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Found 36 results
  1. Community Post
    In a new blog on the hub, Laura Evans discusses the lack of protection against Covid-19 for vulnerable patients when going for a GP appointment or into hospital and shares her personal experience of being dismissed when asking for basic patient safety measures to be put in place. We'd like to hear your experiences. Are you a vulnerable patient? What is your Trust or GP practice doing to make you feel safe? Please comment below (sign up first for free) or you can email us at [email protected].
  2. Content Article
    In this blog, Laura Evans discusses the lack of protection against Covid-19 for vulnerable patients when going for a GP appointment or into hospital. She shares her personal experience of being dismissed when asking for basic patient safety measures to be put in place. Imagine you are in hospital waiting to be taken down for surgery. You are informed the surgeon does not like wearing gloves, mask or headwear and says it is their personal preference. You are also informed that the operating theatre has not been cleaned since the patient before you. What do you do? Do you say something, politely reminding people of your right to be kept safe in hospital? Or do you remain silent to avoid being ridiculed or made to feel like there is something wrong with you? Of course, this scenario would never happen. It would not be tolerated by society. There are safety regulations and protocols in place to prevent, as far as reasonably possible, spread of disease in healthcare settings. However, where spread of Covid-19 is concerned, this genuine fear is the lived reality for millions of people attending healthcare appointments where their vulnerability is neither checked nor proactively catered for. Many people do not have the confidence, in some cases the wherewithal, to ask people to be careful around them in healthcare settings. Those who do ask for their needs to be met, like myself, have been condescended to and, in some instances, shouted at when arranging appointments. The only exception being when arranging appointments on the cancer pathway, where there is an acceptance that the immune system may be compromised. It is astonishing. What is it about this particular C word? Covid-19 is responsible for the deaths of over a quarter of a million people in the UK and the mass disablement of millions lucky enough to survive it but who are now living with Long Covid. There are also over a million people who shielded during the pandemic restrictions, whose clinical vulnerability has not suddenly gone away. Even if the basic human response leaves a lot to be desired, it has become an economic imperative to prevent so many people being sick. The World Health Organization only declared the emergency phase of the pandemic over, the virus itself continues to devastate lives. The number of people unable to work full time, or even work at all, since the start of the pandemic is rising sharply.[1] The number of people moving to part time work or unemployment to care for someone has also risen in the last few years.[2] A BMJ study found people living with Long Covid have lower quality of life than stage 4 lung cancer patients.[3] Covid-19 has profoundly debilitating effects on aspects of normal life, such as walking, talking, cognitive function, bathing and dressing, personal relationships with friends and family, and employment. There is a lot of rhetoric about preventative medicine; why is more not being done to protect people from these devastating consequences? It is not just Covid-19 that spreads easily when basic protections are not proactively put in place. Patients are still swabbed for MRSA in pre-op checks despite the MRSA outbreak being two decades ago. Clearly proactive prevention works. Yet, there is no routine testing for Covid and a large proportion of positive cases are hospital acquired. My local NHS Trust, Mersey and West Lancashire Teaching Hospitals, has been exemplary across its Southport and Ormskirk hospital sites wherever patients request safety precautions. Nothing is too much trouble. However, interactions with other Trusts have resulted in an appalling lack of respect and dignity, and an unnecessary battle for safe practices and care pathways. There is a worrying ‘survival of the fittest’ narrative pervading this matter, harking back to times when sick and disabled people were treated as socially embarrassing and a burden, to be hidden away and kept quiet. Anyone with the privilege of a robust immune system should ask if you would allow a medical practitioner to treat your open wound without gloves if you knew they were carrying a bloodborne infection? Any reasonable person would doubt such lapses in judgement. So why is Covid-19 different? Why should a vulnerable person be expected to tolerate lack of protections against Covid-19 and why is the NHS not compelled to put basic patient safety measures in place as they are expected to prevent spread of disease? It makes no sense. References House of Commons Library. Research Briefing. Labour Market Statistics. UK Government, 18 February 2025. Office for National Statistics. Employment in the UK: February 2025. Estimates of employment, unemployment and economic inactivity for the UK. 18 February 2025. Walker S, Goodfellow H, Pookarnjanamorakot P, et al. Impact of fatigue as the primary determinant of functional limitations among patients with post-COVID-19 syndrome: a cross-sectional observational study. BMJ Open, 2023. We would like to hear your experiences Are you a vulnerable patient? What is your Trust or GP doing to make you feel safe? You can share your experience by posting in the Comments below or join our conversation in the Community area of the hub. Related reading on the hub: “A perfect storm”: The global impact of the pandemic on patient safety Promises of Long Covid support have not materialised (a blog by Clare Rayner) Covid-19 : A risk assessment too far? A blog by David Osborn - Questions around Government governance Exploring the barriers that impact access to NHS care for people with ME and Long Covid Patient safety concerns for Long COVID patients
