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For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? A recent blog on the hub from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid. If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences: Have there been times where you delayed or were unable to access the care you needed due to these or other challenges? Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare? What would make the biggest difference to you to make care more accessible? Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care? Please share your experiences. You can post anonymously below or you can sign up to the hub and become a member which will allow you to post on other topics too. Sign up is free and easy to do.- Posted
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Long Covid health staff 'abandoned and forgotten'
Patient Safety Learning posted a news article in News
Healthcare workers with Long Covid say the government needs to do more to support those left with life-changing disabilities since catching the virus. Nurse Rachel Hext, 37 from Paignton, insisted she caught Covid in her job as a nurse in a small community hospital in Devon. "We were clapped and called heroes, and now those of us who have been bereaved or disabled by it have been forgotten," she said. The government said it knew Long Covid could have a debilitating impact on people's physical and mental health, that there was a "range of support for staff" and it was funding research into it. Mrs Hext is one of a group of healthcare workers with long Covid who have taken their fight to the High Court to try to sue the NHS and other employers for compensation. The staff, from England and Wales, said they believed they first caught Covid at work during the pandemic and said they were not properly protected from the virus. She said: "I want acknowledgement and I want support for the people who need it. "Long Covid is absolutely life-changing. It's devastated us as a family." Read full story Source: BBC News, 20 March 2025 Related reading on the hub: "Forgotten heroes" – the sequel: a blog and resources from David Osborn The pandemic – questions around Government governance: a blog from David Osborn Healthcare workers with Long Covid: Group litigation- Posted
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Huge fall in NHS Long Covid clinics, study finds
Patient Safety Learning posted a news article in News
New research has revealed the number of NHS clinics for people living with Long Covid has more than halved, from a peak of 120 services in 2022 to 46 today. Services for children and young people are also affected with 13 specialists hubs reduced to eight. The BBC also discovered the NHS in England no longer monitored the status of Long Covid clinics and stopped doing so nearly a year ago. Spokespeople for NHS England and the Department of Health confirmed they were no longer tracking how many Long Covid clinics were still operating. Birmingham-based charity Long Covid Support used Freedom of Information (FoI) requests to ask hospitals about what clinics they have for patients. Margaret O'Hara, from the group, said changes in the way clinics were funded inside the NHS had led to many services being merged or stopped altogether. She told the BBC many parts of the NHS were "struggling to cope" and the picture for patients was one of "utter confusion". After the initial infection with coronavirus, rather than getting better, patients are instead left dealing with any number of problems including fatigue, pain and breathing difficulties. For many, getting any sort of diagnosis let alone treatment in a specialist NHS clinic is a long and sometimes fruitless journey, according to the support group. In a survey of patients affected by the condition, a spokesperson for Long Covid Support said they found about half of those they talked to considered themselves disabled by the condition. A similar number of adults surveyed also said they were not followed up by a healthcare professional and still had ongoing symptoms, despite when the NHS discharged them from treatment. Read full story Source: BBC News, 17 March 2025 Further reading on the hub: "Why should a vulnerable person be expected to tolerate lack of protections against Covid?"- Posted
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In a new blog on the hub, Laura Evans discusses the lack of protection against Covid-19 for vulnerable patients when going for a GP appointment or into hospital and shares her personal experience of being dismissed when asking for basic patient safety measures to be put in place. We'd like to hear your experiences. Are you a vulnerable patient? What is your Trust or GP practice doing to make you feel safe? Please comment below (sign up first for free) or you can email us at [email protected].- Posted
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Patients with Long Covid regain sense of smell and taste with pioneering surgery
Patient Safety Learning posted a news article in News
Doctors in London have successfully restored a sense of smell and taste in patients who lost it due to long Covid with pioneering surgery that expands their nasal airways to kickstart their recovery. Most patients diagnosed with Covid-19 recover fully. But the infectious disease can lead to serious long-term effects. About six in every 100 people who get Covid develop Long Covid, with millions of people affected globally, according to the World Health Organization. Losing a sense of smell and taste are among more than 200 different symptoms reported by people with Long Covid. Now surgeons at University College London Hospitals NHS Foundation Trust (UCLH) have cured a dozen patients, each of whom had suffered a profound loss of smell after a Covid infection. All had experienced the problem for more than two years and other treatments, such as smell training and corticosteroids, had failed. In a study aiming to find new ways to resolve the issue, surgeons tried a technique called functional septorhinoplasty (fSRP), which is typically used to correct any deviation of the nasal septum, increasing the size of nasal passageways. This boosts airflow into the olfactory region, at the roof of the nasal cavity, which controls smell. Doctors said the surgery enabled an increased amount of odorants – chemical compounds that have a smell – to reach the roof of the nose, where sense of smell is located. They believe that increasing the delivery of odorants to this area “kickstarts” smell recovery in patients who have lost their sense of smell to Long Covid. Prof Peter Andrews, a senior consultant surgeon in rhinology and facial plastic surgery who led the research, said surgery increased the airway by about 30%, so airflow also increased by about 30%. Read full story Source: The Guardian, 7 March 2025- Posted
