“…no excuse for poor NHS care”: looking at systemic problems

A related pair of links. I can’t help but feel like I’m sounding like a broken record lately, but too much of my life lately has been revolving around dealing with the aftermath of this kind of stuff.

* Ignorance about sickle cell disease is no excuse for poor NHS care

“Sarah Mulenga’s death from a sickle cell crisis was a needless tragedy. Emergency staff must treat sufferers with respect”

This week an inquest into the death of Sarah Mulenga 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’s sickle-cell crisis 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…

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.

“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.

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.

I hadn’t even had reason to think about it before, but I’m not at all surprised that it’s a much rarer problem in the UK, even with a decent amount of relatively recent immigration from the Caribbean and assorted African countries. As someone pointed out in comments there, with the major concentration of Black immigration being in and around London, they have even less excuse for treating people here badly out of ignorance.

Even coming from a part of Virginia with a much lower percentage of Black people in the population than in the regions which used to have slavery-based economies, there seems to be much more awareness that sickle cell is a thing. I know a couple of people back home who have it–and probably more who just haven’t had reason to mention it. I wouldn’t be surprised if people in crisis often still get lousy care, but they’re less likely to act like you can’t even possibly know what you’re talking about, and must be just making up a disorder, when you’re having a crisis. And the people in the ER have probably seen it before, multiple times, even if they then decide anyway that you’re some kind of drug-seeking fraud.

I don’t have any personal experience with sickle cell, but it sounds like flat-out torture, either way.

It’s appalling, and I am sure that racism plays a big part there, especially in its continuing to be viewed as some exotic condition that’s so vanishingly rare you don’t even need to learn anything about it. Though, I honestly have no reasonable expectation of any better quality of care for something like that. The lack of respect is the big thing, in general, and the differential respect based on racism and other xenophobia ain’t going to help.

Which leads us to this one, with commentary previously shared on Tumblr. I also expect that xenophobia is part of the problem here, too, with the amount of anti-Eastern European immigrant sentiment going. I think I’ve gotten some different treatment at times, even being an apparently middle-class, usually light-skinned native speaker of a colonial version of English (and thus about as “acceptable” as immigrants get). There’s also the “pushy American” stereotype to deal with, when I’ve really had more problems with being assertive for self-protection. But, all of that’s a complication on top of the main problems with the system.

NHS: POLES, PARACETAMOL AND THE MYTH OF HEALTH TOURISM ›

The language barrier is usually raised first, when people are asked why they’d go private, but I think that’s out of politeness. Certainly Alicja, 25, who paid £60 to see a dermatologist in Tooting for her eczema, sounded less than plausible when she explained: “I wasn’t sure that I would be able to understand a GP. Medical language can be quite specific.” (her English was perfect).

The dermatologist elaborated: “I wouldn’t want to make a generalisation, but where language isn’t a problem, there is sometimes disappointment. GPs don’t refer people to specialists. There must be a reason for that, and I guess it’s economical.”

Piotr Miklewski, a 29-year-old practice manager from PMC in Ealing, said: “There is this stereotype that the UK prescribes paracetamol for everything.”

Wiki, 29, who broke her rib ice-skating, said: “And they don’t x-ray you. In Poland, you would always be x-rayed for a broken rib in case it was endangering your lung”. She added, “The doctor told me to take a paracetamol”…

Personally speaking, I would never knock the NHS for its paracetamol name, the reputation it has for never referring anybody, never prescribing antibiotics, never scanning anyone and trying not to waste x-rays. It makes us sound thrifty and stoic.

But if we think people are travelling here to make the most of our health service, we’re dreaming.

This is the kind of thing I’m talking about, when I talk about managed care on steroids.

Yes, I’m another foreign ingrate daring to criticise the way the system works. Theoretical universal access to health care is an excellent thing, and everybody should have that; that definitely doesn’t mean there’s no room for improving how the system actually works on the ground. [I also forgot to add that I was, indeed, very glad to have ready free access to health care as soon as I entered the UK on a fiancée visa. That doesn’t mean this motivated me to come, even from a country that’s renowned for spotty, extremely unequal access to the most expensive healthcare in the world.]

