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Jenny, my mother Jenny was a much-admired mother, grandmother and friend. She had a strong determination and an uplifting zest for life; she was loyal and we, her family, miss her. Her passions were many, from her love of travel to places of geographic interest, to line-dancing and amassing a curious Tupperware collection. Jenny attended university in the 1960s, a time when women from her background were discouraged from attending further education. Having graduated, Jenny then worked for British Leyland and later moved to Germany with my father where she taught English. During which time she had me. Jenny returned alone with me to England in 1985, to no home or job. Her ability and determination ensured she quickly got a teaching role, then a home – she subsequently taught GCSE and A-Level for 27 years at Lewes Old Grammar School, living in the Brighton area that she called home. Unfortunately, my mother, Jenny, passed away prematurely from a pulmonary embolism in February 2022 following misdiagnosis. I am seeking to help derive a positive learning from her death and, unfortunately, many other similar recent cases. While she was 74, an extra 5 or 10 years would have made a great difference to our family – it has deprived my mother of time with her first grandchild, my daughter, who was born just weeks earlier in January 2022. A catalogue of errors taking away valuable years’ left of life Jenny, my mum, should likely not, medically speaking, have passed away on Sunday 27 February 2022 of a pulmonary embolism – a blood clot in her vein passing to her lung causing heart failure. Studies indicate that the death rate for diagnosed and treated pulmonary embolism is 8%.[1] She had never smoked in her life, exercised regularly and all had appeared well with her health at the start of 2022. She had received a letter from her GP granting her travel insurance that would have allowed her to travel to the Greek Islands and, later in the year, to the Baltic countries. In early February, despite exhibiting risk factors and sudden symptoms, including fainting and collapse, my mother was wrongly misdiagnosed in the care of an emergency department as having had a heart attack. She was then needlessly fitted with a stent. Upon her discharge from hospital her condition got worse again at home – she was dying – and yet she was reassured by a cardiac nurse who, over the phone, missed the signs of shortness of breath, chest pain (in the centre of the chest) and of fainting. The nurse advised that if the symptoms continued that my mother should call her GP. My mother never made her GP appointment. I don’t want this to continue to happen to other family’s loved ones. This was entirely avoidable. Jenny was waiting in A&E for over 12 hours and there were nine independent decision-making points where at any one of these, pulmonary embolism could and should, in totality, have been diagnosed. Pulmonary embolism was only discovered in an autopsy, and yet she exhibited symptoms consistent with 90% of pulmonary embolism patients.[2] A lack of learning forcing me to act Upon my complaint to the NHS trust that oversaw my mother’s care, a Serious Incident Report was commissioned by the trust and an inquest set up. However, in my opinion, the NHS trust appears to have exhibited a ‘shrug of the shoulders, these things happen conclusion’, inhibiting sufficient learning from my mother’s case. NHS England’s 2015 Serious Incident Framework was in operation at the time of the trust’s Serious Incident Report,[3] encouraging hospital trusts to appoint independent reviewers to ensure objectivity. However, the subject-matter experts chosen to contribute to the report were all involved with the original care of my mother and, hence, objectivity of the report was lost. The frustration I feel at the loss of my mother has then been compounded by the intransigence of the NHS trust that oversaw my mother’s case, and then the discovery that my mother’s case was not alone. Indeed, far from it. Image: Tim with his wife and little girl. References Belohlavek J, Dytrych V, Linhart A. Pulmonary Embolism, Part I: Epidemiology, Risk Factors and Risk Stratification, Pathophysiology, Clinical Presentation, Diagnosis and Nonthrombotic Pulmonary Embolism. Experimental and Clinical Cardiology 2013: 18; 129-138. The Task Force for the Diagnosis and Management of Acute Pulmonary Embolism of the European Society of Cardiology (ESC), 2008. NHS England. Serious Incident Report Framework, 2015. Read the recently published, independent report Tim authored: Independent Review of Pulmonary Embolism fatalities in England & Wales - recent trends, excess deaths, their causes and risk management concerns Further reading Press release (Patient Safety Learning) House of Commons Debate - Pulmonary Embolisms: Diagnosis (30 November 2022) Royal College of Radiologists: Briefing for pulmonary embolism debate (November 2022) HSIB - Clinical decision making: diagnosis of pulmonary embolism in emergency departments (24 March 2022)

Key findings from the report: There were 400 excess deaths attributable to pulmonary embolism misdiagnosis from March 2021 to April 2022 in England and Wales. In parts of England and Wales the number of deaths due to pulmonary embolism were almost 3 times the national average. The clinical guidelines and diagnostic processes used in England and Wales are out of step with our European counterparts and, in Jenny’s case, were not used correctly. Clinical teams too often lack the training, expertise and/or equipment to deliver safe and effective pulmonary embolism care. Commenting on the report, Tim Edwards said: "My research found that there are hundreds of people who, like my mother Jenny, died from pulmonary embolism following misdiagnosis. It's vital we learn from these deaths, and the errors that have occurred, so we can take action to improve pulmonary embolism care. By publishing this report, I hope to start a dialogue that leads to positive change, so others do not suffer the loss of a loved one as we have." Helen Hughes, Chief Executive