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Found 390 results
  1. News Article
    The US health secretary Robert F Kennedy Jr has threatened to ban government scientists from publishing in the world’s leading medical journals, which he branded “corrupt”, and to instead create alternative publications run by the state. Kennedy outlined plans to launch government-run journals that would become “the preeminent journals” because National Institutes of Health (NIH) funding would anoint researchers “as a good, legitimate scientist”. The three publications Kennedy targeted are among the most influential medical journals globally, established in the 19th century and now central to disseminating peer-reviewed medical research worldwide. The Lancet and Jama each report more than 30m annual website visits, while the New England Journal of Medicine claims more than 1 million weekly readers. Read full article Source: The Guardian, 28 May 2025
  2. Content Article
    Members of what is now the field of patient safety are fortunate to have a unique resource at their fingertips: the web-based AHRQ Patient Safety Network (PSNet). PSNet is a comprehensive and continuously updated compendium of patient safety news and useful resources. Remarkably, it provides an annotated description of virtually every important paper on patient safety ever written. The collection offers proven frameworks, current information, and practical guidance that improves patient care and strengthens health system safety. But now, this irreplaceable resource is threatened. In the end of March 2025, with impending changes in the organisation in the US Department of Health and Human Services, the PSNet contract was cancelled. In an editorial for the Journal of Patient Safety and Risk Management, Albert Wu and colleagues describe why PSNet serves as an essential tool for healthcare professionals dedicated to advancing patient safety. "For healthcare professionals dedicated to advancing patient safety, PSNet serves as an essential tool. The comprehensive collection offers practical guidance and strategic insight that support the development of effective safety protocols and clinical decision-making. The platform encourages system-based thinking and continuous learning by presenting real-world errors and near-misses in a constructive manner. By facilitating reflection and promoting accountability, PSNet contributes significantly to safer healthcare practices and plays a pivotal role in strengthening the overall culture of safety within health care organizations and the medical community. "By presenting evidence, best practices, and thoughts of experts, PSNet can also help patient safety professionals make the case for the value of patient safety to top leaders and policy makers. "We know that investing in patient safety improves the health outcomes for patients. Investing in patient safety also reduces the costs that occur when patients are harmed. In so doing, this also improves the efficiency of health systems. A continued investment in PSNet would contribute to the health and wellbeing of all who stand to benefit from improved patient safety. Discontinuing PSNet would be a great loss to the field of patient safety. We need to take steps to ensure it remains a vital and meaningful resource for all of us." Related reading on the hub: The legacy and loss of AHRQ’s Patient Safety Net: A pillar of patient safety
  3. Content Article
    The deletions began shortly after Donald Trump took office. CDC web pages on vaccines, HIV prevention, and reproductive health went missing. Findings on bird-flu transmission vanished minutes after they appeared.  On 7 February, Trump sacked the head of the National Archives and Records Administration. More than a hundred and ten thousand government pages have gone dark in a purge that one scientist likened to a “digital book burning.” Racing to comply with executive orders banning “DEI” and “gender ideology extremism,” agencies have cut materials on everything from supporting transgender youth in school to teaching children about sickle-cell disease, which disproportionately affects people of African descent. But they have also axed records having little to do with the Administration’s ideological priorities, seemingly assisted by AI tools that flag forbidden words without regard to context.  However, a coalition of archivists and librarians are trying to save this data and knowledge. They belong to organisations such as the Internet Archive, which co-created a project called the End of Term Web Archive to back up the federal web in 2008; the Environmental Data and Governance Initiative, or EDGI; and libraries at major universities such as MIT and the University of Michigan. Here's where to continue accessing important information. Data Rescue Project Restored CDC Source Cooperative Wayback Machine
  4. News Article
    A senior doctor has been accused of wrongly failing to escalate the care of a 13-year-old girl whose death led to the adoption of Martha’s rule, which gives the right to a second medical opinion in hospitals. At a disciplinary tribunal in Manchester, Prof Richard Thompson was also said to have provided a colleague with “false and misleading information” about the condition of Martha Mills. Martha died on 31 August 2021 at King’s College hospital (KCH) in south London after contracting sepsis. In 2022, a coroner ruled that she would most likely have survived if doctors had identified the warning signs of her rapidly deteriorating condition and transferred her to intensive care earlier, which her parents had asked doctors to do. Thompson, a specialist in paediatric liver disease, and the on-duty consultant – although he was on call at home – on 29 August 2021, is accused by the General Medical Council (GMC) of misconduct that impairs his fitness to practise. Opening the GMC’s case at the Medical Practitioners Tribunal Service on Monday, Christopher Rose said, based on a review of the case by Dr Stephen Playfor, a medical examiner at Manchester Royal Infirmary, Thompson: Should have taken more “aggressive intervention” between noon and 1pm on 29 August, including referring Martha to the paediatric intensive care unit (PICU). Should have gone into the hospital from about 5pm to carry out an in-person assessment of a rash Martha had developed. Gave “false, outdated and misleading information” in a phone call at approximately 9.40pm to Dr Akash Deep in the PICU team. Read full story Source: The Guardian, 19 May 2025
  5. Content Article
    We asked the Patient Safety Group (PSG) of The Royal College of Surgeons of Edinburgh (RCSEd) to draw up their top 10 patient safety tips for surgical trainees. See also: Safety in surgery series Top 10 tips for surgical safety: ‘Think Safety, think SEIPS’ Top 10 priorities for patient safety in surgery Listen to the patient and what matters to them; share decisions with them. Encourage the patient to be in control of their care; they only have to consider their own care and will not be lost to follow up. Trust your instincts; always speak up if you think something is not right. Never be afraid to ask for help if you need it. Look after yourself and your team; there can be no patient safety without team safety. Foster good team working; recognise and respect the value of all team members; take account of everyone’s strengths and weaknesses. Take responsibility for the safety of your patients; patient safety is everyone’s responsibility, not just that of the quality improvement team. Help design systems that make it easier for you to do the right thing. Do not make assumptions. Work as imagined is not the same as work done; make sure you always test any process in practice and confirm that what you think is the case is actually happening. Regularly audit your practice. Celebrate good practice and share your experiences. Take on board feedback and learn from it; be willing to change practice. When outcomes are not as expected, openly discuss and learn, to enable you and your team to reduce the risk of the same thing happening again.
