Patient Safety Learning

PRESS RELEASE (London, UK, 6 July 2020) – Thousands of ‘Long COVID’ patients are feeling unheard and unsupported. The charity Patient Safety Learning is giving these patients a voice to ensure urgent action is taken by leaders in health and social care. Helen Hughes, Chief Executive of Patient Safety Learning, said: “There is growing evidence that there are many patients recovering in the community with long-lasting symptoms who are feeling abandoned, confused and without support. We must take action to better understand the needs of these patients and provide them with safe and effective care.” Although Patient Safety Learning welcomes the recent government announcement of an online patient recovery portal and treatment plans, questions remain around whether this will meet the specific health needs of Long COVID patients. “These patients have felt unheard for too long; we must make sure they do not slip through the net,” adds Hughes. Long COVID patients are those with confirmed or suspected COVID-19 who continue to struggle with prolonged, debilitating and sometimes severe symptoms months later*. It is crucial that Long COVID patients are heard and supported, and that research is undertaken to better understand Long COVID and its long-term effects on physical and mental health. Long COVID patient Barbara Melville told Patient Safety Learning, “the worst part is that I’ve had to fight so hard to get the referrals I need” and another, Dr Jake Suett, said that, after joining the ‘Long Covid Support Group’ on Facebook, he “was suddenly faced with the realisation that there were thousands of us in the same position” and that it confronted him “with the tremendous volume of genuine human suffering that was going unrecorded and unnoticed”. Patient Safety Learning is calling for leaders in health and social care to act urgently by funding research into Long COVID and ensuring that patients are given a platform to raise concerns and receive appropriate support. The charity has identified the current key issues as being: There is a lack of guidance and support for Long COVID patients who have been managing their illness and recovery from home (to date, much of the guidance has been designed specifically for patients who have been acutely unwell and in hospital). There is a lack of understanding around the effects of Long COVID on patients’ mental health and wellbeing. There is a risk that symptoms of other serious conditions are being overlooked for individuals with Long COVID and, instead, are being attributed simply as after-effects of COVID-19. Patient Safety Learning’s proposed actions to address the safety issues concerning Long COVID care can be found on our website. Notes to editors: *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. 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 Patient Safety Learning’s blog published today on patient safety concerns for Long COVID patients outlining these issues in more detail can be found here. A blog by Dr Jake Suett published today in which he outlines his experience of suspect Long COVID calls needed can be found here. An open letter from Dr Jake Suett to MPs to make clear the needs of this group can be found here.

The NHS will be unable to meet the needs of patients unless significant action is taken to tackle staff shortages, an unprecedented coalition of health leaders has warned. Medical royal colleges, NHS trade unions and bodies representing senior hospital managers and other health organisations have joined together to warn bosses at NHS England and the government that they must act to ensure the health service workforce is supported in the wake of coronavirus. The organisations said they were united in the belief that meaningful action on long-standing workforce issues would be the best way to repay the efforts of NHS staff during the virus outbreak – calling for a public commitment to boost numbers, increase flexible working, and improve leadership and support for staff. Professor Carrie MacEwen, chair of the Academy of Medical Royal Colleges, which organised the statement, told The Independent: “Continued staff shortages in the NHS will be hugely damaging for patients. It has long been recognised that there is a serious shortage of doctors and nurses and right now we need to keep the staff we have, who have done a brilliant job during the pandemic, as well as increase the size of the workforce." Read full story Source: The Independent, 7 July 2020

