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News Article
‘ChatGPT listened when my GP didn’t’: why women turn to AI on health
Patient Safety Learning posted a news article in News
When Katie finally sat down in her GP’s surgery in November she had been in pain for years. Since the birth of her daughter in July 2023, sex had been agony. Yet the mother of three, a teacher, had delayed booking an appointment — she simply didn’t have the time. After explaining her pain to a stranger, she was met with a shrug. “I was told that this is just what happens after kids. I felt so ignored and so awful. I cried; I felt invisible.” Feeling failed by a human doctor, she turned to ChatGPT. “I know that AI is programmed to acknowledge me; it said something like, ‘that must be really stressful and tough to deal with right now,’ and then gave me a list of things my pain could be attributed to. It instantly put me at ease,” Katie, 28, said. She is now in the majority. A study of 1,000 UK women aged 20 to 50 found that 53% would use a free AI tool for medical advice, even while acknowledging the 20 per cent error rate. The report by Intimina, a Swedish company that makes women’s health products, Sixty-six per cent of women admitted they had avoided booking a GP appointment or collecting a prescription to avoid associated costs and 47% said the cost of living had led them to delay buying treatments until symptoms felt “severe”. However, a London School of Economics study last year found that AI models systematically downplayed women’s symptoms compared to men’s. Dr Susanna Unsworth, a women’s health expert with Intimina, said: “AI lacks the clinical nuance essential in intimate health. Self-treating based on a chatbot’s guess can lead to inappropriate treatment and prolonged suffering.” Read full story (paywalled) Source: The Times, 8 March 2026 -
Content ArticleThis Royal College of Psychiatrists position statement examines how menopause affects mental health and its implications for clinical practice, services, and policy across the UK. Drawing on lived experience, clinical evidence and an intersectional approach, it highlights that menopause can significantly impact mental health and wellbeing, and is associated with anxiety, depression, cognitive changes and, sometimes, triggering or worsening serious mental illness. These effects are not experienced equally: people with severe mental illness, neurodivergence, minority ethnic backgrounds, LGBTQ+ identities, disabilities, or trauma histories often face greater barriers to care and poorer outcomes. Workplace impacts are also considerable, and gaps in clinical understanding, diagnostic overshadowing, limited access to HRT, and insufficient training across the mental health workforce further hinder effective support. This statement calls for: Greater awareness of menopause’s links to mental health Better training for psychiatrists and the wider workforce Fair access to diagnosis, treatment (including HRT) and mental health support The relationship between menopause and mental health to be fully integrated into the development and implementation of national women's health strategies Stronger, more supportive workplace policies Increased research across the board, and especially for under-represented groups Without proper support, many women struggle unnecessarily during the time of menopause transition. This statement outlines how healthcare, policy and workplaces can better respond to ensure compassionate, equitable and evidence-based care.
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Content Article
Top picks: Rare diseases
Patient Safety Learning posted an article in Rare diseases
Over 6,000 rare diseases are characterised by a wide range of conditions and symptoms that can vary not only between diseases but also among individuals with the same condition. 72% of rare diseases are genetic, and nearly one in five cancers is classified as rare. Some common symptoms may overlap with those of rare diseases, which can make diagnosis challenging and delay access to appropriate care. These conditions can impact daily life due to their long-term, evolving nature. At Patient Safety Learning we believe that sharing insights and learning is vital to improving outcomes and reducing harm. That's why we created the hub; to provide a space for people to come together and share their experiences, resources and good practice examples. To support Rare Disease Day, we have pulled together 16 resources, including reports, guidelines and blogs, to raise awareness of the challenges faced by people with a rare disease, and to support healthcare professionals and patients and their carers. 1 England Rare Diseases Action Plan 2025 The UK Rare Diseases Framework, published in January 2021, set out a shared vision for addressing health inequalities and improving the lives of people living with rare diseases across the UK. This is the fourth action plan setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework in England. 2 How one woman’s missed referrals exposed a systemic gap in hereditary cancer care: Why I'm campaigning for Rachel's Rule When Stuart Ball's wife Rachel passed away in August 2025, she was just 47 years old. Her death was not inevitable. It was the result of years of missed opportunities—signs that were there in plain sight but never joined together. What happened to Rachel should never happen to another family. Stuart shares Rachel's story and tells us why he is campaigning for Rachel's Rule—a call for a system safeguard that ensures hereditary risks are not missed. 3 National Organization for Rare Disorders: Rare Disease Database for patients and families The National Organization for Rare Disorders (NORD)’s Rare Disease Database provides brief introductions for patients and caregivers to specific rare diseases. 