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Found 268 results
  1. Content Article
    This systematic review of qualitative evidence aimed to improve understanding of the processes and outcomes of redress and reconciliation following a life-changing event, from the perspectives of individuals experiencing the event and their families. The authors searched six bibliographic databases for primary qualitative evidence exploring the views of individuals who have experienced a life-changing event, and/or their family or carers, of redress or reconciliation processes. This was supplemented with targeted database searches, forward and backward citation chasing and searches of Google Scholar and relevant websites. The review identified three themes identified by patients and families that represent procedural elements required to support a fair and objective process: transparency, person-centred and trustworthy. A further theme identified—restorative justice—is about how a fair process feels to those who have experienced a life-changing event. It highlights the importance of an empathic relationship between the different parties involved in the process and the significance of being able to engage in meaningful action. Theses findings provide insights on how to conduct a fair review into instances of medical harm.
  2. Content Article
    Spina bifida develops early in the embryonic stage of pregnancy but is not usually detected until the midterm (20 week) ultrasound scan.  Shine conducted a survey to assess the antenatal care experiences of parents to children with spina bifida. Volunteers were recruited via social media and 71 eligible (UK-based) responses were received, revealing numerous elements of antenatal care in need of significant improvement. Shine have published the findings and recommendations for improving antenatal diagnosis and care for spina bifida. 
  3. Content Article
    Eating Disorders Awareness Week takes place 26 February - 3 March 2024 Eating disorders are complex mental health conditions that affect an estimated 1.25 million people in the UK. There are many unhelpful myths about who eating disorders affect, what the symptoms are and how to support people in recovery. Alongside a current lack of appropriately trained staff and capacity in mental health services, this can make it challenging for people with eating disorders to access the help and support they need. Patient Safety Learning has pulled together ten useful resources shared on the hub to help healthcare professionals, friends and family support people with eating disorders. They include awareness-raising articles, practical tips for patients and their loved ones, and clinical guidance for primary, secondary and mental health providers.
  4. Content Article
    Incorporating parental values in complex medical decisions for young children is important but challenging. This review in The Lancet Child & Adolescent Health explores what it means to incorporate parental values in complex paediatric and perinatal decisions. It provides a narrative overview of the paediatric, ethics and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences. 
  5. News Article
    Doctors tore down posters offering patients a secondary care review if they were worried about their condition in hospital, the mother of a teenager who died of sepsis claimed. Merope Mills, who has campaigned for a similar policy called “Martha’s Rule” named after her 13-year-old daughter, claimed a small minority of “bad actors” in hospitals risked slowing down the initiative. It comes as NHS England announced 100 hospitals with critical care units will be invited to sign up for the policy, which will be rolled out from April this year. Martha died from sepsis in 2021 after staff at King’s College Hospital failed to move her to intensive care despite her family warning them her condition had deteriorated. “When something similar to Martha’s Rule was introduced to Royal Berkshire Hospital, doctors actually pulled down the posters advertising the service to patients because they hated the idea of giving patients this kind of power,” Mrs Mills told the Today Programme. “A small minority of bad actors whose arrogance, complacency or pride stops them listening and doing the right thing and that is what we are trying to challenge with Martha’s Rule. There are pockets of damaging cultures in hospitals around the country. Sometimes it is not a whole hospital, sometimes it is just a ward in a hospital, sometimes it is just a particular individual on a ward in a hospital.” Read full story Source: The Independent, 21 February 2024
  6. Content Article
    NHS England’s Worry and Concern Collaborative is looking into how hospitals can make sure the worries and concerns of patients, their family and friends about a patient in hospital are taken into account by doctors, nurses and other health professionals.  This webinar, hosted by the Patients Association explored: The role of the National Worry and Concern Collaborative and its seven pilot sites the experiences of both clinicians and patients how these services need to be designed and delivered.
  7. Content Article
    The National Institute for Health Research (NIHR) awarded researchers from The Open University (OU), Manchester Metropolitan University, the Universities of Oxford, Glasgow and Edinburgh more than £141,000 to expand their world-first study of witnesses’ experience of giving evidence during health and social care workers’ professional conduct hearings. The project, Witness to harm, holding to account: Improving patient, family and colleague witnesses’ experiences of Fitness to Practise proceedings, mainly focuses on cases where there are allegations of harm. This focus should help regulators and employers identify potential improvements to support witnesses whose role in giving evidence is crucial to a fair hearing.
  8. Content Article
    A common theme of recent international inquiries is that well intentioned investigations often make things worse. Harm is compounded when we fail to listen, validate and respond to the rights and needs of all the people involved. When lengthy processes do not result in meaningful action, suffering can be exacerbated and result in further damage to wellbeing, relationships, and trust. At its worst, compounded harm produces undesirable outcomes such as a community believing an essential service is unsafe, or a clinician leaving their profession. In considering how best to respond, it is important to remember that health systems are comprised of people and relationships, as well as rules and processes. Once we think about safety as a human and relational approach, rather than one that only seeks to lessen risk and enforce regulation, we can consider how to best proceed. Whether an act is intentional or not, a dignifying approach involves working together to repair the harm involved. Restorative responses are ideal for this purpose, as Jo Wailling, Co-chair of the National Collaborative for Restorative Initiatives in Health Aotearoa New Zealand, explains in this blog on the Patient Safety Commissioner website.