of Patient Safety Learning said: “This new report highlights serious patient safety concerns relating to the diagnosis of pulmonary embolisms. Urgent action is now needed to ensure that guidelines and diagnostic processes are up to date and that clinicians have the resources they need to deliver safe and effective care. It is also vital that we increase awareness of the key symptoms of pulmonary embolisms among both healthcare professionals and the wider public. Patient Safety Learning are proud to be supporting Tim and his campaign for improvement in pulmonary embolism care and to reduce avoidable deaths.” Calls for action The report includes nine calls for action to improve pulmonary embolism care: 1 Raise the level of suspicion for pulmonary embolism – given a surge in PE-related deaths, greater awareness amongst frontline emergency department and other clinicians of the importance of considering the possibility of PE during their diagnostic decision-making. More general training alongside specialisms and simulation to support practice and development of decision-making skills. Could the NEWS scoring system be calibrated to consider the aggregate of scores over a 5-6 hour period is one area for further discussion. 2 Buy-in for clinical guidelines - clinical guidance is only as valuable as, firstly, its validity and there is evidence that the NHS is not applying pulmonary embolism guidance considered best practice in comparable European countries and, secondly, adherence, which is evidenced as inconsistent at best and worst, ignored. This report calls for a change, not just a review, of NICE clinical guideline NG158 covering pulmonary embolism diagnosis. 3 Avoidance of high-risk appetite - to achieve operating standards and meet financial incentives, risk appetite should not be a variable that can be compromised or amended. A compliance metric tracking whether clinical guidelines were successfully followed could be included as a diagnostic tool used as part of the Get it Right First Time (GIRFT) initiative 8 to ensure CTPA scanning for pulmonary embolism is not under-used. 4 Ensure radiology departments have the appropriate resources - so they can deliver a safe and effective service. Currently 41% of clinical radiologists do not have the right equipment 3 and the levels of scanners is less than half that in France and a quarter of that in Germany. There are also personnel shortages. There needs to be a plan in place to address these shortages. 5 National consistency, compliance and risk management - exploration of the underlying causes of regional variation, whether from differentials in resources or processes. Ensure oversight approaches/audits are suitably embedded within existing clinical governance systems. 6 Patient engagement - meaningful engagement with those affected when carrying out an incident investigation to ensure family members’ expertise is harnessed and that they are treated as partners in the learning response (where they so wish), not just in setting the terms of reference. 7 Independence - while independent authors may contribute to investigations, independent subject-matter experts are not always involved therefore undermining the integrity of any report conclusions. NHS England’s 2015 Serious Incident Framework guidelines require independent contributors to ensure objectivity and so clearly there may need to be a review of how 'contributors' is defined and how this process may better ensure lessons are being suitably learnt. 8 Knowledge sharing – effective, timely dissemination of learning from a serious incident investigation carried out in one organisation across the NHS to other organisations which may experience a similar type of PE misdiagnosis incident in the future. Ensure Clinical Knowledge Summaries providing the latest research and clinical findings are sufficiently disseminated and actioned by frontline emergency department and clinical staff in a timely fashion. 9 Public awareness – extension of existing awareness campaign advising those at risk of the symptoms to look out for and when to seek medical attention You can access the report in full via the attached PDF document below. Further reading House of Commons Debate - Pulmonary Embolisms: Diagnosis (30 November 2022) Royal College of Radiologists: Briefing for pulmonary embolism debate (November 2022) HSIB - Clinical decision making: diagnosis of pulmonary embolism in emergency departments (24 March 2022)

My mother, 87 years, was admitted to hospital with a suspected heart attack. At the time, she was on a strong dose of a GP-prescribed opioid (fentanyl) to manage her growing lung cancer. The Duty doctor in the hospital seemed panicked as she was so unwell and used a drug to totally reverse her morphine as they thought she had overdosed. This caused excruciating pain for most of the last 60 hours of her life. They hadn’t properly assessed the history of her prescription or asked me, her documented health advocate, about the drug or my mother’s end of life wishes. After a 2-year long traumatic journey for the family, the Inquest issued a Prevention of Future Deaths report, agreeing her prior medication should have been properly assessed. After another year and a convoluted journey through the health system, NHS England’s Patient safety team issued a National Safety Alert to all English hospitals around more careful use of pain relief reversing. Five years later, my good friend was on an unusual cocktail of GP-prescribed drugs for her very painful arthritis. She was admitted to hospital after a fall that dislocated her severely arthritic shoulder. For three days in hospital she went through different medical teams, but no one looked at her pain control needs or her unusual medication, and the only pain relief medication that had worked for her for years was removed totally from very early on in the admission. She suffered on those hard hospital beds, unable to move to a comfortable position due to her painful arthritis, lack of adequate pain control and her shoulder that remained painfully dislocated. She could not move on those beds without