4 OrphanAnesthesia: Patient Safety Card OrphanAnesthesia offers a Patient Safety Card for all hospitals, patients, and support groups. The patient or the physician fills in the name of the rare disease to notify the anaesthesiologist/ emergency personnel of the rare disease, and of the recommendation for the anaesthetic management. The card should be given to the anaesthesiologist before anaesthesia. It should be carried by the holder in case of emergency. 5 Highlighting Loeys-Dietz syndrome and the need for awareness Loeys-Dietz syndrome (LDS) is a genetic disorder affecting connective tissue, which supports, protects and gives structure to various tissues and organs. This article tells the story of Sharon, a 53-year-old woman from Bristol, who died in December 2022. Her family now advocates for greater awareness of LDS to prevent similar tragedies. Sharon’s death, attributed to natural causes compounded by neglect, highlights systemic failures in promptly recognising and treating her aortic dissection. 6 Rare care matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has launched a report revealing that individuals living with rare autoimmune rheumatic diseases (RAIRDs) experience stark variations in their care and treatment. The report paints a concerning picture: nearly one in three respondents waited more than five years for a diagnosis, with the average wait time standing at two and a half years. 7 “No one would believe me”: A common feeling for people living with a rare disease Having a diagnosis can be very important, not only in order to consider medical needs, but sometimes it can also come as proof that something is happening to the body, proof to others that there is something going on. Several people across the globe, with different rare diseases, have shared their story, telling us about needing to be heard and understood. 8 GIRFT - Spinal surgery: National suspected cauda equina syndrome (CES) pathway Cauda Equina Syndrome (CES) is a rare but serious spinal condition and if not diagnosed and treated swiftly, it can result in lifechanging injury. Nearly a quarter of compensation claims for spinal surgery in England relate to CES. This CES pathway and accompanying guidance by the Getting It Right First Time (GIRFT) programme, aims to provide healthcare professionals working in all care settings with the ability to effectively diagnose and care for patients presenting with suspected Cauda Equina Syndrome. 9 Sickle Cell Society: Standards for the clinical care of adults with sickle cell disease in the UK These standards for the clinical care of adults with sickle cell disease were produced by the Sickle Cell Society in collaboration with a broad multi-disciplinary group of healthcare providers, patients and support groups. 10 HSIB: Management of sickle cell crisis In this investigation, the Health Services Safety Investigation Body (HSSIB) used a real patient safety incident to explore how sickle cell crises are managed within hospital settings. In particular, the investigation considered: the knowledge nursing staff may have about the care of patients in sickle cell crisis how patient-controlled analgesia (PCA) – where a patient can use a device to give themself doses of pain relief medication – is considered holistically, such as monitoring the patient and staff workload. 11 Medication supply issues: Mast cell activation syndrome (MCAS) Joy Mason is the Director of Operations, Services and Engagement at Mast Cell Action. In this blog, Joy tells us more about Mast Cell Activation Syndrome and how medication supply issues are impacting people’s lives and causing avoidable harm. 12 Neonatal herpes – more common than you think? Neonatal herpes is a rare, and potentially fatal, disease which usually occurs in the first four weeks of a baby's life. It is caused by the same virus that causes cold sores and genital infections – the herpes simplex virus (HSV). Early recognition and treatment has been shown to significantly improve babies' chances of making a full recovery. Sarah de Malplaquet, Chief Executive and Founder of the Kit Tarka Foundation, explains why they are joint-funding new research into neonatal herpes, and how the findings could help save many lives. 13 What can I do to prevent my baby getting neonatal herpes? (Kit Tarka Foundation) There are some simple things you can do to help prevent babies from catching herpes infections. These include regular hand washing, covering cold sores and not kissing babies who are not your own. The Kit Tarka Foundation provide information on neonatal herpes and how to keep your baby safe. 14 Creon shortages: “It’s just another thing patients with cystic fibrosis could do without” There is a current shortage of Creon, a pancreatic enzyme replacement therapy. Sophie, a patient with cystic fibrosis, tells us about her experience of trying to get hold of Creon and the challenges she has faced. 15 From diagnosis to system change: what rare disease is teaching us about safety, bias and AI Professor Rob Galloway is an Emergency Medicine Consultant and Founder of the charity Rare People. In this article, Rob talks about his daughter’s recent diagnosis of a rare genetic condition. He describes the barriers to safe and equitable care for people with rare diseases, and his hopes for future treatment development, supported by AI. 16 Equity for Rare: Delivering fair healthcare systems for people affected by rare conditions The Genetic Alliance UK 'Equity for Rare' report highlights the inequities the rare conditions community experiences, and found that equity broadly means ensuring that people with rare conditions can navigate the healthcare system with the same dignity and efficacy as those with common conditions. It's gives five recommendations for the Government. For more resources, take a look at our Rare diseases area of the hub. Do you have a resource or story to share about rare diseases? Could your insights or experiences help improve patient safety? Leave a comment below (join the hub for free first) or contact us at [email protected]. -