Spain's large-scale study on the coronavirus indicates just 5% of its population has developed antibodies, strengthening evidence that a so-called herd immunity to COVID-19 is "unachievable," the medical journal the Lancet reported on Monday. The findings show that 95% of Spain's population remains susceptible to the virus. Herd immunity is achieved when enough of a population has become infected with a virus or bacteria – or vaccinated against it – to stop its circulation. The European Center for Disease Control told CNN that Spain's research, on a nationwide representative sample of more than 61,000 participants, appears to be the largest study to date among a dozen serological studies on the coronavirus undertaken by European nations. "In light of these findings, any proposed approach to achieve herd immunity through natural infection is not only highly unethical, but also unachievable," said the Lancet's commentary authors, Isabella Eckerle, head of the Geneva Centre for Emerging Viral Diseases, and Benjamin Meyer, a virologist at the University of Geneva. Read full story Source: CNN, 6 July 2020

Extreme fatigue, nausea, chest tightness, severe headaches, "brain fog" and limb pains are among the recurring symptoms described by some sufferers of COVID-19 for weeks - and even months - after their diagnosis. They call themselves "long-haulers" and their symptoms persist long after the 14-day period that's officially said to be the average length of the illness. There are calls for both health professionals and employers to recognise that some people will take a lot longer than two weeks to recover. "It's the weirdest thing I've ever experienced," Helen Calder, from Liverpool, told BBC health correspondent Dominic Hughes. Nearly four months after she and her family caught the virus, she still experiences a relapse roughly every two weeks where she is hit by debilitating fatigue, nausea, headaches and limb pain. Her doctors have diagnosed Post Viral Fatigue and she says any small over-exertion while she is feeling well can set her back for days at a time. Dr Jake Suett, an intensive-care doctor in Norfolk, who was himself ill for several weeks, wrote an open letter calling on the government to push for more research into long-haul symptoms, and also to raise awareness among not only health professionals but also employers, who may see their staff off work for longer than two weeks. "These patients may require financial help, and their employers need to have a realistic expectation for the time it will take them to recover," he wrote. Read full story Source: 7 July 2020 Read Jake Suett's blog on the hub

The GMC has set out its plans to restart fitness to practise (FTP) investigations this month. Existing FTP cases will resume, where this is possible, with flexibility on timescales and on the basis of direct discussion with those involved and ‘careful consideration and agreement’ with responsible officers, the regulator said. Acknowledging that investigations are ‘difficult’ for all involved’, the GMC said it is of the view that delaying decisions any further could ‘cause additional stress’. It also said investigations would resume with the ‘understanding that many individuals and organisations remain under pressure and any potential impact needs to be proportionate’. During this period, it will continue to review concerns that are raised to protect patient safety. Read full story Source: Pulse, 3 July 2020

Former patients of rogue breast surgeon Ian Paterson may have died of “unnatural deaths” two senior coroners have said. Senior coroner for Birmingham and Solihull, Louise Hunt, and area coroner Emma Brown have said they believe there is evidence to suspect victims of Ian Paterson, who was jailed for 17 counts of wounding with intent in 2017, died unnaturally as a result of his actions. They now plan to open four inquests into the deaths of patients who died from breast cancer after being treated by Paterson. “Following preliminary investigations, the senior and area Coroner believe there is evidence to have reason to suspect that some of those deaths may be unnatural. In accordance with the Coroners and Justice Act 2009, inquests will now be opened in relation to four former patients of Mr Paterson.” Deborah Douglas, a victim of Paterson who leads a support group in Solihull, told The Independent: "I have spoken to so many women over the years who have since died. This is what I have always known and fought for. "Paterson lied about pathology reports and people did develop secondary cancers." Read full story Source: The Independent, 4 July 2020

A study of 50,000 patients throughout the United States showed that those who were the most satisfied with their care (the top quartile) were 26% more likely to be dead six months later than patients who gave lower ratings to their care. The study, “The Cost of Satisfaction,” appeared in JAMA Internal Medicine. The researchers looked at Centers for Medicare and Medicaid Services (CMS) hospital data and patient surveys at more than 3,000 US hospitals over three years. The hospitals where fewer patients died had only a 2% point edge in patient satisfaction over the others. Cristobal Young, associate professor of sociology at Cornell University and lead author of the study, calls it “the halo effect of hospitality.” Young found that what mattered most to patients in ratings were the compassion of nurses and amenities like good food and quiet rooms. It’s why hospital managers are being recruited from the service industry and we’re seeing greeters in the lobby and premium TV channels in rooms, he says. Patients tend to value what they see and understand, but that can be limited, Young continues. They give hospitals good cleanliness ratings when they observe waste baskets are emptied and sheets are changed. “They can’t see a virus or tell you how clean the room is in ways that matter,” he says. Read full story Source: 4 July 2020, Washington Post

