tag:dreamwidth.org,2009-01-31:26Livre d'OrNot sheepish, but individ-ewe-alLiv2020-03-19T18:06:51Ztag:dreamwidth.org,2009-01-31:26:570537Plague diary 19/032020-03-19T18:06:51Z2020-03-19T18:06:51Zsorepublic6<a name="cutid1"></a>Day 3 (Wednesday): successful social distancing, yay. I worked from home, I came into contact with no humans except <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span>. <br /><br />Work tried to establish ways to keep in touch, socially as well as for specific work concerns. We have just moved to a new system, Cisco Webex, for conference calls, and it's really not holding up to the volume of everybody suddenly moving to WFH. So we had a slightly hilarious team coffee chat, when half the participants had no audio and we ended up playing charades. <br /><br />Mood-wise, I felt slightly manic all day. Every time I had to communicate with someone at work I used way too many words, and I got plenty done but everything felt like it was in a massive rush and slightly out of control. <br /><br />I also successfully persuaded my mother, and my Stoke community, not to hold big Passover seders with crowds of vulnerable people travelling from all over to gather in a small room and share meals. It is going to be really awful to miss a big seder with my family of origin for the first time in my 41 years of life. But better than infecting my over-70 parents or my paralysed brother. And the Stoke community are breaking a streak of even more decades, and they grumped that I (along with the Chief Rabbi of their movement, the United Synagogue) am overreacting, but they're not risking the health of their various elderly and frail members, so that's good.<br /><br />Today I mostly worked from home, but I had to go out for, of all things, dental surgery. I'd assumed it just wouldn't happen in the middle of a pandemic, but a tooth extraction is sufficiently urgent that it went ahead. The poor receptionist was absolutely frantically sanitizing every surface continuously. <br /><br />I had never had a tooth taken out before today. Really rubbish first, I must say! The dentist was super lovely, kind without being patronizing, but I found myself very close to panic. The actual operation lasted only a couple of minutes and the local anaesthetic was the (not very bad) worst part of it, but anyway. I decided to walk home in order to calm myself down, though <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> did offer me a lift. Then I met up with <span style='white-space: nowrap;'><a href='https://ghoti-mhic-uait.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://ghoti-mhic-uait.dreamwidth.org/'><b>ghoti_mhic_uait</b></a></span> and we went for another walk together, which did a lot for my general mood and happiness. <br /><br />Town was quieter than usual, but not completely dead; there were enough walkers, cyclists and joggers out and about that it wasn't entirely easy to maintain the prescribed 2 metre separation from everybody. Also businesses, including pubs and other social gathering spots, are still open (because the government are trying to make individual businesses rather than insurers or the state assume the risk of telling individuals not to go to bars, but not telling bars to actually close), and were quiet but had some customers. <br /><br />Personal status: If I had the beginning of a mild cold before, I now feel I have the end of a mild cold. Sore throat which I can't tell if it's an infection or a reaction to having my mouth poked about. <br />Social circle tally: One case, four with suspicious symptoms. All online acquaintances so far.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=570537" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:557105Accessing healthcare while fat and female2019-06-05T21:13:46Z2019-06-05T21:47:47Zrelievedpublic14If you don't want to read any further (and there's about to be a pile of content warnings), the important thing is I'm medically fine. But I've had more medical encounters in the last few months than would be ideal for a generally healthy person. <br /><br />Content notes: <ul><li>Medical experiences, obviously<br /><li>Ruling out cancer diagnosis<br /><li>Periods<br /><li>Pregnancy scare<br /><li>Intimate examination<br /><li>Clueless cis person trying to talk about reproductive and sexual health without being cissexist<br /><li>Medical professionals pushing weight loss (no numbers, and I am not myself promoting weight loss)<br /><li>Mild medical violation of consent<br /><li>Needles and blood<br /><li>Asthma mention, not much specific detail</li></li></li></li></li></li></li></li></li></li></ul><br /><br /><a name="cutid1"></a>First I had a routine sexual health test, just because it was time for that. The actual check was fine, but arranging it was more annoying than necessary. The local sexual health clinic has an absolutely dire website, which is a consequence of cutting funding for things that are considered not medically essential. It contains almost no useful information for self-education, just links to auto-translated pages from a German sexual health service. It is possible, but massively fiddly, to use the website to book appointments and such, but most of the time it sends you round in circles and you kind of have to end up phoning people. <br /><br />It tries to direct you to a home-based test if you're not in a high-risk category, which is fair enough. But the home-based kit is really bad; they're asking you to get a ml of blood from a finger-prick, which basically doesn't work, and the instructions as written are really bad, involving setting up part of the collection system after you've already stabbed yourself with the needle. Not surprisingly, I was unable to get enough blood for them to complete the test. So I went to book an in person appointment. <br /><br />Booking was annoying. They couldn't cope at all with anything more than 'turn up for a standard panel of <abbr title="sexually transmitted infection">STI</abbr> tests'. I was content with that, but ideally I wanted to deal with having had the first half of a hepatitis B vaccine but not the booster dose that's supposed to happen a year later. More than a year had elapsed (which is my fault, not the sexual health clinic's), and also I'd moved area, which is why I hadn't managed to get the booster shot on schedule. I also wanted to replace my <abbr title="intrauterine device">IUD</abbr>, which was inserted 10 years ago, but the clinic were absolutely unwilling to consider replacing it before the exact tenth anniversary. I think probably the best solution to this problem is to lie about the dates, or else to procrastinate for long enough that it is actually a full ten years, not sure. <br /><br />So in the end I got my standard tests, which were straightforward and negative. And I convinced the clinic to at least measure my hepB titre, and they decided I'm fully immune and don't need a booster. They were a bit annoyed because their guidelines consider the risk that led me to get the vaccine in the first place was low enough that they wouldn't recommend a vaccine at all, whereas my previous sexual health clinic did advise me to get vaccinated. <br /><br />So that was the planned healthcare. Then I had a massively painful period, suddenly out of the blue. I got scared, and was in too much pain to do anything useful. In this case the health system dealt with it really well. I couldn't get a same day appointment and it didn't seem like an actual emergency, but I did get a telephone appointment with a GP. She took me seriously, and didn't, as I had feared, just assume that period pain is a normal thing that women have to put up with. (I don't expect medics are massively sympathetic towards period pain in men either, but it's definitely an aspect of sexism that women's pain isn't taken seriously.) But her first diagnosis was, maybe it's not a period, it could be implantation bleeding and a symptom of early pregnancy. So she sent me to the pharmacy to get cocodamol and a pregnancy test. She wasn't very convincing on the topic of whether it was in fact safe to take a codeine-based drug if I might be pregnant; I think she hadn't quite connected the two prescriptions, but she seemed to think it was ok. <br /><br />So I acquired those two things, and the pharmacist was generally not in favour of taking cocodamol if I might be pregnant *shrug*. From a combination of being in too much pain to think straight, and being a bit panicky by this point, I messed up taking the pregnancy test. (It was actually the first time I'd done so, because I long ago decided that with my level of tokophobia, taking a pregnancy test when I might happen to miss a period is going to be too miserable.) And again, not really thinking straight, I was embarrassed to go back to the pharmacy to ask for a second test kit, and instead asked to borrow from a partner who keeps a stash of them. Partner was massively, amazingly supportive; as a general rule, I would never consider telling a partner of a pregnancy scare before taking a test, but in this case I'm extremely glad I did. We had a useful conversation about what we would do if I did in fact get pregnant, which is worth renewing from time to time. I never really seriously believed that I was pregnant, because I pretty much trust my IUD. But I was still somewhat relieved to get a clear negative. I never ended up taking the cocodamol, because I was feeling too nauseous from the pain to be able to eat something with the medicine, and having received mixed messages I didn't want to take it if I was in fact pregnant, and by the time I'd got home, got hugs from partner, and taken the test I was feeling enough better that I was fine with my usual standby of ibuprofen. <br /><br />The phone GP recommended I should make a routine appointment to see a GP in person, if I wasn't pregnant and if the symptoms didn't recur. Routine appointments usually have a several week wait, so by the time I did see the GP I had been completely fine for a few weeks. The GP took a good history, didn't make any assumptions, and didn't criticize me for being a whiner or wasting NHS resources over nothing. She carried out a small physical exam, just feeling my tummy externally, and not surprisingly couldn't find anything untoward. She decided to refer me for an ultrasound as a precaution, though she and I agreed it was probably just a one-off random thing. As referrals from GP to hospital go, it couldn't have been smoother; the GP filled in a form, I got a letter saying I would be getting details of an appointment, and then I did in fact get an appointment. There was no untoward delay, even though we were pretty certain by now there was nothing seriously wrong.