Content ArticleThis is the story of a woman who should still be here. A woman who spent her life lifting others, never knowing the danger quietly growing inside her. It is also the story of a husband who loved her with every part of his being, and who now fights to make sure what happened to her never happens to anyone else. Rachel Ball was funny, gentle, stubborn in the best way, and endlessly kind. She lit up classrooms, steadied frightened pupils, and brought out the good in everyone she met. For decades, her body was sending small signs, clues scattered across appointments, hospitals, and years, but no one ever joined them together. By the time the full picture emerged, it was too late. The missing piece revealed itself only at the very end, when nothing could change what it meant. In this memoir, Stuart Ball takes readers through the love they built, the life they shared, the warnings no one recognised, and the final fight that changed everything. Further reading on the hub: How one woman’s missed referrals exposed a systemic gap in hereditary cancer care: Why I'm campaigning for Rachel's Rule
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News ArticleSome people suffering from long Covid may experience symptoms similar to those seen in individuals with Alzheimer’s disease, according to new research. Recent findings from New York University Langone Health suggest that changes in the brain caused by Long Covid — symptoms of the illness that linger for more than three months, according to the CDC — may result in long-term fatigue, brain fog, dizziness, loss of smell or taste, depression, and other symptoms. Some 20 million Americans have been diagnosed with long Covid, according to Yale Medicine. “Our work suggests that long-term immune reactions caused in some cases after an initial COVID infection may come with swelling that damages a critical brain barrier in the choroid plexus,” senior study author Dr. Yulin Ge, a professor in the Department of Radiology at NYU Grossman School of Medicine, said in a statement. “It is currently unknown whether these changes are reversible. We are actively analyzing their follow-up data to address this question,” Dr Ge said. Senior study author Dr. Thomas Wisniewski of the NYU Grossman School of Medicine said in a statement that the team's next steps will be to monitor the patients to see if “the brain changes we identified can predict who will develop long-term cognitive issues.” Read full story Source: The Independent, 11 February 2026
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Content Article
Top picks: 15 resources on eating disorders
Patient-Safety-Learning posted an article in Eating disorders
Eating Disorders Awareness Week takes place 23 February - 1 March 2026 Eating disorders are complex mental health conditions that affect an estimated 1.25 million people in the UK. There are many unhelpful myths about who eating disorders affect, what the symptoms are and how to support people in recovery. Alongside a current lack of appropriately trained staff and capacity in mental health services, this can make it challenging for people with eating disorders to access the help and support they need. Patient Safety Learning has pulled together 15 useful resources shared on the hub to help healthcare professionals, friends and family support people with eating disorders. They include awareness-raising blogs, practical tips for patients and their loved ones, and clinical guidance for primary, secondary and mental health providers. 1 Hope Virgo: What needs to happen to stop people with eating disorders being failed by the healthcare system? In this blog, Hope Virgo, author and Secretariat for the All Party Parliamentary Group (APPG) on Eating Disorders, examines the crisis that continues in eating disorder services in the UK and the devastating impact this is having on patients and their families. She highlights how failures in services lead to avoidable deaths. Hope shares the key recommendations from a new report by the APPG and calls for adequate funding and attention to ensure people with eating disorders receive the help they need to recover. 2 Beyond stereotypes: A lived experience guide to navigating support for disordered eating Disordered eating can affect anyone, but it can be confusing to understand and recognise it in our own personal experiences. This guide, published by East London NHS Foundation Trust, is a snapshot of how adults in East London have navigated those experiences of uncertainty while seeking support for disordered eating. For many of the contributors, preconceptions about what an eating disorder is (or isn’t) have previously acted as a barrier to seeking or receiving support. It also contains advice on how to seek support for disordered eating. 3 ARFID: A brief evidence review Avoidant/restrictive Food Intake Disorder (ARFID) is a severe feeding and eating disorder marked by food avoidance and/or restricted food intake. Individuals with ARFID can restrict the amount of food eaten, and therefore do not get enough calories, or they can restrict the range of foods eaten and therefore do not get all the nutrients needed for maintaining health. The charity Beat has produced an evidence review on ARFID. 4 Leaflet - Seeking treatment for an eating disorder If someone suspects they may have an eating disorder, their first step in getting treatment is often a visit to their GP. This leaflet contains guidance for people who have, or suspect they may have, an eating disorder, as well as information for GPs and other people who may be supporting them. It’s based on the guideline on eating disorders from the National Institute for Health and Care Excellence (NICE), which GPs should use when making decisions about patients’ healthcare. 