  3. Content Article
    The only masking that’s going on is that of the government’s continued failure to get to grips with the virus, writes George Monbiot in this Guardian opinion piece. For some people, going to hospital may now be more dangerous than staying at home untreated. Many clinically vulnerable people fear, sometimes with good reason, that a visit to hospital or the doctors’ surgery could be the end of them. Of course, there have always been dangers where sick people gather. But, until now, health services have sought to minimise them. Astonishingly, this is often no longer the case. Across the UK, over the past two years, the NHS has been standing down even the most basic precautions against Covid-19. For example, staff in many surgeries and hospitals are no longer required to wear face masks in most clinical settings. Reassuring posters have appeared even in cancer wards, where patients might be severely immunocompromised. A notice, photographed and posted on social media last week, tells people that while they are “no longer required to wear a mask in this area”, they should use hand sanitiser “to protect our vulnerable patients, visitors and our staff”. Sanitising is good practice. But Covid-19 is an airborne virus, which spreads further and faster by exhalation than by touch.
  4. News Article
    A frailty index is rationing treatment for older and disabled people who catch coronavirus, says Patience Owen. Patience has has a debilitating connective tissue disorder and, like thousands of others with rare conditions, is already in a minority within a minority, marginalised by our NHS, battling increasing disability day by day. Back in March, without consultation and days before the first lockdown, the Clinical Frailty Scale (CFS), a worldwide tool used to swiftly identify frailty in older patients to improve acute care, was adapted by the National Institute for Health and Care Excellence (NICE). It asked NHS staff in England to score the frailty of Covid patients. Rather than aiming to improve care, it seems the CFS – a fitness-to-frailty sheet using scores from one to nine – was used to work out which patients should be denied acute care. Nice’s new guidelines advised NHS trusts to “sensitively discuss a possible ‘do not attempt cardiopulmonary resuscitation’ decision with all adults with capacity and an assessment suggestive of increased frailty”. "Checking the scale, I found I would score five, the 'mildly frail' category, and therefore should I get Covid I could be steered towards end-of-life care. Bluntly, if I catch the virus, the NHS may help me to die, not live," says Patience. By early April, there was a proliferation of illegal “do not resuscitate” (DNR) notices in care homes for people with learning disabilities, and for older people in care homes and in hospitals. Many acutely ill patients stayed at home with Covid symptoms in the belief that they risked being denied care in hospital. Following warnings by the healthcare regulator, the Care Quality Commission, and other medical bodies, that the blanket application of the notices must stop, and legal challenges by charities, exclusions were made to the NICE guidelines. These included “younger people, people with stable long-term disabilities, learning disabilities or autism”. Yet the guidelines remain in place, in spite of the fact that they appear to contravene the Human Rights Act (including the right to life, article 2, and the right to non-discrimination, article 14). A spokeswoman for NICE says it is “very aware of the concerns of some patient groups about access to critical care, and we understand how difficult this feels. Our COVID-19 rapid guideline on critical care was developed to support critical care teams in their management of patients during a very difficult period of intense pressure." “'Difficult' is a hollow word for the feeling of being selected to die," says Patience. "It’s difficult not to conclude that those with long-term conditions and disabilities, like myself, have become viewed as a sacrificial herd." Read full story Source: The Guardian, 29 September 2020
  5. News Article
    A leaked government report suggests a "reasonable worst case scenario" of 85,000 deaths across the UK this winter due to COVID-19. The document also says while more restrictions could be re-introduced, schools would likely remain open. But it says the report "is a scenario, not a prediction" and the data are subject to "significant uncertainty". However some are critical of the modelling and say some of it is already out of date. The document, which has been seen by BBC Newsnight, was prepared for the government by the Sage scientific advisory group, which aims to help the NHS and local authorities plan services, such as mortuaries and burial services, for the winter months ahead. Read full story Source: BBC News, 29 August 2020
  6. News Article
