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Found 21 results
  1. Content Article
    Following on from the care failures highlighted in the 2021 report, 'No one's listening', the Sickle Cell Society have published a new report taking a deeper look at sickle cell nursing care. The findings show the need for vastly more resources, training and support in this critical area of care. The report highlights that not only is no-one listening, but that lives are still being put at risk.
  2. News Article
    Sickle cell patients have begun receiving the first new treatment for the blood disorder in over 20 years. The inherited condition can cause severe pain and organ failure, often requiring hospital admissions. Crizanlizumab is given as a monthly infusion and is thought to cut visits to A&E by 40%. Loury Mooruth, 62, received the treatment at Birmingham City Hospital, having suffered repeated periods of intense pain for decades. During a crisis, patients often need powerful opioid painkillers but Loury, like many others, has faced suspicion when at A&E. "You know the protocol when you go in, which needles and so on. They think straight away you are a drug addict - they don't believe you," she says. She has refused to go to hospital during a crisis for the past two years because of her negative experiences. A report from MPs last year found "serious failings" in sickle cell care with some evidence of discrimination against patients. Dr Shivan Pancham, a consultant haematologist at Birmingham City Hospital, told the BBC: "Our patients often find the experience in emergency departments challenging with a lack of understanding of the severity of pain. "It is hoped with these new therapies if we reduce the likelihood of attending emergency departments, ultimately this will be much better for the patients." Read full story Source: BBC News, 24 February 2022
  3. News Article
    Only half of healthcare professionals feel they have sufficient tools to manage the long-term damage that sickle cell disease brings, new research has revealed. The in-depth study by Global Blood Therapeutics - carried out across 10 countries including the UK, US and Canada - shows that patients living with the illness remain dramatically underserved by healthcare systems, while healthcare professionals don’t feel like they have the knowledge of the disease or their patients, to properly treat them. More than two in five (43%) doctors and nurses cited difficulties due to having different ethnic backgrounds from their patients, it was revealed, while almost three quarters (73%) stated patients of lower economic status can be more difficult to treat. Almost a third of healthcare professionals (31%) found it challenging to understand their patients’ needs. Sebastian Stachowiak, Head of Europe and GCC at Global Blood Therapeutics, told The Independent that the survey “confirms the lack of options for physicians” and expressed hope that, with recent advances in available treatment, patients can be better served in the future. The study also found that almost half (46%) of patients say that emergency room healthcare providers did not believe them about their symptoms, while 48% said that they have been treated like a drug seeker in the emergency room. Read full story Source: The Independent, 14 June 2022
  4. News Article
    NHS staff are failing to follow guidelines for providing care to sickle cell patients - and some of the advice has been branded as “unfit for purpose”. The NHS Race and Health Observatory commissioned research, undertaken by Public Digital, to explore the lived experience of people undergoing emergency hospital admissions for sickle cell and managing crisis episodes at home. The Sickle cell digital discovery report: Designing better acute painful sickle cell care, found that the existence of service-wide information tailored by the National Institute for Health and Care Excellence has “arguably not been designed for an ambulance, A&E and emergency setting”, and states it has been proven that this guideline is “not being used and adhered to consistently”. Moreover, healthcare professionals have warned that the National Haemoglobinopathy Register (NHR) - a database of patients with red cell disorders - is not being readily accessed, while patients reported being treated in a way that breached prescribed instructions. “We believe that sickle cell crisis guidelines could be improved in terms of their usability in a high-pressure emergency setting, and in terms of promoting access to them,” the report authors concluded, adding that current guidance should be adapted. Read full story Source: The Independent, 31 January 2023
  5. Content Article
    Imagine you have a disease that leaves you in severe pain, and frequently means you need emergency strong opioid pain relief. But your condition is rare, and A&E staff often have very limited knowledge of your condition. And on top of that you’re black, and staff assume you’re drug seeking, and this happens over and over again. This is just one of the ways people with sickle cell disorder face discrimination when trying to access health care. Is it any wonder you’d rather avoid the health and care service than have substandard care and/or face stigmatisation?  
  6. Content Article
    Last year, the independent NHS Race and Health Observatory commissioned consultancy, Public Digital, to undertake a ‘digital discovery’ project to explore the lived experience of people undergoing acute emergency hospital admissions for sickle cell and managing crisis episodes at home. The NHS Race and Health Observatory’s January 2023 publication – ‘Sickle cell digital discovery report – Designing better acute painful sickle cell care’ – sets out to understand the broad availability of digital products and services that currently exist. The report explores the range of technology that is in place for Accident and Emergency clinicians, red-cell specialists, and ambulance care, to aid timely support to sufferers on their emergency hospital arrival. A number of focus groups and interviews were carried out with those that have lived experience of the disease, including patients who have suffered acute, painful sickle cell episodes during NHS A&E admissions. Research found a lack of individual care plans in place and, more broadly, no clear definition of what constitutes an actual care plan. A number of recommendations are set out in the report for the NHS and the wider healthcare system.
