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Found 125 results
  1. Content Article
    Tuesday 12 January – APPG Coronavirus Oral Evidence Hearing Video, first half is speakers living with Long COVID and second half is Professor Danny Altmann and Dr Nisreen Alwan Thursday 14 January – Long COVID Backbench Business debate in parliament: transcript Thursday 14 January – APPG Coronavirus Q&A with Professor Danny Altmann, Dr Nisreen Alwan, Dr Mike Galsworthy and Layla Moran M
  2. News Article
    Younger people who think they are “invincible” need to be aware of the shocking life-changing reality of long Covid, according to health professionals who are living with the condition. Long Covid, also known as post-Covid syndrome, is used to describe the effects of COVID-19 that continue for weeks or months beyond the initial illness. Speaking at the All-Party Parliamentary Group (APPG) on Coronavirus, Dr Nathalie MacDermott, 38, said neurologists believe Covid has damaged her spinal cord and she can only walk about 200 metres without some form of assistance. She said the damage has affected her bladder and bowel too, causing urinary tract infections, and she gets pain in her arms and has weakness in her grip. Dr MacDermott, a clinical doctor sub-specialising in paediatric infectious diseases in the NHS, told MPs there needs to be “better recognition” from employers that long Covid is a “genuine condition” and that people may need to be off work for a significant period of time. She added: “And I think we need better recognition in the public, particularly the younger public who think that they’re invincible. “I’m 38 and I wonder if I’ll ever be able to walk properly without crutches again. Will this continue to get worse? Will I end up in a wheelchair?” Read full story Source: 12 January 2021, Lancashire Post
  3. Event
    Chronic pain following trauma and surgery is recognised but at the same time is incredibly difficult to manage once it is established. Part 2 of this Royal Society of Medicine (RSM) two-part webinar series will focus on the impact of early post-operative and critical care management of trauma patients. Join us to explore ways to minimise the severity of acute pain as well as the transition to persistent pain states. Register
  4. News Article
    With the excitement of the Covid vaccine’s arrival, it may be easy to forget and ignore those of us with “long Covid”, who are struggling to reclaim our previous, pre-viral lives and continue to live with debilitating symptoms. Even when the NHS has managed the herculean task of vaccinating the nation, COVID-19 and the new mutant variants of the virus will continue to circulate, leaving more people at risk of Long Covid. Data from a King’s College London study in September suggested as many as 60,000 people in the UK could be affected, but the latest statistics from the Office for National Statistics suggest it could be much higher. Joanna Herman is a consultant in infectious diseases. "Long Covid' is anything but a mild illness". Nine months on from having the virus, she is seriously debilitated. She explains how the new NHS clinics need to help the thousands of people with Long Covid. Read full story Source: The Guardian, 27 December 2020
  5. News Article
    Patients in hospital with coronavirus should be offered a follow-up six weeks later to check for "long Covid" symptoms, doctors are being advised. The guidance, drawn up by health officials across the UK, says the long-term effects can be "significant". They identified 28 of the most common symptoms, from breathlessness and dizziness to chest pain. Mental health problems including depression, anxiety and struggling to think clearly, have also been reported. "Because this is a new condition, there is still much that we don't know about it," said Paul Chrisp of the National Institute for Health and Care Excellence, which produces health guidance. The NHS has opened 69 specialist clinics across England to offer rehabilitation to people recovering from the disease. Read full story Source: BBC News, 18 December 2020
  6. News Article
    Thousands of patients suffering with the long term symptoms of coronavirus can now access specialist help at more than 60 sites, NHS England announced today. The assessment centres are taking referrals from GPs for people experiencing brain fog, anxiety, depression, breathlessness, fatigue and other debilitating symptoms. NHS England has provided £10 million for the network of clinics, which started opening last month. There are now 69 operating across the country with hundreds of patients already getting help. The new centres bring together doctors, nurses, physiotherapists and occupational therapists to offer both physical and psychological assessments and refer patients to the right treatment and rehabilitation services. Ten sites are now operational in London, seven in the East of England, eight in the Midlands, South East and South West respectively, nine in the North West and a further 18 across the North East and Yorkshire. A further 12 sites are earmarked to launch in January in the East Midlands, Lancashire, Cornwall and Isle of Wight. The National Institute for Clinical Excellence (NICE) has today also issued official guidance on best practice for recognising, investigating and rehabilitating patients with long COVID. Patients can access services if they are referred by a GP or another healthcare professional, so that doctors can first rule out other possible underlying causes for symptoms. Read full story Source: NHS England, 18 December 2020
  7. Content Article
    This guideline includes recommendations on: identifying people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome assessing people with new or ongoing symptoms after acute COVID-19 investigations and referral planning care management follow-up and monitoring sharing information and continuity of care service organisation. Who is it for? Health and care practitioners Health and care staff involved in planning and delivering services Commissioners.
