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Found 72 results
  1. Content Article
    Documents include: COVID-19 guideline scope: management of the long-term effects of COVID-19 Equality impact assessment Management of the long-term effects of COVID-19 Management of the long-term effects of COVID-19: organisations that responded to targeted peer consultation on the draft scope Management of the long-term effects of COVID-19:Targeted peer consultation on draft scope comments table Summary of consultation comments and responses for COVID-19 guideline scope: management of the long-term effects of COVID-19. To find out more about the guideline and to register as a stakeholder, please follow the link below. For ease, the above documents are also attached below.
  2. Content Article
    Key takeaways Presentation weeks and/or months after ICU discharge Physical and mental tolls of critical illness and care Beware of the possible warning signs, which may include: muscle weakness or problems with balance, problems with thinking and memory, severe anxiety, depression and nightmares The medical community expects to see a high number of PICS cases among COVID-19 survivors due to the increasing number of patients receiving critical care.
  3. News Article
    The Health Secretary is urging the public – and especially young people – to follow the rules and protect themselves and others from COVID-19, as new data and a new film released today reveal the potentially devastating long-term impact of the virus. The symptoms of ‘long COVID’, including fatigue, protracted loss of taste or smell, respiratory and cardiovascular symptoms and mental health problems, are described in a new film being released today as part of the wider national Hands, Face, Space campaign. The film calls on the public to continue to wash their hands, cover their face and make space to control the spread of the virus. The emotive film features the stories of Jade, 22, Jade, 32, Tom, 32 and John, 48, who explain how their lives have been affected – weeks and months after being diagnosed with COVID-19. They discuss symptoms such as breathlessness when walking up the stairs, intermittent fevers and chest pain. The film aims to raise awareness of the long-term impact of COVID-19 as we learn more about the virus. A new study from King’s College London, using data from the COVID Symptom Study App and ZOE, shows one in 20 people with COVID-19 are likely to have symptoms for 8 weeks or more. The study suggests long COVID affects around 10% of 18 to 49 year olds who become unwell with COVID-19. Read full story Source: Gov.uk, 21 October 2020
  4. Content Article
    Sudre et al. analysed data from 4182 incident cases of COVID-19 who logged their symptoms prospectively in the COVID Symptom Study app. 558 (13.3%) had symptoms lasting >28 days, 189 (4.5%) for >8 weeks and 95 (2.3%) for >12 weeks. Long-COVID was characterised by symptoms of fatigue, headache, dyspnoea and anosmia and was more likely with increasing age, BMI and female sex. Experiencing more than five symptoms during the first week of illness was associated with Long-COVID. This model could be used to identify individuals for clinical trials to reduce long-term symptoms and target education and rehabilitation services. *Note: this article is a preprint and has not been through the peer review process yet.
  5. Content Article
    Dr Jake Suett: My experience of suspected 'Long COVID' I have been unwell for 109 days now, and the entire illness has been incredibly frightening, with episodes of severe shortness of breath, cardiac-type chest pains and palpitations to name a few. I think I am slowly improving but am left with residual symptoms that have never gone away entirely but regularly return strongly in waves. In March, I was working as a staff grade intensive care doctor. I was working closely with patients with COVID-19 and had an illness that began with fever, dry cough and shortness of breath. I had braced myself for the coming wave of COVID-19 and was helping my hospital to prepare. I had studied the mortality data from a paper in The New England Journal of Medicine1 and had concluded that, as a young, healthy and active 31-year old doctor I would likely survive (very likely) or die (really quite unlikely) if I became exposed to the virus. I had not anticipated the existence of this strange third possibility of still feeling extremely ill nearly 16 weeks later. I realised that I was not alone with my symptoms when I read Professor Paul Garner’s blog in the BMJ2 about six weeks into my illness. I joined some of the support groups on Facebook including 'Long Covid Support Group' and was suddenly faced with the realisation that there were thousands of us in the same position. It was a bittersweet moment as it helped me to feel less alone, but on the other hand confronted me with a tremendous volume of genuine human suffering that was going unrecorded and unnoticed due to the circumstances of the crisis. People are experiencing incredibly frightening symptoms but some have found it hard to access healthcare as the NHS was being protected from being overwhelmed. Most have remained at home and have not been admitted to hospital. Many were unable to access testing in the first month of their illness, and most were never admitted to hospital. I wrote a letter (attached at the bottom of this blog) that other people could send to their MPs in an attempt to raise awareness of the situation of people suffering persistent symptoms. Here are my current thoughts on the issue of 'Long COVID' and what the next practical steps should be in addressing the problem for sufferers and society in general. 