5 Feeding or eating disorders hub (NHS England) The NHS England MindEd all-age eating disorders hub is aimed at all professionals, from universal to specialist. It contains key trusted evidence-based learning, curated and approved by an expert panel. You can find information on NHS policy guidance, professional bodies' guidance, professional associations' reports, charities, NHS learning and good practice, legislation and reports, and key and influential texts. 6 People with eating disorders should not face stigma in the health system and barriers to accessing support - a blog by Hope Virgo People with eating disorders often find it difficult to get help and treatment from the health system because of pervasive stigma, misinformation and stereotypes around eating disorders. This blog by eating disorder survivor and mental health campaigner, Hope Virgo, looks at the barriers people face when they try to access support for eating disorders in the UK. She talks about her own experience of being told she was ‘not thin enough for support’ and calls for long-overdue action on funding, training and awareness of eating disorders within the NHS. 7 Medical emergencies in eating disorders (MEED): Guidance on recognition and management To tackle the serious harms, up to and including death, associated with eating disorders it is crucial that more is done to identify them at the earliest stage possible so that the appropriate care and treatment can be provided. This guidance by the Royal College of Psychiatrists provides a comprehensive overview of the latest evidence associated with eating disorders, including highlighting the importance and role of healthcare professionals from right across the spectrum recognising their responsibilities in this area. 8 I survived diabulimia, the world’s most dangerous eating disorder Sarah Rainey talks about her experience of type 1 diabetes with disordered eating (T1DE), which is thought to affect up to 40% of women and 15% of men with type 1 diabetes. People with T1DE, sometimes also called diabulimia, limit their insulin intake to control their weight, which can have life-threatening consequences. Olivia describes how the stress of living with type 1 contributed to her developing T1DE, and how when she finally received treatment and support in her 30s, she was able to deal with her disordered eating and see her health and wellbeing improve. 9 London Assembly Health Committee: Eating Disorders in London In June 2023, the London Assembly Health Committee launched an investigation into eating disorders in London, following reports that referrals for eating disorder services have increased in recent years and performance against waiting time standards dropped during the COVID-19 pandemic. The aim of this investigation was to understand what is driving the increase in referrals, how services are responding to this additional demand and to explore people’s access to, experiences of, and outcomes from treatment services. The report makes 12 recommendations for change. 10 SAPHNA - Eating disorder toolkit This toolkit was co-produced by the School and Public Health Nurses Association (SAPHNA) with school nursing services, mental health campaigners, eating disorder experts, education colleagues and young people with lived-experience of eating disorders. It provides information and guidance for school nurses on how to identify and support students with eating disorders and their families, addressing issues such as consent, confidentiality and referral to specialist services. 11 Tips poster: First signs of symptoms of an eating disorder When someone has an eating disorder, getting early support and treatment can make a huge difference to their recovery. That’s why it's important that everyone can spot the first signs and symptoms of an eating disorder. This poster by the charity Beat Eating Disorders offers tips to help you spot the very first signs of an eating disorder. 12 Eating disorders: a guide for friends and family This booklet from Beat Eating Disorders is for anyone supporting someone with an eating disorder. It covers information about eating disorders and treatment, and offers guidance on how you might approach the subject if you’re worried about someone you know and how to support them after diagnosis, as well as looking after yourself. 13 Medical emergencies in eating disorders: Guidance on recognition and management People with eating disorders can reach a crisis point where their condition becomes a medical emergency resulting in serious harm or even death. This guidance from the Royal College of Psychiatrists makes a series of recommendations for primary care, secondary care and mental health services that aim to make preventable deaths due to eating disorders a thing of the past. There are specific recommendations focused on the needs of children with eating disorders, recognising the physiological differences between adults and children. 14 In conversation with Hope Virgo: “The withdrawal of treatment from people with eating disorders is a national crisis that’s being ignored.” A growing number of patients with eating disorders are reporting having treatment withdrawn by services, often without notice and without their consent. We spoke to eating disorder campaigner Hope Virgo about how pressures on services, enduring stigma around eating disorders and dangerous new narratives are leading to the practice of treatment withdrawal. Hope explains how this is affecting vulnerable patients and highlights that as the number of people developing eating disorders increases, the risks to patient safety will only get worse. 15 National Audit of Eating Disorders Service Mapping Report 2025 The National Audit of Eating Disorders (NAED) is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and funded by NHS England as part of the National Clinical Audit and Patient Outcomes Programme. In 2025 the NAED team conducted a comprehensive mapping of eating disorder service provision across England. This report provides an in-depth overview of NHS-funded and independent sector services for children, young people, and adults. Have your say Are you a healthcare professional who works with people with eating disorders? We would love to hear your insights and share resources you have developed. Perhaps you have received treatment for an eating disorder—what was your experience of healthcare services? We would love to hear from you! Comment below (register for free first) Get in touch with us directly to share your insights -
