment bias – Judgements influenced by prior expectations or contextual information. Example one: A patient known to attend frequently with abdominal pain is initially assessed as having another functional episode, delaying recognition of acute appendicitis. Example two: Documentation describing a patient as “anxious” influences subsequent assessments, resulting in physical symptoms initially being attributed to anxiety rather than investigated further. Availability bias – Where people overestimate the importance or likelihood of events based on how easily examples come to mind. Example: A patient comes in with flu-like symptoms, it must be flu as its flu season. The patient had strep A infection that was unresolved but this was not treated as the flu diagnosis took precedence. Base rate neglect – Ignoring how common or uncommon conditions are when making decisions. Example one: A a rare neurological diagnosis is prioritised in a patient with headache, while more common causes such as medication side effects or dehydration are considered later. Example two: Chest pain in a young adult is assumed to be musculoskeletal without structured assessment, despite cardiac conditions still occurring at a measurable background rate. Commission bias – Preference for action rather than watchful waiting, even when intervention may not help. Example one: antibiotics are prescribed for likely viral infection because active treatment feels safer than observation, exposing the patient to avoidable side effects. Example two: Additional imaging is requested despite low clinical indication, contributing to unnecessary radiation exposure and incidental findings. Confirmation bias/belief bias – the tendency to search for, interpret, favour and recall information in a way that confirms or supports one's prior beliefs or values or decisions. Example: Labelling a child at handover as a ‘drama queen’, thus anything that child does is interpreted through this lens. The child’s abnormal saturations were felt due to her being anxious and hyperventilating, however there was a genuine medical nonanxiety related need for oxygen, the child then had a respiratory arrest. Diagnostic momentum – A diagnostic label becomes accepted and passed along without reassessment. Example one: A patient admitted with a presumed urinary tract infection continues to be treated for this diagnosis despite lack of supporting results, delaying identification of sepsis from another source. Example two: An ambulance handover describing “stroke” leads teams to continue that pathway even after features inconsistent with stroke emerge. Framing effect – Where people’s decisions are influenced more by how information is presented than by the information itself. Example: What order do you present things. The first things you discuss are what stick in peoples minds. The language you use also frames something in a particular way. Calling a follow up protocol “Active surveillance” as opposed to “watchful waiting” can really make a big difference in whether people agree to this or not. Gamblers fallacy – The mistaken belief that past random events can influence the probability of future independent events. Example: sepsis is relatively rare. If you have treated two patients in a row with sepsis, when you see a third patient you don’t believe the sequence can continue so you will go out of your way to find a diagnosis that isn’t sepsis, whereas each patient should be assessed afresh. Over valuing bias/endowment effect – Causes individuals to overvalue what they own, often irrationally. Example: Spending time reading in depth articles on a medical condition such as mesenteric adenitis and reviewing guidance on managing this. Therefore diagnosing patient as having mesenteric adenitis because of the time expended on gathering and reviewing information on this thereby potentially missing another diagnosis. Psych-out error - Physical illness incorrectly attributed to mental health or behavioural causes. Example one: Agitation in a patient with known mental health needs is attributed to psychiatric relapse before delirium secondary to infection is recognised. Example two: Shortness of breath in a patient with anxiety history is initially managed as panic symptoms, delaying diagnosis of pulmonary embolism. Sutton’s slip – Focusing on the most obvious or common explanation without adequate verification. Example one: a patient with recurrent falls is assumed to have mechanical instability, while medication-related hypotension is identified later. Example two: Hyperglycaemia in a person with diabetes is attributed to poor control, delaying recognition of steroid-induced glucose elevation. Visceral bias – Emotional reactions influencing clinical judgement. Example one: Challenging interactions during previous admissions unintentionally influence the urgency of reassessment when the patient re-attends unwell. Example two: A highly likeable patient’s reassurance that they feel “fine” reduces concern despite abnormal observations requiring escalation. Yin–yang out – Belief that a patient has already had extensive assessment, so further evaluation is unlikely to help. Example one: A patient with multiple previous admissions for chest pain receives limited reassessment because earlier investigations were normal, despite new symptoms. Example two: Repeated attendance with headaches leads to reduced diagnostic curiosity when new neurological signs develop. Zebra retreat – Avoiding consideration of rare diagnoses after being discouraged or corrected previously. Example one: After earlier feedback about over-investigating rare conditions, clinicians hesitate to pursue an uncommon metabolic disorder despite suggestive features. Example two: A rare drug reaction is not revisited because previous similar concerns were felt to be unlikely, delaying recognition when it genuinely occurs.