'Long COVID' In some people, there are prolonged symptoms of COVID-19, which have been called 'Long COVID' or 'Post-acute COVID-19'. There is a growing body of evidence that a significant minority of patients are suffering persisting and distressing symptoms that in ordinary times would represent 'red-flag' symptoms requiring urgent investigation. Data from the COVID-19 symptom tracker app shows that 1 in 10 patients are having symptoms for longer than three weeks3. The British Lung Foundation and Asthma UK’s post-COVID survey4 of over 1000 patients, of which over 800 had not been admitted to hospital, found that: “…many people who had mild – moderate COVID are now on a long road to recovery, affecting both their physical and mental health” and “When asked what symptoms most affect them, the top five were: breathing problems (90%), extreme tiredness (64%), sleep problems (22%), cough (22%) and changes in mood, or anxiety or depression (22%). The majority of people had not experienced these symptoms before having COVID.” The symptoms experienced by these patients are frightening and are consistent with other serious differential diagnoses that would usually warrant urgent investigation to rule out serious causes. These symptoms include shortness of breath, chest pain and various neurological symptoms (numbness, weakness, visual disturbances etc). Many people report emergence of new symptoms late in the course of their illness, a relapsing-remitting pattern to their symptoms, and many have reported a mild initial illness, all of which adds to the distress and uncertainty of the condition. Tim Spector writes, “There is a whole other side to the virus which has not had attention because of the idea that ‘if you are not dead you are fine”3. Some patients have reported requiring treatment for con-current bacterial pneumonia, urinary tract infections and pulmonary emboli. Some have reported other serious outcomes such as strokes and cholecystitis. Some that have had investigations have reported serious abnormalities on blood tests, echocardiograms and CTs. Most of these patients have not required hospital admission and many have not been able to access PCR testing at the early stage of their illness. At the moment, this data is not being collected in a scientific fashion, which is an impairment to building up an evidence base around the topic. This data urgently needs to be moved from anecdote into scientific studies and then applied clinically to help people. Some high-profile figures have spoken out about their experiences with a prolonged illness including two Professors of Infectious Diseases and an MP5,6,7. There are many examples of people remaining unwell for three months and longer8 (see letter for more). Articles in the BMJ address the issue from the perspective of a GP9, and from the perspective of occupational health10. We already have emerging evidence of longer-term complications affecting the respiratory11, cardiovascular12, endocrine13, neurological14,15 and gastrointestinal16 systems in at least some patients after COVID-19 and a new Kawasaki disease type illness has been identified in children following infection17. There are also plenty of historical warnings about long-term effects from the SARS outbreak in 200318,19 as well as well documented complications of other viral illnesses. On the basis of this, it is important for us to keep an open mind about what the underlying pathophysiology is in 'Long COVID' patients and encourage further epidemiological, mechanistic and treatment studies by those with expertise in the field. It would be dangerous to assume that pathology that has been detected in hospital patients with COVID-19 can not also affect those who may have managed to avoid admission. Dealing with this issue will require research and collaboration between multiple different medical specialties. Perhaps collaboration and joint guidelines should be considered early on as well as urgently starting studies that capture this cohort. (The PHOSP-COVID study unfortunately only captures follow up in patients after hospitalisation, although of course is a welcome step in the right direction.) The issue has started to be talked about more widely this week. Andrew Gwynne MP asked the Leader of the House of Commons for a debate or statement on 'Long COVID' during business questions on 2 July 2020 and First Minister of Scotland Nicola Sturgeon discussed the issue at Wednesday 1 July’s daily briefing saying, “One of the things it took us longer to learn, and we are still learning, is that even for people who don’t become very seriously unwell and don’t die from it, it can still do really long-term damage.”20 On Sunday 5 July, it was announced that NHS England would be launching a tool to aid long-term recovery21 and a statement from NHS England said, “…evidence shows that many of those survivors are likely to have significant on-going health problems, including breathing difficulties, enduring tiredness, reduced muscle function, impaired ability to perform vital everyday tasks and mental health problems such as post traumatic stress disorder (PTSD), anxiety and depression.”22 This is a welcome step and provides recognition to those who have been left struggling with persisting symptoms. However, it is important that these services do not exclude those who did not require hospital admission nor those whose clinical features suggest COVID-19 but who may have had trouble accessing testing or have suspected false negative results for a variety of reasons23,24,25,26. Clinicians need to be able to access these services for their patients if they feel they would benefit from them. What is the danger? Of course, the pandemic is a crisis and resources have been stretched to the