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Found 16 results
  1. Content Article
  2. Content Article
  3. 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
  4. 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 Iron chelation Haematopoietic stem cell transplantation Emerging therapies
  5. 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
  6. Content Article
  7. 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
  8. 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
  9. 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 have led to a fear and avoidance of hospitals for many people living with sickle cell. While the inquiry did find that specialist haemoglobinopathy services are generally felt to be of a good standard, the report shows that this is far from the case on general wards or A&E departments. Care failings have led to patient deaths and ‘near misses’ are not uncommon. The inquiry heard that awareness of sickle cell among healthcare professionals is low, with sickle cell patients regularly having to educate healthcare professionals about the basics of their condition at times of significant pain and distress and that there is routine failure to comply with national care standards around pain relief when patients attend A&E.
  10. Content Article
  11. 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
  12. 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
  13. 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
  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. Content Article
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