    Demand for oxygen from COVID-19 patients recovering at home is set to place the NHS under strain, the health service has warned. NHS England has issued guidance to out-of-hospital health providers on the extra demands likely to be placed on them given the number of people recovering after a hospital stay with the coronavirus. It warns that the provision from its home oxygen services and community respiratory teams across the NHS is expected to be an issue as the scale of demand increases. Andrew Whittamore, a practising GP and clinical lead for the Asthma UK and British Lung Foundation partnership, said concerns about the potential for hospitals to be overwhelmed in the early part of the pandemic had led to community oxygen teams being primed to take on more patients – but he described that ramping up as “a short-term fix”. “We don’t know how long people are going to need oxygen or other services for,” he said. “There are definitely going to be extra patients added on to our community teams’ workloads.” The Taskforce for Lung Health – of which the British Lung Foundation is a member – has raised particular concerns about access to pulmonary rehabilitation. An education- and exercise-based treatment, which is proven to be more effective for lung patients than many drug-based treatments, and face-to-face classes have been suspended during the pandemic. It may be that such treatment would also be helpful for some patients recovering from COVID-19. Jackie Eagleton, policy officer at the British Lung Foundation, said there had been issues with access to pulmonary rehabilitation for a long time, but the need to offer this form of support to people with lung conditions “has never been more pressing than it is now”. Read full story Source: The Independent, 16 June 2020
  7. News Article
    The UK's organ transplant network could be forced to shut down as a result of the coronavirus outbreak, the body that runs the scheme is warning. One factor is the pressure on intensive care beds, according to NHS Blood and Transplant (NHSBT). But there is also the risk to transplant patients, who have their immune systems suppressed so their bodies don't reject new organs. This is a dilemma for those like Ana-Rose Thorpe, from Manchester, who is waiting for a liver transplant. Now aged 29, Ana-Rose has lived with hepatitis almost her entire life after contracting it as a baby. The disease has taken its toll and now her liver is failing and she is in desperate need of a transplant. "Having to go into hospital while there are coronavirus patients there is very worrying," she says. "Whilst my body could withstand the transplant, the longer I'm not being monitored, not being seen as often as I was, the longer I leave it, I could just get sicker and sicker. "I feel like it's patients that are already on the transplant list, patients waiting for other operations, we have just been swept aside." "It's my life - it is a matter of life and death," Ana-Rose says. Read full story Source: BBC News, 9 April 2020
  8. News Article
    Nick has terminal bowel cancer. He’s been told he won't receive chemotherapy for three months because it would put him more at risk of the coronavirus. He fears having the treatment taken away would shorten his life. Current NHS guidelines say cancer specialists should discuss with their patients whether it is riskier for them to undergo or to delay treatment at this time. Read full story Source: BBC News, 6 April 2020
  9. News Article
    Thousands of people have been missed off the government's high risk list for Covid-19 despite meeting the criteria. Among them have been transplant patients, people with asthma and some with rare lung diseases. Many are worried it will affect their ability to access food and medical supplies as they shield from the virus, unable to leave their homes for at least 12 weeks. "It's like she's been forgotten," said Bev Pearson, mother of 20-year-old heart transplant patient Lucy Pearson. Miss Pearson, from Whitsbury in Fordingbridge, Hampshire, had her transplant 14 years ago and still visits hospital for regular check-ups. She has been shielding in the home she shares with her mother, brother and sister - none of whom have been venturing out in an attempt to protect her. Despite registering her daughter on the government list herself, she said she had received no confirmation. When she asked her GP she was told it had "nothing to do with the surgery", she added. Read full story Source: BBC News, 7 April 2020
  10. News Article
    Healthcare professionals have been told to consider not treating patients with the COVID-19 coronavirus if they themselves would be put at risk, part of new ethical guidance that calls on doctors to prioritise some ailments over the pandemic. The new recommendations for healthcare professionals over 70 years, or with pre-existing conditions, to put themselves first when tackling the pandemic comes following the death of a doctor who returned to the frontlines as a volunteer following a call to arms from the government. The guidance from the Royal College of Physicians (RCP) makes up part of a sweeping list of ethical considerations faced by healthcare workers in the face of the global pandemic. Read full story Source: The Independent, 2 April 2020
  11. News Article
    GP practices should review 1.5 million patients identified by NHS England as the most vulnerable to the coronavirus. NHS England will send a standard letter to these patients asking them to stay at home at all times and avoid any face-to-face contact for at least 12 weeks. GPs will be able to access a report on which patients will be contacted with specific advice, with NHS England directing GPs to review the list and provide additional support to patients. The patients, who are at ‘the highest risk of severe illness that would require hospitalisation from coronavirus’, include those who have had an organ transplant; people with specific cancers; people with severe respiratory conditions; people with rare diseases; people on immunosuppression therapies; and pregnant women with significant heart disease. In a letter to GPs, NHS England said: "We ask that you review this report for accuracy and, where any of these patients have dementia, a learning disability or autism, that you provide appropriate additional support to them to ensure they continue receiving access to care." Read full story Source: Management in Practice, 24 March 2020
