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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

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

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?

'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

Patients who receive good perioperative care can have fewer complications after surgery, shorter hospital stays, and quicker recovery times, shows a large review of research. The Centre for Perioperative Care, a partnership between the Royal College of Anaesthetists, other medical and nursing royal colleges, and NHS England, reviewed 27 382 articles published between 2000 and 2020 to understand the evidence about perioperative care, eventually focusing on 348 suitable studies. An estimated 10 million or so people have surgery in the NHS in the UK each year, with elective surgery costing £16bn a year. A perioperative approach can increase how prepared and empowered people feel before and after surgery. This can reduce complications and the amount of time that people stay in hospital after surgery, meaning that people feel better sooner and are able to resume their day-to-day life. Read full story (paywalled) Source: BMJ, 17 September 2020

Thousands of stroke patients have suffered avoidable disability because NHS care for them was disrupted during the pandemic, a report claims. Many people who had just had a stroke found it harder to obtain clot-busting drugs or undergo surgery to remove a blood clot from their brain, both of which need to happen quickly. Rehabilitation services, which are vital to help reduce the impact of a stroke, also stopped working normally as the NHS focused on Covid, the Stroke Association said. It is concerned “many could lose out on the opportunity to make their best possible recovery”. Juliet Bouverie, the charity’s chief executive, said: “Strokes didn’t stop because of the pandemic. Despite the tireless efforts of frontline clinicians who have gone to herculean efforts to maintain services under extremely difficult conditions, some treatments still became unavailable and most stroke aftercare ground to a halt. This means more stroke survivors are now living with avoidable, unnecessary disability.” Read full story Source: The Guardian, 17 September 2020

Tens of thousands of people may require kidney dialysis or transplants because of coronavirus, according to experts who warn the long-term effects of Covid are causing an “epidemic in primary care”. Up to 90% of coronavirus patients admitted to hospital may still experience symptoms two to three months later – from breathlessness to joint pain, fatigue and chest pain – scientists told the Lords science and technology committee on Tuesday. Donal O’Donoghue, a consultant renal physician at Salford Royal NHS trust, said damage to the kidneys was of major concern. It is believed the virus may attack the organ directly, he said, while the kidneys could also be injured by body-wide inflammation caused by the virus. “Normally we see maybe 20% of people that go on to intensive care unit need to have a form of dialysis. During Covid it was up to 40% – and 85% of people had some degree of kidney injury,” he said. “No doubt that is happening out in the community as well, probably to a lesser extent.” Tom Solomon, professor of neurology at the University of Liverpool, told the committee more needed to be done to support Covid survivors. “[GPs] are seeing lots of patients who are left over with problems from their Covid and they need to be able to refer them to get help in understanding what is going on,” he said, adding: “This is really the current epidemic in primary care.” Read full story Source: The Guardian, 15 September 2020

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

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.

Greater NHS support is needed for people chronically ill for months with COVID-19 symptoms, experts have told BBC Radio 4's File on 4. The Royal College of GPs is calling for a national network of "post-Covid" clinics to help such people. But less than 12% of 86 NHS care commissioning groups asked by the BBC said they were running such services. NHS England said it was "rapidly expanding new and strengthened rehab centres". Tim Spector, professor of genetic epidemiology at King's College London and leader of the Covid Symptom Study app, said around 300,000 people in the UK have reported symptoms lasting for more than a month - so called "long Covid". He added that data from the app showed around 60,000 people have been ill for more than three months. However, many of these people may not have been tested for Covid. The government moved away from community testing on 12 March, instead only testing those admitted to hospital. That meant people who recovered from suspected coronavirus at home were unable to access tests. Elly MacDonald, 37, from Surbiton, was training for the London Marathon when she first developed what she believes were Covid symptoms on 21 March. More than five months on, she still suffers from breathlessness and extreme fatigue, but has not received a positive test result - because community testing was re-introduced too late for it to detect her illness. She changed her GP practice after initially feeling she was not being helped. Elly said: "Just knowing that I actually have people who are taking me seriously - that's been very important for my recovery. I just want my life back." Read full story Source: BBC News, 8 September 2020

The lungs and hearts of patients damaged by the coronavirus improve over time, a study has shown. Researchers in Austria recruited coronavirus patients who had been admitted to hospital. The patients were scheduled to return for evaluation 6, 12 and 24 weeks after being discharged, in what is said to be the first prospective follow-up of people infected with COVID-19, which will be presented at today's European Respiratory Society International Congress. Clinical examinations, laboratory tests, analysis of the amounts of oxygen and carbon dioxide in arterial blood, and lung function tests were carried out during these visits. At the time of their first visit, more than half of the patients had at least one persistent symptom, predominantly breathlessness and coughing, and CT scans still showed lung damage in 88% of patients. But by the time of their next visit, 12 weeks after discharge, the symptoms had improved, and lung damage was reduced to 56%. Dr Sabina Sahanic, a clinical PhD student at the University Clinic in Innsbruck and part of the team that carried out the study, said: "The bad news is that people show lung impairment from COVID-19 weeks after discharge; the good news is that the impairment tends to ameliorate over time, which suggests the lungs have a mechanism for repairing themselves." A separate presentation to the congress said that the sooner COVID-19 patients started a pulmonary rehabilitation programme after coming off ventilators, the better and faster their recovery. Yara Al Chikhanie, a PhD student at the Dieulefit Sante clinic for pulmonary rehabilitation and the Hp2 Lab at the Grenoble Alps University in France, used a walking test to evaluate the weekly progress of 19 patients who had spent an average of three weeks in intensive care and two weeks in a pulmonary ward before being transferred to a clinic for pulmonary rehabilitation. She said: "The most important finding was that patients who were admitted to pulmonary rehabilitation shortly after leaving intensive care progressed faster than those who spent a longer period in the pulmonary ward where they remained inactive. The sooner rehabilitation started and the longer it lasted, the faster and better was the improvement in patients' walking and breathing capacities and muscle gain." Read full story Source: The Independent, 7 September 2020

Nearly three-quarters of coronavirus patients admitted to hospital suffer ongoing symptoms three months later, new research suggests. A total of 81 patients out of 110 discharged from Southmead Hospital in Bristol were still experiencing symptoms from the virus, including breathlessness, excessive fatigue and muscle aches, after 12 weeks. Many were struggling to carry out daily tasks such as washing, dressing or going back to work, the study found. The majority of patients reported improvements in the initial symptoms of fever, cough and loss of sense of smell, and most had no evidence of lung scarring or reductions in lung function. The findings are part of North Bristol NHS Trust's Discover project, which is studying the longer-term effects of coronavirus - so-called Long COVID. An intensive care doctor, Dr Jake Suett, told Sky News in June that he was still suffering COVID-19 symptoms three months after contracting the disease. Dr Jake Suett, 31, had no underlying health conditions but was still suffering chest pain, breathlessness, blurred vision, memory loss, a high temperature, concentration problems. Dr Rebecca Smith, from North Bristol NHS Trust, said: "There's still so much we don't know about the long-term effects of coronavirus, but this study has given us vital new insight into what challenges patients may face in their recovery and will help us prepare for those needs." Read full story Source: Sky News, 20 August 2020