Sickle Cell

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I’ve had some good comments from the Morphine post, it’s very interesting to hear about the different dosages and protocols that various ambulance organisations use.

This post is one that I’ve been thinking about writing for at least a year, but I’ve always been a bit shy of writing it because it touches on possible racism.  Just remember, I hate everyone, not just one type of person.

Sickle Cell disease is a horrible illness, it results in massive pain, and due to the blood cells ‘clumping’ it can cause stroke, blindness, kidney failure, heart attacks and numerous other complications.  The pain these patients feel is unbelievable.

The thing is, most of these patients are black.

Here is the problem that I have.  There are a number of sufferers who are banned from certain emergency departments, there have been legal orders that say a patient should not got to a specific A&E when they get a crisis.  It’s normally because the patient has caused trouble while waiting to be treated, I was an A&E nurse in North London for long enough to realise that some Sickle Cell Disease patients aren’t saints, but…

In my personal experience, Sickle Cell Disease patients are the only patients who get banned from departments.  Drunks can be much more violent, yet they never seem to get banned.  ‘Frequent flyers’, patients who attend every day, use up more time and resources than those with Sickle Cell Disease, yet they never seem to get banned.  I’ve also personally witnessed nurses being hit, yet the patient still receives treatment, and isn’t banned.

Why I understand that Sickle Cell Disease patients can be demanding, they are in a huge amount of pain.  Some of them are indeed opioid addicts, but my thought on the matter is that it isn’t hurting me to give them painkillers, and that the stresses of withdrawal can cause a sickling crisis.  But it does seem that Sickle Cell Patients are being discriminated against.

This affects the ambulance service in the following way – we might pick up a patient 200 yards from the local hospital, he has chest pain, and is in a lot of general all-over pain.  If he is banned from that local hospital, we might have to travel miles to get him to a hospital that will accept him.  If he has a heart attack or stroke on the back of the ambulance, is it our fault for bypassing a nearby hospital?

These patients often have a ‘treatment protocol’ at their hospital – this states the type of pain relief that they get, and who should be contacted to continue their treatment.  These patients are often concerned that if they are not taken to their specialist centre (always miles away…) then the hospital that we do take them to won’t have their treatment protocol.

Also, will we be called more because we are now carrying morphine, and will maybe give it to patients, when their personalised treatment protocol states that they shouldn’t have morphine at all?

 In my opinion, Sickle Cell Disease patients are treated poorly in A&E departments, and I don’t think that it can be just that they are ‘demanding’ for their pain relief, or that they are personally ‘annoying’.  While a lot of these patients can be annoying, I think it’s only because they are treated poorly to start with.

Disclaimer: I used to work in an A&E department with a huge patient population of Sickle Cell Disease patients.

And don’t forget, it’s World Aids Day today.

15 thoughts on “Sickle Cell”

  1. A fascinating read and valuable insight. Sounds like managers need to do some statistical analysis to quantify and compare exclusions. If this analysis backs up your personal experience, then quite clearly something needs to be done about it.Keep up the good work.

  2. *adds “Sickle Cell Disease” to the “I'm Glad I Don't Have…” list*It's a long list. I'm bloody lucky when you think about it.

  3. This is sad really, considering the patient is the one that gets the wrong end of the stick.Is this disease hard to manage, as people seem to suffer crises at unpredictable times.

    I don't know anyone who suffers from it, so can't really relate on a personal level.

    The Driving Instructor

  4. I don't know how much more you need in the way of stats when people who cause more trouble (for less good reason), ie drunks and frequent fliers, are less often banned than sickle cell patients. I think emergency departments have a right to ban abusive jerks, but the discrepancy in jerk-banning tells you everything you need to know.It reminds me of a conference on the biological roots of violence that raised a storm. People objected to the sessions exploring how much being black contributed to a predisposition toward violence. I don't remember the numbers, but it was along the lines of “25% of violent crime is done by blacks, 75% by others” and blacks were about 12% of the population at the time. Meanwhile, totally ignored was the little statistic that 87% of violent crimes are committed by males, and closer to 95% when female violence that was a response to abuse was added to the male side of the ledger. (The organizers wound up pulling their stupid “gee why are blacks so violent” symposium.)

  5. Really awful transporting little kids with sickle cell, when as a US EMT-B you have nothing but oxygen for them. “Yep, you're like 8 and in crippling pain. Sit in this special truck. OK. That's all I've got for you. *pat on head.*”

  6. This is a very sad reality for many people of color. There was just a news story on how racism affects people in my town, and it was very depressing, as the perception of racism is mostly denial that it happens much, denial by both sides, I might add.The news team hired some actors, briefed them and rehearsed their stories (all the same story, same background, but different names), and sent them off to job interviews. One white man, one black man and one white ex-con.

    This town is very big on being “nice” but it is skin deep. I find that how I am treated depends on how I am dressed. If I am dressed up, like an upper middle class type of gal, I get treated with deference and respect, but if I am in my grunge wear, it is a different story. But for people of color (and that encompasses several different countries/races here) it is always a different story, it seems. Not much seems to have changed since the 50's, except for the political correctness of denial.

  7. Just a bit of an aside, but the reason most sickle cell patients are black is because the syndrome began as an evolutionary mutation in central africa. The mutation makes it impossible for the trypanosoma parasite, which causes malaria, to thrive. Thus, natural selection decided that maybe not getting malaria is worth putting up with some side effects, however severe. There is also a less severe type of sickle cell which only has minor side effects, but still provides the immunity.

  8. About you being racist Tom – you'd hardly start the post with 'I'm worried this might appear racist' if you really were. You'd start it with 'Serve you right for being black/yellow/purple/drunk/dead/green/in my way*'*delete as appropriate

  9. About you being racist Tom – you'd hardly start the post with 'I'm worried this might appear racist' if you really were. You'd start it with 'Serve you right for being black/yellow/purple/drunk/dead/green/in my way*'*delete as appropriate

  10. This also raises the isse of sharing medical information accross medical agencies. While there are huge data protection issues in centralising information and making it accessible to relevant people (I am way too paranoid to believe there is suh thing as a secure database) it could be of benefit to patients with complicated medical needs/history. Not everybody gets unwell within the range of their surgery/local hospital/ specialist, not every body has the capacity to list their condition and treatment.Also feeling a bit denser than usual today so wondering how it can be justified to ban a patient from a hospital on the basis of them being too much of a pain and then to lumber supposedly difficult patient onto the staff of another A+E department).

  11. In theory that is coming.. EHR (Electroic Health Records) will allow the sharing of electronic records between trusts.. but EPR (Electronic Patient Records) need to come in first!

  12. minor point re a comment above: trypsanosomes cause sleeping sickness or Chagas disease. Plasmodium species cause malaria. But the main point is correct. The sickle cell mutation causes the red blood cell to collapse much more quickly after the Plasmodium invades, so it may not have enough time to reproduce, and the person doesn't get as sick.

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