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Found 18 results
  1. 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.
  2. News Article
    Whistleblowers at one of England's worst performing hospital trusts have said a climate of fear among staff is putting patients at risk. Former and current clinicians at University Hospitals Birmingham (UHB) NHS Trust allege they were punished by management for raising safety concerns, a BBC Newsnight investigation found. One insider said the trust was "a bit like the mafia". The trust said it took "patient safety very seriously". It said it had a "high reporting culture of incidents" to ensure accountability and learning. Staff concerns included a dangerous shortage of nurses and a lack of communication leading to some haematology patients dying without receiving treatment. The deaths of 20 patients in the haematology department of the Queen Elizabeth Hospital, which is run by the trust, led to a review in 2017 by consultant Emmanouil Nikolousis. Mr Nikolousis, who left the trust in 2020, told the BBC he was shocked by the failings he found and believes patients' lives could have been saved. A report by Mr Nikolousis criticised a lack of "ownership" of patients and a lack of communication among senior clinicians. In some cases this led to patients dying without having received treatment, he said. "Certainly there should have been different actions done," he said. "They could be saved. Certainly, when you don't have an action done, then you don't really know the outcome." Mr Nikolousis said he felt he had no option but to quit after his findings were ignored and his position was made "untenable". He left the NHS after 18 years. "They were trying, as they did with other colleagues, to completely sort of ruin your career," he said. Read full story Source: BBC News, 1 December 2022
  3. 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
  4. Content Article
    This is the website of the independent public statutory Inquiry established to examine the circumstances in which patients in the UK were given infected blood and blood products, in particular since 1970. The Inquiry is Chaired by barrister Keith Langstaff, who has experience of health-related public inquiries. The website contains information on: public hearings and meetings evidence latest news on the Inquiry how to get support if you have been affected by infected blood products. The Inquiry team is also inviting patients and family members of patients who received infected blood or infected blood products to give evidence to the Inquiry, either as a written statement or by speaking to an intermediary. Evidence given to the Inquiry will contribute to its findings and recommendations.
  5. News Article
    A fifth patient has been given the wrong blood at a major teaching hospital’s haematology department where patient safety concerns were raised by clinicians last year. The incident, at University Hospitals Birmingham Foundation Trust, is the fifth never event involving patients being transfused with the wrong blood at the trust since April 2020. Only 15 such never events have been recorded in England in the last two financial years, which means UHB accounted for a third of the total in 2020-21 and 2021-22. HSJ revealed last year that several clinicians had raised safety concerns at the trust’s haematology specialty after most of its services at Heartlands Hospital were moved to Queen Elizabeth Hospital as part of the trust’s pandemic response. The latest never event, which occurred in March, saw a patient being given an “unintentional transfusion of ABO-incompatible blood components” – according to papers provided to the trust’s council of governors. Read full story (paywalled) Source: HSJ, 14 June 2022
  6. Content Article
    This article looks at the issue of distinguishing between haemofilters and plasma filters, which are used in similar clinical settings, to reduce the risk of mis-selection that could result in patient death.
  7. 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.
  8. 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.
  9. 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
  10. Content Article
    This Patient Safety Notice has been developed by Sandwell and West Birmingham NHS Trust following a serious incident inquest of a case involving sampling from a central line. A patient, under renal physicians, required blood cultures from their central venous line (normally used for haemodialysis). Due to unfamiliarity with the correct procedure the line was not clamped prior to use. Air therefore entered the port causing an air embolus and subsequently cardiac arrest.
  11. Content Article
    This report, No Patient Left Behind, has been published by The APPG on Stem Cell Transplantation and Advanced Cellular Therapies, following an inquiry into barriers which patients face when accessing treatment and care.  
  12. 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
  13. News Article
    A man who was treated with imported blood products in the 1980s became the first haemophiliac in the UK to test HIV positive and die of Aids, an inquiry has heard. Kevin Slater, from Cwmbran, was 20 when he developed Aids in 1983 the Infected Blood Inquiry has been told. He was not informed that he had been diagnosed with the condition for at least 18 months and died in 1985. Records show it was recommended that the diagnosis be kept from him. The UK-wide inquiry is looking into what has been described as the worst treatment disaster in the history of the NHS. Haemophilia is a blood condition which affects the clotting of blood in those affected. In the 1980s some of the blood products used to treat the condition were infected with HIV. The inquiry heard there were about 100 haemophiliac patients in Wales at the time. Mr Slater's sister-in-law Lynda Maule said she does not believe he was ever told he had Aids. "He was treated disgustingly," she told the inquiry. "There was no care, nothing. Read full story Source: BBC News, 2 February 2021
  14. Content Article
    After two weeks of evidence by experts in medical ethics the Infected Blood Inquiry finishes its review of Newcastle, reviews a single case from Cardiff and moves onto its first evidence from those involved with the Haemophilia Society. Professor Brian Edwards reflects on the evidence in this NHSManagers.Net article. See also the weekly updates on the inquiry from The Haemophilia Society.
  15. Content Article
    The UK-wide inquiry is looking into what has been described as the worst treatment disaster in the history of the NHS. Thousands of patients across the UK were infected with HIV and hepatitis C via contaminated blood products in the 1970s and 1980s. The Haemophilia Society updates give a weekly summary of inquiry news when public hearings take place.
  16. 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.
  17. Content Article
    SHOT (Serious Hazards of Transfusion) is the UK's independent professionally led haemovigilance scheme.  This year’s Annual SHOT Report looks back at trends and data for the last calendar year, but also highlights several very important messages for us in the present extraordinary times. The data in the report come from across the UK and include material from all areas of healthcare where transfusion is practised.
  18. Content Article
    SHOT is the United Kingdom independent, professionally led haemovigilance scheme.  Since 1996 SHOT has been collecting and analysing anonymised information on adverse events and reactions in blood transfusion from all healthcare organisations that are involved in the transfusion of blood and blood components in the United Kingdom. Where risks and problems are identified, SHOT produces recommendations to improve patient safety. The recommendations are put into its annual report which is then circulated to all the relevant organisations including the four UK Blood Services, the Departments of Health in England, Wales, Scotland and Northern Ireland and all the relevant professional bodies as well as circulating it to all of the reporting hospitals.  As haemovigilance is an ongoing exercise, SHOT can also monitor the effect of the implementation of its recommendations.
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