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On 20 March 2020, Rowan Brown started to feel a tickle at the back of her throat. Over the next few days, new symptoms began to emerge: difficulty breathing, some tiredness. By the following week, the UK had been put under lockdown in a last-minute attempt to contain the spread of SARS-CoV-2, or Covid-19. Brown didn’t know then she was at the beginning of a condition that did not yet have a name, but which has since become known as Long Covid. After two weeks, she had a Zoom with a friend, and at the end of the conversation it was as if all life force had drained out of her body. Her doctor advised her to stay in bed for two weeks. Those two weeks turned into three and a half months of extended Covid symptoms: nausea, fevers, night sweats, intense muscle and joint pain, allodynia (a heightened sensitivity to pain), hallucinations, visual disturbances. By the end of the three months, she had noted 32 different symptoms. “I didn’t recognise the way my body felt at all: my skin, my hair,” she remembers now. “It was like being taken over by a weird alien virus, which I guess is what happened.” Brown, 48, is one of 2 million people in the UK thought to be experiencing long Covid symptoms; according to a study published last summer, roughly 400 million people worldwide have been affected. Often, long Covid patients experience mild primary infections, are never admitted to hospital and only realise there is a problem later, when the symptoms persist well beyond the usual two weeks. Some make a full recovery, some see improvements over time; others, like Brown, have seen little progress since being infected five years ago. One of the main challenges in diagnosing and treating long Covid is its unpredictability: research studies have linked it to more than 200 symptoms affecting every part of the body. Many patients go on to develop complications such as postural orthostatic tachycardia syndrome (POTS) and fibromyalgia, a chronic pain disorder; 59% of patients show signs of organ damage. The unwillingness to discuss chronic illness is especially concerning when combined with the scepticism faced by Long Covid patients, who have to advocate for themselves so that medical professionals, employers and loved ones understand the gravity of their illness. All of this conspires to make Long Covid patients feel invisible, voiceless and forgotten. Read full story Source: The Guardian, 2 March 2025 Further reading on the hub: Exploring the barriers that impact access to NHS care for people with ME and Long Covid Building an NHS that’s there for Long Covid and ME Top picks: 12 research papers on Long Covid It's time to confront Long Covid: An interview with Clare Rayner on why we must keep pushing for research, treatment and prevention Healthcare workers with Long Covid: Group litigation – a blog from David Osborn- Posted
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Almost 1 in 10 may have Long Covid, research finds
Patient Safety Learning posted a news article in News
Almost one in 10 people in England think they could have long Covid, according to analysis of national data. University of Southampton researchers examined information collected by NHS England that showed 4.8% of people reported having the condition. The analysis of more than 750,000 responses to the GP Patient Survey also found that 9.1% of people believe they may have long Covid. Long Covid is a chronic condition induced by Covid-19 infection, with symptoms including fatigue, feeling short of breath, brain fog, and heart palpitations. The information also shows higher rates of long Covid in deprived areas and people with particular ethnic backgrounds, parents, carers and those with another long-term condition. Professor Nisreen Alwan, who co-authored the study, said the analysis "adds further evidence of the unfairness of long Covid", with people who are "already disadvantaged in society more likely to be affected". "It also shows us that many people aren't sure if they have it, and may need diagnosis, treatment and support." He said the condition was "still a very significant issue impacting individuals, families, the economy and wider society". "We need to do more to prevent it, diagnose it, and properly support people who are affected by it," he added. Read full story Source: BBC News, 18 March 2025- Posted
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For healthcare to be safe it needs to be accessible. But what does this look like for people with ME (myalgic encephalomyelitis) and Long Covid? This blog from #ThereForME explores the barriers that impact access to NHS care for people with ME and Long Covid, and encourages the patient community to share their experiences. What is ME and why is accessing care difficult? ME (myalgic encephalomyelitis, sometimes referred to as ME/CFS) is a complex, chronic condition affecting multiple body systems.[1] Symptoms include debilitating cognitive dysfunction and post exertional malaise (PEM)—the exacerbation of symptoms following exertion, which can sometimes lead to a long-term deterioration—the cardinal symptom of ME. Patients with ME have one of the worst qualities of life of any disease: lower than various forms of cancer, multiple sclerosis or chronic renal failure.[2] The most severely affected patients are reliant on full-time care, sometimes becoming unable to speak or swallow, and may require hospital care to avoid dehydration and malnutrition. Since 2020 at least two million people in the UK have been affected by Long Covid. Approximately half of those affected meet the criteria for ME (though not all have been formally diagnosed), alongside those who have developed other long-term health issues following Covid infections.[3] For people with ME and Long Covid, accessing healthcare, whether for these or other conditions, can be challenging. PEM means that it can be difficult to receive care without risking a deterioration in symptoms, especially when reasonable adjustments are not made to minimise the exertion involved. A lack of knowledge, misunderstanding and stigma around the conditions exacerbate the issue, sometimes making patients reluctant to seek care and clinicians unlikely to understand the adjustments that are needed. Together, these and other barriers mean that people with ME and Long Covid may avoid, delay or be completely unable to seek the care they need, creating risks for patient safety. Difficulties accessing care at home A 2023 public consultation highlighted failures in the health service that included the accessibility of NHS care for people with ME—particularly for housebound or bedbound patients.[4] This was echoed by a 2024 #ThereForME survey of over 300 people with ME and Long Covid (and their carers).