  9. Content Article
    The Academy of Medical Sciences has released a stark report highlighting wide-ranging evidence of declining health among children under five in the UK and calls on policymakers to take urgent action to address the situation.It warns Government that major health issues like infant mortality, obesity and tooth decay are not only damaging the nation’s youngest citizens and their future, but also its economic prosperity, with the cost of inaction estimated to be at least £16 billion a year. In recent years, progress on child health in the UK has stalled. Infant survival rates are worse than in 60% of similar countries and the number of children living in extreme poverty tripled between 2019 and 2022. Demand for children’s mental health services surge and over a fifth of five-year-old children are overweight or obese, with those living in the most deprived areas twice as likely to be obese than in affluent areas. One-in-four is affected by tooth decay. Vaccination rates have plunged below World Health Organization safety thresholds, threatening outbreaks. Issues such as the COVID-19 pandemic, increased cost of living and climate change compound widespread inequality and are likely to make early years health in the UK even worse. 
  10. News Article
    The NHS is failing some parents whose children die unexpectedly, a leading paediatrician has told BBC Panorama. About 50 children's deaths in the UK every year are termed as "sudden unexplained death in childhood" (SUDC). Little is known about what causes them. Gavin and Jodie's two-year-old son Addy died unexpectedly in November 2022. BBC Panorama followed the parents over nine months as they searched for answers to why their son died - and whether it could have been prevented. Even after a forensic post-mortem examination, no-one could work out why the little boy went to sleep and never woke up, so his death was categorised as SUDC. When a child dies unexpectedly, a review is held to gather information about what happened. The NHS is required to assign a key worker to help bereaved parents to navigate this process, and provide emotional support. The role of key worker can be taken by a range of practitioners and is often a specialist nurse. However, even though it is a mandatory requirement, a survey carried out by the Association of Child Death Review Professionals (ACDP) found that more than half of NHS areas in England do not have a specialist nurse to visit parents after an unexpected death. "It makes me really angry," says paediatrician Dr Joanna Garstang, the chair of the ACDP, who runs one of the few teams in England that support parents. "Bereaved families after the sudden death of a child are the most vulnerable people. And if we don't put in early support… we're setting these parents up for a lifetime of misery." Read full story Source: BBC News, 5 February 2024
  11. Content Article
    Sarah Rainey talks to Olivia Djouadi about her experience of type 1 diabetes with disordered eating (T1DE), which is thought to affect up to 40% of women and 15% of men with type 1 diabetes. People with T1DE, sometimes also called diabulimia, limit their insulin intake to control their weight, which can have life-threatening consequences. Olivia describes how the stress of living with type 1 contributed to her developing T1DE, and how when she finally received treatment and support in her 30s, she was able to deal with her disordered eating and see her health and wellbeing improve.
  12. Content Article
    Richard von Abendorff, an outgoing member of the Advisory Panel of the Healthcare Safety Investigation Branch (HSIB), has written an open letter to incoming Directors on what the new Health Services Safety Investigations Body (HSSIB) needs to address urgently and openly to become an exemplary investigatory safety learning service and, more vitally, how it must not contribute to compounded harm to patients and families. The full letter is attached at the end of this page.
  13. Event
    The Patients Association and NHS England’s Worry and Concern Group is holding a webinar on pilot studies testing ways to incorporate inpatients’ views of their illness and worries and concerns in the assessment and recognition of acute illness and risk of deterioration. The webinar brings together patients and clinicians to review: The work done during the Worry and Concern pilots The experience of patients and clinicians who took part in the pilot studies How to ensure patient involvement in the design of a nationwide worry and concern programme. The panel is: John Bamford, Patient Safety Partner Kayleigh Griffiths MBE, member of National Worry and Concern Steering Group Jane Murkin, Deputy Director Safety & Improvement – Nursing, NHS England Prof Damian Roland , Honorary Professor of Paediatric Emergency Medicine, University of Leicester John Welch, Consultant Nurse, Critical Care & Critical Care Outreach, University College London Hospitals NHS Foundation Trust. Prof Roland will review experiences with the new national Paediatric Early Warning System (PEWS). The webinar is free and on Zoom. Register online
  14. Content Article
    Laura Cockram, Head of Policy and Campaigning at Parkinson's UK, and regular blogger for the hub, shares with us what Parkinson's UK will be doing to support World Parkinson's Day.
  15. Content Article
    This animation was created to highlight the specific issues for people with learning disabilities in relation to psychological trauma.
  16. Content Article
    The framework has been produced to guide organisations providing residential or supported living accommodation to adults with a learning disability who may have been impacted by a trauma history. Whilst it can be difficult to assess the impact of trauma for many people with a learning disability, particularly those with a more severe/profound learning disability, it is important to recognise the possibility of the impact of psychological trauma. Providing care practices that are trauma informed, person-centred and growth promoting are less likely to be re-traumatizing for those already exposed to trauma.