<br /><br />As it happened, I was due for a three-yearly routine cervical check (what used to be called a 'smear test') and ended up making the appointment for that the day before my hospital appointment. Being prodded with a speculum is never exactly pleasant, but the screen went as well as could be hoped for. The nurse and chaperone were extremely respectful and sensitive, and aware that lots of people have trauma around internal examinations, but also willing to take cues from me to be matter-of-fact about it. The actual procedure was easy and barely even uncomfortable, so kudos to the practitioners for handling that really well. I got a letter in the post fairly soon after saying, there was no HPV virus so they weren't going to bother looking at the cervical cells (this is part of why they're trying to move away from calling it a 'smear', as it's mostly based on looking for viral genetic material these days). <br /><br />I was a bit nervous about the ultrasound, because although the hospital letter said it shouldn't cause discomfort, some of my uterus-having friends reported that they found the procedure extremely unpleasant, much much worse than taking a cervical sample. In fact it was fine, not something I'd choose to do for fun, and it goes on a lot longer than a cervical test, but for me it wasn't awful at all. Turned up at hospital in good time, got called in slightly before my appointment, again the sonographer and colleague were extremely respectful, talked through everything before they did it, and constantly checked in to make sure I was ok, pausing if I so much as drew breath sharply, let alone winced. The one thing they didn't do was follow the #MyNameIs protocol, and the room was dark to allow the sonographer to see her screen, so I didn't quite work out who the senior colleague was, a nurse or a doctor or a more senior ultrasound technician. And I'm the sort of person who is interested to see scans of my internal organs. <br /><br />They found a big cyst on the edge of my ovary, and more smaller cysts than are supposed to be within the ovary. They didn't think it was likely to be anything serious; most likely it would resolve on its own, and the only reason they even knew about it was because the GP had referred for a scan as a precaution after my bad experience. They decided to send me for a blood test, and reassured me that it was nothing to worry about, just ruling things out, but didn't really explain what they were looking for in my blood. I pressed a bit, and they admitted that it was a <a href="https://about-cancer.cancerresearchuk.org/about-cancer/ovarian-cancer/getting-diagnosed/tests/blood-tests">CA-125 blood test</a>, and re-emphasised that I shouldn't worry. So obviously I went and looked it up, and it turns out that this is a not totally reliable, but still indicative, blood test for ovarian cancer. I'm quite impressed, because I don't think there was any blood marker for ovarian cancer even a few years ago.<br /><br />They clearly weren't worried, I could just make an appointment for a blood draw whenever convenient in the next few weeks. So I don't think I ever had any moment of seriously contemplating that I might have cancer. But anyway, I duly rocked up at the GP for my blood test and it was such an annoying experience. Usually older nurses are the best people to take blood, but this one was dreadful. She opened by nagging me about getting a general health check now that I'm over 40. I said I didn't want a health check because I'm not interested in being told to lose weight. At which point she argued over me saying that it's not about weight, it's measuring your BMI and waist circumference and suggesting that you make lifestyle changes to reduce your risk of a cardiovascular event. I mean, seriously, woman, I *just told you* that I'm not interested in discussing weight loss, don't respond by pushing weight loss using fancy medical terminology. Like telling me to change my lifestyle to reduce my BMI is somehow less bad than telling me to go on a diet because I'm too fat! I find this merely annoying, I don't know how people cope if they have an eating disorder history or are triggered by this sort of fat-phobia. And especially when I was in for a blood test to see if I have cancer; as it happened I hadn't been tearing my hair out worrying about a potential diagnosis, but she didn't know that, it seems absolutely the wrong time to start nagging me about how I'm too fat and I might have an early heart attack. <br /><br />Then she did the blood draw really badly. I half suspect it was deliberate, punishing me for being non-compliant over the weight stuff. She kept asking for "consent" after doing things to me; she couldn't find a vein so she slapped my arm quite hard, and then said, I slapped you to make the vein more visible, is that ok? Then she moved to my other arm by just pulling me about, and again asked afterwards if that had been ok, and jabbed the needle into me before saying, sharp scratch, was that ok? Plus she had long and visibly dirty fingernails, and grabbed the needle out in a way that left me with the worst bruising I've ever had from a blood draw. And that was just a few mL for a phlebotomy sample, not a full blood donation. <br /><br />So I'm grumpy about that, but not about the rest of the process. The sample was analysed straight away, and the GP called me the next day to tell me personally that it was negative, confirming what we all thought anyway, that I most probably don't have ovarian cancer. She's booked me in for a follow-up scan in a few months, and thinks most likely whatever is wrong with my ovaries will have resolved spontaneously, but she wants to check rather than assume. It is remotely possible that I have endometriosis or PCOS, but given that I've only ever had the one-off symptoms, I don't think that's very likely. I was impressed that both the medical person in the ultrasound, and the GP, mentioned those as possible diagnoses which can't readily be confirmed (or ruled out) by a scan. I've heard a lot of horror stories about the medical system taking forever to diagnose those sorts of conditions, and putting chronic pain and misery down to silly women making a fuss about nothing.<br /><br />This week I capped it all off by attending an appointment with an asthma nurse, mainly so I can renew my inhaler prescriptions. This nurse was generally helpful, and had a good attitude. It felt like a proper shared decision making consultation, and he was willing to enter into a brief scientific discussion about the relative risks of supplementing asthma medication with antihistamines. He trusted my knowledge of both my own 35 year history with asthma, and my understanding of medical matters. However, he asked to measure my weight and height to calculate a baseline for peak flow. If I'd been more on the ball I would have said, peak flow normal ranges are based on height only, you don't need my weight, but I think he wasn't trying to be sneaky, he just reflexly asked for height and weight. And then he was ~concerned~ because I've put on a fairly big number of kilos since last time I let anyone weigh me. <br /><br />Well, fair enough, changes in weight are a valid concern. And he backed off when I said I don't normally track my weight and I wasn't interested in discussing it. I had a suspicion that I might have gained some in the last couple of years, since my clothes that used to be snug no longer fit at all. I think the reason is changes in metabolism that happen to people over 40, especially people with oestrogen-dominated endocrine systems. And possibly that phenomenon where people get married and start eating better and gain weight as a result; since I've moved in with <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span>, we've been cooking proper meals from fresh ingredients multiple times a week, which is much healthier than my bachelor diet was, but I'm also eating a bigger absolute amount. <br /> <br />I'm not worried. My numbers are over a certain threshold sometimes used to distinguish between "really" fat and just a bit curvy. But I'm fairly sure I'm more at risk from medical professionals ripping up my veins because they disapprove of fat people, than from being heavier at 40 than I was at 30. And I will continue to repeat that I'm not interested in being nagged about my weight, and I will not fall into the trap of avoiding seeking medical care because I don't want to be nagged.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=557105" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:533761Not the weekend I hoped for2017-10-09T13:32:51Z2017-10-09T13:32:51ZGreen Day: Boulevard of broken dreamsrelievedpublic43<abbr title="too long, didn't read">TL;DR</abbr>: I had a medical problem, I got appropriate treatment, and I'm now safe and recovering.<br /><br /><a name="cutid1"></a> So I picked up a cold at the end of the week. I was feeling a bit grotty Friday evening, but still basically functional. And Saturday I was finding everything unreasonably tiring. I decided to sleep in rather than going to shul, and I agreed with <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> that instead of going out for a long walk in the country we would drive into town and have lunch in a restaurant. I was pretty wiped out by walking a few blocks from the car to the restaurant, so clearly hiking was not the right choice for our date. <br /><br />About 8 pm Saturday evening I found I couldn't really speak without having a coughing fit. I didn't think much of it; it happens that the tail end of a cold often turns into a cough. In retrospect I wasn't being very sensible; I kept saying, "I can't breathe, but not, you know, in a bad way". And I did a lot of panic-apologizing to <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> for coughing instead of answering his questions. I decided it was probably a sensible idea to take my inhaler, thinking, well, asthma inhalers don't really work for colds, but it's probably better than nothing. <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> went out for an evening walk, and waiting for him to return I found I didn't have the energy to do anything except sit on the sofa and play mindless mobile games. <br /><br />I had a bad night, but not, I thought, unusually bad for the tail end of a cold. I used my inhaler several more times; more than once in a night is unusual for me, and I started counting to make sure I wasn't taking it more frequently than four hour intervals. In the morning I woke up and called Sunday School to say I didn't think I was well enough to come in. I thought I was probably being a bit of a wimp; I had a mostly recovered cold, and I hadn't slept well, but I wasn't actually <em>ill</em>. On some not quite conscious level I realized that even if I didn't feel particularly "ill", I couldn't manage cycling three miles to the school, or standing up in front of a class and talking. <br /><br />The effect of my morning inhaler wore off alarmingly fast. By midday I was really struggling to breathe, and counting the minutes until I could take another dose. With the increased clarity that came with being able to get enough air, I thought, you know what, this may actually be bad. I had recently read <span style='white-space: nowrap;'><a href='http://twitter.com/tajasel'><img src='https://p.dreamwidth.org/e0caa790ec10/-/twitter.com/favicon.ico' alt='[twitter.com profile] ' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' width='16' height='16'/></a><a href='http://twitter.com/tajasel'><b>tajasel</b></a></span>'s <a href="https://medium.com/@thisiskatie/coming-to-terms-with-having-a-chronic-illness-50556be2abe">account of a much worse asthma attack than mine</a>, and I recognized the description far too well. Exactly like Katie, <q>my asthma was always the textbook definition of well-controlled</q>. But having that essay in mind reminded me that an "asthma attack" doesn't necessarily look Hollywood dramatic, it can just be chest tightness that goes on for more than a few hours and doesn't respond to inhalers. So I was looking up relevant websites, like the NHS patient advice and Asthma UK, and thinking, well, I sort of tick the boxes for an asthma attack, but it's a bit borderline. And I'm definitely experiencing quite severe discomfort in the three hours out of four between doses, but I didn't think I was in any danger of not getting enough oxygen to my brain and tissues. I was also aware that my self-monitoring was kind of shot by not being able to breathe properly, so I decided that on balance it might be a good idea to get a professional to reassure me that I was worrying about nothing.