[5] Two-thirds of people responding to our survey said that the NHS had not been there for them when they needed it. The overall accessibility of care was highlighted as a core concern. Housebound patients answering our survey reported struggling to get access to home visits for monitoring and routine screenings or even remote/phone appointments. Patients reported delaying or avoiding seeking care as a result, or in some cases turning to private care as the only option to facilitate routine investigations. Learnings from care for other conditions can show how similar barriers have been addressed—for example, progress in care for people with learning disabilities.[6] Hospital systems and environments People with ME and Long Covid often experience difficulties navigating energy-intensive NHS systems and hospital environments. For many, the process of arranging and receiving medical care may go well beyond their limited energy envelope. This includes challenges like inflexible booking systems, appointments that are changed or cancelled at short notice, long journeys to medical appointments or needing to coordinate with multiple referrals and clinicians. Patients may delay seeking care, even in emergencies, due to the toll that a busy hospital environment is likely to take on their chronic symptoms. Particularly in A&E and inpatient care, busy waiting rooms and hospital wards may exacerbate sensitivity to noise, light and movement. Patients may be unable to sit upright in waiting rooms for long periods of time without their symptoms being exacerbated. While reasonable adjustments are key to accessibility,[7] and the 2021 NICE Guideline for ME/CFS outlines some adjustments that may be needed,[1] knowledge of the Guideline is limited in the NHS and the majority of NHS Trusts and Integrated Care Boards are not implementing it.[8] More widely, limited knowledge about ME, and similarly Long Covid,[9] means that patients don’t receive treatment that is sensitive to their symptoms—and, crucially, that avoids exacerbating them—because clinicians lack basic knowledge. People with ME and Long Covid, who are often particularly vulnerable to infections, may also avoid seeking healthcare due to concerns about acquiring infections. Many people with Long Covid report deterioration after Covid reinfections,[10] as the pandemic continues far from the headlines and with few measures in place to prevent airborne transmission. This may also impact the ability of family carers to access healthcare themselves, fearing acquiring an infection which could set back their loved one’s health. Trauma in healthcare Traumatic experiences in healthcare also play a role. Many patients with ME and Long Covid have experienced feeling dismissed or disbelieved, sometimes discouraging them from seeking care in future. The 2024 #ThereForME survey documented multiple cases of patients who said that, due to such experiences, they would be reluctant to seek NHS care even if experiencing life-threatening symptoms, expressing a sentiment that they would ‘rather die at home’ than seek healthcare in an emergency.[5] ME is significantly more common among women,[11] meaning that experiences of stigma linked to the condition overlap with gendered experiences of healthcare,[12] including how pain among women is routinely dismissed. Sharing your experiences We hope this blog has shone a spotlight on some of the challenges people with ME and Long Covid face when accessing care. If you have ME or Long Covid, or care for someone who does, we’re keen to hear about your experiences: Have there been times where you delayed or were unable to access the care you needed due to these or other challenges? Have you or the person you care for experienced an exacerbation of symptoms due to exertion involved in seeking healthcare? What would make the biggest difference to you to make care more accessible? Do you have any experiences to share where reasonable adjustments were made or a member of staff went out of their way to make it easier for you to access care? We’ll be collating the experiences shared and exploring what can be done about it. You can share your experience by posting in the Comments field below or join our conversation in the Community area of the hub. References NICE. Myalgic encephalomyelitis (or encephalopathy)/chronic794457 fatigue syndrome: diagnosis and management. NICE guideline [NG206], 29 October 2021. Falk Hvidberg M, et al. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLOS One, 2015; https://doi.org/10.1371/journal.pone.0132421. Dehlia MA, Guthridge MA. The persistence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) after SARS-CoV-2 infection: A systematic review and meta-analysis. J Infection, 2024. Department of Health and Social Care, Department for Education and Department for Work and Pensions. Consultation outcome. Improving the experiences of people with ME/CFS: interim delivery plan, 9 August 2023. ThereForME. Building an NHS that’s there for Long Covid and ME, July 2024. Anderton M. Exploring deep sedation at home to support people with learning disabilities to access medical investigations with minimal distress. Patient Safety Learning, 17 July 2023. Brar P. Diagnostic safety: accessibility and adaptations–a (un)reasonable adjustment? Patient Safety Learning, 19 September 2024. Action for M.E. Patchy, Misunderstood and Overlooked Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome in England Freedom of Information Findings Report, May 2023. Patient Safety Learning. Long Covid: Information gaps and the safety implications. Patient Safety Learning, 7 June 2021. WHO. Knocked back by COVID-19 reinfection – the experience of Abbie, a British nurse living with long COVID. World Health Organization, 30 November 2023. DecodeME. Initial findings from the DecodeME questionnaire data published, 24 August 2023. Anonymous. One hour with a women's health expert and finally I felt seen. Patient Safety Learning, 7 November 2024.- Posted
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This 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.- Posted
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In this interview, David Osborn, chartered occupational safety and health practitioner and member of the Covid-19 Airborne Transmission Alliance (CATA), speaks to Lotty Tizzard, Digital Content Manager at Patient Safety Learning, about how CATA was established during the pandemic to advocate for adequate respiratory protection for NHS employees. David explains how CATA advocated for the government and heath service to recognise that Covid-19 is passed on by aerosol transmission (through microscopic particles in the air). He also outlines why surgical masks do not adequately protect people against catching airborne viruses and describes how inadequate respiratory protective equipment (RPE) contributed to thousands of NHS staff catching Covid-19 at work. As a result, many healthcare workers died and a large number still live with the ongoing symptoms of Long Covid. David describes CATA's involvement as a Core Participant in the Covid-19 Inquiry and outlines what he hopes will be done to ensure the UK is better prepared for future pandemics. Patient Safety Learning is also a member of CATA. Clarification David wishes