  7. News Article
    Sickle cell patients’ experiences of barriers to treatment and racial inequalities will be investigated by an NHS body next month, The Independent has learned. The NHS Race and Health Observatory has collaborated with Public Digital, a consultancy group, to lead original research into the experiences of people with sickle cell, including listening to NHS patients’ and carers’ first-hand accounts of acute emergency hospital admissions and managing the condition at home. Research will focus on a series of interviews and ‘experience mapping’ workshops, the findings of which are anticipated to inform recommendations that will help improve emergency care and treatment pathways. “As a priority, we need to discover new measures and treatment plans that can help eradicate the often unacceptable, substandard care people with sickle cell have historically received whilst being unwell and in acute pain,” Dr Habib Naqvi, Director of the NHS Race and Health Observatory, said. This move comes after a parliamentary inquiry into avoidable sickle cell deaths called upon the Observatory to undertake work into sickle cell care in relation to race and ethnicity. The inquiry published a report, ‘No one’s listening’, in November 2021, which uncovered the bleak reality of patients grappling with racism in the NHS while attempting to access healthcare. Only half of healthcare professionals feel they have sufficient tools to manage the long-term damage that sickle cell disease brings, new research from Global Blood Therapeutics found, following extensive studies carried out across 10 countries including the UK, US and Canada. Read full story Source: The Independent, 22 September 2022
  8. Content Article
    Chronic pain is the most common complication affecting adults with sickle cell disease (SCD).Pain profoundly affects people’s quality of life, functional ability, and health care utilization. Clinicians are often unsuccessful at addressing chronic pain in SCD, especially among the large number of patients for whom nonopioid analgesics aren’t sufficient and those who have developed opioid tolerance. Why aren’t we doing better? In this perspective article in the New England Journal of Medicine, Childerhose et al. discuss how a biopsychosocial model can help capture people’s experience of chronic pain by affirming that biologic, neuropsychological, and socioenvironmental elements play a role in pain-related processes. 
  9. Content Article
    The Code Red campaign aims to shine a light on the impact of sickle cell disease (SCD) in the UK by putting those with the condition at centre stage. Dunstan, Laurel, Philip and Zainab feature as campaign ambassadors and tell their individual stories of what it's really like to live with sickle cell.
  10. Content Article
    This report was triggered by the Coroner’s report into the death of Evan Nathan Smith in North Middlesex hospital. Evan was a young man with his whole life in front of him. The mistakes made in his treatment leading to his early and avoidable death brought into sharp focus the lack of understanding of sickle cell, the battles patients have to go through to get proper treatment and the terrible consequences which can come about as a result. Following the publication of the Coroner’s report, the All-Party Parliamentary Group (APPG) on Sickle Cell and Thalassaemia held three evidence sessions, hearing from patients, clinicians and politicians. This report is a result of that evidence. The findings in this report reveal a pattern of many years of sub-standard care, stigmatisation and lack of prioritisation which have resulted in sickle cell patients losing trust in the healthcare system that is there to help them, feeling scared to access hospitals, expecting poor treatment from some of those who are supposed to care for them and fearing that it is only a matter of time until they encounter serious care failings.
  11. Content Article
    Sickle cell disease is the name for a group of inherited red blood cell disorders that affect haemoglobin, which is a protein in red blood cells that carries oxygen through a person’s body. It mainly affects people from African or Caribbean backgrounds, though it can affect anyone. It affects approximately 15,000 people in the UK. In November 2021, the All-Party Parliamentary Group for Sickle Cell and Thalassaemia published a report detailing the issues that people with sickle cell disease experience in relation to their care. The report made 31 recommendations to organisations across the healthcare system to help address these issues. HSIB launched two investigations (see also: Management of sickle cell crisis) to find out what additional learning or knowledge could be added in this area and to provide further insights into the practical challenges that patients with sickle cell disease may face when receiving NHS care. This investigation set out to review the care of patients with sickle cell disease who need to have an invasive procedure. Invasive procedures involve accessing the inside of a patient’s body, either through an incision (cut) or one of the body’s orifices. Specifically, the investigation focused on: how haematology teams – the specialists who treat people with blood disorders – are involved and informed when a patient with sickle cell disease is treated in another area of healthcare how patients with sickle cell disease are prepared for invasive procedures how and where clinical information relevant to the patient is shared.