  6. News Article
    A proponent of using the drug hydroxychloroquine to treat Covid-19 despite scant evidence of its efficacy has been named to a top pandemic prevention role at the Department of Health and Human Services, the Washington Post reports. Steven J Hatfill is a virologist who served in Donald Trump’s first administration, during which he promoted hydroxychloroquine to treat the virus in the early months of the pandemic, when vaccines and treatments were not yet available. He recently started as a special adviser in the office of the director of the administration for strategic preparedness and response, which prepares the country to respond to pandemics, as well as chemical and biological attacks. The Trump administration embraced using the antimalarial drug hydroxychloroquine, along with other drugs such as ivermectin and chloroquine, as treatments against Covid-19, despite concerns over both their efficacy and potentially serious side-effects. In June 2020, just months after the pandemic started, the Food and Drug Administration warned against using hydroxychloroquine and chloroquine to treat Covid-19 over “reports of serious heart rhythm problems and other safety issues”, even after Trump approved the ordering of millions of doses of the drug from Brazil for US patients. Last year, a study released at the onset of the pandemic that promoted hydroxychloroquine to treat Covid-19 was withdrawn by the publisher of the medical journal. In an interview with the Post, Hatfill defended his support of hydroxychloroquine, which remains in use to treat diseases including lupus and rheumatoid arthritis. “There is no ambiguity there. It is a safe drug,” Hatfill said, noting that “they gave the drug to the president” in 2020. Read full story Source: The Guardian, 5 May 2025
  7. Content Article
    Orthopaedic surgeon Sunny Deo has spent three decades diagnosing and treating knee joint issues. In this blog, Sunny argues that the healthcare community needs to take a more nuanced approach to diagnosis and decision making so that it can provide patients with safer, more appropriate treatment options. He reflects on why medicine prefers simple answers and looks at how this affects patient care. He goes on to explore how better data collection and the use of artificial intelligence (AI) could provide a more accurate picture of complexity and allow treatment options to be better tailored to individual patients’ needs. "To know the patient that has the disease is more important than to know the disease that the patient has." William Osler, father of modern medicine, 1849-1919. Diagnosis is the process of identifying the nature of an illness or other problem by examining the symptoms and objective findings from investigations. In modern medicine, it is a key focal point of the assessment and management of all patients. A huge amount of clinical medicine training is focused on the art and science of obtaining a diagnosis, and this focus continues into medical practice. The ease of getting to a diagnosis ranges from the glaringly obvious, the so-called ‘spot diagnosis’, through to cases that are very difficult to solve. In between these extremes there is a range from delayed to missed to incorrect diagnosis. The aim of doctors over the centuries has been to work out diagnoses from patients’ symptoms, presenting features (clinical signs) and, in the past century or so, from the evidence of clinical investigations. Quite often, symptoms, signs and investigations produce consistent patterns, and it is these patterns that are taught to medical and other healthcare professionals. This is how diagnoses and outcomes are portrayed in television series or films—just think back to the last episode of Casualty or Grey’s Anatomy you watched. It's also how things often appear in internet searches and on websites and social media. Seeking simple answers to complex questions However, the reality is different. When a patient is sitting in front of me, what I hear and observe may not exactly be what the textbooks, evidence or research tells me I should be seeing. But because we are wired and trained to recognise patterns, we tend to look for diagnoses and solutions that fit within the well-worn narrative. What if the pattern doesn’t fit the actual diagnosis? There are classic presentations for nearly every condition, and these are what you tend to find at the start of a Google search or when using NHS Choices. The expectation of typical symptoms sometimes means we ignore what we might see as annoying variance, superfluous detail or the patient embellishing the truth. This discordance then causes tension with a very basic trait of humans: when we’re faced with a difficult problem, we still seek the simplest solution. This is an evolutionary feature hardwired into us to optimise survival chances. It means we often believe there is a truth to be found that will provide us with a definite answer. From this answer we will come to the best, and ideally only, ‘correct’ solution. Patients who don’t fit the set patterns of diagnosis may then run into trouble when we offer them what is considered to be the ideal treatment. This is an important problem in clinical thinking, language and practice. As a medical community, we tend to create oversimplified approaches based on research that looks for binary answers to complex questions. This research evidence may be based on a small, highly selective ‘typical’ patient cohort, but its findings and conclusions are then translated on to the entire population. This approach results in poor patient outcomes and experience for a small but significant proportion of patients. Pathways designed for ideal diagnoses can cause harm to patients Over my 30 years as an orthopaedic surgeon, 15 as a knee specialist, I have seen that the assessment and treatment of any given condition isn't quite as predictable as we would like it to be. While many patients fit the pattern we are expecting, some do not. I would empirically put the proportion at 60:40, but some unpublished research we did a decade ago suggested the proportion of truly ‘typical’ case presentations for a common condition is much lower. For example, we found that in the case of suspected meniscal tear, this diagnosis actually applied to only 33% of patients with a variety of other diagnoses accounting for the rest. It gets worse when large organisations start to lump patients into a category by condition in a ‘one diagnosis fits all’ strategy. When this approach is taken, there are winners and losers. The winners are those patients whose condition very closely matches the classic presentation of a given condition in isolation. Let’s take the example of knee osteoarthritis—patients with the ‘right type’ of symptoms, physical signs and x-ray changes are generally more likely to do well. Their recovery is more likely to sit within the knowledge base of treating the condition that has evolved over the past half-century. In contrast, patients whose symptoms and test results fall outside of this category may be less likely to do well or recover in the predicted timeframe. This also applies to patients with additional diagnoses or conditions, often termed comorbidities, which may interact, usually in a bad way, with the condition at hand. Failure to consider other diagnoses, either by over-focus on one condition causing wilful ignorance, inattention or lack of attention, may lead to unexpected poor outcomes from a given treatment. It may also mean that the symptoms from the condition that the patient presents with are worse than expected. This doesn’t mean that they won't gain any benefit from a particular treatment, but the risks and potential outcomes may not be communicated adequately by the patient’s healthcare team, if at all. For example, for patients with painful knee osteoarthritis, the current diagnosis to treatment logic runs like this: Knee osteoarthritis is a painful condition. Total knee replacement surgery is a validated safe procedure with significant improvements in quality of life. Other treatment options do not produce as much positive therapeutic benefit compared to total knee replacement surgery. Therefore, total knee replacement surgery is the only treatment for painful knee osteoarthritis. However, there are patients for whom knee replacement surgery is not a safe or practical option, and these patients may benefit from alternative treatments that are not currently offered as they are seen as providing limited benefit. This may be because the participants in trials undertaken over the years had varying diagnoses, meaning that true comparisons of alternative options may have had additional interacting diagnoses or failed to account for differing severity. Understanding the spectrum of complexity As healthcare professionals, we have a duty to diagnose patients as accurately as possible. In orthopaedics, if treatments go wrong or are poorly undertaken, it may lead to prolonged or permanent pain or disability, and we obviously want to avoid this as much as possible. Incomplete identification and documentation of all relevant symptoms and health conditions can potentially lead to an increased risk of treatment failure and complications. Our priority should be to identify these diagnoses or diagnostic clusters as accurately as possible. I think these are basic principles we need to apply to create better systems and improved care for as many patients as possible. In my view, there are grades of ‘atypical patients’ and I have devoted the past decade to trying to demonstrate this, with surprisingly stiff resistance from peer-reviewed journals and funding organisations. I have tried to move away from lumping all patients into a single category. I have done some research on seemingly straightforward soft tissue problems and osteoarthritis in the knee. My initial analysis suggests that we need to collect more detailed and accurate data, rather than simplifying data into minimum datasets. This is where AI can really come into its own, not as a diagnostic tool initially, but as a powerful aid to unlocking and interpreting some of the diagnostic interactions that create problems for patients. However, the use of AI does need to be undertaken with extreme care and consideration, and this isn’t always happening currently. To offer healthcare that is truly person-centred, we need to look beyond our well-worn simple answers and solutions. By using better data and new machine learning tools to understand the nuances of each person’s condition and how it relates to their wider health, we can offer treatment options that are safer, kinder and more cost-effective. Share your views We would love to hear your views on the issues highlighted in Sunny’s blog Are you a clinician who would like to share your experiences? Do these challenges resonate with you? Or are you a patient who has experienced complications because of poor, missed or inadequate diagnosis? Add your comment below (you will need to be a hub member and signed in) or contact us at [email protected] and we can share your story anonymously. Related content on the hub: Using data to improve decision making and person-centred care in surgery: An interview with Sunny Deo and Matthew Bacon Diagnostic errors and delays: why quality investigations are key