to clarify a point raised in the interview: "When talking about the “IPC Cell” I said that they 'didn’t produce minutes'. In fact, notes or minutes were taken at all IPC Cell meetings. The point I was making is that they were not published ('produced' in the sense of being released into the public domain), when the minutes of most other groups such as SAGE and NERVTAG were published. The few IPC Cell minutes that have trickled into the public domain have mostly been as a result of Freedom of Information requests by a colleague and a few that I have managed to obtain myself. In some cases, public authorities have taken around 18 months to disclose documents, and it has required the intervention of the Information Commissioner's Office. I anticipate that more minutes will be disclosed for public scrutiny as time goes on." You can read more about CATA and the Covid-19 Inquiry in David's blogs and presentations on the hub: Respiratory protective equipment: An unequal solution for healthcare workers? A blog by David Osborn Healthcare workers with Long Covid: Group litigation – a blog from David Osborn Covid-19 : A risk assessment too far? A blog by David Osborn CATA and the UK Covid-19 Public Inquiry: Presentation from David Osborn Join the conversation Were you working in health and social care during the pandemic? We'd like to hear about your experience of health and safety at work. Were you provided with adequate PPE to carry out your job safely? Did you catch Covid-19 while at work? You can join the conversation by commenting below (you'll need to sign up first) or get in touch with us directly by emailing [email protected]- Posted
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Around 5–10% of people with Covid infections go on to experience Long Covid, with symptoms lasting three months or more. Researchers have proposed several biological mechanisms to explain Long Covid. However, in a perspective article published in the latest Medical Journal of Australia, the authors argue that much, if not all, Long Covid appears to be driven by the virus itself persisting in the body. Since relatively early in the pandemic, there has been a recognition that in some people, SARS-CoV-2 – or at least remnants of the virus – could stay in various tissues and organs for extended periods. This theory is known as “viral persistence”. While the long-term presence of residual viral fragments in some people’s bodies is now well established, what remains less certain is whether live virus itself, not just old bits of virus, is lingering – and if so, whether this is what causes long COVID. This distinction is crucial because live virus can be targeted by specific antiviral approaches in ways that “dead” viral fragments cannot. Viral persistence has two significant implications: when it occurs in some highly immunocompromised people, it is thought to be the source of new and substantially different-looking variants, such as JN.1 it has the potential to continue to cause symptoms in many people in the wider population long beyond the acute illness. In other words, long COVID could be caused by a long infection.- Posted
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This is letter from #ThereForME calls for an inquiry into the persistent and historical gaps in care for those with ME and Long Covid. It is co-signed by 28 organisations and smaller initiatives and has been sent to the Chair of the Select Committee, Layla Moran MP. Patient Safety Learning are one of the signatories of this letter. The letter recommends that an inquiry is undertaken by the Health and Social Care Committee with a remit to investigate: Current gaps in care for ME and Long Covid, and their connections to historic approaches to infection-associated chronic conditions (including NHS care and research funding). Economic impacts, including the relationship between growing economic inactivity in the UK’s working age population and the lack of meaningful service provision for people with ME and Long Covid. Recommendations to strengthen future care and research for people with ME, Long Covid and other infection-associated chronic conditions - and how this can inform wider pandemic preparedness (including public health prevention strategies to mitigate the future health burden of infection-associated chronic conditions). Attitudes towards and assistance for patients with ME and Long Covid in society, including benefits provision, disability assistance, social care and guidance for settings including workplaces and education.- Posted
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This study in the Journal of Medical Virology aimed to assess the extent and the disparity in excess acute myocardial infarction (AMI)-associated mortality during the pandemic, focusing on the outbreak of the Omicron strain. Using data from the US Centers for Disease Control and Prevention's (CDC's) National Vital Statistics System, the authors found that excess death, defined as the difference between the observed and the predicted mortality rates, was most pronounced for the 25–44 years age group. Excess deaths ranged from 23%–34% for the youngest compared to 13%–18% for the oldest age groups. The trend of mortality suggests that age and sex disparities have persisted even through the Omicron surge, with excess AMI-associated mortality being most pronounced in younger-aged adults.- Posted
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The aim of the Long Covid webinar held on 5 July 2023 was to discuss where we are now with Long Covid clinics and research. The presentation videos from the webinar can be accessed from the link below.- Posted
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In a new Lancet Respiratory Medicine Series about Long Covid, Sally J Singh and colleagues discuss the origins of respiratory sequelae and consider the promise of adapted pulmonary rehabilitation programmes and physiotherapy techniques for breathing management. Pratik Pandharipande and colleagues review the epidemiology and pathophysiology of neuropsychological sequelae of COVID-19-related critical illness, highlighting the combined threat of long COVID and post-intensive care syndrome (PICS), and outline potential mitigation strategies. Finally, Matteo Parotto and colleagues discuss pathophysiological mechanisms of diverse, multisystem sequelae in adult survivors of critical illness, including longitudinal effects of endothelial and immune system dysfunction, and consider the challenges of providing appropriate care and support for patients.- Posted