  12. News Article
    New guidelines have been published to help doctors and nurses decide how to prioritise patients during the coronavirus pandemic. The advice from the National Institute for Health and Care Excellence (NICE) was produced amid concerns that the NHS would be overwhelmed by the demand for intensive care beds and ventilators. The three new NICE guidelines, which have been drawn up within a week rather than the usual timescale of up to two years, cover patients needing critical care, kidney dialysis and cancer treatment. They say all patients admitted to hospital should still be assessed as usual for frailty “irrespective of Covid-19 status”. Decisions about admitting patients to critical care should consider how likely they are to recover, taking into account the likelihood of recovery “to an outcome that is acceptable to them”. Doctors are advised to discuss possible “do not resuscitate” decisions with adults who are assessed as having increased frailty, such as those who need help with outside activities or are dependent for personal care. Read full story Source: Independent, 22 March 2020
  13. Content Article
    IMPARTS is an evidence based website with guides aimed at people with long term conditions (such as acute kidney injury, COPD and diabetes) and COVID-19. IMPARTS has put together a list of resources from condition-specific charities which they hope will help and provide reassurance during this time. This includes specific advice on the following: Coping with stress during COVID-19 (World Health Organisation) Sleep anxiety: tips to manage and improve sleep (The Sleep Council) Looking after your mental health during Coronavirus (The Mental Health Foundation) Coronavirus and your wellbeing (MIND) COVID recovery online course (Lancashire Teaching Hospitals NHS Foundation Trust) Health unlocked – a holistic approach to healthcare OCD and COVID-19 survival tips (OCD UK).  
  14. Content Article
    A recent Health Foundation long read suggests that the COVID-19 pandemic could be a watershed moment in creating the social and political will to build a society that values everyone’s health – now and in the long term. The global pandemic and the wider governmental and societal response, is certainly bringing health inequalities into sharp focus. And it has been apparent from the early stages of the pandemic that some groups are at much higher risk of catching and dying from the virus than others. Factors such as age, gender, ethnicity and socioeconomic deprivation are all known to be important. Critically, these factors combine in complex ways to put some people at much greater risk. In addition, the measures taken to control the spread of the virus are having unequal socioeconomic impacts, which are likely to deepen health inequalities in the long term. Over the coming months, the Health Foundation will continue to round up key evidence on COVID-19 and inequalities. In this article the Health Foundation give an overview of some key themes emerging from recent work on the unequal impact of COVID-19, focusing on how children and young people are being affected, and the economic effects of the pandemic.
  15. Content Article
    The results of Digital Health Intelligence’s first survey of CNIO Network members provides a ’state of the nation’ insight into nursing and allied health professional leadership in healthcare IT. This webinar offers a chance to learn about some of the key findings of the survey and to hear from senior nursing figures on their thoughts about what it means for where we go next. This webinar will be of interest to: anyone currently working in a nursing/allied health professionals (AHP) clinical informatics role those who aspire to develop their career in this area those who are seeking to set up such a role within their organisation those currently working with CNIOs/AHP informatics leads. Attendees will learn: more about how CNIO/AHP informatics roles are currently set up in the NHS – time commitment, reporting structures etc what the profile is of those holding such roles about possible challenges in connections between CNIOs/AHPs in informatics roles and CCIOs and CIOs thoughts on whether the CNIO/AHP informatics role should be formally recognised further views from senior leaders on the future of these roles.
  16. Content Article
    This blog has been written for the Health Foundation and looks at the impact COVID 19 has had on patients with long term condions. The purpose of this blog was to examine the impact of COVID-19 on access to and use of health care services for people with pre-existing health conditions including asthma, cancer diabetes, heart disease and mental health illness. The Health Foundation supported an online YouGov survey of members of the public, designed by the Resolution Foundation. 6,005 UK citizens responded to the survey between 6 and 11 May. This blog draws on the data and looks at: the level of reduction in access for care management the reasons behind the reduction in access.
  17. Content Article
    This perspective published in the The New England Journal of Medicine examines the problem of racial disparities and the COVID-19 pandemic. The Chowkwanyun and Reed highlight the importance of viewing the data emerging from the crisis in the appropriate socioeconomic and deprivation contexts to protect against ineffective compartmentalisation of the populations being affected. 