  8. Content Article
    Can you think of a campaign that has really got your attention, stuck with you and made you do something differently? Claire Kilpatrick has been involved in the World Health Organization’s (WHO) World Hand Hygiene Day campaign since its launch 17 years ago. In this blog, Claire gives her thoughts around campaigning, explains this year's World Hand Hygiene Day slogan, 'it might be gloves, it’s always hand hygiene', and shares some of WHO's campaign resources. All the outreach activities for a successful campaign take time and effort, and often considerable resources. But if it works, it can work for a long time! Do you know what campaign activities actually expect to achieve? How do you evaluate the reach and impact of any of your campaign efforts? Campaigning can ultimately help make up people’s minds with regards to what they think, how they will act and how they will continue to sell the message in the long term. Ideas exist about how you can undertake annual campaign evaluations. And even if your campaign impact expectations are not met, it doesn't mean your campaigning efforts aren’t worth it. You might still persuade people to change, in some way, at some point. You don't always dash out and buy those new running shoes immediately after you see the ad, but you might in a couple of month’s time because you remembered them… But, if people feel bombarded with information it makes it harder for them to become informed. This makes succinct campaign messaging and clarity even more important, in order to achieve the desired impact. For 17 years, since its launch, I have been involved in WHO's World Hand Hygiene Day campaign, commemorated every 5 May. Working with communications experts and colleagues in regions and countries around the world, I have learned so much about the importance of messaging and was inspired to come up with this year’s slogan: it might be gloves, it’s always hand hygiene. Why this theme? Because: Medical gloves used in healthcare—disposable gloves used during medical procedures—can get contaminated as easily as bare hands and do not protect 100%. When worn, gloves should be removed, for example, after touching a wound site/non-intact skin, and hand hygiene performed immediately. But not everyone knows or practices this. Regardless of whether gloves are worn, hand hygiene—at the right times and in the right way—is still one of the most important measures to protect patients and health workers. By 2026, hand hygiene compliance monitoring and feedback should be established as a key national indicator, at the very least in all reference hospitals. Currently 68% of countries report they are doing this. Do all countries know this is a mandate to be achieved? Excessive glove use contributes significantly to the volume of healthcare waste and does not necessarily reduce transmission of germs. An average university hospital generates 1,634 tons of healthcare waste each year and this number is increasing 2 –3% per year (especially since Covid-19); wealthier countries generate more waste. Appropriate glove use and hand hygiene can help minimise this waste. Some country efforts are evident in this regard, but more needs to be done. And there are more facts available that you can use to explain these topics to your colleagues. The great news is, WHO provides a range of resources to help meet the World Hand Hygiene Day campaign goal—to bring people together and to maintain the profile of life saving infection prevention action. By providing these, WHO helps to cut down on the time, effort and materials that countries and healthcare facilities have to find to maintain their own campaign efforts. Essentially the campaign is nothing without local action, without you. So, for 5 May 2025, and for long term impact, here are some of things you could do: A campaign badge Use it in your email signature, in your socials, or you can even print it and make real badges/pins – show that you are always part of the campaign community. An advocacy slide Drop it in to your presentations. Posters Your own ready to use poster maker. Place these in your work areas. Aim to reach different target audiences. Personalise the posters and remember to change them over time to continue to get attention. Two-minute educational video Embed this new short video into your training sessions. In this eye-opening short story, follow two nurses—one who always practices hand hygiene at the right moments and another who relies on gloves. Spoiler: Gloves aren’t the hero here. Video background Use this as your backdrop for virtual meetings to maintain the campaign profile. Social media messages Use the WHO FAQs to create messages. Repost WHO’s social media messages around 5 May. Remember to use #handhygiene so we can have a socials takeover and have maximum reach. Idea for an engagement activity Start discussions in an informal way, for example, in wards or clinics when you visit, or advertise more formal sessions, maybe including treats! Use the WHO FAQs and then ensure that conversations are informed by actual staff experiences of glove use and hand hygiene. Consider how you will share copies of FAQs for ongoing reference. Improvement documents and tools To show impact over time, use the Hand Hygiene Self Assessment Framework alongside other infection prevention assessment tools. The results guide you to available improvement tools. One of the most popular resources on the WHO YouTube channel remains the 5 Moments for Hand Hygiene training video. Some of the most visited WHO web pages remain the how to handrub, how to handwash and 5 Moments for Hand Hygiene posters. Implementation is also key A guide to implementation for hand hygiene explains the necessary on-going commitment. WHO has a number of guides to implementation for different infection prevention topics, and I have just co-led on a new guide for implementing an infection prevention national action plan – to be launched by WHO in June. Global IPC community of practice Chat with people from around the globe to share and learn more on IPC. As the world of global health evolves, we will need to get even more creative, in both what we say and how we disseminate our messages. Partnerships might help this going forward. In a 2021 paper by Storr et al, they highlighted some considerations for the future around environmental cleaning and infection prevention, including combining advocacy efforts. They noted that “the current melee of global campaigns that countries are called on to be involved in may be resulting in competition and dilution of messages, rather than being complementary.” There is still a lot of buzz around hand hygiene, but I am grateful to be issuing this blog with Patient Safety Learning because the campaign is more than just hand hygiene and to continue to get attention we can do more together. But now that it’s 5 May, as my colleagues in the Global Handwashing Partnership say – all the best for clean hands! Further reading on the hub: Top picks: Nine resources about hand hygiene
  9. News Article
    Health secretary Robert F Kennedy Jr and his department have made a series of misleading statements that alarmed vaccine experts and advocates in recent days – including that the measles, mumps and rubella (MMR) vaccine includes “aborted fetus debris”. Health department officials released statements saying they could alter vaccine testing and build new “surveillance systems” on Wednesday, both of which have unnerved experts who view new placebo testing as potentially unethical. “It’s his goal to even further lessen trust in vaccines and make it onerous enough for manufacturers that they will abandon it,” said Dr Paul Offit, an expert on infectious disease and immunology and the director of the Vaccine Education Center at Children’s Hospital of Philadelphia, about the statements and Kennedy. “It’s a fragile market.” “All new vaccines will undergo safety testing in placebo-controlled trials prior to licensure – a radical departure from past practices,” an HHS spokesperson told the Washington Post in response to questions about general vaccine policy and the measles vaccine. The department did not clarify what it meant by “new vaccine”. The department spokesperson also described new surveillance systems for vaccines, “that will accurately measure vaccine risks as well as benefits – because real science demands both transparency and accountability”, but did not elaborate on the design of those systems. Prior to being confirmed to the role of health secretary, Kennedy was arguably the nation’s most prominent anti-vaccine advocate and led a non-profit known for prolific misinformation. He also earned money by referring clients to law firms suing vaccine makers. Among the claims Kennedy spread was that medications cause “autoimmune injuries and allergic injuries and neurodevelopmental injuries that have long diagnostic horizons or long incubation periods, so you can do the study and you will not see the injury for five years”, he said in an interview in 2021, according to reporting by the Post. Kennedy also claimed this week that the MMR vaccine includes “aborted fetus debris”. The rubella vaccine, like many vaccines, is produced using decades-old sterile fetal cell lines derived from two elective terminations in the 1960s. Read full story Source: The Guardian, 1 May 2025