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My last blog, "Forgotten heroes" – the sequel, built upon a very moving BBC Panorama programme Forgotten heroes of the Covid front line. The BBC documentary told the sad story of healthcare workers (HCWs) who had bravely and knowingly put themselves in harm's way to care for their patients during the darkest days of the pandemic. Many lost their lives, while many more were rendered so severely injured by the disease (Long Covid) that they were (and remain) unable to work and have been unceremoniously sacked by their NHS Health Trusts/Boards. The way that an organisation manages its activities is known as 'governance'. Good governance will lead to high standards of ethics, morality, care and compassion for the people who work within it and those who may be affected by its acts and omissions. Hence, when applied to a whole country, it is known as 'Government', its departments and agencies. In this blog, I propose a possible hypothetical scenario that may have led to the tragic situation revealed by the BBC documentary. I hope this will lead you to consider the standards of 'governance' that apply to the 'duty of care' which a Government owes to its HCWs during a pandemic and what, morally and ethically, should be done to support those "forgotten heroes" if the Government’s governance should be found to be severely lacking. But is the scenario I am asking you to imagine hypothetical or is it real? I shall leave that to your judgement – and that of the Covid-19 Public Inquiry. The hypothetical scenario In the wake of the SARS outbreak (Severe Acute Respiratory Syndrome) in 2003, an enlightened Chief Scientific Advisor set a plan in motion to prepare the country for a major pandemic. All epidemiologists worth their salt knew that this was inevitable and would happen one day. Thoughts began to turn towards how HCWs should be protected while caring for infected patients. After all, if large numbers of them became infected then who would look after the rest of us? The health service would most likely be overwhelmed and the country would be thrown into chaos and civil disorder. So a laboratory run by scientists from the country’s foremost health and safety regulatory body undertook some research to discover how well the standard surgical masks (‘medical masks’) would fare in a pandemic. The results were unambiguous – “badly”! The scientists found live viruses behind every surgical mask tested, including fluid resistant surgical masks (FRSMs), when presented with an artificially generated sneeze or cough. The scientists were quite clear in recommending that HCWs should wear respiratory protective equipment (RPE) in order to be properly protected against inhalation of harmful (pathogenic) viruses in the event of a pandemic. There are several types of RPE, the disposable respirator known as FFP3 (filtering facepiece) and some other reusable types as well, which give good protection. Not long afterwards, the 'Swine flu' pandemic raced across the world. This triggered the Government to invest in a massive stockpile of RPE. As the years rolled by, this equipment reached its expiry date but, instead of renewing them, stickers were over the expiry dates extending their life after what were called ‘stringent tests’. One has to question how ‘stringent’, when it is known that some of the materials from which they are made degrade over time and this impairs their efficiency. Tests (even ‘stringent’ ones) can only show how a mask performs at the time of the test and not predict how it will perform in a few years’ time. Manufacturers assign an ‘expiry date’ for a very good reason – when used beyond that date they may fail in such a way that the wearer is unwittingly inhaling the hazardous airborne materials, such as dusts or virus-laden aerosols from which they thought they were being protected. Or, also dangerous, bits of the degrading mask may be inhaled by the wearer presenting a choking hazard. Around that same time. some of the health department’s experts that concluded that SARS coronaviruses were transmitted by droplets and the airborne route via aerosols and tiny particles known as 'droplet nuclei'. They recommended that RPE such as FFP3 respirators should be used when providing routine care to infectious patients. The years passed by and the stockpile came up for review again. Experts from the Government’s health department met to decide what to do. After all, there would be a significant cost to the country in renewing the stockpile, most of which was well out of date. The experts came up with a bright idea –- why not implement a process called 'stock rotation' where PPE would be withdrawn from the stockpile in good time before its expiry date and sent for use in the NHS, replacing it with new PPE. One might question why this simple process wasn't thought of back when the stockpile was first established – after all, it is a fairly commonplace practice in warehousing perishable goods with a shelf-life. This group was fortunate in that it included one of the experts who had authored the above-mentioned paper. Curiously though, they decided that all general ward, community, ambulance and social care staff would only be equipped with FRSMs who they considered need not be protected with proper RPE. Perhaps their attention had wandered away from SARS and were focused on other respiratory diseases like flu (notwithstanding the massive loss of life these caused during the last century). Roll forward a few more years and a SARS pandemic starts to spread out from a place called Wuhan in China with a virus that was 80% similar to its predecessor from 2003, which had been proven to spread by airborne/aerosol transmission.. The new disease was classified as an airborne HCID (high consequence infectious disease) for which the country’s health and safety rules required that HCWs be equipped with RPE (not surgical masks). The Director-General of the World Health Organization (WHO) announces to the world that the disease was airborne (although apparently ‘not in a military sense’ which is a little difficult to understand). A senior medical officer tells a committee of politicians that the disease approaching the country had a very strong force of transmission and is airborne. Then the pandemic arrived in the country, after having wreaked havoc with health services elsewhere in Europe. However, what the pandemic planners did not seem to have taken into account was that the health and safety rules associated with HCIDs required that RPE must be worn by healthcare workers when caring for infectious patients and now the stockpile of respirators was far too low. With not enough respirators to go round, what on earth was to be done? A Government Committee met to consider this dilemma. Two of the experts were present who had authored the paper mentioned above which had explicitly stated that RPE should be worn for SARS coronaviruses, and one of these experts had made the fateful recommendations about the PPE stockpile. This must have all been terribly embarrassing. Anyway they came up with a pragmatic answer to the problem. Solution: Declassify the disease so it isn’t an HCID any more. Done with a phone call to the right person and a quick confirmatory letter back from them. The disease was no longer ‘high consequence’ (just two days after a global pandemic had been