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Found 1,267 results
  1. Content Article
    This animation aims to help staff and employers across health and social care understand Oliver's Training and why it is so vitally important. It was co-designed and co-produced with autistic people and people with a learning disability. Oliver McGowan died aged 18 in 2017 after being given antipsychotic medication to which he had a fatal reaction. He was given the medication despite his own and his family's assertions that he could not be given antipsychotics, and the fact that this was recorded in his medical records. The animation tells his story and highlights the increased risks facing people with learning disabilities and autism when accessing healthcare.
  2. Content Article
    Patient engagement technologies (PETs) are tools used to guide patients through the perioperative period. This study in the American Journal of Surgery aimed to investigate the levels of patient engagement with PETs through the perioperative period and its impact on clinical outcomes. The authors found that use of PETs improves patient outcomes and experiences in the perioperative period. Patients who engage more frequently with PETs have shorter length of stay (LOS) with lower readmission and post-operative complication rates.
  3. Content Article
    In this letter to Health Secretary Steve Brine MP, members of the All Party Parliamentary Group (APPG) on Pandemic Response and Recovery raise serious concerns about the approach of the Medicines and Healthcare Products Regulatory Agency (MHRA) to patient safety. They outline problems within the MHRA that continue to put patients at serious risk of harm. The letter also highlights the role of the Independent Medicines and Medical Devices Safety Review (IMMDS), in its thorough investigation of Primodos, sodium valproate and pelvic mesh in bringing some of these concerns to the fore. It points to recent evidence presented to the APPG that indicates that the MHRA is at the heart of wider endemic failings, with issues uncovered so far being "the tip of a sizeable iceberg of failure." The letter outlines concerns about the following areas: The Yellow Card Scheme Conflicts of interest and transparency History of regulatory failures in the MHRA It calls on the Health and Social Care Select Committee to investigate these issues and make recommendations to the government on: legislative changes as to who is obligated to report adverse drug reactions. funding changes to the MHRA. separation of regulatory approval duties from post marketing pharmacovigilance. more inclusion of patients. greater transparency across the board. proper enforcement of Part 14 of the Human Medicines Regulations 2012.
  4. Content Article
    As the Cumberlege Review and Paterson Inquiry made clear, having accurate and timely data on treatments and outcomes is critical to patient safety. NHS England is working to strengthen this data by implementing a central database to collect key details of implantable devices at the time of operation. The new Outcomes and Registry Platform will bring existing registries together for the first time and introduce new registries. In a blog for the Patient Safety Commissioner website, Scott Pryde, Programme Director for NHS England’s Outcomes and Registries Programme, and Katherine Wilson, Clinical Steering Group Chair of the programme, discuss the new National Registry of Hearing Implants, a registry specifically for cochlear implants. They highlight the importance of collaboration between patients, clinicians, regulators and medical device manufacturers.