  10. Content Article
    Most of us will have a lifelong NHS GP record, as well as any individual records held by other NHS services about our healthcare, such as hospitals, dentists and even pharmacies, as they start to deliver some consultations. The NHS is investing resources and funding into making patient records paperless and improving patient information sharing between services. However, coroners have repeatedly issued warnings about inadequate information sharing in the NHS, with some patients dying because clinicians could not access important details about their needs. But is the information in patient records correct in the first place?  Healthwatch reviewed recent feedback on patient records and found people reporting alarming issues with medical records. To estimate the extent to which inaccurate records are widespread, they commissioned BMG Research to conduct a nationally representative survey of 1,800 adults between 24 and 27 March 2025. Concerningly, the survey found that nearly one in four (23%) adults have noticed inaccuracies or missing details in their medical records before. In most cases, people said they had noticed missing information, though some said their records contained incorrect information. A quarter (26%) of those who have noticed inaccuracies in their records said their personal details were wrong. Many elements of NHS care involve individual staff members verbally carrying out ‘positive identification checks’ with patients, using date of birth information, especially if the person’s NHS number is unavailable at the time. A national safety body has found that misidentification can have serious consequences, such as the wrong surgery being carried out. Other errors include inaccurate records of medications, diagnoses or treatments. Healthwatch recommend the following actions. Better record keeping. These stories and figures highlight the urgent need for improved record-keeping practices. This could be achieved by promoting relevant guidance and regulations by professional regulators, as well as better interoperability to ensure records are shared effectively. The government’s ambition to have a single patient record should help address this. Promotion of people’s rights to get records amended. People's right to do this needs to be clearer, along with the legal reasons why services may still have to retain a record of contested information. It is also important to make more people aware that they can complain to the NHS or the Information Commissioner’s Office. Clearer guidance for patients about how to change incorrect records. People told us how difficult it is to amend or remove inaccurate information in their records. Related reading on the hub: The digitalising of patient records — why patients MUST be involved
  11. Event
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    Join the Patients Association for a candid conversation with Sir Julian Hartley, Chief Executive of the Care Quality Commission (CQC), as he shares his vision for rebuilding a trusted approach to regulation. Sir Julian will reflect on the challenges ahead and the opportunity for change and to restore confidence. Hosted by Rachel Power, Chief Executive of the Patients Association, this webinar offers a unique chance to hear directly from Sir Julian about his approach to leadership, transparency, and driving improvement. It takes place ahead of our Patient Partnership Week (30th June - 4th July 2025), a week dedicated to highlighting the importance of shared decision-making and championing patient power and agency. Whether you're a healthcare provider, patient advocate, policymaker or someone who uses care services, book your free place. Register
  12. Content Article
    A correct diagnosis is essential to understand a patient’s condition and determine the most beneficial management in partnership with that patient. Despite the simplicity of “a correct diagnosis,” terminology and methods differ when defining success and failure in diagnosis and diagnostic processes.  Like a multi-faceted prism, different terms describe varying perspectives, insights, or challenges (Figure). This diversity reflects the inherent complexity of diagnosing, as well as the potential for different stakeholders to have different goals or perspectives for diagnostic improvement. This issue brief explores a variety of terms and perspectives that describe aspects of diagnostic success or consequences of diagnostic failure. It provides historical context, underlying assumptions, implications, limitations, and appropriate use of terms.  This summary is directed to clinicians, researchers, and others select the most suitable word or phrase for their purposes and understand the terminology others use. There is no single best term for all circumstances or perspectives, rather many lenses, depending on the paradigm, orientation, and purpose, through which we can view diagnosis and diagnostic improvement.
  13. News Article
    The National Institutes of Health (NIH) will begin work on a comprehensive federal database of patient records to study autism and chronic disease, Director Jay Bhattacharya announced Monday. The commitment gives legs to Department of Health and Human Services (HHS) Secretary Robert F. Kennedy Jr.’s calls to find the root cause of childhood autism, which he calls an epidemic. The NIH appears poised to put federal resources to work to create a central, shareable resource for the researchers that undertake RFK Jr.’s call to action. Last week at an event with reporters, Secretary RFK Jr. announced that HHS will soon be offering research grants for identifying the cause of autism, including exploring causes that were formerly considered taboo by the research community. “People will know they can research and follow the science no matter what it says, without any kind of fear that can be censored ... gaslighted ... silenced," he told reporters. The NIH will now work to build out a data resource consisting of medical records, insurance claims and data from wearable devices to aid autism researchers in their quest to find the root cause of the disease. Bhattacharya explained the initiative to a meeting of NIH advisors on Monday. The NIH will partner across the HHS and with external stakeholders. The data sources for the real-world data platform will be pharmacy chains, health organisations, clinical data, claims and billing, environmental, sensors and wearables. The initiative has sparked some privacy concerns from industry groups. "Compiling health and disability-related data from both federal and commercial sources to create a federal registry of people with autism, without individuals’ consent, is the latest dangerous effort by this Administration to repurpose Americans’ sensitive information for unchecked government use," Ariana Aboulafia, project lead of disability rights in technology policy at the Center for Democracy and Technology, said in a statement. "This plan crosses a line in the sand, particularly given longstanding and historical concerns surrounding the creation of registries of people with disabilities. "The data that would be used to create this registry and inform governmental studies on autism was originally shared with government agencies and private companies, like insurers and wearable technology companies, for a wide range of purposes," Aboulafia said. "It’s unclear exactly who the federal government plans to share this data with, or how they’ll eventually use it. And, while NIH has claimed that the confidentiality of this information will be safeguarded using 'state of the art protections,' it’s also unclear if it’ll be anonymized or disaggregated, or how it will be protected from a hack or breach." Read full story Source: Fierce Healthcare, 22 April 2025
  14. Content Article
    On the 10 April 2025, the Health Services Safety Investigations Body (HSSIB) published a report looking at how care is co-ordinated for people with long-term conditions. In particular, the investigation considered the role of ‘care co-ordinator’ to understand how care is co-ordinated within the existing workforce. In this blog, Patient Safety Learning sets out its reflections on the findings and recommendations in this report. HSSIB investigates patient safety concerns across the NHS in England and in independent healthcare settings where safety learning could also help to improve NHS care. Their latest report looks at primary and community care co-ordination for people with long-term conditions, specifically considering the role of ‘care coordinator’ in this context.[1] While language around the care coordination is varied, the role of care co-ordinated is defined by NHS England as follows: “Care co-ordinators help to co-ordinate and navigate care across the health and care system, helping people make the right connections, with the right teams at the right time. They can support people to become more active in their own health and care and are skilled in assessing people’s changing needs. Care co-ordinators are effective in bringing together multidisciplinary teams to support people’s complex health and care needs.”