declared by the WHO and the worldwide death toll was on a sharp upward trajectory). But oh dear! There is still a problem. Regardless of any HCID rules, the country’s health and safety laws say that if a hazard is airborne then RPE is required (which, as we know, does not include these paper surgical masks). The emergency pandemic legislation brought in by the country’s government had not repealed, revoked or suspended any of the health and safety laws and so they were still in force. This, being 'criminal law' was something that people could be jailed for breaching. Solution: Despite existing evidence that SARS coronaviruses (and other respiratory infectious diseases, such as tuberculosis) are transmissible via the airborne route, the health department pronounces that the virus causing the current pandemic is actually no longer airborne. They say that it is only transmissible via droplets that quickly fall to the ground or onto surfaces. They say that they will only cause infection if they land on someone’s mouth, nose or eyes or a person touches those surfaces and then touches their mouth, nose or eyes. So the country’s response strategy centres around keeping people 2 metres apart and handwashing. The airborne route is largely ignored except for some HCWs who don’t believe them and buy their own RPE – only to be instructed by the hospital authorities to take them off (on pain of disciplinary) and put on surgical masks instead. After all, if they wore these respirators it might scare the patients. But there is yet another problem. When any pathogenic viruses are ‘on the loose’ then the country’s health and safety law says that approved PPE must be worn to protect the wearer if no other, more effective risk control measures can be implemented. For administering close-quarter care to infectious patients no other risk control measures are practical other than PPE. The problem is that surgical masks are not approved 'PPE'. They are designated as ‘medical devices’ which are intended to protect the patient from drops of mucus or saliva that may come out of a HCW’s nose or mouth and may infect the patient. Furthermore the European standard for surgical masks says that they are not intended for protection of the wearer. Solution: We’ll call surgical masks 'PPE' anyway – after all the middle 'P' (protective) has a nice ring to it and should lead HCWs to believe they’re being protected (despite the underlying risk that they may be lulled into a false security and actually become more vulnerable as a result). The health and safety regulator appears somewhat concerned by this turn of events and makes representations to the other Government departments and the NHS that they should refer to RPE (such as FFP3s) as 'respirators' not 'masks' in order to ensure that the distinction is properly understood. However, this is ignored and FFP3s continue to be referred to as 'masks. So you now have 'FFP3 masks' and 'surgical masks'. After all, one mask sounds much the same as another doesn’t it? After all, if you were to refer to one as a 'respirator' (which sounds much better and more efficient) and the other as a 'mask' (which doesn’t) then workers might begin to question why they are not being given the best protection. Furthermore, all politicians, media and just about everyone else in the country started referring to surgical masks as PPE despite the fact that they are not. When concerns are raised with the safety regulator about this, their response is that, whilst they agree surgical masks are not PPE, the term PPE has now entered common parlance and it would be difficult, if not impossible, to reverse this. And so the myth that surgical masks are personal protective equipment persists to this day. A few days after the ‘downgrade’ from RPE to surgical masks, with the first wave now really taking hold, a doctor in Accident and Emergency at one hospital describes their situation to a politician as carnage and chaos. They were distraught as they didn’t have any proper PPE and needed FFP3s. The doctor felt as though they were being thrown to the wolves. They thought it likely that some of them were going to die as a result. Of course, sadly, that doctor was not wrong. Many did die. Many, many more became very ill with very serious and long-lasting health effects. But where, one might ask, is that regulatory body that is supposed to ensure that workers are kept healthy, safe and properly protected against the hazards they’re working with? Well, they say that decisions about respirators and masks in healthcare sector have nothing whatsoever to do with them. They say that it is the country’s health department and the public health people who issue the guidance about mask-wearing in the healthcare sector. It is they who are responsible for these decisions. Then another problem arises. Oh dear, don't health and safety laws just keep getting in the way when you’re trying to manage a pandemic! For instance, there’s one which says that when a worker contracts a serious disease through their work (or dies of it), then it must be reported to that health and safety regulator as 'occupational exposure'. However, it wouldn’t be good for morale amongst healthcare workers if the true impact the disease was having upon them became widely known. Neither would it be good for those people in the health department who had been responsible (and accountable) for decisions they made about the stockpile the instruction they had given to downgrade from respirators to surgical masks. Solution: Discourage such reporting – ideally stop it altogether! Perhaps, when employers do make such reports, the safety regulator should reject them on the grounds that the healthcare workers probably didn’t catch their disease from the infectious patients they were working with (coughing their germs into the air around them) but more likely ‘out in the community’. So these unfortunate healthcare workers have no official record made of their 'occupational exposure' to the disease and any such suggestion is vigorously denied by their employers. This has the potential to severely hamper those workers when, after a year of sick pay, they are unceremoniously sacked and may need evidence that their disablement was caused through their work. Well, that brings us to the end of our hypothetical scenario. What do you think? Truth or fiction? Related reading: Since the publication of this blog, A Byline Times' investigative journalist has delved deeper into the story and his findings, published here, provide more detail.- Posted
