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Found 266 results
  1. News Article
    The NHS will launch a network of more than 40 ‘long COVID’ specialist clinics within weeks to help thousands of patients suffering debilitating effects of the virus months after being infected. The clinics, due to start opening at the end of November, will bring together doctors, nurses, therapist and other NHS staff to physical and psychological assessments of those experiencing enduring symptoms. NHS England has provided £10 million to fund the pioneering clinics, which will see patients who have been hospitalised, officially diagnosed after a test or reasonably believe they had COVID-19. Ten sites have been earmarked for the Midlands, seven in the North East, six in the East of England, South West and South East respectively, five in London and three in the North West. Patients will be able to access services through a GP referral or referral from other healthcare professional, allowing doctors an opportunity to rule out any other possible underlying causes for symptoms, such as suspected stroke, lung cancers or respiratory conditions. The NHS has also launched a new taskforce, with patients, charities, researchers and clinicians, to help manage the NHS approach to ‘long COVID’ and produce information and support materials for patients and healthcare professionals to develop a wider understanding of the condition. NHS Chief Executive Sir Simon Stevens said: “Long COVID is already having a very serious impact on many people’s lives and could well go on to affect hundreds of thousands. “That is why, while treating rising numbers of patients who are sick with the virus and many more who do not have it, the NHS is taking action to address those suffering ongoing health issues." “These pioneering ‘long COVID’ clinics will help address the very real problems being faced by patients today while the taskforce will help the NHS develop a greater understanding of the lasting effects of coronavirus.” Read full press release Source: NHS England, 15 November 2020
  2. 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
  3. 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
  4. 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.
  5. 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.
  6. 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
  7. 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
  8. News Article
    Clarence Troutman survived a two-month hospital stay with COVID-19, and then went home in early June. But he's far from over the disease, still suffering from limited endurance, shortness of breath and hands that can be stiff and swollen. "Before Covid, I was a 59-year-old, relatively healthy man," said the broadband technician from Denver. "If I had to say where I'm at now, I'd say about 50% of where I was, but when I first went home, I was at 20%." He credits much of his progress to the "motivation and education" gleaned from a new programme for post-covid patients at the University of Colorado, one of a small but growing number of clinics aimed at treating and studying those who have had the unpredictable disease caused by this coronavirus. As the US general election nears, much attention is focused on daily infection numbers or the climbing death toll, but another measure matters: Patients who survive but continue to wrestle with a range of physical or mental effects, including lung damage, heart or neurological concerns, anxiety and depression. "We need to think about how we're going to provide care for patients who may be recovering for years after the virus," said Dr Sarah Jolley, a pulmonologist with UCHealth University of Colorado Hospital and director of UCHealth's Post-Covid Clinic, where Troutman is seen. That need has jump-started post-covid clinics in the US, which bring together a range of specialists into a one-stop shop. One of the first and largest such clinics is at Mount Sinai in New York City, but programmes have also launched at the University of California-San Francisco, Stanford University Medical Center and the University of Pennsylvania. The Cleveland Clinic plans to open one early next year. And it's not just academic medical centres: St. John's Well Child and Family Center, part of a network of community clinics in South Central Los Angeles, said this month it aims to test thousands of its patients who were diagnosed with covid since March for long-term effects. The general idea is to bring together medical professionals across a broad spectrum, including physicians who specialize in lung disorders, heart issues and brain and spinal cord problems. Mental health specialists are also involved, along with social workers and pharmacists. Read full story Source: CNN Health, 28 September 2020
  9. 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
  10. 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
  11. 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
  12. News Article
    The government and NHS England appear unable to identify units set up to treat ‘long covid’, contrary to a claim by Matt Hancock in Parliament that the NHS had ‘set up clinics and announced them in July’. There are growing calls for wider services to support people who have had COVID-19 and continue to suffer serious follow-up illness for weeks or months. Hospitals run follow-up clinics for those who were previously admitted with the virus, but these are not generally open to those who were never admitted. Earlier this month the health secretary told the Commons health committee: “The NHS set up long covid clinics and announced them in July and I am concerned by reports from Royal College of General Practitioners that not all GPs know how to get into those services.” Asked by HSJ for details, DHSC and NHS England declined to comment on how many clinics had been set up to date, where they were located, how they were funded or how many more clinics were expected to be “rolled out”. However, two charities and support groups — Patient Safety Learning and the Long Covid Support Group — told HSJ they were not aware of dedicated long covid clinics for community patients. An enquiry from Patient Safety Learning to NHS England has not been answered. The number of people affected by long covid is unclear due to a lack of research but there are suggestions it could be half a million or more. Symptoms can include fatigue, sleeplessness, night-time hypoxia, “brain fog” and cardiac problems. It appears to affect more people who were not hospitalised with coronavirus than those who were were. There is some evidence that small clinics have been set up locally on a piecemeal basis, without national funding. HSJ has only been able to identify only one genuine “long covid clinics” open to those who have never been in hospital with covid. Trisha Greenhalgh, an Oxford University professor of primary care health sciences who has interviewed around 100 long covid sufferers, told HSJ: “Nobody I have interviewed had been seen in a long covid clinic but there is an awful lot of people who would like to be referred and who sound like the need to be but they haven’t.” Read full story (paywalled) Source: HSJ, 23 September 2020 Read the letter Patient Safety Learning sent to NHS England hub Community thread - Long Covid: Where are these clinics?
