Will Sickle Cell Inquiry in UK Improve Patient Care?

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by Mary Shaniqua |

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Last Monday, I awoke to a flurry of comments about the results of a landmark sickle cell inquiry here in the U.K. that uncovered evidence of racism in sickle cell patient care in the the public healthcare system. The report by the All-Party Parliamentary Group on Sickle Cell and Thalassemia, titled “No One’s Listening,” found:

  • Evidence of subpar care for sickle patients admitted to the hospital or the emergency room
  • Low awareness of sickle cell disease among healthcare professionals, inadequate training, and insufficient investment in sickle cell care
  • Frequent reports of negative attitudes toward sickle cell patients, with the weight of the evidence suggesting these attitudes are underpinned by racism

Colleagues have told me they believe these findings show that progress is being made. Understandably, people are happy because they believe the inquiry means improvement in sickle cell patient care is on the way. But I know better.

Do I sound pessimistic? Why would this sickle cell patient be so quick to downplay the report’s findings? I have a few reasons.

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I Want to Get Better at Predicting a Sickle Cell Crisis

The inquiry didn’t find anything new. Sickle cell patients have been chronicling these complaints for years, to no avail. I’m supposed to believe change will come now that some government officials have finally agreed that I am right? Why did it have to take a patient dying for that to happen?

This isn’t the first time sickle cell disease has been discussed at the national level here in the U.K. In 2012, the National Institute for Health and Care Excellence published its clinical guidance on managing sickle cell crises, and recommended that sickle cell patients in crisis be offered a painkiller within the first 30 minutes of presenting at the hospital. The guidance also recommended that sickle cell patients’ pain treatment should be reviewed every 30 minutes. But this is not my lived experience, and it has not been the experience of other sickle cell patients I’ve talked to.

What good is publishing guidance that would make a significant difference in patients’ lives, if the recommendations are largely ignored? I want to see an inquiry that results in actual action. Sickle cell patients won’t receive adequate care until those on the front lines are better informed about this condition. And I don’t just mean the doctors.

When I experience a crisis, I must jump over several hurdles before I even get to see a doctor. First, I must call an ambulance. This means the responder who takes my call needs to understand what sickle cell disease is, and how critical a crisis is, so that they can prioritize an ambulance for me.

Then the paramedics who respond need to understand sickle cell so that they’ll give me adequate pain relief if they have it. (If they don’t, we should really be questioning why an ambulance with no opioids was dispatched in the first place!)

Once I’m in the emergency room, a nurse will need to take my vitals before a doctor reviews me to prescribe the right painkiller. So, it’s important the nurse understands how critical a sickle cell crisis is so that this task is prioritized. Once the doctor prescribes a painkiller, they will leave, and I likely won’t see them again for hours. Therefore, it’s important that the staff know what to do to help me combat a sickle cell crisis quickly and effectively.

I believe a complete cultural shift in healthcare is required, and until that is achieved, I really don’t believe things will change for sickle cell patients. All healthcare professionals should be taught what sickle cell disease is, how it presents in patients, and the impact is has on them. I think there is an argument to be made for continuing education, depending on the position the medical professional holds. One lecture in medical school is likely insufficient for a practitioner who left medical school decades ago, for example.

I’ll be waiting to see what real action comes out of this report. I’d like to be able to follow up on this and write that improvements have been made and that my pessimism was unwarranted. But I don’t think that will happen.

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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

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