News Article
‘Jess’s rule’ posters remind GPs in England to re-examine patients’ symptoms
Patient Safety Learning posted a news article in News
Millions of patients in England will this week be urged to ask their GP to think again if they have not had a diagnosis for their symptoms after three appointments. From Monday, GP practices across the country will use posters to promote Jess’s rule, a new system aimed at preventing serious illnesses from being missed and needless deaths. It is named after Jessica Brady, a 27-year-old who contacted her surgery 20 times before dying of cancer in 2020. Jess’s rule urges family doctors to consider a second opinion, conduct a face-to-face physical examination or order more tests if a patient has had three appointments for their symptoms but no diagnosis. Posters advertising Jess’s rule have been sent to all 6,170 GP practices in England. The system was launched in September but the new posters will boost patient safety by reminding GPs to rethink initial assumptions, ministers said. Read full story Source: The Guardian, 19 January 2026 -
News ArticleFive smart technologies that act as a "second pair of eyes" during bowel examinations have been conditionally recommended by NICE for NHS use, potentially helping doctors spot harmful growths that could turn into cancer. Patients having a colonoscopy – a camera test to look inside the bowel – could benefit from cutting-edge artificial intelligence (AI) tech that helps doctors spot small growths called polyps more easily. Some of these polyps can turn into bowel cancer if not found and removed early. NICE's independent advisory committee has said five AI technologies can be used in the NHS whilst more evidence is collected over the next four years to understand their full benefits. Read full story Source: NICE News, 20 November 2025
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Content ArticleThis prospective, observational cohort study examined data from 13,647 adults participating in the Researching Covid to Enhance Recovery (RECOVER-Adult) study. It aimed to update the research index for classifying symptomatic Long Covid and five symptom subtypes that differ in associated demographic features and quality of life. The researchers believe this update may help researchers identify people with symptomatic Long Covid and its symptom subtypes. Refinement of the index will be needed as research advances and the understanding of Long Covid deepens. Listen to a short podcast about the update of the RECOVER-Adult study.
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News Article
Patient suffered diagnosis delay after junior doctor missed 'red flags' in A&E
Patient Safety Learning posted a news article in News
A patient suffering from a perforated bowel had their diagnosis delayed after a junior doctor missed “red flags” during an assessment in A&E. After arriving at the emergency department of an NHS Forth Valley hospital, the patient was initially assessed by a junior doctor who ordered various tests and investigations. They were later moved to the acute assessment unit and diagnosed with a perforated bowel. The patient developed sepsis after undergoing emergency surgery. The patient’s child complained to the Scottish Public Services Ombudsman (SPSO) about their parent’s treatment. Specifically, they complained about the delay in identifying their parent’s condition, which they believe led to a worse outcome. NHS Forth Valley acknowledged that a more senior doctor may have identified the cause quicker, but that the care provided was reasonable, and that the complaint had led to learning and ongoing development. In putting together their report, the SPSO took independent advice from an emergency medicine consultant. It found that there were “a number of red flags” when the patient was admitted and that it did “not appear” they had been reviewed by a senior clinician. Issues were also found in the patient’s documentation; no intimate examination was recorded, and there was a “lack” of documentation around the interpretation of an X-ray. Overall, the report concluded that the initial assessment delayed diagnosis of the perforated bowel and was likely to have had a “significant effect” on the patient’s outcome. Read full story Source: STV News, 29 April 2025 -
News Article
Nine in 10 women don’t know signs of heavy periods, research says
Patient Safety Learning posted a news article in News
As few as one in ten women can pinpoint signs of heavy menstrual bleeding, as one of the UK’s top women’s health doctors says women and girls were “suffering in silence” from period problems, despite the availability of potential treatments. Research by the charity Wellbeing of Women found that one in two women (51%) said their period negatively impacts their life, and the same proportion avoid exercise when on their period while nearly three in five (57%) experienced problems at work because of their period. A Censuswide survey of 3000 people, commissioned by the charity, found that half of women also said their period symptoms had been dismissed, and just under a quarter said they felt their symptoms had been dismissed by a healthcare professional. On Tuesday, the charity launched a new period symptom checker to help women and girls understand more about their menstrual cycle, which could help women talk to their GP about receiving better treatment. The checker, which takes just four minutes to complete, asks various questions about health and reproductive symptoms, and at the end of the checker drafts a letter