<br /><br />I called NHS 111 and went through all the triage questions to establish that I wasn't having a heart attack or a pulmonary embolism. I was finding it a considerable effort to understand and answer the questions coherently. Eventually the phone operator came to the same conclusion I had: it was borderline whether my problems counted as an emergency or not, so she'd get someone medically qualified to call me back. I waited five hours for the callback, time I spent mostly sitting on the sofa, propping my shoulders up, sometimes managing conversation but inconsistently so, conserving my energy for walking up the stairs to the toilet. <br /><br />The person who called me didn't introduce himself and I never worked out whether he was a doctor or a nurse. I was in a pretty bad way by this time, so I think the unsatisfactoriness of the consultation was not entirely his fault. But he spoke very quietly, didn't seem to be taking a history in a systematic way, and sounded basically annoyed that I was wasting his time. I had got to the point where I was ready to advocate for needing medical attention, rather than hoping to be reassured, so I headed off his leading questions which seemed aimed at trying to get me to admit it was just a cold. I used keywords like saying that this was the worst asthma I'd ever experienced, that my reliever medication was not working, that the pain was distracting me from everything else, that I couldn't carry out most activities of daily living. All those things were true, but I felt I needed to make a point of phrasing them exactly how they are written on the checklists. Eventually I convinced him to make me an appointment with urgent care for 10 pm, which he described as <q>I suppose I can make an appointment for someone to listen to your chest, then</q>. He did at least assure me that I could take 7-10 puffs of inhaler every two hours rather than 1 every four hours. The higher dose still only lasted about an hour, but being mostly able to breathe one hour out of every two was more pleasant than half an hour out of every four. <br /><br />Another five hours, alternating between being scared and in pain and miserable, and feeling guilty that I was the sort of person who turns up at Urgent Care on Sunday night just because I am feeling a bit low with a cold. At some point during this <span style='white-space: nowrap;'><a href='https://ghoti-mhic-uait.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://ghoti-mhic-uait.dreamwidth.org/'><b>ghoti_mhic_uait</b></a></span> turned up to take <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> out, and I was trying to reassure them that, yes, I have asthma, but it's never really caused me any serious problems, and yes, I have a hospital appointment, but only because the out of hours service in Cambridge is physically located in the hospital, it's not like I'm actually "going to hospital". Of course it's fine for them to have their date, I can easily get a taxi to the hospital. Actually they compromised, because I clearly wasn't thinking straight; they went out for a meal, but at our local pub rather than in town, and they came home early so <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> could drive me, and most importantly accompany me to the appointment. <br /><br />Urgent Care-inna-hospital was great. No waiting; I had an appointment for a fixed time, so I was seen at exactly that time. We had to walk past A&E which had a hand-written sign saying, we're exceptionally busy, minimum two hours wait. But Urgent Care you can only be referred into via NHS 111 or a GP, so they have reasonable control over how many people they see. The doctor was a complete sweetheart. He talked shop a bit about my research, apparently he'd done a PhD in cancer cell signalling before he decided to become a clinician. He had a really nice bedside manner; he wanted to make sure I understood everything but didn't overwhelm me with information or patronize me. He was fine with my saying, yes, I have a pretty good grasp of the pathobiology of asthma, and he was also fine with <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> asking if he could explain anyway. He did a pulse oximeter; I wasn't going to look at the numbers but he reported them anyway, I had 95% oxygen saturation (99% or higher is normal, less than 98% is bad) and a pulse of 130, about twice what it should be at rest. I said I wasn't really at rest because I'd tired myself out walking from the carpark to the clinic, but a normal healthy adult doesn't have a racing pulse or a need to sit down and rest after walking a few hundred metres. <br /><br />So doc said, you did absolutely right to come in, this is bad. He confirmed the outline of the history but agreed with my self-diagnosis that the cold had somehow triggered asthma, and he could treat that without needing a lot more detail. I had predecided that I wasn't going to quibble if he prescribed oral steroids, even though those are potentially scary drugs and I will have to declare them when applying for travel insurance in future. But I flinched slightly when he printed out a prescription for prednisolone, which as steroids go is among the scariest.<br /><br />And then we went to the midnight pharmacist to pick up the drugs, which is a bit of a miserable system. They have a glass dispensing window which opens out into the carpark, and it has a decent quality mic so you can speak to the pharmacist through the glass. Standing around in a carpark at 11 pm, discussing medical issues while struggling to breathe was not exactly pleasant. I assume they would have been able to let me into the shop if I were deaf or physically unable to stand in the carpark, but still. At this point it had been about 3 hours since I last took my inhaler, and the cold air wasn't helping, and I was tired and scared, and starting to get incoherent. The pharmacist said I should wait to take the first dose of prednisolone until the morning as it might stop me sleeping, but the doctor had told me to take it asap to control my breathing and I didn't think I could sleep when I was this uncomfortable anyway. I wasn't doing at all well at discussing this with him, so I'm particularly glad I had <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> with me. I kind of fell to pieces when he asked me if I wanted to get a pre-payment card since four prescriptions costs more than a three month card; the pharmacist was trying to be helpful but I couldn't handle even the simplest of financial decisions at that point. <br /><br />And then we went home and I took the scary steroid and it helped almost instantly. So far the worst side effect that I've noticed is very mild visual hallucinations; about half an hour after my dose I settled in to bed and it looked as if shadows were rushing around the bedroom, even though I know that the darkness in my bedroom is usually entirely steady. I confirmed with <span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> that the chasing shadows weren't real, and fell asleep. I had no trouble sleeping that I noticed; maybe I felt slightly less sleepy than normal but nothing I could be sure of. <br /><br />And today I'm off work, at least partly to reassure myself that the medicine isn't making me crazy, but mainly because I am absolutely exhausted after that weekend. <br /><br />This felt mostly like an example of the NHS working well. I mean, possibly if I had private healthcare I would have spent several hundred pounds (maybe more, I'm never sure of scale) but not had to spend 10 hours of misery before I got seen. But more likely I wouldn't have the option at all because asthma is a pre-existing condition. Worrying about financial and insurance consequences would have been much worse than worrying about whether I was wasting NHS resources and I think on balance I'd rather have the 10 hour wait. At least I got to spend that ten hours in my own home, rather than sitting in A&E triage. <br /><br />And I disapprove of NHS 111; basically they cut costs by switching from a service run by nurses to a service run by barely trained call centre operators, who can't do much more than run through a checklist as a fairly crude triage. This isn't a cost saving in the long term because it means more people end up in hospital who could have been helped over the phone by someone medically trained, but given the service had to make cuts, it's not a front-line clinical service so it's somewhat more acceptable to cut. In this case it did work pretty well; I was in fact not an emergency on a scale of minutes, and the phone line passed me on to a doctor who got me an appointment within hours, which was medically appropriate given resource constraints. The actual out of hours clinic was run by a subcontracted company, <a href="http://hucweb.co.uk/about-us/">Herts Urgent Care</a>. I have massive political problems with the NHS commissioning private services like that, but again, in this case it worked well; it kept me out of A&E, it meant I could be seen the same day rather than waiting until GP hours today, it got me efficient, good quality treatment. And probably the nice doctor who was doing the night shift gets better pay and conditions than he would if employed directly by the NHS.<br /><br />At this point, comments I would find helpful are: expressions of sympathy; discussions of healthcare policy. I would prefer if you could skip telling me your own stories about asthma and breathing troubles, and I don't really want to hear any experiences with prednisolone right now. I know that's not very socially appropriate of me when I've just told you a long story about my asthma experience, but I find other people's descriptions of asthma triggering and my breathing still isn't quite right. And prednisolone has an effing scary side effect profile, so I'm trying not to scare myself into believing I have any symptoms, so I would rather wait until after I've finished the course to compare experiences.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=533761" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:470381Pointer 2: Kittens!2015-05-08T16:56:18Z2015-05-08T16:58:23ZREM: Bang and blamescaredpublic21It's the day after the election. We're probably doomed. And <span style='white-space: nowrap;'><a href='http://ghoti.livejournal.com/profile'><img src='https://www.dreamwidth.org/img/external/lj-userinfo.gif' alt='[livejournal.com profile] ' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' width='17' height='17'/></a><a href='http://ghoti.livejournal.com/'><b>ghoti</b></a></span> has provided that well-known antidote to bad news: <a href="http://ghoti.livejournal.com/727839.html">KITTENS!</a> So I recommend you should all go and look at teeeeeny new-born kittens until you feel enough better to figure out what to do next.<br /><br />I am not refraining from posting about the election because I have awesome self-control, but rather because I have no time. And I want to come at least close to the <span style='white-space: nowrap;'><a href='https://three-weeks-for-dw.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/community.png' alt='[community profile] ' width='16' height='16' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://three-weeks-for-dw.dreamwidth.org/'><b>three_weeks_for_dw</b></a></span> challenge I've set myself. Hence, kittens.<br /><br /><a name="cutid1"></a>Last night the NHS's rather robotic triage system sent me to Urgent Care. I think an appointment at quarter to midnight at Urgent Care is better for both me and the NHS than hanging around in A&E, but it's still not very good, because I patently didn't need it and they weren't able to help with what is wrong with me.