  12. Content Article
    Sickle cell disease is the name for a group of inherited red blood cell disorders that affect haemoglobin, which is a protein in red blood cells that carries oxygen through a person’s body. It mainly affects people from African or Caribbean backgrounds, though it can affect anyone. It affects approximately 15,000 people in the UK. In November 2021, the All-Party Parliamentary Group for Sickle Cell and Thalassaemia published a report detailing the issues that people with sickle cell disease experience in relation to their care. The report made 31 recommendations to organisations across the healthcare system to help address these issues. The Healthcare Safety Investigation Branch (HSIB) launched two investigations (see also: Invasive procedures for people with sickle cell disease) to find out what additional learning or knowledge could be added in this area and to provide further insights into the practical challenges patients with sickle cell disease may face when receiving NHS care. HSIB used a real patient safety incident, referred to as ‘the reference event’, to explore how sickle cell crises are managed within hospital settings. In particular, the investigation considered: the knowledge nursing staff may have about the care of patients in sickle cell crisis how patient-controlled analgesia (PCA) – where a patient can use a device to give themself doses of pain relief medication – is considered holistically, such as monitoring the patient and staff workload.
  13. News Article
    A groundbreaking inquiry into sickle cell disease has found “serious care failings” in acute services and evidence of attitudes underpinned by racism. The report by the all-party parliamentary group (APPG) on Sickle Cell and Thalassaemia, led by Pat McFadden MP, found evidence of sub-standard care for sickle cell patients admitted to general wards or attending A&E departments. The inquiry also found widespread lack of adherence to national care standards, low awareness of sickle cell among healthcare professionals and clear examples of inadequate training and insufficient investment in sickle cell care. The report notes frequent disclosures of negative attitudes towards sickle cell patients, who are more likely to be people with an African or Caribbean background, and evidence to suggest that such attitudes are often underpinned by racism. The inquiry also found that these concerns have led to a fear and avoidance of hospitals for many people living with sickle cell. Care failings have led to patient deaths and “near misses” are not uncommon, leading to a cross-party call for urgent changes into care for sickle cell patients. Read full story Source: The Independent, 15 November 2021
  14. News Article
    Public services are dismissing sickle cell patients because the illness disproportionately affects Black people, campaigners have warned. The blood disorder is prevalent among African and Caribbean communities and advocacy groups say this means it remains poorly understood within state institutions, often leading to the needless suffering and even death of those diagnosed. The issue has gained wider attention following the high-profile cases of two Black men, Richard Okorogheye and Evan Nathan Smith, who lived with the disease and died amid claims their vulnerabilities were overlooked by the NHS and police. Chris Abdullahi, co-founder of charitable initiative Sound of Sickle, told The Independent it is common for sickle cell patients’ painful symptoms to be ignored by healthcare practitioners. He said he has heard similar accounts “well over 100 times” from across the UK. “Just last week someone else mentioned that they were in hospital and had to battle their nurses for pain medication from opioids to something as simple as ibuprofen,” the 27-year-old, who also lives with sickle cell, said. These experiences serve to further entrench the “massive sense of distrust” in the healthcare system which is evidenced through lower vaccine uptake in Black communities, Mr Abdullahi explained. A lack of awareness about the disease has led sickle cell patients to often form informal support networks, through which information can be exchanged about the best hospitals at which to maximise the chances of their condition being taken seriously. Read full story Source: The Independent, 18 April 2021
  15. News Article
    A young NHS patient suffering a sickle cell crisis called 999 from his hospital bed to request oxygen, an inquest into his death was told. Evan Nathan Smith, 21, died on 25 April 2019 at North Middlesex Hospital, in Edmonton, north London, after suffering from sepsis following a procedure to remove a gallbladder stent. The inquest heard Smith told his family he called the London Ambulance Service because he thought it was the only way to get the help he needed. Nursing staff told Smith he did not need oxygen when he requested it in the early hours of 23 April, despite a doctor telling the inquest he had “impressed” on the nurses he should have it. Smith’s sepsis is thought to have triggered the sickle cell crisis – a condition that causes acute pain as blood vessels to certain parts of the body become blocked. Barnet Coroner's Court heard Smith, from Walthamstow in east London, might have survived if he had been offered a blood transfusion sooner but the hospital’s haematology team were not told he had been admitted. Read full story Source: The Independent, 3 April 2021
  16. News Article
    From the end of 2021, a question on sexual activity of partners in areas where HIV is widespread will be removed from the donor safety check form, in an effort to increase inclusivity among donors. The changes will particularly improve the ease to donate blood for Black African donors. Currently, prospective donors are asked if they have recently had sex with a partner who may ever have been sexually active in an area where HIV is endemic, which includes most of sub-Saharan Africa. If they have, the donor will then be deferred for three months after the last sexual contact with that partner. This can often mean Black African and other potential donors in long-term relationships have been unable to donate blood. Now, the UK Government has outlined plans to remove the question from those asked in the donor safety check, opening the door to a greater number of donations. Increasing blood donor inclusivity for those who are Black African, Black Caribbean, and of Black mixed ethnicity is particularly important because they are more likely to have the rare blood sub-group, such as Ro, that many Black sickle cell patients need. The change, making it easier for people from these groups to donate, will create greater opportunities to meet the ongoing need for rarer blood types and help improve and save lives in the UK. Read full story Source: National Health Executive, 11 October 2021