I can personally back up the hesitation to refer or order diagnostic testing, to the point that it reminded me of being uninsured in the US, when suddenly you don’t need all the expensive tests. (There is some happy medium there.) I didn’t get sent for any nutrient status testing or bone scans, or referred to a gastroenterologist—as is standard practice elsewhere—after the celiac not-quite-diagnosis. He also didn’t send me for all the usual tests to diagnose that. Nobody even suggested supplements. Some complications, like fractures and hypocalcemia seizures and lots of misery from severe deficiencies, may have been avoidable if that had happened. That particularly lazy, pennywise GP fouled it up in the records so that I also can’t get low-cost gluten-free food on prescription, which I didn’t think was an accident at the time. And still don’t. That one also wouldn’t refer me to a dermatologist over something I was concerned might be skin cancer. (Good thing it seems not to have been.) The next one left me on the cheapest first-line drug for type 2 diabetes, even though I had constant diarrhea and other nasty side effects for almost a year (until I just went off it myself, and stopped going there), and that malabsorption really crashed my health on top of the celiac.

Our local hospital is bottom of the barrel, with very poor CQC ratings and abysmal patient satisfaction ratings, especially for the A&E/ER department. They’re actually being sued by a bunch of people for human rights violations now. I can believe all of that. The only trip I’ve made there for a knee injury that had me throwing up from pain, my partner and I had to repeatedly insist that they x-ray it (yes, my kneecap was indeed cracked)—then sat for a couple more hours, with the dry heaves over a no doubt germy trash can my partner had to grab for me to barf into, before they came back and sent me away. With no pain relief at any point (on Christmas Eve, so I couldn’t even buy the paracetamol/Tylenol) and my ankle wrapped up. It was a good thing I already had a cane, because nobody gave me any crutches or anything, with a cracked kneecap and that leg giving out with much weight on it. I was happy to get out of the place by then, anyway. I couldn’t make this shit up if I tried. The total farcical absurdity is rather funny in retrospect—almost the comic epitome of bad ER care—but not at all at the time. And that was with someone else there advocating for me.

[And I could go on with the personal examples, but chose not to bore people unnecessarily.]

But, the thing is, similar experiences have turned stereotypical among people who aren’t as used to that kind of thing, when pretty much every hospital in England is rated better than ours. Some systemic problems there, yeah. And it’s a decent bit of the reason I’ve been having to avoid medical care. I just don’t trust them to place priority on my wellbeing over cost-cutting, even more with the austerity funding cuts [and galloping attempts at privatizing everything now going on].

If I weren’t really concerned about language issues (when communication is already hard when I’m sick or in pain), I’d honestly be tempted to try a Polish clinic. [There are also Swedish dentists and probably medical clinics, with no concerns about language barriers there beyond the disability-related ones. I actually had to get tickled at a couple of ads for dentists in some Swedish Chamber of Commerce publication Mr. U was getting, with not so subtle “looking for the quality of care you expect?” messages.] I’ve seriously considered trying to find a private GP, anyway; good thing we can just about afford it, even though AFAICT that would also mean paying for prescriptions which are technically free under the NHS because diabetes.
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When I was uninsured or on Medicaid, I was previously used to getting treated with more respect than has been usual under the NHS. (Never mind when I had good insurance coverage through both parents.) And I still had some pretty bad experiences in the US system. Part of the problem, IME, is that under the HMO-on-steroids setup, there is much less incentive to treat people with respect. Where else are they going to go, if you treat them like crap? People also seem more used to putting up with those good old “paternalistic or prescriptive behavior patterns”# which particularly rub me the wrong way. Those too often include acting like you can’t possibly know anything about your own body, as illustrated by the sickle cell bullshit.

I try not to criticise the system too much in front of British people, because that does come across as rude and ungrateful. (Similar goes for the weather. 😉 )  I even hesitate to write about it much, not wanting to come across like some kind of jerk. But, I do get tired of hearing all the “Thank goodness for the NHS!”, even in cases where the treatment would not be covered. (Yes, I did have to comment on that one.) I imagine that some of them will be in for surprises when they need treatment for anything more complicated than a sore throat.

In some cases, it seems to be a weird chauvinistic symbol; look at the bizarre Olympic opening ceremony dance thing. I can’t help but think that some of the points in Fred Clark’s Theodicy and foreign policy: The U.S. is not omnipotent, also apply here, with the “ultimate goodness” and the whole house of cards falling down if you admit that any part of what they’re doing sucks.

I don’t hear the rah-rah stuff so much from people who do regularly need to deal with the system as it exists. That’s a big difference with the rah-rah approach: I will readily admit that the way the system in the US works for the vast majority of people is totally busted, and the people resisting real reforms to make it more accessible and generally less crappy should be ashamed of themselves for aiding and abetting the harm being done by a busted system. Which is unlikely to happen, yeah.  Real reform, or their being ashamed, for that matter. 😦

I’m pretty sure that there isn’t a health care system anywhere in the world that couldn’t stand some kind of improvement.

The NHS is a very good idea in theory, but in practice things just don’t always work out so well. And too many people don’t even want to look at how the system could be improved–which is far from a unique situation, and maybe more frustrating because of that.