<br /><br />Basically, the doctor verified that I'm not in imminent danger of keeling over; I'm not having a heart attack even though a chest which is in pain ticks the chest pain boxes, I have absolutely no signs of asthma, and my circulation is delivering oxygen properly to my body. She was kind but made it clear she didn't really have time to help me deal with painful breathing that isn't in fact life-threatening. Her best attempt at a diagnosis was "maybe muscular?" but I'm fairly sure that was a wild stab in the dark. A friend said that in similar circumstances he'd been told it was probably inflamed membranes, which is my best guess too though I was trying so hard not to self-diagnose. <br /><br />We had a fairly sensible discussion about the risks of aspirin, and concluded I can probably get away with it. So I went home, took aspirin, did not trigger any asthma, and slept throught the night. Today I feel much the same, as yesterday, really unpleasantly sore but not actually ill. I will try to use this as a motivation to register with the GP like I've been meaning to, cos in my heart of hearts I knew all along this is more a GP sort of thing than an emergency thing.<br /><br />Many thanks to everybody who send supportive messages here, on Twitter or by text. I felt really cared for.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=470381" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:429709Biopsychosocial2014-03-13T19:18:22Z2014-03-13T19:18:22ZGreen Day: Wake me up when September endscontemplativepublic21I went to <a href="http://www.keele.ac.uk/pchs/staff/professors/carolynchew-graham/">Prof Chew-Graham</a>'s inaugural lecture this week, and it was really interesting so I want to write it up. Prof Chew-Graham is a professor of what's called "Primary Care Sciences", which basically means studying how GPs work. Inaugural lectures can be a bit odd, because they're public events and are meant to be pitched to a general audience, but they're a celebration of someone being made a professor so the subject matter usually has something to do with highly specialized and technical research. Anyway I found Prof Chew-Graham's talk really fascinating; just the list of stuff she's researched in her illustrious academic career brought up some really thinky issues.<br /><br />I'm not going to transcribe the whole talk; a lot of it was biographical. But I do want to talk about some of the themes that Prof Chew-Graham brought out, because they're really interesting and I think relevant to several of you. Basically she had some really interesting observations about the relationship between medical professionals, particularly GPs and practice nurses, and patients who have long-term medical problems that can't be explained or treated adequately, notably mood disorders and chronic pain conditions. <br /><br /><a name="cutid1"></a>Probably the best case scenario is that a doctor makes a correct, meaningful diagnosis which defines the root cause of a health problem, and then treats that problem, at the very least providing symptom relief even if the underlying thing is incurable. But sometimes that option is not on the table, sometimes because the doctor is incompetent or under-resourced or whatever, but more often because there's a whole swathe of stuff that isn't yet medically known. What's most helpful to patients in those situations? Prof Chew-Graham portrayed a spectrum between what she called "disposing" and what she called "holding". Disposing means that the doctor gives a definitive, medically respectable diagnosis (even if that is really a Latin translation of a description of the symptoms) and sends the patient away with the best available advice or prescription. Holding is where the doctor establishes an ongoing relationship with the patient, based on a detailed understanding of the patient's life and emotions and their own concept or story of their experiences. She wasn't claiming that one or the other is universally better, or that they're in a binary opposition, just that these are both elements of what the doctor might do if they can't cure you. <br /><br />Disposing is largely what we expect from doctors these days. Certainly if you have some symptoms where the underlying physiological cause isn't known or there isn't any single physical defect in the functioning of your body, there's a lot of value in having a diagnosis, an official imprimatur from the medical system which says, yes, this person is ill, they're not just lazy or attention-seeking. If there's evidence for lifestyle changes or medication or some other form of therapy helping some people with the same collection of symptoms then lots of people are going to want to know about that, even if it's a bit hit-and-miss whether that treatment is going to help that specific individual or even if what's wrong with them is really the same as the other people who get a similar label. But if disposing is the only aim, there's a danger of doctors getting frustrated with patients if the doctor can't come up with the answer to their problem, and these leads to a break-down of empathy and caring. <br /><br />Holding might well mean that the patient is taken seriously, that they're not pigeon-holed into the appropriate label and just sent away with something that may or may not help them. And if they're going to have ongoing pain or dysfunction in spite of the doctor's best efforts, at least having a supportive relationship and someone who has real empathy for how that affects their life could be a lot better than just being got rid of so the doctor can prioritize easier cases. Prof Chew-Graham gave the example of older people who have many of the symptoms of depression, but who typically see themselves people with sad things going on in their lives, not as sufferers from a medical condition called Depression. <br /><br />Prof Chew-Graham was very much looking at illness and disability from a biopsychosocial perspective, which is also the framework underlying the curriculum in the medical school. I was very aware that a lot of disability activists see <em>biopsychosocial</em> as a dirty word, and I have certainly seen it being abused to mean that illness and disability is all a matter of bad attitude and all you have to do is pull yourself together and you'll become a productive, taxpaying member of society. To me, the idea that people's actual experience is not only a direct consequence of their individual physiology is appealing. People's life circumstances and the society they live in and their emotional and mental state and the situation of their body are all interconnected and affect eachother. That doesn't mean that someone's suffering isn't "real", it means that there are many things outside their physical bodies which might contribute to that suffering and which ideally should be addressed rather than trying to find a pill to fix issues that don't purely originate in biochemical imbalance. <br /><br />Prof Chew-Graham gave some quite telling examples from transcriptions of consultations and interviews with doctors who tend towards disposal more than holding. A doctor gives his patient advice that it would be healthy to eat more fish, and the patient explains that he can't really afford very much fish, fish is too expensive. So the doctor changes the subject entirely and starts discussing the blood test results. The patient reported feeling shut down and not listened to; would it have been better to actually get into a discussion of his financial situation and how that was affecting his health, even though finances are much more about society and external things than his physiology? A woman comes to the practice nurse with problems with asthma, and tries to talk about her recent divorce and how she's struggling to cope as a single mother, but the nurse redirects the conversation to talking about respiratory symptoms. It seems highly likely to me that the stress of going through a divorce would affect asthma symptoms, which doesn't mean that the asthma is purely imaginary, it means that the woman probably needs support with managing stress and dealing with parenting as well as an inhaler. <br /><br />Equally, there are plenty of problems that can occur when a doctor assumes that everything is just a manifestation of a patient's distress and not an actual physiological issue which needs to be addressed. Prof Chew-Graham talked quite a bit about instances where people who have depression as well as another comorbid health condition are dismissed as "somatizing" and therefore the health condition goes untreated. She quoted a doctor characterizing depression as a socially acceptable reason not to have to work for a living. But that could be taken two ways; maybe some depressed people aren't "really" mentally ill but just don't want to work, or maybe depression is itself a manifestation of a social problem where lots of people can only subsist by spending five decades working at unsatisfying and miserable jobs. The fact that's a terrible waste of your life is not an acceptable reason to opt out of doing that, so you have to be either a wage-slave or ill. <br /><br />Some of Prof Chew-Graham's work has been on Chronic Fatigue Syndrome, which is really at the sharp end of this stuff. It seems like activists for this condition really really want it to have a purely biomedical cause, such as really latching on to some flawed research that suggested it might be caused by a retrovirus and campaigning against any criticisms of that research. Prof Chew-Graham's own studies have shown some benefit, though not enough to make it cost-effective, to the extremely controversial graded exercise therapy. I know several people who have CFS and I've read lots of writing about it online, and I can entirely sympathize with why people want disposing doctors. Because of the way society is, your life sucks quite a bit less if you have an official medical name for your condition, if you have a diagnosis of Chronic Fatigue and Immune Dysfunction Syndrome / Myalgic Encephalomyelitis. And maybe a hypothesis that it's caused by viruses or mitochondrial dysfunction or something technical sounding. That's partly because society is awful and ableist and doesn't accept that some people are ill and disabled without an obvious, single pathogenic cause. It could be partly psychological, or it could be a collection of symptoms which don't actually all have the same underlying cause, and would still be a perfectly real illness. <br /><br />Right now it isn't treatable at all; obviously that means that there should be more research, including molecular bioscience research, into its causes and possible treatments. But it also might mean that Prof Chew-Graham would advocate for a more holding sort of doctor attitude. Yes, doctors are gatekeepers and people who are given the label of CFIDS/ME and sent may get some degree of access to services that wouldn't be available if they just have chronic fatigue and other miscellaneous, unexplained symptoms. I don't know whether some people at least would benefit from doctors actually listening to them talking about their lives and their feelings and helping them to devise coping strategies over the long term, rather than just, ok, I've done my job, I've found out your diagnosis. Almost certainly people's symptoms (with CFS or anything else) are going to be affected by their life circumstances and emotional state, and the illness itself will affect their circumstances and mood as well. Is there a way for doctors to address biopsychosocial context usefully, without dismissing the illness as imaginary or all in someone's head? <br /><br />This stuff is complicated. It's very easy to be glib and say that doctors should be empathetic and holistic and "treat the person, not the symptoms". But it's not at all obvious how to do that, it may require quite sweeping changes in medical training and the culture of medical practice. Some of what Prof Chew-Graham works on is how to make that ideal actually happen in real life, the nitty-gritty of how doctors can listen to and empathize with and establish holding relationships with people who have long-term, currently incurable and / or unexplainable symptoms. And providing resources for people with such conditions to help them self-advocate and generally get more satisfactory responses from the doctors they interact with. But this happens within the context of a society that has some quite narrow and I think harmful ideas about what illness actually is, and because of that it may be actively bad for some people to have doctors take this kind of holistic or biopsychosocial stance, it may mean that their problems are not taken seriously because as a culture we don't really care about emotional problems or even about medical problems that have an emotional component.