  17. News Article
    It was 4am on a Sunday in San Antonio, US, when Dana Jones heard an ominous sound, barely audible over the whirring of box fans, like someone struggling to breathe. She ran down the hall and found her daughter Kyra, age 12, lying on her back, gasping for air. Terrified, she called 911. A police officer, the first to arrive, dashed into Kyra’s bedroom, threw the slender girl over his shoulder and laid her on a leather sofa in the living room. He asked her mother, an oral surgery technician, to give her CPR. Kyra’s lips were ice-cold. An ambulance whisked the girl to Methodist Children’s Hospital, where staff members swarmed her and put her into a medically induced coma. Kyra, who has sickle cell, had suffered a devastating stroke — her second — a common complication of this inherited disease, which afflicts 100,000 Americans, most of them Black. She most likely would never have had the strokes if she had been given an annual screening test and treatment proven more than two decades earlier to prevent 9 out of 10 strokes in children with the disease and recommended by the National Institutes of Health. But like countless other children with sickle cell, she was never screened. Read full story Source: New York Times, 23 May 2021
  18. Content Article
    A new multinational survey, on more than 1,300 patients, caregivers and healthcare professionals in 10 countries, shines a needed light on the misunderstood realities, unseen burden and care challenges of sickle cell disease. The Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey, one of the largest global burden of disease surveys conducted in sickle cell disease, identified long-term health complications of sickle cell disease as a key concern among 1,300 patients and healthcare professionals surveyed from 10 countries The survey also revealed that sickle cell disease patients' caregivers face profound physical, psychosocial, and economic burdens resulting from taking care of people living with the disease. The findings of the survey were presented during a poster presentation at the European Hematology Association (EHA) 2022 Hybrid Congress. “Sickle cell disease is a lifelong condition that causes damage in the body and has a profound impact on the quality of life of those who suffer from it and their caregivers. The SHAPE survey is important because it illustrates how vital it is that we understand our patients’ needs, and it suggests what we within the medical community can do to help change perspectives, increase education and awareness, and improve care,” said Dr. Baba Inusa, professor and consultant of paediatric haematology, Guy’s and St Thomas’ NHS Foundation Trust, London and chair of the National Haemoglobinopathy Panel in England. “These results are a wake-up call, and I believe that the actions that follow can enable us to help drive a better dialogue and improved conversations around the management and care of this long-neglected and devastating disease.”
  19. Content Article
    These standards for the clinical care of adults with sickle cell disease were produced by the Sickle Cell Society in collaboration with a broad multi-disciplinary group of healthcare providers, patients and support groups.
  20. Content Article
    Medicine is a mirror for the racial injustice in our society; it is a field riddled with racial disparities in everything from research funding to patient care to life expectancy. There may be no population of patients whose healthcare and outcomes are more affected by racism than those with sickle cell disease (SCD). Patients with SCD are too often marginalised and dismissed while seeking medical care when their bodies hurt and they cannot breathe. As medical leaders around the United States issue statements denouncing racial injustice and calling for us to “dismantle racism at every level,” we must ensure that these pledges translate into durable improvements for patients with SCD. Alexandra Power-Hays and Patrick T. McGann propose a number of changes to reduce the impact of racism on patients with SCD in the US.
  21. News Article
    Sickle cell patients are being put at risk because of a chronic shortage of specialist nurses to treat them, a damning new report has found. 'The Difference Between Life and Death', a new study by the Sickle Cell Society, found that there are not enough sickle cell workers to deliver a good standard of care. One patient called Abi Adeturinmo told researchers that previous traumatic experiences caused by delays in receiving pain relief medication and poor care meant she “tries not to go to the hospital when in sickle cell crisis unless it is life-threatening”. Another patient, Araba Mensah, whose daughter has sickle cell disorder, said there was a lack of “hands-on” nursing, and said patients who have difficulties feeding themselves or with personal hygiene were “left to suffer unattended”. John James, CEO of the Sickle Cell Society, said: “While there are undoubtedly workforce challenges across all parts of the health system, the evidence in this report suggests that sickle cell is disproportionately impacted as a result of the legacy of neglect of sickle cell care. “On behalf of everyone affected by sickle cell, we are urging NHS England to take action now to ensure all sickle cell patients have access to the specialist care they are entitled to.” Read full story Source: The Independent, 24 November 2023
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