  8. News Article
    One in 10 people infected with the coronavirus experience symptoms that last for three months or longer, the Office for National Statistics (ONS) has said. A new analysis aimed at determining the extent of the “long Covid” problem among infected patients also found that one in five reported having symptoms that lasted for five weeks or longer. The ONS said it estimated that during the week ending on 28 November, there were about 186,000 people in England living with COVID-19 symptoms that had lasted between five and 12 weeks. This number could be as high as 221,000, the ONS warned. It said the data was experimental and based on the findings from its infection survey of households. Read full story Source: The Independent, 16 December 2020
  9. Content Article
    The COGER study, designed by members of the Special Interest Group for Geriatric Rehabilitation of the European Geriatric Medical Society (EuGMS), study aims to: Explore the course of activities of daily living (ADL) recovery and influencing factors. Describe other outcomes after geriatric rehabilitation in post-COVID-19 patients. Describe geriatric rehabilitation services provided to post COVID-19 patients across Europe. The study group are presently looking for rehabilitation services to volunteer to support the work. By taking part you will help them to understand how older people recover from COVID-19, and the services that make a difference. It is possible that data collected will help further the understanding of long-term questions about the best configuration of rehabilitation for older people. This could help harmonise approaches across Europe in an evidence-based way. How to get involved: Firstly, please download and read the protocol document on the BGS website. If you are a centre in the UK, please email j.gough@bgs.org.uk indicating your interest in participating. Germany - If you are from Germany and wish to participate, please email Stefan Grund. Rest of Europe - If you are elsewhere in Europe, please email Miriam Haaksma.
  10. Content Article
    This article, from John Hopkins Medicine, demonstrates some breathing exercises for you to try at home to aid recovery.
  11. News Article
    There are serious concerns over the funding and staffing numbers available for new ‘long-covid’ clinics, while patient groups ‘remain in the dark’ over their locations. Last month, NHS England announced there would be 40 clinics around the country, to start opening at the end of November, with £10m of funding to cover set-up and operational costs until March 2021. But several speakers at HSJ’s inaugural virtual respiratory forum last week said there were still uncertainties and concerns about the capacity to provide the clinics. Dr Jon Bennet, a respiratory consultant and chair of the British Thoracic Society, said staffing the respiratory rehabilitation services within the clinics would be challenging, as “there isn’t at the moment sufficient capacity”. Read full story (paywalled) Source: HSJ, 29 November 2020
  12. Event
    The Chronic Long Covid19 support group presents this international conference for patients. Presenters: Dr David Tuller, Global Public Health Expert, University of Berkeley, California: graded exercise therapy/cognitive behavior therapy treatment approach to ME and why it should not be used for long-covid patients. Nikita Alexandrov biochemist/biohacker, University of Alabama, USA: COVID-19 and the elephants in the room – big misconceptions and important out of the box observations made so far. Secondary infections: why there is no real cytokine storm concern and the issue of mast cell activation. Book your place
  13. Community Post
    Just over a week ago NHS England and NHS Improvement announced the launch of a network of 40 Long COVID clinics over the coming weeks. While there still needs to be more details providing, particularly a clear timeframe for the roll-out of these and information on their locations, I was wondering if anyone has heard about whether there are similar plans for Northern Ireland, Scotland and Wales? From a little online research at the moment I've only found the following: Northern Ireland No formal announcements from the Department of Health along these lines. The charity Northern Ireland Chest Heart & Stroke have set up their own Covid Recovery Service. Scotland No immediately obvious proposals from this recent BBC News article covering the issue. Wales Quotes from a BBC News article from the Welsh Government that 'it expected health boards to develop and improve access to rehabilitation services'. This also mentions that the 'Cardiff and Vale Health Board is the first in Wales planning to open a multi-disciplinary rehabilitation service.' Have you heard or seen anything to suggest plans are in place in Northern Ireland, Scotland or Wales to move forward with a similar plan to the NHS in England? Or perhaps an alternative approach?