[2] In this blog we set out our reflections on the findings and recommendations in this HSSIB investigation. Challenges navigating the healthcare system Navigating the healthcare system in the UK can be complex and frustrating for patients, families and carers. At Patient Safety Learning we hear time and time again about the lack of joined up care and communication within and across organisations. Failing to share the right information at the right time can create significant patient safety risks. Poor communications, both with patients and between healthcare professionals, can result in misunderstandings and mistakes resulting in poor outcomes and potentially patient harm. In a recent series of blogs published on the hub, patients and their relatives shared with us the challenges and barriers they have faced when trying to navigate the healthcare system.[3] The concerns and issues raised in this HSSIB investigation echo many of the key themes we identified in our new blog series. Confusing communications HSSIB’s report refers to the case of a child prescribed anti-epileptic medication by a specialist hospital to reduce the number and severity of their seizures. It then details the difficulties the parents subsequently found in getting this medication through their GP or consultant. The parents highlighted concerns about the lack of communication between the separate services, with the report noting: “The parents told the investigation that they were ‘exhausted’ because of the effort they had had to put in over the years to connect services together, having to tell the same story over and over again, while having to provide care for their child.” Delays to treatment The investigation report also highlights the case of a middle-aged professional working man who suffered a stroke. He received hospital care to treat and manage his healthcare needs; however, once discharged he encountered significant difficulties when seeking appropriate support for his additional healthcare needs. HSSIB highlighted how he had told them it required significant effort from him directly to ensure the right level of care was maintained for his needs. Recounting his experience, the report states: “He said that these multiple agencies ‘all operate in their own silos’ and not as a team, and that ‘there was nobody to create that team [a cross-system team aware of all his health and care concerns]’. The way that he and his wife cope with this situation is that they ‘manage the team’ to connect the individual parts of the system and get the care he needs.” Impact on mental health HSSIB also spoke to a man in his late seventies who is the main carer for his wife. She has multiple long-term conditions that require primary, secondary and community care. Reflecting on the impact that coordinating her care had on their lives, the report noted: “The husband explained that his role of care co-ordinator had placed a considerable burden on him, which led him to ‘feel overwhelmed’. He said that because he needing to act as her ‘co-ordinator’ he was unable to spend time with his wife as her husband. He also described having to administer medication and dress his wife’s wound which caused her considerable pain.” HSSIB’s investigation also highlights broader areas of concern relating to the coordination of care in the healthcare system, again mirroring themes raised we heard from patients in our recent blog series. Difficulties sharing information The investigation highlights a recurring concern around problems sharing patient information and the negative impact of this on coordinating a patient’s care. It highlights both issues of digital systems in different organisations not being compatible with one another and other barriers, stating: “Healthcare professionals described the challenges in information sharing. Digital patient records could not be viewed across primary, community, secondary and tertiary care because information technology systems are unable to ‘talk to each other’. They also said that sometimes they were unsure whether patient information could be shared as it was ‘protected information’. This was a particular problem when trying to share information between health and social care.” A complex and confusing system The report also reflects more broadly on how accessing and navigating health and care services can be difficult and complex, and potentially overwhelming for patients. This was highlighted by examples such as this from the investigation: “A GP practice told the investigation that it had tried to put together an easy-to-read document explaining the care pathway for patients with dementia, including contact numbers and ways to access services. The GP practice went on to say that the system was so complex that it was unable to bring together all the information. It stated: ‘We are healthcare professionals and we can’t do this, so how can patients cope?’” Safety recommendations A theme that runs throughout HSSIB’s investigation is that there is a clear need and support for the role of care co-ordination. It highlights that while patients and carers can, and often do, themselves act in this role, when they are unwell or unable to do so a patient’s care can be significantly impacted. The report states that the availability of care co-ordination varies widely across the system. This is a particular issue for those living with multiple long-term conditions as there is no single centralised care co-ordination function to span across primary, secondary and tertiary care. Concluding its investigation, HSSIB recommends that: NHS England/Department of Health and Social Care, working with other relevant organisations, reviews and evaluates the implementation of the care co-ordinator role. This is to ensure that all patients with long-term conditions have their care co-ordinated and that they have a single point of contact 24 hours a day, 7 days a week, to help them with any queries or concerns that they may have. The Department of Health and Social Care works with NHS England and other stakeholders to develop a strategy that ensures that all diseases are given parity and that all people with a long-term condition in primary, secondary, tertiary and community or social care have their care effectively co-ordinated across multiple agencies. This is to ensure that people with long-term health conditions have co-ordinated care plans with effective communication between services and a single point of contact for concerns or questions. Patient Safety Learning agrees that there needs to be greater time and investment into care coordination. On the first recommendation, we would note that seeking to ensure all patients with long-term conditions have a single point of contact 24 hours of day, 7 days a week, would be a significant shift from the status quo. This would require a clear commitment of both financial and workforce resources from NHS England and the Department of Health and Social Care to deliver. In considering how this might be approached, it would also be important to consider: How this can be flexible depending on the long-term condition in question. Different conditions will require different levels and types of coordination. Systemic barriers that result in many of the difficulties navigating the care system would not be addressed by implementing this recommendation. For example: – We would continue to have various digital systems in primary, secondary and tertiary care that lack interoperability (the ability of computer systems or software to exchange and make use of information). – Non-digital communication barriers that prevent cross-organisational sharing of information in the NHS, ranging from data sharing restrictions to cultural attitudes within organisations, would also remain. On the second recommendation we agree with the principle of this, that there needs to be parity for people with a long-term condition and an expectation that their care is effectively co-ordinated across multiple agencies. Poorly coordinated care is not only confusing and frustrating for patients but also creates safety risks that can result in serious avoidable harm. Concluding comments The challenges of navigating the healthcare system discussed in this report are not a new issue, but a long-standing set of problems that do not have a simple solution. Their impact on patient experiences and outcomes is exacerbated in the current environment, when our healthcare system that is under increasing pressure and in a “critical condition”.[4] Patient Safety Learning believes that care co-ordination should form an important area of focus for the UK Government’s forthcoming 10 Year Health Plan. If it is to achieve its strategic ‘shift’ of moving the future of the NHS from "hospital to community" this will require a healthcare system where patients aren’t simply left to "join the dots for patient safety".[5] This will require organisational and leadership commitment to take forward the issues raised in this HSSIB investigation. The needs of patients should be central to improving health and care services, actively listening and acting on their experiences and insights when things go wrong for safety improvement. References HSSIB. Workforce and patient safety: primary and community care co-ordination for people with long-term conditions, 10 April 2025. NHS England. Care co-ordinators, Last accessed 10 April 2025. Patient Safety Learning. The challenges of navigating the healthcare system, 24 February 2025. UK Parliament. NHS: Independent Investigation, Hansard, Volume 753, 12 September 2024. Department of Health and Social Care, Independent report: Review into the operational effectiveness of the Care Quality Commission, 15 October 2024. Related reading Digital-only prescription requests: An elderly woman sent round the houses How the Patients Association helpline can help you navigate your care Lost in the system? NHS referrals Navigating the healthcare system as a university student: My personal experience The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Sue's story Share your story What has been your experience of navigating the healthcare system? What is and isn’t working? How does it feel as a patient or carer when you hit barriers? Has your health been affected? Share your story in our community forum or contact our editorial team at [email protected].