help. She was in agony for three days. Sadly she died of a pulmonary embolism in hospital in the midst of that traumatic experience. What both these people have in common is the neglect of their medically prescribed, carefully designed pain control to meet their unique needs, their understandable wishes and personal rights. As a result their essential pain control was totally removed while other necessary medical interventions occurred. These patient and service user’s rights were not respected. Huge suffering resulted. This I believe needs addressing and learning from. Pain control needs of patients with chronic conditions needs to be carefully assessed and addressed on all hospital admissions from the very start of admission. The current complaint and Inquest systems do not have as their agenda these types of safety learning. There are two routes whereby these incidents can be recorded, with one route that may lead to an investigation and system learning nationally. One is the NHS patient portal, which is just for reporting (no one will get back to you, but the information you share could be used to improve safety for future patients), and the other is the Healthcare Safety Investigation Branch (HSIB) who do national investigations almost always on recently occurring events. I would add there are developments in patient safety learning, including patient safety partners rolling out across some health facilities, but this is relatively early on in a national process: https://www.england.nhs.uk/patient-safety/framework-for-involving-patients-in-patient-safety/ The new NICE guidance on Shared Decision Making also adds to the pressure to learn and change from cases like this. Perhaps special guidance is needed for those admitted for emergency care with complex palliative medication needs? I hope a Body will take this up soon. The patient, service user, family and carer voice must be heard and acted on to improve patient safety at these difficult times. If you or anyone you know has had an experience like this, particularly in the last few months, do let me know by emailing me or commenting on this post below, as the routes above could lead to long lasting learning. It is sorely needed.

Health First Europe and the members of the European Patient Group on Antimicrobial Resistance are glad to invite you to our Parliament Roundtable Debate entitled “Engaging with patients and closing knowledge gaps to fight antimicrobial resistance: the role in infection prevention and antimicrobial stewardship.” The event will take place in a hybrid format on Thursday 27 October, 10:00-11:30 CEST (9:00-10:30 BST), kindly hosted by MEP Ondřej Knotek (Renew Europe, Czech Republic), and under the patronage of the Czech Presidency of the Council. Join us to learn more about how AMR affects patients across Europe and how everyone can take action to prevent the development of resistant bacteria. Please register as soon as possible to secure a spot in the European Parliament or to join the conference remotely! We hope you’re able to join us. Register for the event

It is 22 years since the publication of To Err is Human and An Organisation with a Memory. Patient Safety has become a priority worldwide with the passing of the WHO Global Action Plan on Patient Safety. Almost every country has a plan or set of interventions to decrease harm and make healthcare safer. And the development of the science of patient safety has been exponential with increasing evidence of what is required to be safe. We now know what we need to do to prevent harm. In the report led by Sir Liam Donaldson it was stated that four actions were needed to improve safety in the NHS: unified reporting an open culture mechanisms for change a systems approach to solving the challenges of patient safety. Twenty-two years on this challenge remains only partially fulfilled. As is reported in the recent Patient Safety Learning's Mind the implementation gap - The persistence of avoidable harm in the NHS, there is a major problem of taking the lessons from incidents and implementing them at scale so that processes can be changed. The report highlighted four themes, focusing mainly on the lack of a systems approach to safety, learning, oversight monitoring and evaluation, and a lack of leadership. If we are to be safe in the future there must be a fundamental change to the way we think about safety, and the need to incorporate both improvement and implementation science in addressing the implementation gap. There are many reasons for the gap in applying what we know to what we do. This is not uncommon in healthcare where new knowledge takes time to percolate to frontline staff and applies to clinical theory as well as to patient safety theories and methods. So while we may state that we need a systems approach and leadership, we cannot expect frontline staff to be safe if they do not have easy access to the latest theories and methods on patient safety. I believe that to make a difference we need to equip every healthcare worker with the knowledge and skills to be safe. From that frontline revolution we can then look at having a safer NHS in which safety is what we do every day, not what we do only after harm has occurred. This includes learning from everyday practice and constantly asking ourselves “what do we need to do to be safe?” The Oxford University Press Handbook of Patient Safety aims to bridge the knowledge gap so that the implementation gap can be narrowed and eventually closed. The book has been written by a combination of experts in the field of patient safety science and frontline staff, i.e. people who practice safety every day and know what it takes to be safe. The book translates the complex patient safety theories into actions that frontline staff can take to be safe. We hope that the book will make a difference in changing the paradigm and that it becomes the daily companion of every healthcare professional in the NHS. Knowledge is the driver of change and will make a difference. The Oxford Professional Practice: Handbook of Patient Safety is available at the discounted price here.