  17. Content Article
    Jessie Cunnett, new CEO at the Point of Care Foundation, shares her journey of commitment to humanise healthcare through her personal and professional stories. She reflects on the importance of creating space for everyone to feel seen and heard in health and care settings.
  18. Content Article
    A story of a bereaved mother’s experience with the Coroner's Service in the aftermath of her previously well 25-year-old daughter Gaia’s unexpected and unexplained death and why she set up TruthForGaia.com in her search for the truth.  This case demonstrates systemic failings in the Coroner Service: the dismissive way that bereaved family members are treated through the inquest process and a lack of clinical curiosity to determine the primary cause of death.  This inconclusive inquest prompts wider questions about who speaks up for the dead. Just as we have Martha’s rule in life, should there be a Gaia’s rule in death to help families be heard about failed inquests? Gaia’s death and failed inquest are chilling reminders that this could happen to any one of us and our families.
  19. Content Article
    In this article for the Journal of Eating Disorders, Alykhan Asaria considers the criteria used in a paper by Guadiani et al. (J Eat Disord 10:23, 2022) to define ‘terminal anorexia nervosa’ and outlines concerns about this new term from a lived experience perspective. The author highlights issues about the ambiguities around how the criteria can be applied safely and the impact of labelling anorexia nervosa sufferers with terms. Further articles on the hub from Alykhan Asaria: ‘Terminal anorexia’: a lived experience perspective
  20. Content Article
    The Maternal, Newborn and Infant Clinical Outcome Review Programme has published an MBRRACE-UK Perinatal confidential enquiry report on a comparison of the care of Black and White women who have experienced a stillbirth or neonatal death. It is based on deaths reviewed in England, Wales, Scotland and Northern Ireland, for the period between 1 July 2019 and 31 December 2019. The overall findings of this enquiry were based on the consensus opinion of panel members concerning the quality of care provided for the 36 Black and 35 White mothers and their babies. This enquiry was developed to try and identify any differences in the quality of care provided to women of Black ethnicity compared with their White counterparts, and forms the main focus of this report. As such, the recommendations are targeted at trying to ensure equity for the quality of care provision for both Black and White mothers and their babies.
  21. Content Article
    The Maternal, Newborn and Infant Clinical Outcome Review Programme has published an MBRRACE-UK Perinatal confidential enquiry report that compares the care of Asian and White women who have experienced a stillbirth or neonatal death. It is based on deaths reviewed in England, Wales, Scotland and Northern Ireland, for the period between 1 July 2019 and December 2019. The overall findings of this enquiry were based on the consensus opinion of panel members concerning the quality of care provided for 34 Asian and 35 White mothers and their babies. This enquiry was developed to try and identify any differences in the quality of care provided to women of Asian ethnicity compared with their White counterparts, and forms the main focus of this report. As such, the recommendations are targeted at trying to ensure equity for the quality of care provision for both Asian and White mothers and their babies.
  22. Content Article
    In this video and accompanying transcript, clinical decision support researcher F Perry Wilson looks at the importance of health records and databases indicating whether or not a patient is deceased. If they are not up to date and sharing this information with the right staff and processes, inappropriate messages can be sent to healthcare professionals or the deceased patient's family. He argues that as well as being a waste of resources, sending communications requesting procedures or offering appointments in this situation undermines confidence and trust in health systems, in both staff and members of the public.
  23. Content Article
    This is part of our series of Patient Safety Spotlight interviews, where we talk to people working for patient safety about their role and what motivates them. Tracey talks about how her lived experience of navigating the criminal justice and healthcare systems as a victim of serious violent crime has shaped her role as a Patient Safety Partner. Tracey is passionate about speaking up for patients and families, and she highlights the need to prevent compounded trauma by ensuring services meet their needs. She calls for a more joined-up approach between public services and outlines the importance of clear, compassionate communication following a patient safety incident or other traumatic event.
  24. Content Article
    This presentation was given at the WHO Global Conference: Engaging patients for patient safety that took place in September 2023. Maki Kajiwara, technical officer at the World Health Organization's (WHO's) Patient Safety Flagship and Sue Sheridan, a founding member of Patients for Patient Safety US (PFPS-US), gave the presentation to introduce the new WHO Patient Safety Storytelling toolkit. The presentation outlines the need for a storytelling toolkit and provides questions and guidance to help storytellers share their experience.
  25. Content Article
    From Autumn 2023, NHS organisations in England are changing the way they investigate patient safety incidents. NHS England has introduced this new approach, which is called the Patient Safety Incident Response Framework (PSIRF). NHS England has produced detailed resources for patient safety leaders and policy makers about the purpose of PSIRF and what organisations are expected to do to deliver this part of the NHS Patient Safety Strategy. However, discussions with frontline clinicians, patient safety managers, educators and Patient Safety Partners have highlighted the need for a simple guide that helps communicate PSIRF to a wide range of stakeholders, including those who do not work in healthcare. This guide provides information about what PSIRF is and why it’s been introduced. It also outlines what patients, carers and family members can expect from an investigation if they are involved in a patient safety incident.
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