  15. Content Article
    People who have a long-term condition may be in contact with multiple health and care organisations and may experience harm if their care is not co-ordinated. This investigation focuses on people with long-term conditions and how their care is co-ordinated, specifically considering the role of ‘care co-ordinator’. It is intended for healthcare organisations, policymakers and the public to help improve patient safety in relation to co-ordinating care for people with long-term or complex healthcare needs.  Findings The NHS has produced a definition of the professional role of NHS care co-ordinator. However, there is variation in how this role is implemented. Other national organisations have different definitions of care co-ordination and care navigation, which can create ambiguity for people overseeing these roles. There is not a single person/role/organisation responsible for co-ordinating care for people with long-term or complex health and care needs across multiple health and care organisations. The health and care system frequently fails to support care co-ordination across multiple care pathways and instead focuses on individual diseases or issues. This can leave people who have complex long-term conditions with uncoordinated care. Accessing and navigating health and care services can be difficult and complex, and patients and carers would like improved service integration and care co-ordination. Patients and carers act as a central point for information and contact for providers, but when they are unwell or unable to do this, care can be impacted. People who are unable to navigate the health and care system can experience deterioration of health, miss appointments or their care may become delayed or forgotten about, meaning they may need more intense treatment in the future or longer stays in hospital. Patients and carers have to retell their health history to different health and care providers. They believe the system is not joined up and that information does not flow across health and care organisations, or that different parts of the system cannot access information from other providers. When patients are discharged from a health or care setting out of normal working hours they do not always know who they can speak to about any concerns or their ongoing care. Different methods of sharing health and care information can create an information gap, particularly out of hours and at the weekend, resulting in a situation where not all health and care staff have the appropriate information to make decisions. Patients and carers can feel exhausted, burnt out, frustrated, angry and guilty, among other emotions. Patients and carers physical and mental health may deteriorate because of the extra burden of navigating the health and care system. Patients and carers may disengage with the health and care system because they are exhausted and frustrated. This may lead to poor outcomes for both patients and carers. There are different ways of supporting care co-ordination across the system, some of which are assisted by the charity sector. Safety recommendations HSSIB recommends that NHS England/Department of Health and Social Care, working with other relevant organisations, reviews and evaluates the implementation of the care co-ordinator role. This is to ensure that all patients with long-term conditions have their care co-ordinated and that they have a single point of contact 24 hours a day, 7 days a week, to help them with any queries or concerns that they may have. HSSIB recommends that the Department of Health and Social Care works with NHS England and other stakeholders, to develop a strategy that ensures that all diseases are given parity and that all people with a long-term condition in primary, secondary, tertiary and community or social care have their care effectively co-ordinated across multiple agencies. This is to ensure that people with long-term health conditions have co-ordinated care plans with effective communication between services and a single point of contact for concerns or questions. Safety observation Health and care organisations can improve patient safety by allocating a point of contact for patients and/or their carers when people are discharged from services out of normal working hours. This will ensure patients and their carers are able to escalate any concerns relating to their ongoing care and drive improvements in care co-ordination. Related reading on the hub: Read Patient's Safety Learning's response to the findings and recommendations of this HSSIB report
  16. Content Article
    For decades, the Agency for Healthcare Research and Quality (AHRQ)’s Patient Safety Network (PSNet) has been a guiding light for healthcare professionals, researchers and policymakers committed to improving patient safety. Launched in the early 2000s, PSNet provided a rich repository of evidence, case studies and expert analysis, shaping safety initiatives across the US and beyond. Its sudden closure under the Trump administration is not only a devastating loss but also a shockingly rapid dismantling of a crucial resource. This blog from Clive Flashman, Patient Safety Learning's Chief Digital Officer, reflects on PSNet’s history, its impact and what its absence means for the patient safety community. Few initiatives have left as profound a mark on the global patient safety movement as AHRQ's PSNet. For nearly two decades, it was more than just a website—it was a living, breathing community of professionals, researchers and policymakers dedicated to improving the safety of patients worldwide. Its closure is more than a bureaucratic decision; it is the erasure of a collective body of knowledge that shaped and guided countless patient safety initiatives. A vision for a safer healthcare system PSNet was launched in the early 2000s as part of the broader push to improve patient safety following the landmark 1999 Institute of Medicine report To Err Is Human. Recognising the urgent need for a central hub where healthcare professionals could access the latest research, policy developments and real-world case studies, AHRQ established PSNet as an online resource to bridge the gap between research and practice. From its inception, PSNet was driven by a team of leading figures in patient safety, including pioneers such as Dr Kaveh Shojania and Dr Robert Wachter. Their vision was clear: to create a curated space where the latest evidence, commentary and real-world learning could be disseminated widely, ensuring that healthcare professionals at every level had access to the best possible insights to enhance patient care. A hub of knowledge and collaboration over the years PSNet evolved into the world’s premier patient safety repository. It featured: Case studies and real-world analyses of safety incidents, helping clinicians and policymakers understand systemic issues. Expert perspectives and interviews with leading safety scientists and practitioners, offering in-depth insights into evolving best practices. Curated research and literature reviews, providing a continuously updated digest of the latest evidence on safety interventions. Toolkits and guidance, to support frontline healthcare providers in implementing best practices. It became an essential resource not just in the US, but internationally, serving as a touchstone for policymakers and clinicians striving to reduce preventable harm in healthcare systems worldwide. Milestone contributions Several landmark contributions defined PSNet’s legacy. These included its ground breaking work on: Diagnostic errors, spotlighting how cognitive biases and system failures contribute to missed and delayed diagnoses. Medication safety, offering evidence-based strategies to reduce adverse drug events. Patient engagement in safety, emphasising the critical role of patients and families in preventing harm. Health IT and patient safety, providing critical insights into both the promise and perils of digital transformation in healthcare. Articles and reports from PSNet didn’t just inform debate, they shaped policy, guided clinical practice and influenced training programmes worldwide. A sudden and jarring end despite its immense value PSNet has been abruptly and systematically dismantled under the Trump administration’s policies. The closure was not just a budgetary decision; it was an ideological move that ignored the overwhelming consensus on the importance of maintaining accessible, evidence-based patient safety resources. What is perhaps most shocking is the speed with which the decision has been executed. The removal of content has been swift, with little time for the patient safety community to archive or transition critical materials. Researchers, clinicians and institutions that have long relied on PSNet have been left scrambling to retrieve invaluable resources before they disappear forever. The human cost of the closure The loss of PSNet extends far beyond the US. The global patient safety community has long depended on its insights, guidance and leadership. From hospital administrators to frontline nurses, from policymakers crafting national safety strategies to medical educators training the next generation of clinicians, PSNet was a touchstone—a place where those committed to patient safety could find the best available evidence and real-world learning. Now, that light has been extinguished. A tribute and a commitment To those who built PSNet, who curated its content, who shared their expertise and insights over the years: your work mattered. Your contributions saved lives, informed policies and built a global movement dedicated to reducing preventable harm. While PSNet itself may be gone, its legacy lives on in the work of those who continue the fight to improve patient safety. The challenge now is to ensure that its loss does not set back the progress of the last two decades. Those of us who remain in this field must honour its impact by preserving its lessons, continuing its conversations, and finding new ways to collaborate and share knowledge. Patient Safety Learning has captured some of the most important content and tools on the hub so that the global patient safety community can continue to refer to them and use them. With sadness, but also with immense gratitude, we bid farewell to PSNet. Its absence will be deeply felt, but its influence will not be forgotten. Continue to share your knowledge and patient safety resources the hub is Patient Safety Learning's online platform for patient safety. Designed with input from patient safety professionals, clinicians and patients, we created the hub after identifying shared learning as one of the six evidence-based foundations of safer care. It offers a powerful combination of tools, resources, stories, case studies and good practice to anyone who wants to make care safer for patients. Its communities of interest give people a place to discuss patient safety concerns and how to address them. Membership is free – you can register here and you can then start to share content on the hub.
