This article is from the source 'guardian' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.
You can find the current article at its original source at http://www.guardian.co.uk/commentisfree/2013/may/17/sarah-mulenga-sickle-cell-nhs-care
The article has changed 3 times. There is an RSS feed of changes available.
| Version 1 | Version 2 |
|---|---|
| Ignorance about sickle cell disease is no excuse for poor NHS care | Ignorance about sickle cell disease is no excuse for poor NHS care |
| (4 months later) | |
| An inquest into the death of Sarah Mulenga has ruled that failures to follow basic procedures by London Ambulance staff contributed to her death two years ago. The two trainee paramedics called to attend to Sarah, who had sickle cell anaemia, in January 2011 failed to carry out a basic set of observations, treated her rudely and refused to take her to hospital because she had soiled herself. Another ambulance had to be called 45 minutes later, by which time her condition had deteriorated; she later died in hospital. | An inquest into the death of Sarah Mulenga has ruled that failures to follow basic procedures by London Ambulance staff contributed to her death two years ago. The two trainee paramedics called to attend to Sarah, who had sickle cell anaemia, in January 2011 failed to carry out a basic set of observations, treated her rudely and refused to take her to hospital because she had soiled herself. Another ambulance had to be called 45 minutes later, by which time her condition had deteriorated; she later died in hospital. |
| This was an extreme and tragic case. But many sickle cell anaemia patients have felt a similar lack of emergency care within the NHS. | This was an extreme and tragic case. But many sickle cell anaemia patients have felt a similar lack of emergency care within the NHS. |
| Sickle Cell anaemia is the second most commonly genetically inherited disease in Britain. It only affects people of black, Asian and Middle Eastern descent; and in the UK the majority of its 12,000 sufferers are of African or Caribbean heritage. In the past 10 years I've lived with different sufferers and witnessed numerous agonising sickle cell "crises", where ambulances have taken up to an hour to attend, only to then drive slowly to A&E where the patients are then ignored for hours. | Sickle Cell anaemia is the second most commonly genetically inherited disease in Britain. It only affects people of black, Asian and Middle Eastern descent; and in the UK the majority of its 12,000 sufferers are of African or Caribbean heritage. In the past 10 years I've lived with different sufferers and witnessed numerous agonising sickle cell "crises", where ambulances have taken up to an hour to attend, only to then drive slowly to A&E where the patients are then ignored for hours. |
| Often emergency staff do not have basic knowledge of the disease. But ignorance about sickle cell disease is not an excuse for NHS staff to fail patients. "The NHS has a duty to deliver the same quality and standard of care regardless of how uncommon or unknown a patient's disease," says John James, chief executive of the Sickle Cell Society. | Often emergency staff do not have basic knowledge of the disease. But ignorance about sickle cell disease is not an excuse for NHS staff to fail patients. "The NHS has a duty to deliver the same quality and standard of care regardless of how uncommon or unknown a patient's disease," says John James, chief executive of the Sickle Cell Society. |
| Speedy response and urgent treatment, most often with painkillers, is critical in a sickle crisis. Severe crises can lead to major organ failure of heart, lungs, kidneys and liver. Even in hospitals that have detailed procedures for chronic patients, these are often ignored by A&E doctors hesitant to give high levels of painkillers. | Speedy response and urgent treatment, most often with painkillers, is critical in a sickle crisis. Severe crises can lead to major organ failure of heart, lungs, kidneys and liver. Even in hospitals that have detailed procedures for chronic patients, these are often ignored by A&E doctors hesitant to give high levels of painkillers. |
| "The problem for emergency staff is that they can't get their head round the level of painkillers you need to control the crises," says 41-year-old Delroy Efemini, a sufferer. In 2005 he attended his local hospital A&E in crisis. A known patient there, he was subjected to hours of waiting and only given over-the-counter painkillers. In excruciating pain he took a cab to another hospital but staff at the first hospital called through and told them to refuse him treatment. He was then forced to return to the first hospital and was finally admitted having spent over 12 hours without any pain relief. "Going to hospital is a gamble for sickle patients", says Efemini. "All the time you're just praying that the nurse or doctor who knows you is on duty, otherwise you're screwed." | "The problem for emergency staff is that they can't get their head round the level of painkillers you need to control the crises," says 41-year-old Delroy Efemini, a sufferer. In 2005 he attended his local hospital A&E in crisis. A known patient there, he was subjected to hours of waiting and only given over-the-counter painkillers. In excruciating pain he took a cab to another hospital but staff at the first hospital called through and told them to refuse him treatment. He was then forced to return to the first hospital and was finally admitted having spent over 12 hours without any pain relief. "Going to hospital is a gamble for sickle patients", says Efemini. "All the time you're just praying that the nurse or doctor who knows you is on duty, otherwise you're screwed." |