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As reported recently, the Scottish Healthcare Workers Coalition called upon the Scottish Government to reinstate 'universal masking' in health and social care settings. In this statement written in support of their campaign, an occupational safety and health practitioner, David Osborn, explains the legal requirements for risk assessments that the Government ought to have undertaken before reaching such a decision that exposes healthcare staff to the life-changing consequences associated with repeat Covid-19 infections. He also explains the legal duty of the Government to consult with workers before implementing changes that may affect their health and safety. Neither duty (risk assessment nor prior consultation with workers) appears to have been well met, putting the Scottish Government and Health Boards in breach of UK-wide health and safety law. The decision by the Scottish Government to withdraw the coronavirus guidance for extended use of facemasks across health and social care is clearly a matter that has significant implications for the safety of health and social care workers. It is a legal requirement under the Health and Safety at Work Act etc 1974 that employers (including Governments and their Health Boards) must do at least two things before implementing a change that may materially and substantially impact workers’ health and safety at work: They must conduct a suitable and sufficient risk assessment of the proposed actions; and They must consult with all employees or their elected representatives concerning the proposed change. 1. Risk assessment To be “suitable and sufficient” the risk assessment for the abandonment of universal masking should have considered several factors such as: The fact that variants of the SARS-CoV-2 virus continue to evolve which are becoming more immune resistant and subject to vaccine escape. The opportunity for viruses to mutate in this way depends upon the sheer number of viruses in circulation within the population. The greater the number, then statistically the more likely it is that a variant could evolve with potential to partially or wholly defeat our current vaccines and greatly impair the nation’s recovery from the pandemic. It just takes for one single virus to mutate in a certain catastrophic way for this to happen – as will have been the case in Wuhan in 2019. Any responsible Government and Health Board should take all reasonably practicable steps to reduce the number of viruses circulating in the population, particularly in health and social care premises. The Scottish Government appears blind to this simple but important duty that it owes to the Scottish people and its healthcare workers in particular. Evidence is emerging that cases of SARS-CoV-2 reinfection and associated hospitalisations and deaths have increased in relative frequency as new Omicron lineages have emerged with enhanced transmissibility or immune escape characteristics. The evidence also suggests that the time interval between repeat infections is decreasing, particularly (and rather peculiarly) amongst individuals who have previously been infected with the Alpha (‘Kent’) variant which arose during the second wave (winter 2020-21). Many healthcare workers will have been infected during that period. The consequence is that these workers are (a) that these infections may recur more frequently and (b) are at greater risk from these repeat infections. It has long been established that each time a person is infected or reinfected with the SARS-CoV-2 virus they have a risk of developing Long Covid, which can have severe detrimental effect on their health and quality of life – sometimes causing debilitating, irreversible, long-term health conditions. The more times they become reinfected, the worse these conditions may be and the longer they may last. By law, the risk assessment must be recorded (on paper or electronically) and be made available to employees and their representatives immediately upon request. I therefore call upon the Scottish Government to confirm whether or not such a risk assessment was undertaken before the decision was taken to abandon universal masking. If one was done, then the Government and the Health Boards should publish it so that interested parties, such as the Coalition, can determine whether it has properly considered all relevant factors that have a direct bearing on the increased risk of healthcare worker infection and how they plan to mitigate that risk. If no such risk assessment was done, either by the Government centrally or by its Health Boards, then they have acted recklessly and unlawfully. 2. Consultation For clarity, the “consultation”, which is required by the Safety Representatives and Safety Committees Regulations 1977 and the Health and Safety (Consultation with Employees) Regulations 1996, has a very clear meaning. It means: a) providing employees, or their safety representatives, with all relevant information relating to any proposed change in health and safety arrangements (including giving them sight of any risk assessments) before that change is implemented; b) allowing the employees and their representatives sufficient time to discuss amongst themselves and seek any further advice they may need to inform an opinion about the change; c) the employer must then take account any the feedback that it receives. These are serious matters. The UK Government and the devolved administrations, through inept planning for pandemics and the issue of seriously flawed guidance, failed to provide health and social care workers with the necessary PPE to prevent them inhaling airborne virus whilst they cared for highly infectious patients. It is quite understandable that our brave healthcare workers are now so aggrieved by the Government’s decision. These are the same people for whom we, the public, stood and clapped so proudly at our doorsteps during those dark days. The chaotic state of the UK’s planning and preparedness for pandemics has been laid bare at the UK Covid-19 Public Inquiry. During future sessions, the Inquiry will receive evidence concerning the deception which was wrought upon healthcare workers that the flimsy paper masks they were given would keep them safe from the disease when health and safety law requires proper tested and certified respirators to be used (such as FFP3 and equivalent) when workers are exposed to dangerous microbiological hazards in their workplace. Current World Health Organization guidance still advocates that universal masking policies in health and social care premises do still have their place in Governments’ armoury of defence measures to keep healthcare workers safe. Given all that they have already been through, combined with the ongoing suffering that many of them are experiencing from the disease they have contracted whilst caring for us, surely it is now time for the Scottish Government to pay greater consideration and respect for their health and safety. Some commentators may view the abandonment of universal masking as the Government playing “Russian Roulette” with their health by "letting the virus rip" – as sadly it is likely to do as the autumn and winter seasons approach. -
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UK Covid-19 Inquiry - Every Story Matters (June 2023)
Patient-Safety-Learning posted an article in Covid-19 Inquiry