  18. Content Article
    The results of this US study are consistent with findings from China and Italy, which suggest that patients with underlying health conditions and risk factors, including, but not limited to, diabetes mellitus, hypertension, COPD, coronary artery disease, cerebrovascular disease, chronic renal disease, and smoking, might be at higher risk for severe disease or death from COVID-19. This analysis was limited by small numbers and missing data because of the burden placed on reporting health departments with rapidly rising case counts, and these findings might change as additional data become available.
  19. Content Article
    Philip Anderson’s able-bodied daughter, Lucy, joins Philip in sharing their perspectives of positive developments during the coronavirus lockdown, and their hopes for the future. Philip acquired a debilitating rare disease and has had to learn to live with remorseless erosion of his physical capacity, and increasing dependency. "I confess that when I was able-bodied, I was not aware of the extent of restrictions imposed by organisations on those with physical impairments. I’m only as disabled by the choices others make, rather than by loss of my motivation to live life ‘normally'. I hope that many who are experiencing some of our restrictions for the first time, will be passionate advocates for those with disability," says Philip in this thought-provoking article published in Independent Living.
  20. Content Article
    The British Thoracic Society have drawn together the following links to information for patients with lung disease and COVID-19. These include: asthma  cystic fibrosis  mesothelioma  pulmonary fibrosis  sarcoidosis UK  travel advice for patients  tuberculosis  lung cancer
  21. Content Article
    The ongoing coronavirus outbreak is an understandable concern for all of us and people with a weakened immune system are at a higher risk of experiencing more serious complications from it. This web resource from the charity Anthony Nolan, gives advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Anthony Nolan is working alongside other cancer charities, medical experts and the NHS to make sure this advice is updated as the situation develops.
  22. Content Article
    This link provides a framework for end of life care and breaking bad news during the Covid-19 pandemic. It has been created by e-LfH, a Health Education England Programme in partnership with the NHS and Professional Bodies. Resources include: Discussion of Unwelcome News during Covid-19 Pandemic: a framework for health and social care professionals  Covid-19: Evidence-based advice for difficult conversations Scottish Quality and Safety Partnership Poster - unwelcome news Real Talk Framework Telephone Prompt List Real Talk Framework Sketch Note Video 1 - The framework Video 2 - Community (Advance Care Planning: how I have the conversation) Video 3 - Breaking bad news Video 4 - Ceilings of Treatment. Nb: The below link will take you to a landing page. To access the end of life resources listed above, you will need to go to the 'End of Life Care' folder and then to 'Documents and Videos'. 
  23. Content Article
    The UK Acquired Brain Injury Foundation (UKABIF) is advocating on behalf of people affected by an acquired brain injury in relation to ensuring proper care while managing the impact of coronavirus. This coronavirus information page gives a list of useful resources for those with acquired brain injuries and those caring for them.
  24. Content Article
    Stephen Pollard, Editor of the Jewish Herald, speaks openly to unherd about his leukaemia diagnosis and his fears as a 'highly vulnerable' person amid the coronavirus pandemic.
  25. Content Article

    Self-isolation may be a pipe dream

    Anonymous
    As a carer of my wife who has several chronic underlying health conditions, and a couple myself, we have been in self-isolation for a week already. However, circumstances may mean that this has to end soon. We knew what would be coming at us several weeks ago. Our daughter is a bit of a doomsday prepper and she had been warning us for a while. We had slowly stocked up on a few essentials, nothing ridiculous. We'd also made sure that we had supplies of our medications, and switched away from Boots to a small local pharmacy who promised to do deliveries. We had corded phones, candles, lanterns and lots of batteries in case of power outages. We had some bottled water. We had stocked up the freezer. We hadn't thought the panic buying would start so quickly, or last so long. Toilet paper was a surprise. We hadn't bought any extra of that, so that was an issue, but our daughter managed to find some for us. We are used to working from home. We have done it off and on for over a decade, so this situation is not new for us. We are tech savvy and able to use digital tools to meet our work needs. However, as freelancers, we have been hit hard by work just being cancelled and having much less to do than normal. Less money coming in too, soon. The hardest thing of all has been that while we want to heed the Government's call to stay at home as reasonably high-risk individuals, we cannot book any food deliveries. Tesco, Ocado and Morrisons have no slots available at all. Thankfully we had two already booked with Tesco before the end of this month. After that, the food will start to run out here. With rationing etc already in place, our family who do visit the shops cannot buy extra for us. At some point, regardless of the risk, we may have to leave the house. Wish us luck!!
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