  14. News Article
    A drug used to treat rheumatoid arthritis appears to help patients who are admitted to intensive care with the most severe coronavirus infections, researchers say. Tocilizumab, a medicine that dampens down inflammation, improved outcomes for critically ill patients, according to early results from an international trial investigating whether the drug and others like it boost survival rates and reduce the amount of time patients spend in intensive care. The findings have not been peer-reviewed or published in a journal, but if confirmed by more trial data, the drug will be on track to become only the second effective therapy for the sickest Covid patients, following positive results for the steroid dexamethasone earlier this year. “We think these are very exciting results, we are encouraged by them,” said Prof Anthony Gordon, of Imperial College London, the UK’s chief investigator on the REMAP-CAP trial. “It could become the standard of care once we have all the data reviewed by guidelines groups, and also drug regulators.” Read full story Source: The Guardian, 20 November 2020
  15. Content Article
    Earlier this year we published a blog, setting out patient safety concerns around the care and treatment for Long COVID patients.[1] This followed the peak of the first wave of the pandemic, when it started to become clear that there was a significant number of people with confirmed or suspected COVID-19 who were continuing to struggle with debilitating and sometimes severe symptoms months later. Our blog focused on those individuals that did not have an initial COVID-19 infection severe enough to be admitted to hospital, but instead managed their symptoms and recovery at home Since the summer, there has been a growing degree of focus on the issue of Long COVID, with patient groups working hard to make their voices heard and an increase in research to better understand the causes, treatment options and likely outcome for people living with Long COVID. In the UK there has been a formal recognition from the NHS of the need for increased care and support for Long COVID patients.[2] In this blog, we will outline some of the key patient safety issues concerning Long COVID and recent steps the NHS has taken to increase provision and support for these patients. We will then focus on the importance of engagement and information sharing with patients, outlining suggestions on how we feel this needs to be improved. Patient safety concerns for Long COVID patients The National Institute for Health and Care Excellence (NICE) recently published a guideline defining Long COVID (which they refer to as Post-Covid-19 syndrome) as: “Signs and symptoms that develop during or following an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.”[3] Many of those affected by this condition did not have an initial COVID-19 infection severe enough to be admitted to hospital, but instead managed their symptoms and recovery at home. We have highlighted on the hub, our platform for patient safety, the experiences and difficulties faced by patients in this position, such that of Barbara Melville and Dr Jake Suett.[4] [5] Drawing insights from patient experiences shared on the hub and by members of Long COVID support groups formed on social media, we highlighted a number of key patient safety issues that require action.[1] One of the key issues is the need to start listening and learning from patients living with Long COVID, to help inform further research and to understand and address their support needs. People living with Long COVID have told us of friends and family who do not believe the extent or impact of their illness, employers who are pushing them to return to work before they are physically ready and some doctors who don't believe that Long COVID exists. We are also hearing that many are unable to access financial support or benefits, despite being unable to work, which is understandably taking its toll. Although there is now greater recognition of this condition, there remains worrying gaps in both clinical and public awareness; this is hampering efforts to effectively care and treat Long COVID patients. How has the healthcare system responded? From July onwards, the NHS has begun to put in place new support and guidance for patients living with Long COVID. Below is a brief timeline outlining some of the key developments to date: 5 July – The launch of the first phase of a new online rehabilitation service, Your COVID Recovery, is announced.[6] The website went live at the end of the month. Initial information was general to those recovering from COVID-19, not specific to Long COVID patients. 7 October – The NHS announces a new five-part action plan to support Long COVID patients.[7] 30 October – NICE and the Scottish Intercollegiate Guidelines Network (SIGN) set out the scope for developing formal guidance for managing the long-term effects of COVID-19.[8] 5 November – The National Institute for Health Research (NIHR) and UK Research and Innovation launch a £20 million fund for research “into understanding, mitigating and addressing the longer term, physical and mental health effects, of COVID-19 in non-hospitalised individuals”.[9] 6 November – NHS publishes new guidance on accessing and referring into a tailored rehabilitation programme, specifically for Long COVID patients, via the Your COVID Recovery platform.[10] Also, referred to as ‘Phase 2’, this initially went live on 31 October, with plans for the service to be rolled out using a phased approach. 