NHS England is launching a new service for people with ongoing health problems after having coronavirus. The government says "tens of thousands" of people have long-term symptoms after catching COVID-19. "Your Covid Recovery" will be an online portal for people in England to access tutorials, contact healthcare workers and track their progress. The project will be rolled out in two phases, with the web portal launching later this month. It will only be accessible via a personal log-in and will be available to virus patients who had to be treated in hospital, as well as to those who managed their illness at home. Later in the summer, tailored rehabilitation will also be offered to those who qualify, following an assessment. Each programme will last a maximum of 12 weeks, the Department of Health and Social Care said. Read full story Source: BBC News, 5 July 2020

Figures released by the Office for National Statistics show that about two-thirds of fatalities from this disease during its peak from start of March to mid-May were people with disabilities. That is more than 22,000 deaths. Then dig down into the data. It indicates women under 65 with disabilities are more than 11 times more likely to die than fellow citizens, while for men the rate is more than six times higher. Even for older people the number of deaths was three times as high for women and twice as high for men. There are some explanations for such alarming figures, although they tend to reveal other profound concerns. Yet the report showed even when issues such as economic status and deprivation are taken into account, people with disabilities died at about twice the rate of their peers. So where was the fury over this obvious and deep inequality, even in death? Where was the fierce outcry over persistent failures that left many citizens and their families at risk, lacking even the most basic advice, support or protection from the state? Chris Hatton, the dedicated professor of public health and disability at Lancaster University, delved into all available data. He found people with autism and learning disabilities were in reality at least four times more likely to die at the peak of pandemic than other citizens. They also died at far younger ages. “Information released about deaths of autistic people and people with learning disabilities has been minimal, grudging and seems deliberately designed to be inaccessible,” he says. This adds up to one more shameful episode in the scandal of how Britain treats such citizens. Read full story Source: iNews, 5 July 2020

Most people experience COVID-19 as a short-term illness: once the infection has been fought off, they bounce back to health. But evidence is emerging of a significant minority – sometimes referred to as “long haulers” – who struggle with long-term symptoms for a month or longer. Anecdotal reports have abounded of people left with fatigue, aching muscles and difficulty concentrating. Online support groups on Facebook and Slack have sprung up, already hosting thousands of members who say they have not got better. Speaking to the BBC’s Andrew Marr Show on Sunday, Matt Hancock said it was difficult to gauge the scale of the problem. “This is a really serious problem for a minority of people who have Covid,” the health secretary said. “Some people have long-term effects that look like a post-viral fatigue syndrome.” Scientists are only just beginning to investigate the potential causes of enduring fatigue, but say that there are likely to be a wide variety of reasons why some people face a longer road to recovery. Read full story Source: The Guardian, 5 July 2020

We’re swiftly learning the symptoms of Covid-19 may last longer than previously thought. One in 10 people are reporting a longer tail of symptoms, which exceeds the suggested two-week recovery time. It’s thought around 30,000 people in the UK could be impacted by a prolonged version of the illness – what some are calling ‘long covid’. These people are months into their recovery from the virus and still fighting a range of persistent symptoms. In some cases, the symptoms disappear for a while before coming back. In others, they’re gradually improving over time. Research from the Covid-19 Symptom Study in the UK, led by Professor Tim Spector of King’s College London, shows after three weeks of first reporting symptoms, a group of people continue to experience fatigue, headaches, coughs, loss of smell, sore throats, delirium and chest pain. People with mild cases of the disease are more likely to have a wide range of symptoms that come and go over an extended period, Prof Spector found. And these people are often flying under the radar because they’re not in hospital. Those who believe they’ve had ‘long covid’ are now calling on the government to recognise their plight, invest in research and put support in place. Read full story Source: Huffpost, 2 July 2020