| Another patient I know was, in severe crisis, refused oxygen, pain relief and fluids nine times. | Another patient I know was, in severe crisis, refused oxygen, pain relief and fluids nine times. |
| Later that day she suffered a pulmonary embolism and went into cardiac arrest. She almost died in intensive care. | Later that day she suffered a pulmonary embolism and went into cardiac arrest. She almost died in intensive care. |
| "If this disease purely affected white people, this simply would not be the case," says John James. He believes that stereotypes surrounding black people and drugs lead to patients being treated suspiciously and their requests for pain relief ignored. "The first thing they think when you ask for controlled opiates is that you're a druggie", says Efemini. | "If this disease purely affected white people, this simply would not be the case," says John James. He believes that stereotypes surrounding black people and drugs lead to patients being treated suspiciously and their requests for pain relief ignored. "The first thing they think when you ask for controlled opiates is that you're a druggie", says Efemini. |
| Fear of being denied painkillers leads to many patients suffering in silence and those who do speak up are often labelled aggressive or addicts. Sadly, sickle cell patients often downplay their levels of pain in order to get their pain relief faster. | Fear of being denied painkillers leads to many patients suffering in silence and those who do speak up are often labelled aggressive or addicts. Sadly, sickle cell patients often downplay their levels of pain in order to get their pain relief faster. |
| Good practice does exist in urgent care for sickle patients, but it is marred by inconsistency. The only hospitals that have made effective changes in emergency care are those which have helped staff and patients to fully understand and manage the disease. "We teach our staff that if a patient comes in saying they are in pain they should be believed and should be given adequate pain relief within 30 minutes. This is important as the biggest patient complaint is not being believed," says Jo Howard, consultant haematologist at Guy's and St Thomas' NHS Foundation Trust. | Good practice does exist in urgent care for sickle patients, but it is marred by inconsistency. The only hospitals that have made effective changes in emergency care are those which have helped staff and patients to fully understand and manage the disease. "We teach our staff that if a patient comes in saying they are in pain they should be believed and should be given adequate pain relief within 30 minutes. This is important as the biggest patient complaint is not being believed," says Jo Howard, consultant haematologist at Guy's and St Thomas' NHS Foundation Trust. |
| It's clear that negligent practices simply cannot continue. We cannot have another needless tragedy like Sarah Mulenga's. The ambulance workers who failed to treat her are no longer employed, but action needs to go way beyond this. | It's clear that negligent practices simply cannot continue. We cannot have another needless tragedy like Sarah Mulenga's. The ambulance workers who failed to treat her are no longer employed, but action needs to go way beyond this. |
| Only when the NHS ensures training and procedures for emergency staff are consistently enforced for sickle patients can there be drastic change. But first there has to be a change in attitudes. Until then I fear more sufferers could die unnecessarily. | Only when the NHS ensures training and procedures for emergency staff are consistently enforced for sickle patients can there be drastic change. But first there has to be a change in attitudes. Until then I fear more sufferers could die unnecessarily. |
| • This article was amended on 21 May 2013. The original said Sarah Mulenga had a sickle-cell crisis in January 2011. This has been amended to say she had sickle cell anaemia. The article was also amended to remove an incorrect reference to the date of the inquest. | • This article was amended on 21 May 2013. The original said Sarah Mulenga had a sickle-cell crisis in January 2011. This has been amended to say she had sickle cell anaemia. The article was also amended to remove an incorrect reference to the date of the inquest. |
| Our editors' picks for the day's top news and commentary delivered to your inbox each morning. |