<br /><br />You could also put a case that GPs aren't the right people to be doing this "holding". Time pressures and case load and lack of training and cultural expectations of what a doctor should be doing might mean that they're just not well placed to help at all in cases where they can't help with a clear-cut diagnosis and a straightforward, evidence-based treatment. Maybe all GPs should be doing is referring people and directing resources on to professionals who are actually trained in holding. Religious professionals, support groups, and of course actual psychotherapists.<br /><br />I hope I've been respectful in bouncing ideas around sparked off by Prof Chew-Graham's lecture. I don't myself have any chronic illness, mental illness or disability, so this is speculation coming from a place of ignorance. I am very much open to be told that I'm talking offensive nonsense here.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=429709" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:414080Skeptics bat-signal2013-10-23T11:32:29Z2013-10-23T11:32:29ZInkubus Sukkubus: Heart of Lilithworriedpublic91Some friends of mine have a young baby who is just about approaching the age where the NHS starts its vaccination schedule. They've been reading anti-vax stuff on the internet and it's scaring them. <br /><br />I have told them that vaccination carries much less risk than the diseases it prevents, and that such risk as there is is about acute adverse reactions to the vaccine, not long-term vague "developmental / behavioural issues", which is a lot of what the scaremongers are talking about, I think partly because that kind of thing is difficult to comprehensively disprove. And most certainly not autism. I have linked to what I consider to be accessible lay information, and to technical research findings from impeccable scientific sources, backing up my view that vaccination is extremely safe. <br /><br />My friends are not completely convinced because they say that the pharmaceutical industry is motivated by profit rather than health. They are aware of stories of negative trial results being suppressed, of contaminated vaccines and of testing unsafe vaccines on vulnerable populations without proper consent. I can't deny that those things have happened and continue to happen. I've resorted to saying, look, the entire scientific and medical consensus is that vaccines are safe, nobody in the mainstream doubts that at this point. If you're going to doubt extensive peer-reviewed research evidence because Big Pharma and profit motives might have corrupted the hospitals and universities carrying out the research, why pick on vaccines? That line of argument means that no possible medical treatment whatsoever is safe. <br /><br />I know that a lot my skeptic-inclined friends make a hobby of marshalling arguments against the anti-vax conspiracy theorists. Here's your chance to actually put this into practice in real life. Can you help me save a tiny baby's life by reassuring its parents about their anxieties? <br /><br /><a name="cutid1"></a>These people are not stupid or ignorant or religious fundamentalists. They have emphasised several times that they are not in principle anti-vaccination and generally support science and evidence-based thinking. An argument based on mocking them for not being as knowledgeable about technical topics as you are is not going to go anywhere (and I am not going to pass on any such arguments). They are quite reasonably concerned about long-term health and psychological consequences for their firstborn child. They are not afraid of inflicting the physical pain of injections on their child, or at least, they are afraid, but they're willing to overcome that for the child's long-term good. They understand the principles of how vaccination works and accept that this method is a good protection against infectious diseases. <br /><br />They have a real problem which shouldn't be dismissed out of hand, which is that they don't have a way to evaluate all the safety evidence that exists in favour of vaccines. I mean, they can read scientific papers ok, as educated lay people, but they don't have the skills or the time (it's probably a Masters worth of work) to survey absolutely all the literature and come to an overall conclusion about safety. And yes, some of it is very small studies and some of it is paid for by the companies that are trying to market the vaccine. It's very hard to know, even for me working in this field, whether there are more damning studies out there which ended up never getting properly published because they would cut into drug companies' profits. <br /><br />They're particularly worried about that favourite of anti-vax conspiracy theorists, thiomersal / thimerosal, the mercury containing preservative which always gets blamed for nebulous bad consequences of vaccines when arguments about the actual antigens are thoroughly debunked. Some of the anti-vax sites have overwhelming lists of mainstream scientific papers with toxicity data about thiomersal. I mean, I can say that the fact that toxicity data exists doesn't mean that the compound is particularly high risk. I can say that this list of large-scale and long-term clinical studies saying the compound is safe outweighs this list of studies which mostly show things like, if you pump lots of thiomersal into cells or mice you get toxic effects. But I'm not sure that's going to be really convincing; arguing like that is almost buying into the paradigm that there's a balance of evidence on both sides and people have to make up their minds which evidence is most compelling. Whereas the reality is that there is overwhelming evidence that thiomersal is safe and no substantial or meaningful evidence that it causes any harm. <br /><br />I also don't want to over-state the case: sometimes children are in fact harmed by vaccines, and I don't think it's helpful to gloss over that or pretend it isn't true. Sometimes well-intentioned medical professionals prescribe treatments that are in fact dangerous, because they are unaware of dangerous side-effects for any number of reasons. That's most likely to be because the dangers haven't been discovered yet, or because the practitioners aren't properly aware of the latest evidence, but it could be because of corruption and suppression of unwanted data as well. I keep coming back to the idea that even taking into account all these issues, vaccines are far less dangerous than remaining unprotected against diseases. The problem with that argument is that this isn't really the right direct comparison; there's a good chance that herd immunity would protect an individual unvaccinated child, so even though not vaccinating is far worse on a population scale, a specific child is highly likely to get away with not being vaccinated.<br /><br />Help?<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=414080" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:411254Patient2013-09-25T10:25:57Z2013-09-25T10:25:57ZThe Beauty of Gemina: Kingdoms of canceramusedpublic46I think working in a medical school may have irrevocably messed up my interactions with doctors.<br /><br /><a name="cutid1"></a>I've had a minor cold more or less since I got back from spending several hours on a plane with lots of disease vectors and recirculating air. And although it's not making me feel particularly ill, it's also sitting on my chest and making me constantly on the verge of asthma. I haven't been able to start up my regime of running again; I tried once and was severely breathless by the end of the brisk walking warmup, and had full-on asthma symptoms after 5 minutes of very gentle running, so at that point I sensibly gave up, took my inhaler, struggled home (could barely manage the uphill part of the walk in that state), and endured an uncomfortable couple of hours. And I'm waiting until it stops being painful to take deep breaths before I try again.<br /><br />I decided that seeing a GP was probably the responsible thing, not because I really expected them to be able to do anything about a cold, but in case they had any sensible asthma-related advice, and because you're supposed to check if you have even minor symptoms for longer than a couple of weeks. The uber-fancy, newly renovated practice has signs all over the place saying that as of summer 2013 they're a teaching practice and they may ask permission for a medical student to observe your consultation or indeed lead it under the guidance of a qualified clinician. That would be <em>our</em> medical students, very likely people I taught during the more campus-based part of their course. <br /><br />Anyway, I wasn't asked if I would be willing to guinea-pig for a medical student; instead I had an appointment with a GP trainee (that is, someone who is qualified as a doctor but not yet qualified as a GP). And he asked me if he could video the consultation in order to have his consultation skills assessed and possibly provide training materials for the medical students. Knowing how hard it is to get enough footage of genuine (rather than staged) consultations, and how valuable that material is educationally, I was totally happy to say yes. I asked not to be videoed if we ended up removing my shirt in order to listen to my chest, because I don't mind generic hypothetical med students seeing me topless, but it could be awkward in the case of <em>my</em> students. This wasn't a problem; apparently even if I hadn't specified it's normal practice to switch off the video for any part of the process that involves disrobing. <br /><br />So I sign the consent form, and the doctor asks me to leave the room, knock and re-enter, so that he can demonstrate his ability to open a consultation according to the standard protocol, without the distracting discussion of the video camera. And he proceeds to take a history which ticks most of the boxes in the checklist of good consulting skills. Thing is, not only have I been the person ticking off which criteria were met, I know the Prof and most of the team who did the research leading to <a href="http://ijocs.org/issues/vol5iss2abs.aspx#8">devising the checklist</a>. I know what's on the checklist, and I am pretty familiar with the evidence for why it's in the format it is. <br /><br />One of the items on the checklist is explaining technical medical stuff. So this young trainee gives me a careful explanation of how colds are caused by viruses, and how the body responds to viruses by activating the inflammatory response, and how ongoing inflammation leads to bronchospasm, which is contraction of the muscles in the parts of your lungs which etc. Not wanting to mess up his precious training video, I nod and make encouraging noises, and refrain from pointing out that, one, I'm a cell biologist, I understand the inflammatory response well enough that I could have corrected minor errors in his account. And two, I have had asthma for more than 30 years (I would guess probably since before this guy was even born, though he could just about be my age), I have a pretty good idea what bronchospasm is.