  17. Content Article
    High-quality written information for patients can improve their experience of what’s involved in a hospital visit by reducing uncertainty and anxiety. However, there may be unintended consequences of providing this information: for example patients may become concerned about things they had not previously considered. Although many hospitals recognise the need to provide information to patients who are children and their parents or carers, most locally developed leaflets have not been formally evaluated. This study involved the development of an information leaflet to give to children aimed at answering common questions they may have about going into hospital, and then evaluating the intended and unintended consequences of the distribution of the leaflet. A leaflet called “Coming to hospital: a guide to what goes on” was produced in partnership with Usborne Publishing, aimed at helping paediatric patients understand what to expect about admission to hospital and to help them feel calmer about it. It was based on an Usborne book “Look inside a Hospital” and was distributed to paediatric patients (aged 4–14) at Cambridge University Hospitals NHS Foundation Trust. A questionnaire was developed to assess patients’ views on the leaflet. The questionnaire used an emoji scale to determine what emotions the leaflet elicited, open-ended questions to gain more detailed responses, and a section for parents or carers to provide comments. There were 3,000 copies of the leaflet printed and distributed, and 72 children were involved in the evaluation. Parents and carers were positive about the leaflet, and particularly about the writing, illustrations and explanations. Many said they wished they had seen it before they attended hospital. Overall, the leaflet was positively received by children and parents, and was not reported to provoke anxiety or significant numbers of new questions. In response to suggestions, the word ‘patient’ was changed to personal pronouns throughout the leaflet and other helpful sections on subjects such as visiting times and parking were added. Wider availability of the leaflet to paediatric inpatient populations could make children feel calmer on admission to hospital. Further research on the effects of this leaflet in more diverse populations would be welcome, along with whether disease-specific leaflets would be beneficial. Download the leaflet
  18. Content Article
    A single patient record has the potential to transform the way health and social care work together in the UK. It represents an opportunity to break down silos, empower people to take charge of their care, and deliver a system that truly puts individuals at its heart. Beyond the essential purposes of care, it is a crucial information resource of planning services, informing population health needs and research to improve treatment and prevention. Done right, it will mean faster, safer, and more joined-up care for everyone, no matter where they live or how complex their needs. But success is not guaranteed. As the Government prepares its 10-year plan, the Professional Record Standards Body (PRSB) – drawing on years of collaboration with clinicians, patients, and care providers – believes there are three critical pillars to delivering this vision: public trust, system stability, and staff advocacy. Together, they form the foundation for a resilient, inclusive system that will transform care. Further reading on the hub: The challenges of navigating the healthcare system: Sue's story
  19. News Article
    Almost 1.7 million people have had hernia mesh surgery in the NHS since 2004, figures released by the NHS have revealed. The statistics do not include people who’ve had hernia mesh in private hospitals. Nobody can say how many are now suffering complications – because patients are not tracked for their lifetime. Yet campaigners and academics globally say it can take many years for mesh to cause problems- so the scale of suffering falls into a black hole of missing data. Moreover, support groups show that patients are being implanted with hernia mesh in their thousands ever year – but nobody is being given fully informed consent of the potential risks such as pain, loss of mobility, loss of sex life and losing the ability to have children. Also autoimmune diseases and allergies caused by the plastic mesh material. The figures came to light thanks to a Written Parliamentary Question asked by MP Sharon Hodgson, chair of the All Party Parliamentary Group for First Do No Harm. In its response, The Department of Health say: “Clinicians are expected to inform patients about risks associated with recommended treatments, including reasonable alternatives, to enable informed consent and a balanced patient decision.” But campaign group Sling The Mesh says that the majority of people are told hernia mesh is ‘not the mesh in the media’, or it is a new mesh, or that this is a gold standard treatment and that mesh receives undeserved negative attention. Read full story Source: Sling the Mesh, 25 March 2025
  20. News Article
    Less than half of the claims made about symptoms of attention deficit hyperactivity disorder (ADHD) in the most popular videos on TikTok align with clinical guidelines, a new study has found. Two clinical psychologists with expertise in ADHD also found that the more ADHD-related TikTok content a young adult consumes, the more likely they are to overestimate both the prevalence and severity of symptoms in the general population. People with ADHD are known to suffer inattention, hyperactivity and impulsivity – and may struggle to concentrate on a given task, or suffer extreme fidgeting. Prescriptions for drugs for ADHD have jumped 18% year-on-year in England since the pandemic, which underscores the need for accurate and reliable information, particularly on platforms popular with young people. In this latest study, published in the journal Plos One, the two psychologists evaluated the accuracy, nuance, and overall quality in the top 100 #ADHD videos on TikTok. They found the videos have immense popularity (collectively amassing nearly half a billion views), but fewer than 50 per cent of the claims made were robust. Read full story Source: The Independent, 31 March 2025
  21. Content Article
    Patients with vision or hearing loss frequently encounter difficulties accessing vital health information, medication instructions, and effectively using medical devices. This report for the Patient Safety Commissioner for England, commissioned from Professor Margaret Watson, highlights serious gaps and deficiencies in the way that people with visual and/or hearing impairment or loss (referred to as sensory impairment) are able to access and use medicines and medical devices safely. This report presents the results of a short-term study to explore the challenges experienced by patients with sensory impairment in relation to their safe and effective access to and use of medicines and medical devices. This study was conducted from September to December 2024. The primary data that were generated were derived from three sources: Focus groups involving individuals with visual impairment or loss, including people with diabetes. Key Informant responses to an electronic survey. Medicines and Healthcare products Regulatory Agency (MHRA) Yellow Card reports. Patients reported distressing experiences due to inaccessible packaging, unreadable patient information, inadequate communication about medication changes and a lack of suitable reporting mechanisms for issues. The report makes the following recommendations: The MHRA needs to review – working alongside patients – whether their current guidance and regulations for the licencing and packaging of medicines goes as far as is possible to enable their safe use by those with sensory impairment. The Association of the British Pharmaceutical Industry (ABPI), MHRA and Department of Health and Social Care (DHSC) should work together to restart work – alongside published milestones – to digitise paper-based patient information leaflets via the existing UK Electronic Patient Information Task Force (ePIL). As part of this restart, ePIL – working with patients – should examine how to maximise the benefits of this work for patients with sensory impairment. NHS England’s Diabetes Programme Team should launch a patient reference group to assess, understand and mitigate the barriers and enablers to the safe and effective roll-out of medical devices and other education programmes for the management of diabetes (such as DAFNE) for those with sensory impairments. DHSC and NHS England need to ensure the work announced to improve and expand the NHS App in ‘Reforming elective care for patients’ includes an assessment – conducted with the input of patients – to determine whether further accessibility improvements are required, especially for people with visual impairment. In a number of other areas, the report states that the Patient Safety Commissioner wants to make observations to a number of bodies – highlighting the outcome without specifying the solutions, in keeping with the ethos of the recent Health Services Safety Investigations Body (HSSIB) report ‘Recommendations but no action: improving the effectiveness of quality and safety recommendations in healthcare.’ The report makes the following observations: A patient’s medical record needs to include a prominent flag of accessibility needs and detailed information about these needs to ensure that the healthcare professional can provide any required reasonable adjustments. All relevant healthcare professionals – including community pharmacists – must have sufficient access to these patient records and flags. Healthcare professionals, particularly community pharmacy personnel and others involved in the direct supply of medicines and medical devices, must have sufficient funding to support the additional time and resources required by to undertake assessments of patient needs and provide the required ‘reasonable adjustments’ for medicines and medical devices. With the anticipated increase in prevalence of sensory impairment amongst the general population, further guidance is required to promote evidence-based practice by health and social care professionals in terms of the medicine journey of people with sensory impairment. It is also crucial that there is provision of training to healthcare professionals (ideally within the undergraduate curricula) regarding the needs of people with sensory impairment. People with experience of sensory impairment should be included in the design of medical devices, as well as user information and instructions to accompany their supply and use. Manufacturers need to provide more resources to facilitate the demonstration of the effective use of medical devices, especially for people with visual impairment.
  22. Content Article
    Recent reports have highlighted issues with non-English speaking women and birthing people being able to access equitable maternity care, with inconsistent use of interpreters and translation services, and cases where this has contributed to poor outcomes and avoidable harm. Sands & Tommy’s Joint Policy Unit have produced a briefing paper on translation and interpreting services in maternity and neonatal care. Key messages • Reports and reviews have highlighted issues with the use and quality of interpreting and translation services in maternity care, contributing to poor outcomes and avoidable harm. • Existing guidance states that professional interpreting services must always be available when needed, and that family members should not be used in place of a professional interpreter. • There is poor documentation of interpreting need, and inadequate response to requests for interpretation. • Where interpreting and translation services are available, they are not used consistently. Barriers to this include limited appointment time and poor quality of services. • Lack of high-quality interpreting services are also impacting personalisation of care and choice, and women and birthing people’s ability to give informed consent to treatment and procedures. Follow the link below to read the full briefing paper.