The “hazardous” use of personal protective equipment (PPE) required because of COVID-19 is contributing to the spread of secondary infections in intensive care units and other hospital settings, a leading expert has told HSJ. Infection Prevention Society vice president Professor Jennie Wilson, said: “[PPE] has been used to protect the staff, but the way it has been used has increased the risk of transmission between patients. The widespread use of PPE particularly in critical care environments has exacerbated the problem (of patient to patient transmission). Unless we tackle the approach to PPE we will continue to see this major risk of transmission of infections between patients.” Professor Wilson warned this was espeically worrying as the risk includes spreading antibiotic resistant infections among ICU patients. There is increasing concern these are developing more often in covid patients due to widespread use of broad spectrum antibiotics in the early days of the pandemic, she added. Read full story (paywalled) Source: HSJ, 3 July 2020

Psychiatrist Dr. Scott Krakower was diagnosed with the coronavirus in April and continues to have symptoms more than two months later, making him what’s known as a “long hauler.” Although Krakower said he's feeling better, he is not able to return to work. “Each day is different. Some days are up, some days are down. I would say the mornings are better for me and then by 1 or 2 o’clock is when my voice and my shortness of breath kick in more and then it’s harder to do things.” Krakower hasn’t had a clear answer about when he will recover or whether that may happen, although he takes solace in the fact that he is improving. Krakower continues to try and shake off the symptoms, a signature of long hauling. It’s a trait that has been on display before with MERS and SARS, says Dr Robert Glatter, an emergency physician at Lenox Hill Hospital in New York City. “What we’re seeing is that this is a byproduct of the inflammation from the virus itself. In other words, dead fragments of virus elicit an immune response. And as a result of this, the body reacts and produces certain types of substances that can really have adverse effects,” Glatter said. Read full story Source: Today, 1 July 2020

Problems with hospital discharges in England, highlighted in the largest annual patient survey, reinforce the need for greater integration between health and social care, the sector regulator has said. The Care Quality Commission inpatient survey found that a majority of patients were positive about their hospital care but a significant minority experienced problems on discharge. A third of respondents who were frail said the care and support they expected when they left hospital was not available when they needed it. Three in 10 frail people said they had not had discussions with staff about the need for further health and social care services they might require post-discharge. Four in 10 of all patients surveyed left hospital without printed or written information about what they should or should not do after discharge, and the same proportion said their discharge was delayed. Read full story Source: The Guardian, 2 July 2020

The leader of the Morecambe Bay inquiry has spoken of his disappointment that some of the recommendations have not led to changes, and said royal colleges could inform regulators when they are commissioned to carry out care quality reviews. Bill Kirkup was speaking after HSJ revealed only a small proportion of royal college “invited reviews” were made public, and in some cases even the Care Quality Commission (CQC) had not been made aware of the reviews, or seen final reports. Trusts had commissioned dozens of them into care failings over three years. The inquiry which he chaired into maternity services at the University Hospitals of Morecambe Bay Foundation Trust recommended that all external reviews of suspected service failings should be registered with the CQC and that NHS boards should have a duty to report their findings “openly”. The recommendations of the inquiry were accepted by both the government and the CQC. HSJ used freedom of information law to get copies of reports from recent years, but in many cases trusts refused to share them. Dr Kirkup, who stressd his comments did not refer to any individidual trust, said the findings highlighted a weakness in implementation of “an important recommendation”. Read full story (paywalled) Source: HSJ, 3 July 2020