  13. News Article
    'Long Covid' is leaving people with so-called ‘brain fog’ for months after their initial recovery, NHS experts have revealed. Dr Michael Beckles, consultant respiratory and general physician at The Wellington Hospital, and the Royal Free NHS Foundation, said he has seen a number of patients suffering from ongoing effects of the disease. He said the main symptom being reported is breathlessness, with patients also describing a brain fog. Dr Beckles said: "I'm seeing more and more patients who have had Covid-19 infection confirmed in the laboratory and on X-ray, who have cleared the infection, and are now still presenting with persistent symptoms. "Some of those symptoms are respiratory, such as breathlessness, chronic cough. "And some have other symptoms such as what the patients describe as brain fog, and I understand that to be a difficulty in concentration." "Some still have loss of sense of taste or smell." He added that it can be frustrating for patients because investigations after the infection can be normal, yet the symptoms persist. Dr Beckles is part of a team of specialists at the new post-COVID-19 rehabilitation unit at The Wellington Hospital. Read full story Source: The Telegraph, 21 September 2020
  14. News Article
    "It’s March and I’m lying awake at 3am struggling to breathe. There’s a heaviness in my chest. I’m terrified at the speed and inconsistency of my heartbeat, but I’m too afraid to call for medical help again. They’ve told me that it will get better and I need to persevere. I live on my own, and I’m trying to control my panic." Six months later Louise Cole is still dealing with the symptoms. Like thousands of others, it turns out she has “long Covid”. Like them, Louise has struggled to be taken seriously by doctors. "While for some life is slowly returning to normal, the same cannot be said for long-term COVID-19 patients. Forgetting us is not an option — not least because the burden of caring for people like me is something the NHS and government will have to reckon with. Something must be done to ease our suffering — and that starts with paying us some attention." Read full story Source: Evening Standard, 11 September 2020
  15. News Article
    The government has now officially recognised the long-term health implications some people can suffer after contracting coronavirus. Lung inflammation, gastrointestinal disturbance, and fatigue are just some of the listed long-term health effects published by Public Health England. But it’s no new revelation - as campaigners made up of politicians, expert clinicians and sufferers have fought hard over the past few months to bring what has become known as ‘long covid’ into the public domain. One of them is Jo Platt, former Labour MP for Leigh, who says the virus hit her ‘like a train’ in the week before lockdown in March - when it wasn’t possible to get a test. She's been left with symptoms months on - although recently tested negative twice for COVID-19. “It was like a train hitting me, like a switch, I felt so unwell for two days. I had general dizziness, fatigue but nothing you could pinpoint. I didn’t have a cough or a temperature, although I felt hot; had gastric trouble; shortness of breath; then it eased and I was okay and thought ‘thank goodness. It must have just been mild’,” Jo said. Two days later the symptoms came back, but that spell of illness lasted for two weeks. Jo said she couldn’t get out of bed, suffered intense headaches and a burning sensation in her lungs, was unable to concentrate and couldn’t read. “I’m not normally an anxious person, but then came anxiety", she said. "I felt a real sense of dread, a heightened pending sense of doom. It continued on and off for months, and particularly worsened at the weekend. The 48-year-old got in touch with her GP who said anxiety was bringing the symptoms on. It wasn’t until a week later when Jo read an article by Professor Paul Garner, of Liverpool School of Tropical Medicine, who talked about his fight with symptoms, that she realised she wasn't alone. “Everything he was saying was the same as what I was going through. I cried and cried. It was all validated. Then the journey began of finding other people - which does make it feel better,” said the mum-of-three. Prof Garner has described coronavirus as a 'very bizarre disease' that left him feeling 'repeatedly battered the first two months' and then experiencing