for women to give to their GP which can help open discussions about symptoms. Wellbeing of Women said many women are "putting up with" disabling levels of pain and heavy bleeding, waiting for an average of two years before seeking help. Professor Dame Lesley Regan, who was appointed as the first-ever Women's Health Ambassador for England under the Conservative government and is the chairwoman of Wellbeing of Women, said: "It is shocking that women are still suffering severe period pain and heavy bleeding in silence. "A variety of medical treatments could be offered to girls and women with these distressing conditions. "We hope that our new Period Symptom Checker will encourage women to speak up and seek help for their period problems. "It aims to promote better engagement with GPs and other community healthcare professionals by creating a letter that outlines how their symptoms are affecting their everyday lives." Read full story Source: The Independent, 11 February 2025 -
Content Article
Symptoms of group B Strep infection in babies
Patient_Safety_Learning posted an article in Maternity
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In the UK, up to two-thirds of GBS infection in babies are of early onset (showing within the first 6 days of life). Read more about the symptoms and download an awareness poster via the link below to the Group B Strep Support website. -
Content ArticleFalsified, potentially harmful Ozempic and Saxenda products have been found in the UK. This drug safety update from the Medicines and Healthcare products Regulatory Agency (MHRA) asks healthcare professionals to remind patients using these products to always obtain prescription medicines from a qualified healthcare provider and not to use products they suspect are falsified as this may lead to serious health consequences. Healthcare professionals must also remain vigilant for symptoms linked to hypoglycaemia in patients who may have obtained a falsified product containing insulin. Read the full update and advice for healthcare professionals and the public via the link below.
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Content ArticleA NIHR-funded study has reached an agreement amongst researchers and patients on how best to measure improvement in Long Covid. Researchers have identified a Core Outcome Measure Set (COMS). This is designed to help researchers and clinicians measure the severity and impact of Long COVID. COMS specify key things that should be measured in all patients. This improves how data can be compared and summarised. Researchers say this will speed up the development of treatments for Long Covid. The research is published in Lancet Respiratory Medicine. It was co-led by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London and in collaboration with the World Health Organization (WHO). The research included close collaboration with Long Covid patients and organisations. Symptoms that persist or develop after Covid-19 are known as Long Covid. They are also described by other names such as post Covid-19 condition, post acute sequelae of Covid-19 (PASC) or post-Covid syndrome. Common symptoms include: fatigue shortness of breath pain exercise intolerance cognitive dysfunction (brain fog). But, patients can experience a wide range of other symptoms across all bodily systems. This makes it hard to identify the key symptoms and decide how to measure them. The COMS agreed in this study will help solve this challenge.
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Content ArticleThis checklist has been developed by the Alzheimer’s Society to allow patients to check symptoms that could be a possible sign of dementia. Endorsed by the Royal College of General Practitioners (RCGP), it is a simple tool to help patients and their families clearly communicate their symptoms and concerns to a GP or other healthcare professional. It is not a diagnostic tool, but aims to provide a basis for helpful conversations.
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News Article
Long Covid: MRI scans reveal new clues to symptoms
Patient Safety Learning posted a news article in News
People living with long Covid after being admitted to hospital are more likely to show some damage to major organs, according to a new study. MRI scans revealed patients were three times more likely to have some abnormalities in multiple organs such as the lungs, brain and kidneys. Researchers believe there is a link with the severity of the illness. It is hoped the UK study will help in the development of more effective treatments for Long Covid. The study, published in Lancet Respiratory Medicine, looked at 259 patients who fell so ill with the virus that they were admitted to hospital. Five months after they were discharged, MRI scans of their major organs showed some significant differences when compared to a group of 52 people who had never had Covid. The biggest impact was seen on the lungs, where the scans were 14 times more likely to show abnormalities. MRI scans were also three times more likely to show some abnormalities in the brain - and twice as likely in the kidneys - among people who had had severe Covid. Dr Betty Raman, from the University of Oxford and one of the lead investigators on the study, says it is clear that those living with long Covid symptoms are more likely to have experienced some organ damage. She said: "The patient's age, how severely ill they were with Covid, as well as if they had other illnesses at the same time, were all significant factors in whether or not we found damage to these important organs in the body." Read full story Source: BBC News, 23 September 2023 -
News Article
Brain fog after Covid linked to blood clots - study
Patient Safety Learning posted a news article in News