6 November – NHS published commissioning guidance to assist local healthcare systems to establish Long COVID assessment clinics.[11] 15 November – NHS announce the launch of a network of more than 40 specialist clinics within the coming weeks to support patients.[12] Future activity (timescales yet to be confirmed) National rollout of Your COVID Recovery Phase 2 training to GPs. Publication of guidance on the referral by GPs of patients living with Long COVID to Your COVID Recovery Phase 2. Publication of guidance on the referral of patients to Long COVID clinics. Publication of guidance on patients receiving assessments by the Long COVID clinics and referral for diagnosis and treatment to secondary care. Publication of guidance on patients receiving assessments by the Long COVID clinics and referral for diagnosis and treatment to community-based rehabilitation and support services. Greater clarity needed around support for Long COVID patients Patient Safety Learning welcomes the progress that has been made since the summer to begin putting in place the support needed for Long COVID patients. In October, we were invited by the NHS to participate in their Long COVID taskforce and have been feeding back our views as an active stakeholder in this group. However, while we understand the difficulties in responding to a complex new health condition, particularly within the pressures of the pandemic, we do feel that significant improvements could be made to how the NHS is engaging and communicating with patients. As we describe in our report A Blueprint for Action, we believe it is vital that patients are effectively engaged in their care; there is clear research evidence that active patient engagement reduces unsafe care.[13] This principle is recognised by the NHS, who have recently developed a new framework for involving patients in patient safety. To ensure Long COVID patients are properly engaged in their care and receive access to the support that they need, we believe further action is needed in several areas. Long COVID clinics There are a range of unanswered questions about the future provision of Long COVID clinics. We had initially raised this issue with the NHS in September as a result of confusion stemming from comments by the Secretary of State for Health and Social Care, Matt Hancock MP, that these clinics were already up and running, despite no information in the public domain to this effect.[14] [15] In its most recent announcement on this issue, the NHS has now stated that there will be more than 40 of these specialist clinics opened across different regions of England in the coming weeks.[12] We believe that it would be beneficial to provide Long COVID patients with greater clarity on this, specifically by: Publishing a list of the clinics by location. Announcing a more specific timeframe for completed roll-out. Currently available information only states that these are “due to start opening at the end of November”.[12] Setting out plans to address regional disparities, should there be any, to avoid a post-code lottery of access. Explain the rationale for the chosen locations of Long COVID clinics. Your COVID Recovery, Phase 2 When Your COVID Recovery was launched in July, the NHS stated that the second phase, in which people would be able to access personalised support packages, would be made available “later in the summer”.[6] Guidance published at the start of November on the service stated that the second phase was live on 31 October and “rolled out using a phrased approach”.[10] Meanwhile, recent reports in the Health Service Journal have indicated that this national roll-out will not take place until “at least January 2021, with no date confirmed for launch beyond that”.[16] There is also a need for GPs to undertake specific training to be able to refer patients into the Phase 2 rehabilitation service. It is unclear how many practices have received this training to date, where they are located or how long it will take for this referral system to be available nationally. The gradual shifting of the deadlines around this key pillar of support for Long COVID patients has not been clearly communicated. Patients waiting to access this NHS support do not have a clear idea of when they may be able to receive treatment. We believe that the NHS should: Provide clarity on the plans and expected timescales for rolling out training to GPs on the Phase 2 service nationally. Provide regular progress updates on the roll-out and availability of this service. Patient-focused information As it may be apparent from the timeline outlined earlier, much of the activity from the NHS to date has understandably been focused on the practicalities in setting up new support and provision for Long COVID patients. While this is undoubtedly important, we feel there is a clear gap in terms of communicating effectively with people living with Long COVID. In looking to improve the availability of patient resources on this issue, Patient Safety Learning has developed a patient information leaflet aimed to help Long COVID patients understand what they can expect from their GP.[17] This drew on earlier guidance issued by the Royal College of General Practitioners (RCGP) to healthcare professionals directly.