lesser episodes in the subsequent four months with continual fatigue. “Navigating help is really difficult,” he said in a BMJ webinar. With the help of Jo's connections in parliament, Prof Garner, and meetings with the shadow cabinet health team, a support group for long covid sufferers has been formed, which has 20,000 members. They’re calling for recognition, which they finally got from the government on 7 September 7, research and rehab. Matt Hancock said at the Health and Social Care Committee the following day: “The long-term impacts of covid are not very strongly correlated with severity of the initial illness. While we have a significant amount of work going into supporting those who come out of hospital, this is not just about people hospitalised. “In fact, this is especially relevant for now with the latest rise largely among young people, it doesn't matter how serious your infection was the first time, the impact of long covid can be really debilitating for a long period of time, no matter if your initial illness wasn't all that severe.” The Health Secretary, when questioned on calls by the Royal College of GPs for covid clinics, said the NHS has set up clinics, but he is ‘concerned’ that not all GPs know how to ensure people know how to get into those services. “That’s something I am sure we can resolve,” he added. Read full story Source: Manchester Evening News, 13 September 2020
  16. News Article
    PRESS RELEASE (London, UK, 11 September) – The charity Patient Safety Learning are calling on the NHS to publish details of post-COVID support clinics and clarify how these can be accessed by thousands of ‘Long COVID’ patients. Patient Safety Learning has written to Sir Simon Stevens, Chief Executive of the NHS, calling on him to take steps to publicise the locations and details of these services. This follows Matt Hancock MP, Secretary of State for Health and Social Care, expressing concerns in the Health and Social Care Select Committee on Tuesday that not all GPs know how to access these services. Helen Hughes, Chief Executive of Patient Safety Learning, said: “We have heard from many Long COVID patients that they are not clear on the location of these clinics, what services they offer and who is eligible for support. Some patients have been advised by their GP that there are no post-COVID clinics available within their area. Though the NHS launched the ‘Your COVID Recovery’ online portal for patients recovering from COVID, there is no clear indication of how the clinics fit into this and how patients can access the support they need.” Long COVID patients are those with confirmed or suspected COVID-19 who continue to struggle with prolonged, debilitating and sometimes severe symptoms months later. In their letter, the charity has identified a series of steps needed to provide greater clarity for these patients, including: Publishing a list of all existing post-COVID clinics and contact details. Confirming whether these clinics are accessed by referral from your GP or self-referral. If by GP referral, publish the guidance issued to GPs on this process. Confirming who is eligible for these services, whether they are restricted to those hospitalised by COVID-19 or open to those who are managing their symptoms at home. Confirm what services are available from these clinics. Specifically, whether they can help patients access clinical investigations, as well as treatment and rehabilitation. Clarify whether these services are available to all patients or only those who have had a confirmed positive test for COVID-19. Notes to editors: Patient Safety Learning is a charity, which helps transform safety in health and social care, creating a world where patients are free from harm. We identify the critical factors that affect patient safety and analyse the systemic reasons they fail. We use what we learn to envision safer care. We recommend how to get there. Then we act to help make it happen. For more information: www.patientsafetylearning.org In the Health and Social Care Select Committee on Tuesday 8 September 2020, Matt Hancock commented 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.” The full transcript can be found here. Patient Safety Learning’s full letter to Sir Simon Stevens can be found here. Patient Safety Learning have previously set out patient safety concerns for Long COVID patients, outlining these issues in more detail. Read more here.