Blood clots in the brain or the lungs might explain some common symptoms of "Long Covid", including brain fog and fatigue, a UK study suggests. In the study, of 1,837 people admitted to hospital because of Covid, researchers say two blood proteins point to clots being one cause. It is thought 16% of such patients have trouble thinking, concentrating or remembering for at least six months. But the research team, from the universities of Oxford and Leicester, stress: Their findings are relevant only to patients admitted to hospital. They are "the first piece of the jigsaw" but further research is needed before they can propose or test any potential treatments. They tracked cognitive problems at six and 12 months only and through tests and questionnaires, which may "lack sensitivity". Identifying predictors and possible mechanisms was "a key step" in understanding post-Covid brain fog, study author Prof Paul Harrison, from the University of Oxford, said. Leicester's professor of respiratory medicine, Chris Brightling, said: "It's a combination of someone's health before, the acute event itself and what happens afterwards that lead on to physical and mental health consequences." Read full story Source: BBC News, 31 August 2023 -
News Article
Mysterious new long Covid symptom identified by scientists
Patient-Safety-Learning posted a news article in News
A new symptom of long Covid has been revealed by scientists at the University of Leeds. Though most people who contract Covid recover within a few days or weeks of experiencing initial symptoms, some people can experience longer, more persistent symptoms – termed Long Covid or post Covid-19 syndrome by the NHS. Until now, the most commonly identified symptoms have included extreme tiredness, loss of smell, muscle aches and shortness of breath. Others include memory problems, chest pain, insomnia, heart palpitations, dizziness, joint pain, tinnitus and depression and anxiety. Now, a new study has revealed a previously unidentified symptom of long Covid. Published in The Lancet medical journal, the research detailed a new symptom of the condition after a 33-year-old man was referred to the specialists’ clinic. The patient had a six-month history of what the authors describe as a “rapid purple discolouration” on his legs. When standing, he remarked that they would feel progressively heavier and become “tingly, itchy and dusky” in colour. He added that a rash would occasionally appear on his feet, but that the mysterious symptoms would disappear when laying down. The disorder is known as acrocyanosis or persistent and extreme blue or cyanotic discolouration. It typically occurs in the hands and feet but can also appear across the nose and ears. “This was a striking case of acrocyanosis in a patient who had not experienced it before his Covid-19 infection”, said co-author Dr Manoj Sivan, associate clinical professor and honorary consultant in rehabilitation medicine at the University of Leeds. “Patients experiencing this may not be aware that it can be a symptom of Long Covid and dysautonomia, and may feel concerned about what they are seeing. Similarly, clinicians may not be aware of the link between acrocyanosis and Long Covid. We need to ensure that there is more awareness of dysautonomia [malfunctioning of the nervous system] in Long Covid so that clinicians have the tools they need to manage patients appropriately.” Read full story Source: The Independent, 15 August 2023 -
News Article
Long Covid blood clues could prompt future trials
Patient Safety Learning posted a news article in News
People with long Covid have evidence of continuing inflammation in their blood, which could help understanding of the condition and how it may be treated, a UK study suggests. It found the presence of certain proteins increased the risk of specific symptoms, such as fatigue, in people sick enough to need hospital treatment. It is unclear whether milder cases of Covid have the same effect on the body. A test remains a long way off - but the findings may prompt future trials. Read full story Source: BBC News, 8 April 2024 Related reading on the hub: Top picks: 12 research papers on Long Covid -
News Article
‘Alarming’ rise in Americans with Long Covid symptoms
Patient Safety Learning posted a news article in News
Some 6.8% of American adults are currently experiencing long Covid symptoms, according to a new survey from the US Centers for Disease Control and Prevention (CDC), revealing an “alarming” increase in recent months even as the health agency relaxes Covid isolation recommendations, experts say. That means an estimated 17.6 million Americans could now be living with long Covid. “This should be setting off alarms for many people,” said David Putrino, the Nash Family Director of the Cohen Center for Recovery From Complex Chronic Illness at Mount Sinai. “We’re really starting to see issues emerging faster than I expected.” When the same survey was conducted in October, 5.3% of respondents were experiencing long Covid symptoms at the time. The 1.5 percentage-point increase comes after the second-biggest surge of infections across the US this winter, as measured by available wastewater data. More than three-quarters of the people with long Covid right now say the illness limits their day-to-day activity, and about one in five say it significantly affects their activities – an estimated 3.8 million Americans who are now experiencing debilitating illness after Covid infection. Read full story Source: The Guardian, 15 March 2024 -
News Article
‘Brain fog’ from Long Covid has measurable impact, study suggests
Patient Safety Learning posted a news article in News