  5. News Article
    The head of the NHS has today announced the rollout of ‘Martha’s Rule’ in hospitals across England from April, enabling patients and families to seek an urgent review if their condition deteriorates. The patient safety initiative is set to be rolled out to at least 100 NHS sites and will give patients and their families round-the-clock access to a rapid review from an independent critical care team if they are worried about their or a loved one’s condition. This escalation process will be available 24/7 to patients, families and NHS staff, and will be advertised throughout hospitals, making it quickly and easily accessible. NHS chief Amanda Pritchard said the programme had the potential to “save many lives in the future” and thanked Martha’s family for their important campaigning and collaboration to help the NHS improve the care of patients experiencing acute deterioration. Thirteen-year-old Martha Mills died from sepsis at King’s College Hospital, London, in 2021, due to a failure to escalate her to intensive care and after her family’s concerns about her deteriorating condition were not responded to promptly. Extensive campaigning by her parents Merope and Paul, supported by the cross-party think tank Demos, has seen widespread support for a single system that allows patients or their families to trigger an urgent clinical review from a different team in the hospital if the patient’s condition is rapidly worsening and they feel they are not getting the care they need. Merope Mills and Paul Laity, Martha’s parents, said: “We are pleased that the implementation of Martha’s Rule will begin in April. We want it to be in place as quickly and as widely as possible, to prevent what happened to our daughter from happening to other patients in hospital. “We believe Martha’s Rule will save lives. In cases of deterioration, families and carers by the bedside can be aware of changes busy clinicians can’t; their knowledge should be recognised as a resource. We also look to Martha’s Rule to alter medical culture: to give patients a little more power, to encourage listening on the part of medical professionals, and to normalise the idea that even the grandest of doctors should welcome being challenged. We call on all NHS clinicians to back the initiative: we know that the large majority do listen, are open with patients and never complacent – but Martha’s doctors worked in a different culture, so some situations need to change. “Our daughter was quite something: fun and determined, with a vast appetite for life and so many plans and ambitions – we’ll never know what she would have achieved with all her talents. Hers was a preventable death, but Martha’s Rule will mean that she didn’t die completely in vain.” Read full story Source: NHS England, 21 February 2024
  6. Content Article
    On the 7 February 2024, the Patient Safety Commissioner for England published a report considering options for redress for those who have been harmed by two of the interventions covered by the Independent Medicines and Medical Devices Safety Review: sodium valproate and pelvic mesh. In this blog, Patient Safety Learning sets out the background to this report, outlines responses from patient groups and campaigners, and reflects on how this work will be taken forward.
  7. Community Post
    It's rare that I post personal information of any kind on a website such as this, but this really irked me so felt it was worth sharing. Context: I've been an Asthma sufferer since the age of 3 years old. I know exactly how to manage my condition having had it for over 50 years, and have always used a blue ventolin inhaler as and when necessary (perhaps once every 2-3 months). I have not had any serious issues with my Asthma for at least 20 years, and then only in Hayfever season. Issue: I only renew my inhaler when it expires, every 2 years or so. Therefore it is not listed on my repeat medications list. My most recent one had just run out, so I needed a replacement. Action: I emailed the GP's website as I knew I was meant to, and received an automated email back saying that I would receive a response within 5 working days. So far so good. Response: I received another email response 2 days later (pretty good!) saying that the GP would have to call me to run through why I needed a new inhaler. GP call: The GP rang on the set day and within the allocated time window and started asking me how often I used the inhaler, for what, and did I really need that or the preventative one (which I've had before). At the end of our 10 minute call, she agreed that I just needed a replacement blue ventolin inhaler, as I had asked for in the first place. What a waste of the GP's time, and mine!! It made me think that it would be a helpful thing if certain patients with decades of experience in managing their condition(s) in a very stable way could be classed as 'expert patients' on their GP record. This could save a huge amount of wasted time on both sides!! This blog post first appeared on Linkedin on 30 October 2022. I will post some of the responses to it below for added insight.
  8. Content Article
    Risks and statistics are an essential part of patient information. What is a person’s risk of developing a particular condition in their lifetime, or of having a certain symptom if they have that condition? What are the risk factors for a disease, and can people change these? What is the chance of a treatment or procedure working? And what is the risk of getting the different side-effects and complications that can come with it? Many patients are unable to comprehend basic statistics, never mind navigate their way through the reams of data that may come with health information to compare treatment options. As information producers, our job is to make sure we can guide patients through the minefield of data and figures to help them feel confident in making their own decisions. This guide from the Patient Information Forum highlights a range of approaches and tools for unbiased communication.  This resource covers the following topics: illustrating risk, perceptions of risk, know your numbers, explaining uncertainty, useful resources and references.
  9. Content Article
    An action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and healthcare. Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In Rebel Health, Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health care system to offer a way forward. Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers, and champions. Each chapter includes tips, such as picking a proxy to help you navigate the relevant online communities, or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a personal level, anyone who wants to navigate the health care maze faster will want to become a health rebel or recruit some to their team. On a systemic level, it is a competitive advantage for businesses, governments, and organizations to understand and leverage the power of connection among patients, survivors, and caregivers.