  23. Content Article
    There is no surgical procedure which is 100% risk-free of problems. Hospitals, clinicians, consultants, and their teams are fully aware of the responsibility to treat patients safely. However, there are also several things that you can do as a patient to help support you own safety while having a surgical procedure, as outlined in this article from the Private Healthcare Information Network (PHIN).
  24. Content Article
    Complete and accurate patient history is essential for patient safety. Medical and surgical information is typically reported by the patient using a checklist to indicate medical and surgical history and current medications and supplements. This method has been shown to be generally successful in obtaining an accurate history in most healthcare settings. However, there are instances when patients may withhold information. Patients may hesitate to disclose information when they fear a procedure may be cancelled, when a topic is sensitive, or when they don’t understand that a particular detail is important to their care. Examples of sensitive topics may include pain management, abortion care, weight loss, gender-affirming care, and medical marijuana use. Recent event reports submitted to the Pennsylvania Patient Safety Reporting System (PA-PSRS) included patient safety events that involved patients withholding relevant medical information for fear of a procedure being cancelled. Some event reports described patients who underwent a surgical procedure and experienced complications, which necessitated transfer to a higher level of care. After a discussion between the facilities’ patient safety officers and Patient Safety Authority advisors, it was discovered that these patients had a known medical condition but did not disclose this on their medical history form because they were worried that their procedure might be cancelled. In these cases, these preexisting conditions would not have necessitated cancellation, but their course of treatment would have been modified to prevent the complication and, in turn, the transfer to a higher level of care. Other event report submissions describe procedure cancellations due to an active infection, which the patient did not initially disclose to avoid the cancellation. Each case involved sensitive topics and procedures, which may have led to patients withholding information.
  25. Content Article
    We hear time and time again on the hub about the lack of joined up care and communication within and across organisations. Patients and their families and carers not knowing who to contact to chase up a referral, having to travel miles for appointments, missing appointments because the letter didn’t arrive on time, or having to repeat the patient’s history and medications to every new healthcare professional they see because the notes haven’t been shared or clinicians "don’t have time to read them all". These issues are widespread and urgently need to be addressed if we are to prevent people falling through the gaps and suffering worse health outcomes. In this blog, Sue* shares her and her husband's experiences of trying to coordinate the healthcare system and highlights the challenges and frustrations they continuously face. Difficulties getting a diagnosis My husband Neil* has a very rare chronic condition that means unfortunately he is not managed in the area we live at as it’s a regional centre some miles away. We live in North Yorkshire, one of the largest geographical areas in the country, and we feed into various health economies. It took over 4 years and three different healthcare organisations before Neil got his diagnosis. Every time we see someone new we have to go through all of Neil’s medical history again, and then they often say that it’s not their area of expertise because they only deal directly with one area or speciality; they don't think of the patient as a whole. Whilst waiting to get the diagnosis, Neil had a heart attack so he was initially treated more locally to us but it was still over 40 miles away from where we live. When we called an ambulance for a second time he was taken to a different hospital from the first one he was treated in. So he was taken to two different geographical areas not even under the same trust. To add to this, Neil is also under lots of different specialities, i.e. rheumatology, general surgery, dermatology, respiratory and lipids. So he is being treated and has appointments in numerous places. Coordinating appointments and results With all these different specialties, even if they are within the same regional centre, none of the information is joined up or accessible, including blood results from the GP. We find that things are incorrect all the time and we spend a lot of time trying to coordinate Neil’s care and following up on test results, appointments, etc. Neil receives appointments in various ways—emails, phone calls, texts, letters, messages left on his answer phone. You might get a phone call followed by a letter, or you could get a message to say ignore the letter. You may miss a call but you don’t know which department to ring back because it usually comes up as an unknown number. Recently, Neil received a text message which said he was on a waiting list, but it didn’t say what it was for or what specialist department it was from. It said in the text that if you no longer wanted the appointment and wanted to cancel it, to follow a link, but we had no idea what the appointment was referring to or where it came from! As a patient you want to have some control over your health and be able to see all blood test results, scan results and letters from the hospitals. For example, it would be so much easier to look at Neil’s medications and patient letters if they were all in one place but you can't look at the medical records to see what's been said. The only way we can get it is waiting for the letter to be seen by the GP and then, eventually, added on to their system, but it's not always quick because again it's a different geographical area and systems that are disconnected. As a patient with a new disorder, you’re not familiar with the system. Neil was referred to other specialities from rheumatology. Unfortunately, the treatment plan. including tests or length of wait for appointments, isn’t shared directly with us. We rely on my note taking to ensure everything is completed and followed up. Often we end up going to an appointment without the tests Neil needs to have done due to the length of wait for the test, or the test being triaged and cancelled but this not communicated either to us or the referring doctor. The waiting for test results at the moment are long for some of these tests but if it was in your capacity to be able to seek or understand when you might possibly get them, you wouldn't then end up wasting an appointment. You would wait until you've had the results back or know when it might be. It could take us over two hours travelling time for a wasted appointment. We don’t want to waste our time and the time of others. Lack of communication Neil has radiotherapy coming up shortly and we've had no communications regarding it. I ended up making a phone call to inquire and was given a date. But we’ve still not received a phone call, no email, no letter or anything about it, even though they've got the date and time in their books. You can’t make plans, for example if you are trying to go away for the summer. If you’re waiting for a treatment, which on the NHS may take a while, you want to know when to expect the appointment. It’s a lot easier to manage your condition or diagnosis if you have the knowledge of when something's going to happen and you can manage your own expectations. Navigating the various healthcare apps To try and help with all of this we’ve been really keen to try and find a way to get all of Neil’s medical information, from many different organisations, together in one place and to rationalise appointments. We signed up to the NHS app which then put us on to System Online and then Neil was directed to AirMid UK. We've also found the Patients Know Best app which has been set up and says that you can access all your records but it seems to be only if an organisation has signed up to it. So we’ve got four apps to supposedly access the information but not one of them has all of Neil's information. We are actively looking for an online place which has all the information but none of it ties up. None of the apps give you the same information. We’ve asked our GP but he couldn’t help and hadn’t heard of some of the apps we’d found. A system that isn't working These are just a few examples of what we’re dealing with. I’m lucky as I have some medical knowledge so I know when we're missing something or waiting for something and I will chase up, but not everyone will have this knowledge. If it’s an older patient, or someone who hasn’t got family to support them, then they are on their own to navigate a very complex system. A system that isn't working. *The names in this blog have been changed to ensure anonymity. Are you a patient, relative or carer frustrated with navigating the healthcare system? Or is your GP practice or Trust doing something innovative to make it easier for patients? We would love to hear your stories. Please add to our community forum (you will need to register with the hub, it's free and easy to sign up) or email us at [email protected]. Related reading The challenges of navigating the healthcare system: David's story The challenges of navigating the healthcare system: Margaret's story Navigating the healthcare system as a university student: My personal experience Lost in the system? NHS referrals "I love the NHS, BUT..." Preventing needless harms caused by poor communication in the NHS (DEMOS, November 2023) Robust collaborative practice must become the bedrock of modern healthcare Robbie: A homeless patient’s struggles with the system Digital-only prescription requests: An elderly woman sent round the houses Lost in the system: the need for better admin Digital-only prescription requests: An elderly woman sent round the houses
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