  17. News Article
    On Christmas Day, Gail Jackson’s 16-year-old daughter said she was in so much pain she thought she would die. Liliana had been briefly admitted to hospital with Covid in September. Her symptoms never went away and, as time went on, new ones had emerged. “For months she had a relentless, agonising headache, nausea, tinnitus, fatigue and insomnia, but the worst thing was the agonising nerve pain,” said Jackson. “I couldn’t even touch her without her screaming in pain.” On Christmas morning, Jackson drove to hospital with her daughter vomiting from pain in the passenger seat. When they got to the hospital, however, the A&E doctor said there was no such thing as long Covid in children. “He said she just needed to go home and get on with her life,” Jackson said. “It was jaw-dropping.” It is extremely rare for children and young people to contract severe Covid, but recent research has shown that even mild or asymptomatic infection can lead to long Covid in children. A study at UCL is investigating long Covid in 11- to 17-year-olds who were not hospitalised with the disease. The National Institute for Health and Care Excellence (NICE) has recommended more research to produce guidance on how children and young people are affected and how they can be treated. However, there is no case definition of long Covid in children and young people in the way there is in adults. Read full story Source: The Independent, 3 May 2021
  18. News Article
    More than 80 new clinics to assess patients suffering with symptoms of Long Covid are to be opened by the NHS by the end of this month with an extra investment of £24m. NHS England chief executive Sir Simon Stevens said the health service must “continue to expand its offer for Long Covid” adding there will be even more funding earmarked for the problem in the future. Speaking at the Health Service Journal’s leadership congress on Wednesday, Sir Simon said: “We have 69 clinics identified last year and we will have 83 long Covid clinics in place by the end of this month, so a significant expansion there. “We will be backing that with at least £24 million revenue funding going into this New Year, up from the £10 million announced last year, and there will be more to come on the back of that as well.” Recent estimates by the Office for National Statistics found more than a million people could be experiencing long Covid beyond four weeks with 674,000 people saying it was affecting their day to day lives. Almost 200,000 people have said their ability to carry out normal activities has been severely limited by the condition. Read full story Source: The Independent, 14 April 2021
  19. News Article
    Lyth Hishmeh kept feeling ill months after contracting coronavirus a year ago in March. He had chest pain and couldn't concentrate. At 26 years old, the former regular runner was fatigued and breathless, struggling to function properly. Yet medical professionals kept telling him he simply could not still be ill. "They were telling me it's all in my head," he said. For Hishmeh who lives in London and many sufferers of long Covid, proving they are sick has become a big part of trying to get better. Another Londoner, Monique Jackson, has lost count of the number of times her pain was described as 'just anxiety.' The 32-year old illustrator was repeatedly told by medical professionals to go to the accidents and emergency, only to be discharged soon after. "I felt like I was wasting people's time, that people either didn't believe me ... or the ones who were sympathetic and supportive said 'we don't know, it's a new disease and we just don't know,'" she said. Clinics are springing up around the country for what some call a potential second pandemic: Long Covid. Learning that they were not alone, that other people were experiencing the same issues, was a huge revelation for both Hishmeh and Jackson. This was not just in their heads. They were not imagining the pain. They really were sick. Read full story Source: CNN Health, 11 April 2021
  20. News Article
    Health coach Jasmine Hayer had to give up her life in London and move back in with her parents after catching Covid. Now she is focused on a twin goal - battling back to health while helping others get the right treatment for Long Covid. Dr William Man, the head of the Royal Brompton Hospital's chest clinic, started treating her in December, as part of a clinic seeing 100 severe long Covid cases in the UK. Jasmine describes it as a "complete game changer". However, she worries that other so-called "long haulers" are not getting the help they need because they face "such a battle" to be taken seriously. She decided to start a blog to document her symptoms and wants to share her story as widely as possible in the hope of helping others. "I've had messages from around the world and I was so happy to hear that one girl has shown her doctor my blog and he is giving her more tests as a result," she says. "I know how lonely and scary it is when you are fighting to be believed. You are literally on your own." Read full story Source: BBC News, 7 April 2021
  21. News Article
    Long Covid patients have voiced growing frustration at a “postcode lottery” in clinical support for debilitating symptoms, with some areas of the UK offering no specialist clinics more than a year after coronavirus took hold. Other sufferers said they were disappointed by long Covid clinics investigating certain symptoms only, with no comprehensive treatment plan. Official figures suggest there are almost 700,000 Britons with Covid symptoms lasting over three months. In October, NHS England announced more than £10m for a network of clinics bringing together doctors, nurses, therapists and other NHS staff to conduct physical and psychological assessments and recommend treatments for long Covid patients. Additional local funding would also be available to help establish a clinic in every area, the NHS England chief executive, Simon Stevens, said. By December, 69 clinics had been set up in England with a further 12 sites earmarked to launch in January. But Louise Barnes, founder of the Post Acute Covid Syndrome 19 (Pacs19) patient advocacy group, said a survey of 200 British members revealed about 90% had not been able to access a clinic because there wasn’t one available, their GP could not refer them or they were declined without explanation. Others were disappointed by the type of services on offer. Barnes said: “Patients in the UK have waited going on a year to get support for the multitude of symptoms they’ve been experiencing. To finally think you are going to get referred to a clinic but your GP tells you they don’t have any information, or you get there to find it’s a ‘respiratory-only clinic’ or only staffed by physiotherapists leaves them feeling despondent. For the most part, sadly, patients are coming away massively feeling let down and with no viable treatment plan offered – even a rudimentary one, whilst a treatment is found." Read full story Source: The Guardian, 6 April 2021