<br /><br />He stepped through a bunch of diagnostics that I'd pretty much already crudely run on myself, ruling out opportunistic bacterial infection and embolism, and graciously explained what he was ruling out and why his conclusions from the evidence were that, to nobody's surprise, I have a cold which is caused by a virus and I have to wait until it goes away on its own. I was in some ways quite proud that I had already thought of most of the likely scary interpretations for my symptoms and that I had already decided for myself that they were unlikely; apparently I've picked up more than I thought I had about how to do a respiratory history just from hanging around while other people learn about it! I mean, I don't trust my own judgement in this because even a qualified doctor shouldn't self-diagnose like that, which is why in fact I went to see this poor trainee in the first place. But yeah, he did pretty much what I would have predicted he was going to do. <br /><br />He didn't quite go as far as to say outright that he was giving me advice even though there's nothing useful I can actually do, because research shows that patients feel more satisfied if they go away with advice. But I could pretty much see him thinking it. The advice was to increase the dose of my preventer (*sigh*; I am unconvinced it will actually help given that this asthma is caused by an inflammatory response to the infection and not an allergic response, which uses a different pathway, but anyway, it won't hurt much either), and to eat lots of ginger, honey, lemon and echinacea. I must have failed to hide my skepticism, because he assured me that ginger genuinely does have anti-inflammatory properties and they have to tell patients on certain medications to avoid it in their diets. I went home and looked up the excellent <a href="http://www.informationisbeautiful.net/play/snake-oil-supplements/">meta-analysis of dietary supplements with claimed medical properties</a> infographic, which puts <a href="http://www.ncbi.nlm.nih.gov/pubmed/16437427">echinacea</a> in the promising category, though what the Cochrane review actually says is <blockquote>Echinacea preparations tested in clinical trials differ greatly. There is some evidence that preparations based on the aerial parts of Echinacea purpurea might be effective for the early treatment of colds in adults but results are not fully consistent.</blockquote> So, pretty equivocal, then. Interestingly the infographic lists ginger only as an anti-nausea treatment and doesn't mention anti-inflammatory effects at all. Maybe I should have challenged the doc for the evidence base of his recommendations, but I felt kind of sorry for the poor guy. And it would probably have made the video less useful for teaching, because it would have made me less like the typical patient I was pretending to be.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=411254" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:390536Cancer on Facebook2013-01-31T14:33:31Z2013-01-31T21:34:05ZJefferson Airplane: White rabbitquixoticpublic32I've got drawn into a couple of discussions about cancer marketing on Facebook recently. Facebook is utterly useless for having any kind of actual discussion, so I'm moving my long-winded thoughts to here. <br /><br /><a name="cutid1"></a>First, there's another of those breast cancer "awareness" memes doing the rounds. As far as I can tell, this is just another way to get people to pass on chain FB statuses, using cancer as the guilt lever. I hate those things. A few years ago a couple of teenage boys convinced female friends on FB to post pictures of their breasts on FB "for cancer", and their prank went viral and millions of people posted underwear pics. It probably did do some tiny amount of indirect good for awareness in that it did start conversations that might not otherwise have happened. But seriously, even on the slacktivism level, there are better ways to do something about breast cancer than providing some teenage boys with wank material. <br /><br />Then in subsequent years there have been several waves of women messaging all their female FB friends with instructions to post certain code-words in their FB status. The first few iterations it was something vaguely breast related (eg bra colours), and then it was something vaguely innuendo-ish, and by now it's morphed into mere cryptic codes where fruits represent the answers to tiresome questions. Because playing some game that's "girls only" and making all the "guys" scratch their heads is apparently going to "raise awareness" of breast cancer. I mean, look, people can play whatever memes they want if it seems fun and helps maintain their online social groups. But really this is nothing to do with cancer, this is a standard selfish meme which propagates purely because it has a propagation advantage, in this case provided by people's strong emotional feelings about cancer. <br /><br />Instead of continuing the chain, I posted a grumpy status to the effect that I'm perfectly well "aware" of breast cancer, given that several people close to me have been diagnosed with it in the past couple of years and given that a large part of my full-time job is doing research to find better treatments. This led to a few comments about breast cancer marketing and gender and the infamous pinkification, lots of intelligent people participating but FB threads just don't work for expressing complex ideas. <br /><br />The thing is, breast cancer awareness was actually a good idea a couple of decades ago. Breast cancer is <em>incredibly</em> common. Despite being vanishingly rare in men, way <a href="http://www.cancerresearchuk.org/cancer-info/cancerstats/incidence/commoncancers/#Twenty">more people get it</a> than any other cancer type. Breast cancer affects young (in cancer terms young means under 60) women a lot more frequently than other cancer types. And in the 80s, it was killing a lot of women needlessly, because of a combination of two problems. Firstly, there wasn't as much research into the disease as you'd expect when it's such a major killer, because medical research tends to assume people are male-by-default. Secondly, though, stigma and embarrassment about a disease that affects <em>breasts</em>, which are regarded as sexual, meant that women weren't getting diagnosed until it was too late. I don't want to give the impression that women back then were silly flighty little things who were too embarrassed to mention breasts in front of their doctors; no, the problem was that women who did get breast cancer kept it a secret from their peers, and there was almost no discussion of the disease in the media. So people really didn't know how common the disease is and therefore didn't seek treatment, while those who did get breast cancer were completely isolated and thought they were suffering alone. <br /><br />As far as I understand it, the breast cancer awareness campaign was kicked off by American feminists and largely modelled on patient lobbying by people with AIDS. So there are parallels: the twisted ribbon symbol, the dual pronged approach of political campaigning for more research money and public awareness raising to inform people about the disease and help to address the stigma. I would say the campaign has been pretty successful; breast cancer is extremely well known, and more likely than just about any other cancer type to be diagnosed early enough to be treatable. The evidence is equivocal for systematic screening programmes like regular breast self-exams or offering mammograms to all women in the vulnerable age-group, but I think nowadays few women die simply because they (or their doctors) don't know that major changes in breasts should be investigated. At the same time funding earmarked specifically for breast cancer research is now really good, to the point where people complain that it's disproportionate and other cancers, let alone other rarer diseases are being neglected in favour of breast cancer research. And breast cancer research has been largely a success story; we know quite a lot about the pathways that frequently go wrong in breast cancer and there rational, targeted drugs available to treat them. It also helps that breasts are accessible to surgery, and while a mastectomy can be extremely distressing, the long-term physical health consequences are much smaller than with the removal of most other body parts. This is probably another good consequence of the awareness campaigns: people who have had breasts removed no longer have as much need to go to huge lengths to hide the unusual shape of their torso. I wouldn't say that there's <em>no</em> stigma, because we live in a culture that's obsessed with a narrow idea of physically beautiful, "perfect" bodies, but from what I've read the stigma is much less than it used to be.<br /><br />That said, people do still die of breast cancer, particularly metastatic breast cancer. For reasons that are not yet entirely clear, breast cancer often follows a pattern where the primary tumour is completely removed, the person is disease-free for a long time (a decade is not untypical) and then the cancer returns in an aggressive form which tends to spread to the bones and spine, at which point it's rarely curable. This is why in my opinion you should continue giving money to charities which fund breast cancer research! But at least you don't have large numbers of women dying young purely because of sexism and stigma. <br /><br />The problem of course is that at some point breast cancer awareness turned into a business opportunity. With the groundwork of tackling the stigma done by activists, breast cancer became a "sexy" disease. That is, it primarily affects affluent women, including young women, which gives it much more immediate emotional appeal than diseases of poverty and old age. And it's all too easy for companies to indulge in what's become known as pink-washing where they market pink products and claim they're "supporting" breast cancer victims. Charities tend to get in on the act a bit, because a climate where people are willing to give money for anything at all dyed pink does to some extent funnel more money towards breast cancer charities with little effort. This is a problem partly because pink-washing companies range from the actively dishonest who are just selling pink shit with vague promises of "support", to companies making really minuscule donations to actual breast cancer charities, cheaply improving their corporate image and also attracting more customers who feel virtuous about contributing to a good cause through shopping. <br /><br />The other problem is that, well, breast cancer has become a brand. A brand which has many of the worst features of lowest common denominator advertising. It's all about young, thin, conventionally sexy women doing princess-femininity with lots and lots of pink and sparkles. This is kind of horrible for everybody who isn't sexy and ultra-feminine, and particularly for people who actually have breast cancer who aren't sexy and ultra-feminine! Like, ok, 20% of women who get breast cancer are under 60, but most of them are still too old to be what our culture considers sexy, never mind that that ignores the great majority of women with breast cancer who, like most other cancer sufferers, are elderly. And honestly, even most 20-year-olds aren't "sexy" according to marketing standards, and even if they are, cancer is just. not. sexy. Treatments for breast cancer may be effective but they are also seriously debilitating, and the sexy sexy branding is just adding insult to injury for people who are coping with the side-effects of chemo, radiotherapy and surgery as well as the fear of what is still a potentially fatal disease. <br /><br />Oh, and some people with breast cancer are male. Even if men account for only 1% of total breast cancer cases, because breast cancer is so extremely common, that's still a few hundred men diagnosed each year in the UK. And imagine how hard it is for those men, not only dealing with cancer but on top of that being dumped into the world of sparkly pink princesses! If there's an awareness problem, it's probably the lack of knowledge that men can get breast cancer in the first place. This is partly because people in general don't realize that men have breasts, fully functional breasts in fact, we just don't call them breasts, which is mainly just a quirk of language. The reason men are a hundred times less likely to get breast cancer is because (normal or cancerous) breast tissue growth is extremely dependent on steroid hormones, and most men have a very different balance of sex hormones from women. (As for trans men, I assume men who transition socially only have an equal risk as cis women, whereas trans men who use exogenous hormones may have a somewhat reduced risk compared to cis women but probably higher than cis men. But that's a guess, I don't know the prevalence of breast cancer in trans men.)