The UK Covid-19 Inquiry is the independent public inquiry set up to examine the UK’s response to and impact of the Covid-19 pandemic, and learn lessons for the future. In order to fully understand the impact of the pandemic on the UK population, the Inquiry is inviting the public to share their experiences of the pandemic by launching Every Story Matters. It will inform the Inquiry’s work by gathering pandemic experiences which can be brought together and represent the whole of the UK, including those seldom heard. The output of Every Story Matters will be a unique, comprehensive account of the UK population’s experiences of the pandemic, to be submitted to the Inquiry’s legal process as evidence. Share your story here. Every Story Matters provide a toolkit that contains information and creative assets that can be used to encourage participation in Every Story Matters. Every Story Matters aims to provide inclusive methods for people to talk about their experience of the pandemic, so anyone that wants to share their story feels heard, valued, and can contribute to the Inquiry. tips on engaging people to take part in Every Story Matters print campaign assets to download online campaign assets to download information on how to use campaign assets information on accessible engagement options. -
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A significant number of doctors and other healthcare workers have developed post-acute COVID, including a large number who developed it as a result of workplace exposure to Covid-19. This paper examines the impact post-acute Covid symptoms have had on the medical workforce, personally and professionally. It provides a unique and valuable insight into the experience of UK doctors suffering from post-acute Covid. It has been informed by a UK survey of over 600 doctors suffering from the continuing effects of an infection with Covid-19, as well as wider research of the issues. The survey was undertaken by the British Medical Association (BMA) in partnership with Long COVID Doctors for Action. This is the first comprehensive survey of doctors with post-acute Covid health complications. This paper should inform the support needed by current sufferers of post-acute COVID in the NHS workforce, and help protect services and patients now and in the future. Recommendations The Department of Work and Pensions must act without delay on current IIAC (Industrial Injuries Advisory Council) recommendations for the specific circumstances where Long COVID should be recognised as an occupational disease for healthcare workers. Alongside this, there must be investment in research to support the additional designation as an occupational disease of the broader range of post-acute COVID symptoms this report shows are highly prevalent among sufferers. UK Government must urgently develop a package of financial support for doctors and healthcare workers with post-acute COVID. Health and Safety Executive must provide clear guidance to health service employers on the legal requirements to carry out risk assessments and report instances of infection under RIDDOR (Reporting of Injuries, Diseases and Dangerous Occurrences Regulations). The Department of Health and Social Care must ensure funding is allocated for appropriate PPE (Personal Protective Equipment) and RPE (Respiratory Protective Equipment) in health and care services to ensure staff are protected. UK health services must increase access and improve waiting times to post-acute COVID care such as NHS COVID clinics. UK health services must ensure care for those with post-acute COVID, such as that delivered through NHS COVID clinics, is multidisciplinary and offers access to both physical and mental healthcare. Health education bodies across the UK must fund increased occupational medicine training posts. UK health service employers must prioritise timely access to occupational health services and assessments for staff with post-acute COVID. UK health service employers must promote greater awareness amongst managers of the needs of staff with post-acute COVID and support measures required. UK governments and health systems must ensure health service estates are safe for staff and that the risk of infection from infectious diseases, like COVID-19, is reduced, including ensuring improved and appropriate ventilation.- Posted
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In this episode of the Medicine and the Machine podcast, Scottish GP Gavin Francis talks about the need to reconsider the importance of convalescence. He discusses the role of GPs in supporting patients through recovery after a hospital admission or period of illness and talks about a lack of awareness of the principles of convalescence amongst patients. -
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A 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.- Posted
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In this video, the Long Covid Groups' KC Anthony Metzer questions Professor Kamlesh Khunti to find out if he agrees that Long Covid should be cited as a reason not to allow Covid-19 to spread unchecked via non-pharmaceutical interventions (NPIs). Professor Khunti is a member of SAGE and former Chair of the National Long Covid Research Working Group.- Posted
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The only masking that’s going on is that of the government’s continued failure to get to grips with the virus, writes George Monbiot in this Guardian opinion piece. For some people, going to hospital may now be more dangerous than staying at home untreated. Many clinically vulnerable people fear, sometimes with good reason, that a visit to hospital or the doctors’ surgery could be the end of them. Of course, there have always been dangers where sick people gather. But, until now, health services have sought to minimise them. Astonishingly, this is often no longer the case. Across the UK, over the past two years, the NHS has been standing down even the most basic precautions against Covid-19. For example, staff in many surgeries and hospitals are no longer required to wear face masks in most clinical settings. Reassuring posters have appeared even in cancer wards, where patients might be severely immunocompromised. A notice, photographed and posted on social media last week, tells people that while they are “no longer required to wear a mask in this area”, they should use hand sanitiser “to protect our vulnerable patients, visitors and our staff”. Sanitising is good practice. But Covid-19 is an airborne virus, which spreads further and faster by exhalation than by touch.- Posted
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Full opening statement of the Long Covid groups (Long Covid Support, Long Covid SOS and Long Covid Kids) to Module 2 of the Covid-19 Inquiry as representative organisations for nearly 2 million adults and children who have suffered from Long Covid.- Posted
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