limits. There is no cure for COVID-19 and there is still little evidence to suggest what the pathophysiology of the prolonged symptoms are. It’s been a challenging time for politicians, healthcare professionals and patients alike. However, there are risks with the current situation for those with 'Long COVID' that can be solved now as we move away from the peak of the first wave of the pandemic. The risks are: That serious but treatable complications of COVID-19 may not be detected and managed, such as thromboses, secondary infections, or cardiovascular, endocrine or neurological sequelae etc. That serious but treatable pathology may go undetected if misattributed to COVID-19 and not investigated. There is a third danger from a public health perspective, which is to mistakenly consider outcomes in terms of death vs survival, and to not consider the possibility of long-term morbidity and delayed mortality in survivors of COVID-19, and therefore miscalculate the risk vs benefit calculations of easing lock-down and other public health measures. There is the danger that we miss this opportunity to have robust epidemiological studies to capture the entire spectrum of COVID-19 disease, and therefore any potential morbidity and mortality associated with “Long-COVID” symptoms will go undetected, along with any clues that may be gained regarding the pathophysiology of COVID-19 and treatment options. What needs to be done? I believe that dealing with the problem of 'Long-COVID' will require a response from government, public health bodies, healthcare systems, scientists and society. Collectively, we will need to: Establish a scientific approach to the study of patients undergoing prolonged COVID-19 symptoms (ensuring the cohort that was not hospitalised and has persisting symptoms is also captured in this data). This needs to include epidemiological, mechanistic and treatment studies. (The Long-term Impact of Infection with Novel Coronavirus (LIINC) study27 being carried out at University of California San Francisco is a good example of the type of study required for capturing objective data on the full spectrum of COVID-19 disease, including in those individuals with a prolonged illness. Maintain an open-minded approach to the underlying pathophysiology of the condition28,29, and avoid classifying it with existing names for diseases until there is sufficient evidence to make these statements. Include Long COVID patients in the study design stages. Raise awareness amongst health professionals and make arrangements so that treatable pathology is investigated and ruled out. Provide information and guidelines on how to manage long-term COVID19. Raise awareness amongst employers. Consider the medical, psychological and financial support that may be required by these patients. When considering measures to ease the lock-down, include a consideration of the risk of exposing additional people to prolonged COVID-19 symptoms and long-term health consequences. Ensure and clarify that the plans announced on 5 July 2020 for research and rehabilitation by NHS England do not inappropriately exclude those who have not required hospital admission and do not exclude those who have been unable to access testing early on, or in whom a false negative test is suspected. It is important that similar services are available throughout the UK. I have encouraged people with these persisting symptoms to write to their MPs to make clear the needs of this group. I have included a letter to explain the situation here in case they would find it helpful. Conclusion The Socratic paradox, "I know that I know nothing" must remind us to keep an open mind at this stage when dealing with a new disease. In his novel The Plague, Albert Camus wrote, “Everybody knows that pestilences have a way of recurring in the world; yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. There have been as many plagues as wars in history; yet always plagues and wars take people equally by surprise.” We have already been taken by surprise by this virus in many ways. It’s important that creating a huge pool of long-term suffering, of unclear aetiology and with unclear outcome, in up to 5-10% of the population does not become an additional surprise. Even if these patients are uncommon, given the number of SARS-CoV2 infections the country has now seen we must arm ourselves with robust studies and evidence to inform healthcare practices and government policy moving forwards. Unless we address this issue we will be left with a huge healthcare burden of chronic disease, and miss the opportunity to save lives and better understand this disease. Clinicians will face patients with these symptoms and have no access to evidence to help manage them. This will lead to bad health outcomes for both individual patients as well as causing significant impacts on society and public health in general. Additional reading: Patient safety concerns for Long COVID patients (6 July 2020) Press release: Patient Safety Learning calls for urgent action to ensure Long COVID patients are heard and supported (6 July 2020) Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’ References Wei-jie Guan, Ph.D., Zheng-yi Ni, M.D., Yu Hu, M.D., Wen-hua Liang, Ph.D., Chun-quan Ou, Ph.D., Jian-xing He, M.D., Lei Liu, M.D., Hong Shan, M.D., Chun-liang Lei, M.D., David S.C. Hui, M.D., Bin Du, M.D., Lan-juan Li, M.D., et al. Clinical Characteristics of Coronavirus Disease 2019 in China. N Engl J Med 2020; 382:1708-1720. https://www.nejm.org/doi/full/10.1056/NEJMoa2002032 https://blogs.bmj.com/bmj/2020/05/05/paul-garner-people-who-have-a-more-protracted-illness-need-help-to-understand-and-cope-with-the-constantly-shifting-bizarre-symptoms/ https://covid19.joinzoe.com/post/covid-long-term https://www.blf.org.uk/media-centre/press-releases/%E2%80%9Cwe-have-been-totally-abandoned%E2%80%9D-people-left-struggling-for-weeks-as https://blogs.bmj.com/bmj/2020/06/23/paul-garner-covid-19-at-14-weeks-phantom-speed-cameras-unknown-limits-and-harsh-penalties/ https://www.theguardian.com/commentisfree/2020/jun/28/coronavirus-long-haulers-infectious-disease-testing https://andrewgwynne.co.uk/long-termer-my-struggle-with-post-covid-sickness-my-weekly-article-for-the-tameside-reporter/ https://www.bbc.co.uk/news/uk-wales-53169736 Helen Salisbury: When will we be well again? BMJ 2020;369:m2490 https://www.bmj.com/content/369/bmj.m2490 https://blogs.bmj.com/bmj/2020/06/23/covid-19-prolonged-and-relapsing-course-of-illness-has-implications-for-returning-workers/ Xiaoneng Mo, Wenhua Jian, Zhuquan Su, Mu Chen, Hui Peng, Ping Peng, Chunliang Lei, Shiyue Li, Ruchong Chen, Nanshan Zhong. Abnormal pulmonary function in COVID-19 patients at time of hospital discharge. European Respiratory Journal Jan 2020. https://erj.ersjournals.com/content/early/2020/05/07/13993003.01217-2020 Tomasz J Guzik, Saidi A Mohiddin, Anthony Dimarco, Vimal Patel, Kostas Savvatis, Federica M Marelli-Berg, Meena S Madhur, Maciej Tomaszewski, Pasquale Maffia, Fulvio D’Acquisto, Stuart A Nicklin, Ali J Marian, Ryszard Nosalski, Eleanor C Murray, Bartlomiej Guzik, Colin Berry, Rhian M Touyz, Reinhold Kreutz, Dao Wen Wang, David Bhella, Orlando Sagliocco, Filippo Crea, Emma C Thomson, Iain B McInnes. COVID-19 and the cardiovascular system: implications for risk assessment, diagnosis, and treatment options, Cardiovascular Research, cvaa106, https://doi.org/10.1093/cvr/cvaa106https://academic.oup.com/cardiovascres/article/doi/10.1093/cvr/cvaa106/5826160 Agarwal S, Agarwal SK. Endocrine changes in SARS-CoV-2 patients and lessons from SARS-CoV. Postgraduate Medical Journal 2020;96:412-416. https://pmj.bmj.com/content/96/1137/412 Antonino Giordano, Ghil Schwarz, Laura Cacciaguerra, Federica Esposito, Massimo Filippi. COVID-19: can we learn from encephalitis lethargica? The Lancet Neurology, 2020;19(7):570 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30189-7/fulltext#articleInformation Mark A Ellul, Laura Benjamin, Bhagteshwar Singh, Suzannah Lant, Benedict Daniel Michael, Ava Easton, Rachel Kneen, Sylviane Defres, Jim Sejvar, Tom Solomon. Neurological associations of COVID-19, Lancet Neurol 2020, https://doi.org/10.1016/S1474-4422(20)30221-0 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30221-0/fulltext Lijing Yang, Lei Tu. Implications of gastrointestinal manifestations of COVID-19. Lancet Gastroenterol Hepatol 2020; May 12, 2020. https://doi.org/10.1016/S2468-1253(20)30132-1https://www.thelancet.com/pdfs/journals/langas/PIIS2468-1253(20)30132-1.pdf Galeotti, C., Bayry, J. Autoimmune and inflammatory diseases following COVID-19. Nat Rev Rheumatol (2020). https://doi.org/10.1038/s41584-020-0448-7https://www.nature.com/articles/s41584-020-0448-7 Ngai, J.C., Ko, F.W., Ng, S.S., To, K.‐W., Tong, M. and Hui, D.S. The long‐term impact of severe acute respiratory syndrome on pulmonary function, exercise capacity and health status. Respirology, 2010, 15: 543-550. https://onlinelibrary.wiley.com/doi/full/10.1111/j.1440-1843.2010.01720.x Ong, Kian-Chung et al. 1-Year Pulmonary Function and Health Status in Survivors of Severe Acute Respiratory Syndrome. CHEST, 2005, Volume 128, Issue 3, 1393 - 1400 https://journal.chestnet.org/article/S0012-3692(15)52164-8/fulltext https://www.thecourier.co.uk/fp/news/politics/scottish-politics/1414976/100-days-ill-health-secretary-pledges-support-for-long-haul-covid-19-patients-who-never-got-better/ https://www.bbc.co.uk/news/health-53291925 https://www.england.nhs.uk/2020/07/nhs-to-launch-ground-breaking-online-covid-19-rehab-service/ Watson Jessica, Whiting Penny F, Brush John E. Interpreting a covid-19 test result. BMJ 2020; 369: m1808https://www.bmj.com/content/369/bmj.m1808 Fan Wu, Aojie Wang, Mei Liu, Qimin Wang, Jun Chen, Shuai Xia, Yun Ling, Yuling Zhang, Jingna Xun, Lu Lu, Shibo Jiang, Hongzhou Lu, Yumei Wen, Jinghe Huang. Neutralizing antibody responses to SARS-CoV-2 in a COVID-19 recovered patient cohort and their implications. medRxiv 2020.03.30.20047365; doi: https://doi.org/10.1101/2020.03.30.20047365 https://www.medrxiv.org/content/10.1101/2020.03.30.20047365v2 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/890566/Evaluation_of_Abbott_SARS_CoV_2_IgG_PHE.pdf https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/891598/Evaluation_of_Roche_Elecsys_anti_SARS_CoV_2_PHE_200610_v8.1_FINAL.pdf https://www.liincstudy.org/en/study-information Dominique Batisse MD Assistance, Nicolas Benech MD, Elisabeth Botelho-Nevers MD, Kevin Bouiller MD, Rocco Collarino MD, Anne Conrad MD, Laure Gallay MD, Francois Goehringer MD, Marie Gousseff MD, Dr Cedric Joseph MD, Adrien Lemaignen MD, PhD, Franc¸ois-Xavier Lescure MD, Bruno Levy MD, PhD, Matthieu Mahevas MD, PhD, Pauline Penot MD, Bruno Pozzetto MD, PhD, Dominique Salmon MD, PhD, Dorsaf SLAMA , Nicolas Vignier MD, PhD, Benjamin Wyplosz. Clinical recurrences of COVID-19 symptoms after recovery: viral relapse, reinfection or inflammatory rebound? Journal of Infection (2020), doi: https://doi.org/10.1016/j.jinf.2020.06.073 https://www.sciencedirect.com/science/article/pii/S0163445320304540?fbclid=IwAR0WEEf9dNtmXmFuU-m67g-Fs5SLdckb1f-FnNzSnX1tT4dw3uGWmsfnS60 Ding, H., Yin, S., Cheng, Y., Cai, Y., Huang, W. and Deng, W. Neurologic manifestations of nonhospitalized patients with COVID‐19 in Wuhan, China. MedComm, 2020. doi:10.1002/mco2.13 https://onlinelibrary.wiley.com/doi/full/10.1002/mco2.13?fbclid=IwAR1yQ8DkVOCsIdonjuzl8tx7LlBp0_Lt6KgVUW79SrFwo-_9nyZmWiz7rsQ