People experiencing Long Covid have measurable memory and cognitive deficits equivalent to a difference of about six IQ points, a study suggests. The study, which assessed more than 140,000 people in summer 2022, revealed that Covid-19 may have an impact on cognitive and memory abilities that lasts a year or more after infection. People with unresolved symptoms that had persisted for more than 12 weeks had more significant deficits in performance on tasks involving memory, reasoning and executive function. Scientist said this showed that “brain fog” had a quantifiable impact. Prof Adam Hampshire, a cognitive neuroscientist at Imperial College London and first author of the study, said: “It’s not been at all clear what brain fog actually is. As a symptom it’s been reported on quite extensively, but what our study shows is that brain fog can correlate with objectively measurable deficits. That is quite an important finding.” Read full story Source: The Guardian, 29 February 2024 -
News Article
Long Covid ‘brain fog’ may be due to leaky blood-brain barrier, study finds
Patient Safety Learning posted a news article in News
From forgetfulness to difficulties concentrating, many people who have Long Covid experience “brain fog”. Now researchers say the symptom could be down to the blood-brain barrier becoming leaky. The barrier controls which substances or materials enter and exit the brain. “It’s all about regulating a balance of material in blood compared to brain,” said Prof Matthew Campbell, co-author of the research at Trinity College Dublin. “If that is off balance then it can drive changes in neural function and if this happens in brain regions that allow for memory consolidation/storage then it can wreak havoc.” Writing in the journal Nature Neuroscience, Campbell and colleagues report how they analysed serum and plasma samples from 76 patients who were hospitalised with Covid in March or April 2020, as well 25 people before the pandemic. Among other findings, the team discovered that samples from the 14 Covid patients who self-reported brain fog contained higher levels of a protein called S100β than those from Covid patients without this symptom, or people who had not had Covid. This protein is produced by cells within the brain, and is not normally found in the blood, suggesting these patients had a breakdown of the blood-brain barrier. Read full story Source: The Guardian, 22 February 2024 -
Event
Long COVID Physio International Forum
Sam posted an event in Community Calendar
untilLong COVID Physio will host the Long COVID Physio International Forum in partnership with Rocky Mountain University of Health Professions and Fisiocamera, sponsored by Kaiser Permanente and Realize Canada. The two day online forum will bring the lived experience to Long COVID, disability and rehabilitation. The Long COVID Physio International Forum is suitable for any audience, including health and social care professionals, people living with or affected by Long COVID or other conditions, academics, service providers, policymakers, students of allied health and rehabilitation professions, and people wanting to learn more. The Long COVID Physio International Forum programme will be released soon. Programme content will be delivered live and available on demand, covering three different streams: Science - learn the most up to date research from leaders in the field. Discussion - the hot discussions and debates on the topics we all want. Workshop - share knowledge and skills that make a difference. Registration will open June 15th 2022. Further details can be found here. -
News ArticleHospitals across the country are preparing for a significant increase in children needing treatment for a rare disease triggered by coronavirus. Paediatric departments across the NHS are recalling children’s nurses who have been redeployed to help care for adult patients as well as freeing up specialist intensive care beds to be ready for more cases of the rare condition first identified after the first wave last year. Because of how widespread COVID-19 infections have become in the last month, with the numbers of patients in hospital peaking at almost 40,000, experts believe they will see a larger number of children affected by the disease called Paediatric Multisystem Inflammatory Syndrome (PIMS). Modelling by London’s Evelina Children’s Hospital, which treated around 110 children with PIMS during the first wave of the virus, suggested for every 200 adults admitted to hospital across London, there was one child admitted with PIMS at the Evelina. This modelling cannot be used to predict admissions across the country, but paediatric experts believe they will begin to see a larger number of children with the condition with a peak expected in the next three weeks. It is thought COVID-19 triggers an inflammatory response among a very small minority of children – of all children infected with COVID-19, less than half of one per cent went on to develop PIMS. Those that do suffer severe inflammation in their blood vessels and can have damage to their heart. Symptoms of PIMS include a rash, fever and abdominal pain. Read full story Source: The Independent, 4 February 2021
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News Article
Covid coughing study suggests NHS staff at far greater risk than thought
Patient Safety Learning posted a news article in News
The NHS has been urged to rethink safety for thousands of frontline staff after new research suggested that Covid patients’ coughing is putting them at far greater risk of catching the virus than previously thought. The study found that coughing generated at least 10 times more infectious “aerosol” particles than speaking or breathing – which could explain why so many NHS staff have fallen ill during the pandemic. The research has led to fresh demands that anyone caring for someone with Covid-19, or suspected Covid-19, should be provided with the most protective equipment – including FFP3 respirator masks – and that hospital ventilation should be improved. Health workers are up to four times more likely to contract coronavirus than the general population, with infection rates among those on general hospital wards approximately double those of intensive care unit (ICU) staff – who do have access to the most protective PPE. Read full story Source: The Guardian, 3 January 2021
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