  10. 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.
  11. Content Article
    We all have a right to receive information about our own health in a way we can understand. There is no excuse for poor-quality, inaccessible, information that excludes people. In this blog I will consider how these needs can be met and the implications for patient safety if they are not. I have written about accessible information in the past but in this blog, I will dig deeper into some specifics, namely: Special educational needs, learning difficulties and disabilities. Visual and hearing impairments. Dominant language.  If you’re interested in accessible information, I’d strongly recommend you familiarise yourself with the Accessible Information Standard – this is a standard that the NHS and adult social care have to adhere to by law when it comes to communicating with the general public. This blog will give some tips on how you can make sure you meet this standard. 
  12. Content Article
    Emergency general surgery (EGS) involves care and treatment of a patient's often previously unknown disease in an unplanned interaction with the healthcare system. This leads to challenges in collecting and interpreting patient reported outcome measures (PROMs). This study in the American Journal of Surgery aimed to capture the peri-operative experiences of 30 patients at 6 to 12 months after their treatment. The authors found that: two-thirds reported feeling no choice but to pursue emergency surgery with many reporting exclusion from decision-making. Females reported these themes more commonly. patients with minor complications less frequently reported trust in their team and discussed communication issues and delays in care. patients with major complications more frequently reported confidence in their team and gratefulness, but also communication limitations. patients not admitted to the ICU more frequently discussed good communication and expeditious treatment.
  13. News Article
    Fewer people with mental illnesses would endure the trauma of being sectioned if advanced choice documents – setting out a treatment plan while they are well – were included in Mental Health Act reforms, a leading psychiatrist has said. Advanced choice documents are the only proven way to reduce the number of people detained under the Mental Health Act in England and Wales, which is one of the reforms’ core objectives, said Dr Lade Smith, the president of the Royal College of Psychiatrists. Research suggests that the use of these documents can reduce compulsory detention rates in psychiatric units, often known as sectioning, by 25%, minimising traumatic experiences for people with bipolar, schizophrenia and other psychotic illnesses. “It’s high time there was reform of the Mental Health Act because the rates of detention are increasing, especially for marginalised groups, those who are poor or from a minoritised ethnic community, especially black Caribbean … Advanced choice docs were a recommendation of the review, I don’t know why they haven’t gone through,” said Smith. Advanced choice documents are especially effective in reducing the significantly higher detention rates for black people with mental illnesses, as they can help patients feel more autonomous and reduce unconscious bias. Advanced choice documents are similar to those used in palliative care. Patients work with a healthcare professional when they are well to outline the signs that they are experiencing a manic or psychotic episode, effective treatments, and their personal preferences. This could include background information and trigger questions to help healthcare practitioners establish delusional thought patterns; medications and doses which have been effective previously; and requests to be put in hospital for their own safety, or – more unusually – that of others. Read full story Source: The Guardian, 12 February 2024
  14. Content Article
    This study examines the prevalence of advanced care planning (ACP) for patients undergoing endoscopic, fluoroscopic, laparoscopic or open surgical gastrostomy tube procedures at an academic hospital in the USA. The authors found that only 10.6% of included patients had accessible ACP documents available within their electronic medical record (EMR) and that Black patients had lower rates of ACP documentation. They also highlight an association between ACP documentation and decreased hospital length of stay, with no difference in mortality. The authors recommend the expansion of ACP in perioperative settings.
  15. Content Article
    In the fast-evolving realm of contemporary healthcare, surgical techniques have attained unprecedented levels of advancement, leading to substantial enhancements in patient care. However, the journey towards complete recovery extends far beyond the operating room, emphasising the importance of effective postoperative care. In this critical phase, patient partnerships play a pivotal role, ensuring a holistic and personalised approach to recovery.
