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Found 13 results
  1. Content Article
    The standards cover the following areas of care and treatment: Organisation of care Primary care Health and wellbeing Acute and chronic pain Neurological complications Cardiorespiratory complications Renal and urological complications Priapism Fever and sepsis Orthopaedic complications Gastroenterological and hepatobiliary complications Ophthalmological complications Anaemia Leg ulcerations Outpatient management Reproductive health Surgery Hydroxycarbamide Blood transfusion
  2. 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 anticipa
  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 diffe
  4. Content Article
  5. 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
  6. 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 t
  7. 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 overlooke
  8. 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
  9. 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
  10. 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 investm
  11. Content Article
  12. Content Article
    Key findings from the inquiry include: evidence of sub-standard care for sickle cell patients admitted to general wards or attending A&E departments (including a 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 frequent reports of negative attitudes towards sickle cell patients and a weight of the evidence suggests that such attitudes are often underpinned by racism. The inquiry also found that these concerns
  13. Content Article
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