  6. News Article
    "Long Covid" – the long-lasting impact of coronavirus infection – may be affecting people in four different ways, according to a review, and this could explain why some of those with continuing symptoms are not being believed or treated. There could be a huge psychological impact on people living with long-term COVID-19, the National Institute for Health Research report says. They need more support – and healthcare staff require better information. Most people are told they will recover from mild coronavirus infections within two weeks and from more serious disease within three. But the report says thousands could be living with "ongoing Covid". Based on interviews with 14 members of a long-Covid support group on Facebook and the most recent published research, the review found recurring symptoms affecting everything from breathing, the brain, the heart and cardiovascular system to the kidneys, the gut, the liver and the skin. These symptoms may be due to four different syndromes: permanent organ damage to the lungs and heart post-intensive-care syndrome post-viral fatigue syndrome continuing COVID-19 symptoms Some of those affected have had a long stay in hospital with severe Covid-19 - but others, who have had a mild infection, have never even been tested or diagnosed. The review says coming up with a "working diagnosis for ongoing COVID-19" would help people access support. Read full story Source: BBC News, 15 October 2020
  7. Content Article
    Key messages There is a widespread perception that people either die, get admitted to hospital or recover after two weeks. It is increasingly clear that for some people there is a distinct pathway of ongoing effects. There is an urgent need to better understand the symptom journey and the clinical risks that underlie that. People, their families and healthcare professionals need realistic expectations about what to expect. A major obstacle is the lack of consensus on diagnostic criteria for ongoing COVID-19. A working diagnosis that is recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. Whilst it is too early to give a precise definition, guidance on reaching a working diagnosis and a code for clinical datasets is needed. The fluctuating and multisystem symptoms need to be acknowledged. A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system. There are significant psychological and social impacts that will have long-term consequences for individuals and for society if not well managed. The multisystem nature of ongoing COVID-19 means that it needs to be considered holistically (both in service provision and in research). The varying degrees of dependency mean support in the community should be considered alongside hospital one-stop clinics. Social support needs to be understood together with the financial pressures on previously economically active people. COVID-19 has a disproportionate effect on certain parts of the population, including care home residents. Black and Asian communities have seen high death rates and there are concerns about other minority groups and the socially disadvantaged. These people are already seldom heard in research as well as travellers, the homeless, those in prisons, people with mental health problems or learning difficulties; each having particular and distinct needs in relation to ongoing Covid19 that need to be understood.
  8. Content Article
    Within the letter Jeremy Hunt calls for: Recognition that many Long COVID patients were not hospitalised. Guidance on treatment, management of symptoms and on rehabilitation support to 111 and 119 advisers, GPs and all clinical staff in frontline services and is essential for the delivery of quality care, and to end the dismissive attitudes reported by far too many people with Long COVID when they attempt to access health services. A multi-disciplinary Long Covid taskforce, including researchers, professional bodies, and representatives of peer-led groups, to address the urgent needs of people living with persistent, ongoing symptoms of COVID-19. An update on plans for further research into the symptoms of Long COVID patients. Research to include: the natural history of COVID-19, risk factors and potential causes of Long COVID, exercise and Long COVID, diagnostic reliability, viraemia and ongoing or intermittent infectivity, impact of SARS-CoV-2 on different organs and therapeutic options for people with Long COVID Information about the timeline for commissioning these clinics and the time it will take to scale up and reach everyone who requires this service. NHS Long COVID clinics to be inclusive of quality mental health services. Clarity regarding how Long COVID patients will be involved in the development of health promotion and public health programmes, to help tackle the stigma and discrimination that many (people with Long COVID), experience, and address the complexity and uncertainty of current public health information. Greater Awareness-raising around the risk to young people of acquiring Long COVID. (In regard to healthcare workers) – protection of full pay, and guidance to line managers on how to handle absences and phased returns, support and advice for handling relapses and to flex to respond to the lived experience of those with this complex and evolving condition.
  9. Content Article
    Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others described feeling fobbed off); and possible critical events (e.g. deterioration after being unable to access services). The authors conclude that quality principles for a long Covid service should include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services. *Note, this article is in preprint and has not undergone peer review yet.