[18] We hope this simple guide will empower and reassure patients, providing them with an evidence-based document that can be shared with those around them. We believe that this will also help raise awareness of the health challenges Long COVID patients are facing so that their health and recovery needs can be better met. We believe this type of guidance should be being provided by the NHS directly to patients. The necessity of a clear plan from the NHS for patient engagement Patient Safety Learning believes that a clear plan from the NHS for engaging and communicating with Long COVID patients regarding the roll-out of support should include: NHS England and NHS Improvement and others working in partnership with people living with Long COVID and the public, to improve patient safety, patient experience and health outcomes; supporting people to live healthier lives. This would include a developed and published plan for patient and public engagement.[19] Information for the healthcare system to inform the recognition, diagnosis and treatment of people living with Long COVID. Information for primary and secondary care, ambulance services and the 111 service, Royal Colleges, commissioners etc. This should consist of personal stories to outline the lived experience of patients and highlight the challenges that need to addressed, including how secondary care should be responding to GP referrals and how these services relate to the community-based ‘virtual ward’ initiatives being established. Information for people living with Long COVID that informs and empowers them: what services are being developed and when; how they will be able to access these services; what we know about Long COVID, its impact and how people might experience it; what research is being undertaken; how patients’ voices and experiences are informing the design of the system response; how people can access support, advice and resources from others such as employers, benefits agencies etc. We believe that there is an urgent wider need for this type of public information, separate to the second phase of Your COVID Recovery, which can only be accessed after a patient is referred by a GP. Information to wider society that will influence people’s attitudes and responses to those with Long COVID; information to employers, the benefits system, advice services (such as Citizen’s Advice, Healthwatch, Patients Association and others), media. Such information may also relate to the scale and impact of Long COVID and give advice around personal decisions on behaviours that could prevent people from being infected and infecting others. Information detailing how access to services and support for Long COVID patients may differ, depending which part of the UK they live in, and signposting to the most appropriate guidance in England, Northern Ireland, Scotland, and Wales, as appropriate. It is vital that the NHS provides regular, up-to-date information for people living with Long COVID. This information needs to be clear, transparent and widely accessible, in accordance to the NHS Information Standard.[20] We also believe there is a need to continue to raise awareness of Long COVID among all healthcare staff and the wider public so that patients suffering prolonged symptoms can be better supported in accessing safe, quality care. References 1. Patient Safety Learning, Patient safety concerns for Long COVID patients, Patient Safety Learning’s the hub, 6 July 2020. 2. Patient Safety Learning, NHS announces five-point package to support Long COVID patients, 7 October 2020. 3. NICE, Scottish Intercollegiate Guidelines Network (SIGN) and Royal College of General Practitioners, COVID-19 guideline scope: management of long—term effects of COVID-19, 30 October 2020. 4. Barbara Melville, Dismissed, unsupported and misdiagnosed: Interview with a COVID-19 ‘long-hauler’, Patient Safety Learning’s the hub, 24 June 2020. 5. Dr Jake Suett, My experience of suspected ‘Long COVID’, Patient Safety Learning’s the hub, 10 July 2020. 6. NHS England and NHS Improvement, NHS to launch ground breaking online COVID-19 rehab service, 5 July 2020. 7. NHS England and NHS Improvement, NHS To Offer ‘Long Covid’ Sufferers Help at Specialist Centres, 7 October 2020. 8. NICE, Covid-19 guideline: management of the long-term effects of COVID-19, Last Accessed 17 November 2020. 9. NIHR, Research into the longer term effects of COVID-19 in non-hospitalised individuals – Call scope, 5 November 2020. 10. NHS England and NHS Improvement, Your COVID Recovery. Guidance for the online interactive platform, 6 November 2020. 11. NHS England and NHS Improvement, National guidance for post-COVID assessment clinics, 6 November 2020. 12. NHS England and NHS Improvement, NHS launches 40 ‘long COVID’ clinics to tackle persistent symptoms, 15 November 2020. 13. Patient Safety Learning, The Patient-Safe Future: A Blueprint for Action, 2019. 14. Health and Social Care Committee, Oral evidence: Social care: funding and workforce, HC 206, 8 September 2020. 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”. 15. Patient Safety Learning, Patient Safety Learning calls for the NHS to publish details of post-COVID clinics, 11 September 2020. 16. HSJ, Major delays for new NHS England covid service, 16 November 2020. 17. Patient Safety Learning, Post-COVID-19 syndrome: What support can patients expect from their GP, Patient Safety Learning’s the hub, 19 November 2020. 18. RCGP, Management of the long term effects of COVID-19. The RCGP response and top tips for caring for our patients, V1 30 October 2020. 19. NHS England and NHS Improvement, Patient and Public Participation Policy, April 2017. 20. NHS England and NHS Improvement, The Information Standard, Last Accessed 19 November 2020.