  22. News Article
    Lasting effects of infection from coronavirus are more common in women and children than expected, with at least 10% of people infected suffering persistent symptoms for months, a new review has found. Experts at the National Institute for Health Research (NIHR) examined more than 300 separate scientific studies for the analysis. It found many patients reported struggling to access testing and help from the NHS to treat their symptoms, which varied between patients, suggesting long Covid is a group of four possible syndromes affecting patients differently. The report said: “Long Covid appears to be more frequent in women and in young people (including children) than might have been expected,” adding other sufferers could be experiencing an active disease, impacting on their organs and causing debilitating symptoms that would need ongoing treatment. In some patients, the effects included neurological changes in their brains while others showed signs of blood clotting and inflammation. Other patients reported anxiety, fatigue and damage to their lungs and heart. It also warned there was evidence some long Covid patients could actually be getting worse, underlining the need to invest in services that will be needed to cope with what could be a long term problem. Read full story Source: The Independent, 16 March 2021
  23. News Article
    Joanna Herman, a consultant in infectious diseases, had high hopes when Boris Johnson announced £10m for long Covid clinics. Five months on, she is yet to be referred to one. "Despite the government recently giving £18.5m research funding for the disease, it feels as though all focus is now on the vaccine and the lifting of lockdown, while those living with long Covid have been largely forgotten," says Joanna. Her initial illness was, by definition, a mild case of Covid: no hospital admission and no risk factors for severe disease. Months later she found herself experiencing crashing post-exertional fatigue, sporadic chest pains and a brain that felt it was only half functioning. And she is not alone. According to a study published last September from researchers at King’s College London, 60,000 people in the UK were likely to have been suffering from long Covid. The actual number is now probably far higher. There are now 69 long Covid clinics up and running across the country, according to the NHS England website. Yet Joanna has not been able to access one – and neither have others she knows with long Covid. Joanna asked doctors in her field what was happening with long Covid clinics in their local areas. She contacted 18 infectious disease colleagues based in teaching hospitals around the country. Of the 16 who responded, 6 had formal long Covid clinics. Some said that provision for the disease was woefully inadequate, while others reported they only saw only patients who had been admitted to hospital with acute COVID-19. In her own local teaching hospital, funding for long Covid patients is scattered across various departments and there is no dedicated team for these patients. "...it feels as though many long-haulers remain in a post-viral sea, looking for a mooring in the hope that something can be offered. We’ve known about this disease since last summer, and it has been officially recognised since October, but we’re only just starting to understand how to support those living with it" Read full story Source: The Guardian, 10 March 2021
  24. News Article
    Sufferers say they have had little specialist help despite NHS England setting up dedicated clinics. “It’s not that I feel I have been abandoned, I think that is perfectly obvious,” says Rachel Pope. “If you speak to any long Covid patient, they have been abandoned.” Until exactly a year ago – 5 March 2020 – Pope was “an incredibly fit woman”. A senior lecturer in European prehistory at the University of Liverpool, her work and lifestyle were very active. But after falling ill to Covid, she spent four months unable to walk, then three more when she could manage little more than “a sort of shuffle”. She still has a host of symptoms, “but the most debilitating is the fact that I still can’t do more than 2,000 steps in a day. Until a few weeks ago, I was still choking every day. There’s a lot of nasty stuff that [long Covid sufferers] are living with, without treatment. “It’s not a great situation to be in. I mean, we didn’t die. But this isn’t exactly living either.” A year into the pandemic, accounts such as Pope’s have become dispiritingly familiar, as the experiences of the many thousands who have struggled for months with long Covid, often alone and unsupported, are emerging. Read full story Source: The Guardian, 5 March 2021
  25. News Article
    Some 1 in 10 people still experience persistent ill health 12 weeks after having COVID-19, termed “long COVID” or post-COVID conditions. A new policy brief from the European Observatory on Health Systems and Policies documents responses to post-COVID conditions in different countries of the WHO European Region and looks at how sufferers, including medical professionals, are driving some of those responses. Written for decision-makers, this brief summarises what is known about the conditions, who and how many people suffer from them, diagnosis and treatment, and how countries are addressing the issue. Commenting on long COVID, WHO Regional Director for Europe Dr Hans Henri P. Kluge said, “COVID-19 has caused a great deal of suffering among people across the Region, with reports of long COVID an extra cause for concern. It’s important that patients reporting with symptoms of long COVID are included as part of the COVID-19 response to mitigate some of the longer-term health impacts of the pandemic. This policy brief makes clear the need for policy-makers to take the lead on this issue.” Read full story Source: WHO, 25 February 2021
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