  10. Content Article
    Speaking at the NHS Providers conference today Sir Simon Stevens, Chief Executive of the NHS, announced that £10 million will be invested into additional local funding "to help kick start and designate Long Covid clinics in every area across England".[1] Patient safety concerns for Long COVID patients Long Covid patients are people with confirmed or suspected Covid-19 who continue to struggle with prolonged, debilitating and sometimes severe symptoms months later.[2] Many were never admitted to hospital and have instead been trying to manage their symptoms and recovery at home. At Patient Safety Learning we have seen growing evidence that there are many patients suffering from long-lasting symptoms of Covid-19 who are feeling abandoned, confused and without support. We have featured patient insights of this on the hub, our platform for patient safety, such as the experiences of Barbara Melville and Dr Jake Suett.[3] Informed by patients we have also been highlighting the patient safety issues arising from this.[4] In September we heard from many Long Covid patients who have expressed confusion about access post-Covid support clinics. This followed comments from the Health Secretary Matt Hancock MP at the Health and Social Care Select Committee in which he suggested this support was already available.[5] We wrote to Simon Stevens calling on the NHS to publish details of post-Covid support clinics and confirm the timeframe for the implementation of Phase 2 of the ‘Your Covid Recovery’ support portal.[6] Reflections on today’s announcement The NHS announcement today sets out a five-part package of support people living with Long Covid: 1. New guidance commissioned by NHS England from NICE by the end of October on the medical ‘case definition’ of Long Covid. This will include patients who have had Covid who may not have had a hospital admission or a previous positive test. It will be followed by evidence-based NICE clinical guidelines in November on the support that Long Covid patients should receive, enabling NHS doctors, therapists and staff to provide a clear and personalised treatment plan. This will include education materials for GPs and other health professionals to help them refer and signpost patients to the right support. We welcome this measure and plans to update guidance so that it includes patients who may not have had a hospital admission or a previous positive test. We have heard from patients who have expressed their frustrations around the lack of clinical recognition of their illness, exacerbated by receiving a negative test result. This new guidance should enable health care providers in primary and secondary care to properly capture information about patients that have Long Covid. This should help to create a better understanding of how many patients are experiencing this disease and the services they are receiving. It will also be essential to ensure that service providers are appropriately funded to support these patients. 2. The ‘Your Covid Recovery’ – an online rehab service to provide personalised support to patients. Over 100,000 people have used the online hub since it launched in July, which gives people general information and advice on living with long Covid. Phase 2 of the digital platform being developed this Autumn by the University of Leicester will see people able to access a tailored rehabilitation plan. This will enable patients to set goals for their mental and physical health, provide peer to peer support through social community forums, offer an ‘ask the expert’ facility for patients to contact their local rehab service, and allow patients to be monitored by their local rehab teams to ensure that they are on track with their care. This service will be available to anyone suffering symptoms that are likely due to COVID-19, regardless of location or whether they have spent time in hospital. It is most likely that patients will access the service through their GP, but they could also be referred through another healthcare professional following assessment. From our conversations with patients and community support groups, we are aware that concerns remain about the availability of support for those who have been managing their symptoms at home. Patients have highlighted that much of the ‘Your Covid Recovery’ site focuses only on those patients who have been in hospital. It is essential that patients that are living in the community with Long Covid can access advice and guidance specific to their needs. We are concerned that access to information and advice is only accessible through GPs or another healthcare professional following assessment. We need to ensure that this referral route does not become a barrier to Long Covid patients having the information and advice they need. 3. Designated Long Covid clinics, as announced today. This will involve each part of the country designating expert one-stop services in line with an agreed national specification. Post-Covid services will provide joined up care for physical and mental health, with patients having access to: – A physical assessment, which will include diagnostic testing, to identify any potential chronic health issues. – A cognitive assessment, to assess any potential memory, attention, and concentration problems. – A psychological assessment, to see if someone is suffering potentially from depression, anxiety, PTSD, or another mental health condition. Patients could also then be referred from designated clinics into specialist lung disease services, sleep clinics, cardiac services, rehabilitation services, or signposted into IAPT and other mental health services. We welcome this commitment to a one-stop shop approach to support for Long COVID patients. It is important that we recognise that patients may need to access a wide range of services and that patients who are unwell should not have to move between different clinical specialities to get diagnosis and treatment related to their personal needs. The £10m initial investment is to be welcomed as is the national specification; it is important that we do not have a postcode lottery of services. As the infection rate increases, so will the number of patients with Long Covid. The investment in services will need to match patient need, both initial assessment and diagnosis and access to specialist treatment, support services and ongoing rehabilitation. We also note that these appear to be England-only measures and would be keen to clarify what steps are being put in place to support patients in the other three nations of the UK. 4. NIHR-funded research on Long Covid which is working with 10,000 patients to better understand the condition and refine appropriate treatment. This is welcomed and should inform the development of clinical pathways and best practice guidelines. 5. The NHS’s support will be overseen by a new NHS England Long Covid taskforce which will include long Covid patients, medical specialists and researchers. This is a new disease and we do not yet understand how best to support patients with Long Covid. We believe that a multi-disciplinary task force that engages and welcomes patients' insights is essential. What are your thoughts? Further to our initial reflections on this, we would be keen to hear from people living with Long Covid on their thoughts on this announcement. Please share your thoughts with us on the support that is needed on our patient safety platform, the hub. References NHS England and NHS Improvement, NHS To Offer ‘Long Covid’ Sufferers Help at Specialist Centres, 7 October 2020. The symptoms for those with Long COVID vary greatly but many are experiencing rashes, shortness of breath, neurological and gastrointestinal problems, abnormal temperatures, cardiac symptoms, and extreme fatigue. Barbara Melville, Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’, Patient Safety Learning’s the hub, 24 June 2020; Dr Jake Suett, My experience of suspected ‘Long COVID’, Patient Safety Learning’s the hub, 10 July 2020. Patient Safety Learning, Patient safety concerns for Long COVID patients, 6 July 2020. Rt Hon. Matt Hancock MP commented in a select committee that “The NHS set up Long COVID clinics and announced them in July. I am concerned by reports this morning from the Royal College of GPs that not all GPs know how to ensure that people can get into those services. That is something I will take up with the NHS and that I am sure we will be able to resolve”. Health and Social Care Committee, Oral evidence: Social care: funding and workforce, HC 206, 8 September 2020. Patient Safety Learning, Clarity needed on post-COVID clinics: Patient Safety Learning's letter to NHS leader, 11 September 2020.