<br /><br />Talking of men, some people very reasonably complain that prostate cancer is ridiculously under-funded compared to breast cancer. Prostate cancer is overwhelmingly likely to affect men rather than women, since cis women (that is at least 99.9% of women, possibly even higher than that depending how you count) don't have prostates. Prostate cancer is very nearly as common as breast cancer, but receives much less funding. That's certainly at least in part because it doesn't have a sexy awareness campaign; Movember most certainly doesn't have anything like the coverage that the relentless pink-for-breasts marketing does. It's also partly because prostate cancer is a much less tractable disease than breast cancer. For one thing it tends to affect old men, in fact <strike>mostly</strike> <strong>ETA</strong>: frequently, though not always, <em>extremely</em> old (defined as over 80) men are the ones who get the most aggressive form. Octogenarians are much less likely than under-50s to be in good enough general health to be able to handle extremely aggressive treatments, and also by the time someone reaches such an advanced age, they probably have all kinds of mutations, making it that much more likely they will develop resistant or highly malignant cancers. Also prostate cancer seems to be more diverse, it just hasn't proved possible to identify a few critical genes which determine either who will get the disease or which treatment to use. <br /><br />Some people in the FB discussion mentioned a preference for breast cancer awareness ads that show scars, huge quantities of chemo drugs, generally the grim reality of cancer treatment with no pink. I think there is definitely a place for some pushback against the pinkification, but there can also be a problem with that as a strategy. The thing is, part of the stigma of breast cancer was caused by the stigma against breasts, and now things have gone too far the other way in terms of making breast cancer seem "sexy" and (marketing idea of) feminine. But part of the stigma against breast cancer was and is caused by the stigma against <em>cancer</em>. Portraying cancer as the most terrible thing that can happen ever can also be a negative thing. Yes, cancer is a scary and frequently fatal disease. Yes, the treatments available for cancer are pretty horrible; I'm proud to be part of the teams of scientists working on treatments with fewer side-effects, but the reality is that for most cancer patients, chemotherapy and radiotherapy are more unpleasant than the symptoms they experience from the disease itself. But if cancer is the ultimate in terribleness, that first of all prevents people from seeking treatment because they're afraid of a diagnosis, and secondly makes people who are diagnosed more miserable even than they need to be. Their social group may avoid them, it becomes very hard to talk about (even in a culture of relatively raised awareness) because the subject is so fraught with Horror and Tragedy. Making cancer into a relatively normal everyday thing, albeit an extremely unpleasant normal thing is, I think, desirable. Though preferably without trying to make it sexy, which it really isn't!<br /><br /><a name="ginger">Anyway</a>, while I'm on the subject of cancer on Facebook, a friend posted a link to an article claiming that <q>Ginger Destroys Cancer More Effectively than Death-Linked Cancer Drugs</q>, and asked me to debunk it. The article in question is a really terrible article, and actually I felt I wasn't needed; my friend who tagged me, who has no specialist scientific education, could easily see that it was utter nonsense. Plus again I was stymied by trying to make carefully thought out points in the discussion under a FB link. <br /><br />To be honest, the article looked as if someone like, say, a bright homeschooled teenager had picked up a press release from a research department and written a report based on a very partial understanding of the article. For example, the writer has read "metastasize" as "metasize" which they interpret as <q>[tumours] come back bigger and more stronger than their original size</q>. Note that "metastasis" means that small pieces of the original tumour break off and form new tumours elsewhere in the body, not exactly a novel concept in cancer research. There is no such thing as "metasizing", the article has just made this up. <br /><br />They quote one Raghu Kalluri, who I think is <a href="http://bidmc.org/Research/Departments/Medicine/Divisions/MatrixBiology/KalluriLab.aspx">this guy</a>, as saying <q>Whatever manipulations we’re doing to tumors can inadvertently do something to increase the tumor numbers to become more metastatic, which is what kills patients at the end of the day</q>. I <a href="https://duckduckgo.com/">quacked</a> the phrase to see if I could identify the original press release being reported, and found a <em>whole</em> lot of articles with very very similar wording to the article linked on FB, mostly from dodgy SEO type sites where the text is there just to sell advertising. Anyway, for reference, this isn't the press release being quoted, but it refers to some of the same research: <a href="http://news.harvard.edu/gazette/story/2012/01/tumor-cells-can-prevent-tumor-spread/">Tumor cells can prevent tumor spread</a>; here's a <a href="http://gizmodo.com/5876919/how-cancer-drugs-make-cancer-worse-and-kill-patients">Gizmodo piece</a> which gives a somewhat better lay account of the actual implications of Kalluri's research, and even (wonder of wonders!) contains a link to the original publication, although sadly it's in the restricted-access journal <em>Cancer Cell</em>. Still a bit scare-mongering, but basically true: Kalluri's results don't refer to all anti-cancer drugs in general, just a particular treatment in particular circumstances may promote metastasis. This is still an important finding and a useful cautionary note about being over-excited about new generation cancer drugs; there can often be hidden, long-term risks that aren't found until the drug is in quite general clinical use. But it certainly doesn't justify "death-linked cancer drugs". <br /><br />The junky, SEO article is even more vague on the details of the study that's supposed to show that ginger "destroys" cancer cells than on Kalluri's findings. But I think the original press release is <a href="http://www.gsu.edu/news/53580.html">Researchers uncover anti-cancer properties of whole ginger extract</a> from 2011, including a link to the actual article. Again, closed-access and honestly in a fairly minor, though reputable, journal. So, ok, we have some actual peer reviewed research which is somewhat vaguely related to the absurd claims of the article. Cui bono? I don't know if the recirculated churnalism about the magical properties of ginger is designed to support quacks who want to sell whole ginger extract, or simply to attract page hits by making a shocking claim, or some combination. But anyway, it's spreading medical misinformation for the sake of a small financial gain, which is something I find morally abhorrent. <br /><br />That said, I have no reason to doubt the integrity of Ritu Aneja, the person who's been working on ginger as an anticancer agent. So given she did in fact do scientifically meaningful experiments showing that whole ginger extract shrinks tumours in animal models, why in fact shouldn't we stop giving patients horribly toxic chemotherapy drugs and instead give them lots of ginger? Well, mainly because there are literally thousands and thousands of compounds which shrink xenograft tumours in mice and have relatively mild toxic effects on the mice, but the overwhelming majority of them are not in fact safe, effective cancer drugs. Real cancers are considerably more complex than xenografts, which are quasi-artificial tumours implanted in mice for the purpose of testing anti-cancer compounds without making the mice suffer unnecessarily by giving them full-blown cancer. So basically you can use xenografts to rule out potential drugs; if they don't work in xenografts they're really unlikely to work in real cancer. But a positive result in mouse xenografts is simply an indication that it's worth continuing to investigate the compound. Meanwhile cancer is still a deadly disease; not treating it or delaying treatment with the best available proven cancer drugs greatly increases the chance that the person with cancer will die of it. <br /><br />However, the best available cancer drugs are by no means perfect. They don't work in all patients, and they do cause extremely unpleasant and not infrequently deadly side-effects. So in some sense it's not completely untrue to talk of <q>death-linked cancer drugs</q>. Look, for any given group of people with cancer, a proportion will die whatever treatments you use; some people might very reasonably prefer not to have to go through surgery and chemotherapy if they're just going to die anyway, but would rather make the most of the last few months or years of life available to them. A proportion will also get better pretty much whatever treatments you do or don't use, because some cancers just spontaneously get better via the body's natural defences or just good luck or perhaps they were never deadly in the first place. So you'll always get some anecdotes of people who eschewed all conventional treatments in favour of holistic or alternative or magical therapies, and lived many happy decades without experiencing the misery of a course (or several) of chemotherapy. The aim of actual scientific cancer research is to keep people alive who would otherwise have died of their disease or at least to postpone the inevitable; even if cancers do eventually become resistant and metastasize, there's some benefit in having a few months or years of good health you wouldn't have had otherwise. Does that justify the cost, financial and personal, of undergoing conventional cancer treatment? That's by no means an easy decision, either for individuals or for health services.