  16. Content Article
    Surgeons' News is a magazine for surgical, dental and allied healthcare professionals. Published quarterly by the Royal College of Surgeons of Edinburgh, it features comment and opinion from leading professionals, plus reviews and reports on subjects relevant to all career levels. In the article 'Truth and compassion' (page 20-21), David Alderson considers the patient’s perspective on mistakes.
  17. Content Article
    The Patient Advocacy Leadership Collective (PALC) is an innovative hub that provides connectivity, community resources, and tools focused on sustainable capacity building for patient advocates globally. The PALC is an excellent platform with a focus on supporting the growth, development, and leadership of patient advocacy organizations and offers a NextGen Leadership, Mentorship, and Global Health Fellows programme.
  18. Event
    6th International Symposium: sharing experience and expertise on how patients and those close to them can improve safety of care today. The Symposium will hear from researchers and patients about their experience of complex modern healthcare. It will explore how to spot that things are going wrong, witness amazing new technology and map-out the ethical and legal implications of increased control of healthcare by patients. The event is in Bangor but will also broadcast content online on the day. Key topics for the 2024 event will be: Patient safety from the patient's (and family's) perspective. Patient Activated Critical Care & the policy discussion about Martha's rule. Patients held technology - empowering or distracting? Register
  19. Content Article
    In this blog, Patient Safety Partners Anne Rouse and Chris Wardley and Patient Safety Learning’s Chief Executive, Helen Hughes, examine the results of a recent survey of Patient Safety Partners (PSPs). The results reveal significant variation in how the PSP role is being implemented in NHS organisation in England and highlight frustration, barriers and successes that people in the role are experiencing.
  20. Content Article
    Participants are vital to the success of any clinical trial. Without the data they provide, our research system would collapse. But being a clinical trial participant is not easy. Financial barriers, transport challenges, and a lack of engagement and support can leave patients feeling marginalised and disconnected. This article looks at what needs to be done to ensure diverse patients from around the world can engage with studies and remain engaged from screening until study completion, regardless of their personal circumstances.
  21. Content Article
    Coloplast UK is a manufacturer of ostomy, continence, urology and wound care products. They commissioned the Patients Association to conduct a project to explore and recommend ways to better engage patients and carers in policymaking and the assessment of medical technologies for intimate healthcare. The Patients Association held a roundtable meeting and case study interviews with patients with intimate healthcare conditions and other stakeholders. They also conducted a survey of third-sector organisations who represent those patients and carried out desk-based research. This report summarises the findings of the project, which include that the existing mechanisms of engagement typically adopt a “patient involvement” approach where patients and carers do not have equal status as partners in the decision-making process. The report makes a number of recommendations to improve the way in which patients and their carers are engaged.
  22. Content Article
    In late 2023, the Minister for Mental Health and Women’s Health Strategy, Maria Caulfield MP, asked the Patient Safety Commissioner for England to explore redress options for those who have been harmed by pelvic mesh and sodium valproate. This report sets out the outcome of this project and is designed to help the government understand the options available for providing redress to those patients harmed by pelvic mesh and valproate.
  23. 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.
  24. 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. Chidiebere is passionate about increasing representation of Black people in all forms of medical literature. In this interview, he explains how lack of representation at all levels of the healthcare system leads to disparities in healthcare experiences and outcomes. He outlines the importance of speaking openly about how racial bias affects patient safety, and argues that dispelling damaging myths about particular patient groups starts with equipping people with accurate health knowledge from a young age.
  25. Content Article
    Join Alan Lindemann, an obstetrics-gynecology physician, who shares his insights and real-life experiences, shedding light on the issues surrounding patient care, medical decision-making, and the role of institutions and personal connections in shaping health care outcomes. Discover how the pursuit of quality care can sometimes be obstructed by self-interest and the need to protect reputations. Alan also proposes innovative ideas to enhance transparency and public involvement in health care quality assurance.
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