  11. News Article
    NHS England will spend £10m on new clinics for ‘long covid’ sufferers, it was announced yesterday. Sir Simon Stevens, NHSE chief executive, told the NHS Providers annual conference the clinics would offer support to the “probably hundreds of thousands” of people suffering persisting symptoms such as fatigue, breathlessness and ‘brain fog’ months after being infected with COVID-19. It comes amid growing calls for wider services to support people with ‘long covid,’ as hospital follow-up clinics are generally only open to those who were previously admitted with the virus. HSJ was last month only able to identify one genuine “long covid clinic”, despite claims by health secretary Matt Hancock they had “announced them in July”. It appears that comment was a mistake. Speaking about long covid, he said: “The NHS has got to be just as responsive and agile in respect of… new needs, including long covid, as we were in repurposing critical care, and ventilators, and acute capacity in the first phase in March, April and May." “Today we are going to be allocating £10m to establish a network of designated long covid clinics across the country, which, in line with new NICE guidelines on effective treatment pathways, will offer support for the tens of thousands, probably hundreds of thousands, of patients who have got long covid.” Sir Simon also told the conference today that NHSE was “enthusiastic” about introducing regular asymptomatic covid testing for NHS staff “if and when” it is recommended by the government chief medical officer, and when Test and Trace has enough capacity. There are growing calls for regular testing of asymptomatic NHS staff, especially in hotspot areas, including from former health secretary Jeremy Hunt. Sir Simon said it was “something the chief medical officer and the test and trace programme are continuing to review”. He said: “We would be enthusiastic about doing that if and when that is the clinical recommendation and if and when the Test and Trace programme has got the testing capacity to do that. The plan was always that it would largely have to be sourced out of the total testing capacity available to the nation, not just the NHS labs.” Read full story Source: HSJ, 7 October 2020 Read Patient Safety Learning's response to this news Please share your thoughts with us on the support that is needed on our patient safety platform, the hub.
  12. News Article
    People suffering 'Long Covid’ symptoms will be offered specialist help at clinics across England, the head of the NHS announced today. Respiratory consultants, physiotherapists, other specialists and GPs will all help assess, diagnose and treat thousands of sufferers who have reported symptoms ranging from breathlessness, chronic fatigue, 'brain fog', anxiety and stress. Speaking at the NHS Providers conference today (Wednesday), NHS chief executive Sir Simon Stevens will announce that £10 million is be invested this year in additional local funding to help kick start and designate Long Covid clinics in every area across England, to complement existing primary, community and rehabilitation care. Sir Simon said new network will be a core element of a five-part package of measures to boost NHS support for Long Covid patients: New guidance commissioned by NHS England from NICE by the end of October on the medical ‘case definition’ of Long Covid. This will include patients who have had covid who may not have had a hospital admission or a previous positive test. It will be followed by evidence-based NICE clinical guidelines in November on the support that Long Covid patients should receive, enabling NHS doctors, therapists and staff to provide a clear and personalised treatment plan. This will include education materials for GPs and other health professionals to help them refer and signpost patients to the right support. The ‘Your Covid Recovery’ – an online rehab service to provide personalised support to patients. Over 100,000 people have used the online hub since it launched in July, which gives people general information and advice on living with Long Covid. Phase 2 of the digital platform will see people able to access a tailored rehabilitation plan. This service will be available to anyone suffering symptoms that are likely due to COVID-19, regardless of location or whether they have spent time in hospital. Designated Long Covid clinics, as announced today. This will involve each part of the country designating expert one-stop services in line with an agreed national specification. Post-covid services will provide joined up care for physical and mental health, with patients having access to a physical assessment, a cognitive assessment and a psychological assessment. Patients could also then be referred from designated clinics into specialist lung disease services, sleep clinics, cardiac services, rehabilitation services, or signposted into IAPT and other mental health services. NIHR- funded research on Long Covid which is working with 10,000 patients to better understand the condition and refine appropriate treatment. The NHS’s support will be overseen by a new NHS England Long Covid taskforce which will include Long Covid patients, medical specialists and researchers. Read full story Source: NHS England, 7 October 2020 Read Patient Safety Learning's response to this news Please share your thoughts with us on the support that is needed on our patient safety platform, the hub.