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=390536" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:383857The Liverpool Care Pathway controversy2012-11-06T19:10:45Z2012-11-06T19:10:45ZHive: Sphairaangrypublic4Everybody already agrees that the Daily Mail is a terrible newspaper, and Melanie Phillips is a terrible journalist. However, her recent article about the Liverpool Care Pathway hits a new low of deeply, deeply irresponsible journalism with very real social effects. I'm not going to link to the article, but the title pretty much says it all: <q>No Care Pathway – killing people doctors deem worthless</q> <br /><br />As a result of this lazy, ignorant, misleading article, there has been considerable discussion of the issues of end-of-life care. I started discussing it on Twitter with <span style='white-space: nowrap;'><a href='http://twitter.com/nanayasleeps'><img src='https://p.dreamwidth.org/e0caa790ec10/-/twitter.com/favicon.ico' alt='[twitter.com profile] ' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' width='16' height='16'/></a><a href='http://twitter.com/nanayasleeps'><b>nanayasleeps</b></a></span>, and realized that what I wanted to say about it doesn't really fit on Twitter. <span style='white-space: nowrap;'><a href='http://twitter.com/nanayasleeps'><img src='https://p.dreamwidth.org/e0caa790ec10/-/twitter.com/favicon.ico' alt='[twitter.com profile] ' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' width='16' height='16'/></a><a href='http://twitter.com/nanayasleeps'><b>nanayasleeps</b></a></span> linked to <a href="http://blogs.telegraph.co.uk/news/tomchiversscience/100187400/liverpool-care-pathway-we-need-to-be-honest-about-how-much-a-human-life-is-really-worth/">Tom Chivers' response</a> to Phillips excrementally awful article, which is reasonable enough in itself, but people seem to be interpreting it as contributing to a debate about the decision to cease life-prolonging medical interventions. <em>That's not actually what the Liverpool Care Pathway is about.</em> <br /><br /><a name="cutid1"></a>First of all, Phillips is purely, factually wrong. The Liverpool Care Pathway is not and never has been about the decision to withdraw treatment. It's not about making the decision of who is "worth" saving. It is, and I quote from the official documentation: <q>used when the multi-disciplinary team has agreed that the patient is dying and all reversible causes for the current situation have been considered</q>. There is no decision involved about who should be treated and who should be kept comfortable and allowed to reach the end of their life. It's just a set of guidelines for what medical professionals should do after they have already made the decision to withdraw treatment. <br /><br />Now, some people may feel as a matter of principle that doctors should always try to prolong their patients' lives at any cost (whether financial cost or cost to the patient). That's fair enough, but there's no point getting angry with the Liverpool Care Pathway if you hold that view. Some people kind of object to the idea of having systematic Care Pathways at all, they believe that each individual doctor should make all decisions using their own personal judgement and experience, rather than following national guidelines. That's... certainly not the currently fashionable view in the English medical profession, but one can make a reasonable argument for it. But I would argue that it's not particularly worse to have guidelines for the treatment of imminently dying patients than for dealing with any other frequently occurring medical issue.<br /><br />If you want to know what the Liverpool Care Pathway is actually about, and what it instructs healthcare professionals to do, the Marie Curie Palliative Care Institute has <a href="http://www.mcpcil.org.uk/mcpcil/liverpool-care-pathway/">comprehensive documentation</a>. The great majority of it is publicly accessible; I suppose we couldn't expect a tabloid hack like Phillips to have done five minutes of research before writing her ignorant screed, but if you want to form an opinion about the LCP, you might as well be properly informed. Likewise, if you want to know how doctors are currently advised to make decisions about when a patient should be deemed to be dying, and when they should cease trying to extend someone's life, you can read the publicly available <a href="http://www.gmc-uk.org/static/documents/content/End_of_life.pdf" title="PDF document">guidelines from the General Medical Council</a>.<br /><br />Is the system as implemented by the NHS perfect? Of course not; apart from anything else there really is no broad consensus about what state of affairs the NHS should be aiming for. I know many of my friends are more pro-euthanasia / medically assisted dying than I am. Anyway, there is an important difference (not just philosophical hair-splitting) between empowering doctors to hasten or even directly effect someone's death, and empowering doctors to cease life-prolonging treatments. I think you have to be pretty extreme to argue that doctors should always try all possible treatments, however unlikely to succeed, though that is a position I can respect to an extent. <br /><br />One very fraught part of the discussion is whether nutrition and hydration count as "treatment" or as "palliative". I mean, certainly not feeding and hydrating someone is extremely likely to lead to them dying sooner, and it's a very distressing thing to think about you or someone you care about being allowed to die of thirst. On the other hand, for many dying patients feeding and hydration really are quite aggressive and unpleasant interventions, especially if they can't eat for themselves. At the moment I can't find any good publicly accessible discussions of this issue, but in any case the current guidelines, Liverpool and other, all state that decisions about assisted feeding have to be made on a case-by-case basis, there's no overarching rule about whether they're included in withdrawing treatment. <br /><br />It's a very understandable fear that this kind of decision is going to be made on a resource or financial or judgement of the patient's "worth" basis. There is no doubt that this goes on to some extent. Right now in the NHS as it is today, I personally am convinced that the driving force between determining that someone is dying is not about saving money on expensive treatments, it's about sparing patients from having to undergo painful procedures for the sake of a slim chance of giving them a few more hours of life. But don't just take my word for it, you need to judge for yourself whether you think that principle is being sufficiently honoured. However the fact that guidelines exist for how to make someone's final hours dignified and minimally distressing is really not the problem here. <br /><br />Politically, I'm seeing echoes of Sarah Palin's ignorant, manipulative "death panels" nonsense from a couple of years ago. I'm fairly sure that it's part of a wider attempt to discredit the NHS, frankly. I mean, if you really believe that a private health insurance policy would entail absolutely no expense or effort being spared to prolong your life for as long as possible, you're sadly naive. That's just not how health insurance works, especially since the last part of a person's life is the most expensive anyway, and since the very great majority of insurance customers are going to be under medical care when they die, so to implement that utopian reality, insurance companies would have to be committing themselves to spending almost unlimitedly large sums of money on very nearly everybody, which is just not how insurance risks work. I also think it would be a good idea to ask yourself whether completely unlimited invasive treatment is really what you want at the end of your life, but in any case that's not part of the political issue of how healthcare is funded.<br /><br />So there you go; no matter what your moral views are on this extremely delicate issue, it's got to be better to have the facts available rather than horrible, utterly misleading scaremongering.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=383857" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> commentstag:dreamwidth.org,2009-01-31:26:13322The quest to stay childfree2009-08-29T15:13:04Z2009-08-29T15:13:04ZTori Amos: Chinaanxiouspublic19So I saw a sexual health nurse this week. <a name="cutid1"></a>She was ever so friendly and communicative, and didn't patronize me, and took my opinions seriously. But on the down side, she wasn't very competent at performing the actual exam, she poked me about until I bled before she managed to take any samples. I think good bedside manner is more important to me, though. <br /><br />After some discussion she reckoned my best long-term contraceptive option is the plain copper coil, without hormones. Apparently that will give me ten years of protection with a failure rate that's too small to measure accurately. She echoed what I've been told before, that the NHS regard the coil as a better option than sterilization, cos it's more effective but still reversible, and doesn't require surgery. <br /><br />Well, more effective is a big plus, and I can totally see the point of avoiding unnecessary operations. But reversibility seems like a big downside to me. I have this strange paranoia about finding myself in a society which is either regressively sexist, or has low standards of medical care, such that I can't get a replacement coil when this one reaches the end of its lifetime. This is probably quite unlikely, but I may have 15 or even 20 years of fertility ahead of me and I can't bank on my situation being the same as it is now for that whole period. The other reason why I want to do something irreversible is that I've had a lot of relationships with people who thought that if I loved them enough I'd change my mind about not wanting kids. I want to be able to say to potential partners up front, not just that I'm childfree, which sounds like an opinion, but that I <em>can't</em> have children, which would be a physiological fact. <br /><br /><span style='white-space: nowrap;'><a href='https://jack.dreamwidth.org/profile'><img src='https://www.dreamwidth.org/img/silk/identity/user.png' alt='[personal profile] ' width='17' height='17' style='vertical-align: text-bottom; border: 0; padding-right: 1px;' /></a><a href='https://jack.dreamwidth.org/'><b>jack</b></a></span> expressed some of my mindset in terms of, I am afraid I might betray myself one day. I might get an attack of hormones or biological clock or something, and go through a brief period of unreason and thinking I want children after all. At least removing a coil requires making a medical appointment, so it would give me a few days to think over a hasty decision. But I'm more afraid of pressure from a partner. It's easy to tell myself that if someone tried to nag me (or worse) into having kids, I would totally dump them rather than give in, but realistically I know how hard it can be to end a relationship. Obviously I hope I wouldn't get involved with anyone abusive, but I'm no more immune to being bullied into following unreasonable demands than anyone else. <br /><br />On the medical side, my feeling is that the risk of surgery, while higher, is a one-off. If I don't get a bad reaction to the anaesthetic or pick up a iatrogenic infection, well, I can stop worrying about it forever after. Whereas the very unlikely risks associated with using a coil are ever-present. Now I know that hormone-free is an option, I'm less worried by that possibility, but still.<br /><br />So the question is, should I insist on sterilization even though I know it will mean a fight (and possibly paying for it to be done privately)? And even though I do take seriously the relative medical disadvantages of that option? It's the greater effectiveness of the coil that makes me lean towards accepting that option even though I would rather have something more permanent. I suppose a compromise is to agree to have a coil fitted, and if it goes wrong in some way, then ask for sterilization as a back-up plan. Or, well, revisit the issue in a few years' time and see if the medical consensus has changed, as well as me being older so less likely to be regarded as flighty and expected to change my mind about having kids any time.<br /><br /><img src="https://www.dreamwidth.org/tools/commentcount?user=liv&ditemid=13322" width="30" height="12" alt="comment count unavailable" style="vertical-align: middle;"/> comments