  13. News Article
    For most people, COVID-19 is a brief and mild disease but some are left struggling with symptoms including lasting fatigue, persistent pain and breathlessness for months. The condition known as "long Covid" is having a debilitating effect on people's lives, and stories of being left exhausted after even a short walk are now common. There is no medical definition or list of symptoms shared by all patients - two people with long Covid can have very different experiences. However, the most common feature is crippling fatigue. Others symptoms include: breathlessness, a cough that won't go away, joint pain, muscle aches, hearing and eyesight problems, headaches, loss of smell and taste as well as damage to the heart, lungs, kidneys and gut. Mental health problems have been reported including depression, anxiety and struggling to think clearly. Long Covid is not just people taking time to recover from a stay in intensive care. Even people with relatively mild infections can be left with lasting and severe health problems. "We've got no doubt long Covid exists," Prof David Strain, from the University of Exeter, who is already seeing long-Covid patients at his Chronic Fatigue Syndrome clinic, told the BBC. A study of 143 people in Rome's biggest hospital, published in the Journal of the American Medical Association, followed hospital patients after they were discharged. It showed 87% had at least one symptom nearly two months later and more than half still had fatigue. The Covid Symptom Tracker App - used by around four million people in the UK - found 12% of people still had symptoms after 30 days. Its latest, unpublished data, suggests as many as one in 50 (2%) of all people infected have long-Covid symptoms after 90 days. The number of people with long-Covid appears to be falling with time. However, the virus emerged only at the end of 2019 before going global earlier this year so there is a lack of long-term data. "We've asked, deliberately, to follow people for 25 years, I certainly hope only a very small number will have problems going beyond a year, but I could be wrong," said Prof Brightling. However, there are concerns that even if people appear to recover now, they could face lifelong risks. People who have had chronic fatigue syndrome are more likely to have it again and the concern is that future infections may cause more flare-ups. "If long Covid follows the same pattern I'd expect some recovery, but if it takes just another coronavirus infection to react then this could be every winter," said Prof Strain. It is still possible more problems could emerge in the future. Read full story Source: BBC News, 6 October 2020
  14. News Article
    Long Covid could be a bigger public health crisis than excess deaths as the condition leaves patients in agony, experts have warned. Patients overcoming the coronavirus and suffering with long Covid have reported symptoms such as chronic fatigue - months after they first contracted the virus. It was previously reported that 60,000 Britains struck by “long-Covid” have been ill for three months with some left in wheelchairs. People who were previously fit and healthy who have recovered from the virus have in some cases been left bed ridden and unable to climb the stairs. Now a report from the Tony Blair Institute for Global Change is recommending that the Government highlight the issue in awareness campaigns. The report, titled 'Long Covid: Reviewing the Science and Assessing the Risk', states that awareness campaigns could encourage the use of face masks and coverings. The authors of the report state: “Long Covid is likely a bigger issue than excess deaths as a result of Covid, but, crucially, the risk must be considered alongside the economic impact and other health impacts linked to Covid restrictions." Read full story Source: The Sun, 5 October 2020
  15. News Article
    Covid survivor Tam McCue is one of the lucky ones. Earlier in the year he was in intensive care in the Royal Alexandra Hospital in Paisley where he had been on a ventilator for nearly two weeks. At one point Mr McCue, who could barely speak, didn't think he would live. Fast forward five months and Mr McCue, of Barrhead, East Renfrewshire, is back from the brink. He became desperately ill but, thankfully, it only went as far as his lungs. With coronavirus some patients have have suffered multiple organ failure which also affected their heart, kidneys, brain and gut. Mr McCue describes his recovery as a "rollercoaster". He added: "It's a slow process. You think you can do things then the tiredness and fatigue sets in." He said: "It lies in the back of your mind. As years go on, how are you going to be? Is it going to get you again? It does play on you. It definitely does." As part of his recovery Mr McCue is attending the Ins:pire clinic online. It is normally a face-to-face rehabilitation clinic which involves multiple specialties, including pharmacists, physiotherapists and psychologists. Mr McCue is one of the first Covid survivors to take part in the five-week programme, which started earlier this month. Read full story Source: BBC Scotland News, 29 September 2020
  16. News Article
    When 60-year-old Milind Ketkar returned home after spending nearly a month in hospital battling COVID-19, he thought the worst was over. People had to carry him to his third-floor flat as his building didn't have a lift. He spent the next few days feeling constantly breathless and weak. When he didn't start to feel better, he contacted Dr Lancelot Pinto at Mumbai's PD Hinduja hospital, where he had been treated. Dr Pinto told him inflammation in the lungs, caused by Covid-19, had given him deep vein thrombosis - it occurs when blood clots form in the body and it often happens in the legs. Fragments can break off and move up the body into the lungs, blocking blood vessels and, said Dr Pinto, this can be life-threatening if not diagnosed and treated in time. Mr Ketkar spent the next month confined to his flat, taking tablets for his condition. "I was not able to move much. My legs constantly hurt and I struggled to do even daily chores. It was a nightmare," he says. He is still on medication, but he says he is on the road to recovery. Mr Ketkar is not alone in this - tens of thousands of people have been reporting post-Covid health complications from across the world. Thrombosis is common - it has been found in 30% of seriously ill coronavirus patients, according to experts. These problems have been generally described as "long Covid" or "long-haul Covid". Awareness around post-Covid care is crucial, but its not the focus in India because the country is still struggling to control the spread of the virus. It has the world's second-highest caseload and has been averaging 90,000 cases daily in recent weeks. Dr Natalie Lambert, research professor of medicine at Indiana University in the US, was one of the early voices to warn against post-Covid complications. She surveyed thousands of people on social media and noticed that an alarmingly high number of them were complaining about post-Covid complications such as extreme fatigue, breathlessness and even hair loss. The Centre for Disease Control (CDC) in the US reported its own survey results a few weeks later and acknowledged that at least 35% of those surveyed had not returned to their usual state of health. Post-Covid complications are more common among those who were seriously ill, but Dr Lambert says an increasing number of moderately ill patients - even those who didn't need to be admitted to hospital - haven't recovered fully. Read full story Source: BBC News, 28 September 2020
  17. News Article
    Hundreds of thousands who survived the virus still have side-effects that range from loss of smell to chronic fatigue. "It started with a mild sore throat. I was in Devon at the beginning of the lockdown, and because I hadn’t been on a cruise ship, gone skiing in Italy or partying with the crowds at Cheltenham races, I didn’t think it could be COVID-19. Then I developed sinusitis. My GP was practical: “This is not a symptom of the virus,” he emailed me. But my sense of smell had disappeared. At first this wasn’t a sign but six months later, I still can’t tell the difference between the smell of an overripe banana or lavender. I can distinguish petrol but not gas, dog mess but not roses, bacon but not freshly cut grass. Everything else smells of burnt condensed milk." Read full story (paywalled) Source: The Times, 23 September 2020
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