Health

Dispatches

~ Cheryl

The Daily Malice article that I mentioned on Monday did manage to finger one organization that does good work on behalf of trans people. That was GIRES (the Gender Identity Research and Education Society). It is a registered charity, and a quick browse of the website will show you just how valuable it is. The Malice thinks it is a waste of taxpayers’ money. But how much of a waste?

Well, just about everyone in the UK who can’t afford expensive accountants and offshore tax havens is a taxpayer. Even kids may pay some VAT out of their pocket money. But to give the Malice a fair chance I’m going assume that by “taxpayer” they mean individuals who pay things like income tax. (That accounts for some 55% of tax revenue.) There are currently around 29.9 million such people in the UK. That means that on average each UK taxpayer “wastes” 0.12 pence every year on GIRES. Outrageous, eh?

Meanwhile ITV has been getting in on the act. I’ve blogged before about 10-year-old Livvy James when she appeared on the BBC’s breakfast show. The BBC invited my pal Paris Lees from Trans Media Watch to be the resident expert that day. Not to be out done, ITV decided to ask Livvy on their show too. And for their resident “expert” on trans issues they invited Anne Atkins, someone so homophobic that even the Press Complaints Commission was moved to censure her. Atkins is also a leading figure behind True Freedom Trust, an organization that promotes “reparative therapy” (i.e. torturing people until they agree to behave they way that you want them to) for LGBT people.

As I said to someone on Twitter, at least Paddy Power only targeted adults. It takes a special kind of scum to bring in a notorious professional hate-monger to try to bully and humiliate a 10-year-old girl. Stay classy, ITV.

Finally, a bit of health news. As most of you probably know, the current medical thinking is that transition to the preferred gender is by far the best way to treat transsexuals. Post-transition, the only medical intervention they should need is regular supplies of hormones, and occasional blood tests to make sure the dosage is correct. There’s an issue here with testosterone because of the danger of mis-use by athletes, but oestrogen is regularly prescribed by GPs for contraception and HRT. Trans women ought to be able to get it easily.

What’s more, synthetic oestrogen is cheap. The NHS has a minimum prescription charge that most patients have to pay, and they make a profit on any oestrogen that they supply.

Yesterday Nottingham Primary Care Trust put all medication for trans people, pre- or post-op, on their “red list”, meaning that it can only be prescribed under the instructions of a qualified specialist. While many GPs do still refuse to treat trans people, this is a significant departure for an NHS management body, and it is probably illegal. It is also expensive, because now all trans people in the Nottingham area will have to go to a specialist gender clinic to get their regular prescriptions. It is, in fact, a dreadful waste of taxpayers’ money.

But, as we have seen, tabloid newspapers are not very good at sums. They can’t work out what is a waste of money and what isn’t. All they care about is whether or not people they hate are getting treated on the NHS. And all that Nottingham PCT appears to care about is not appearing in a newspaper article being accused of wasting taxpayers’ money by treating trans people. So they have passed the buck. Our newspapers, it seems, are able to set health policy regarding who gets treated and who does not. As a taxpayer, I do not like this idea.

Discrimination in Practice

~ Cheryl ~ 2 Comments

When we think about discrimination against minorities we tend to think of people like Rick Perry or Fred Phelps spouting nonsense on TV. That sort of thing doesn’t happen much in the UK. Outright bigotry is reserved for lunatic fringe political parties, Conservative members of the House of Lords, and of course the Daily Malice. Nevertheless, discrimination can still be widespread, it just takes place behind closed doors, or convenient excuses, so that people can pretend that it doesn’t happen.

What has prompted this post? Well, some of you may be aware that the Malice and similar publications often devote a lot of column inches to complaining about trans people getting treatment on the NHS. You may not be aware that they routinely inflate the cost of this treatment by an order of magnitude or so in order to generate more outrage, but given that they lie outrageously as a matter of course you have probably guessed.

This is, however, a real issue. Amidst all of the outpouring of support that the My Transsexual Summer TV series received, the one genuine sour note I detected on Twitter (as opposed to the deliberately offensive trolling) was that people didn’t want NHS money spent on trans people. It is a difficult argument to have, particularly with people whose relatives need life-saving operations and are seeing waiting lists get ever longer.

Of course there is another side to it as well. Many of my activist friends wanted Lewis to stand up to his local health authority and demand treatment, which legally he is entitled to do. If people don’t do that then the NHS will continue to get away with denying treatment to trans people. But fighting could have taken a very long time, and been emotionally draining, and I don’t blame anyone who doesn’t feel up to that battle.

However, the whole question as to whether you can go private or not is moot if no private practitioner is available. For surgery UK-based trans people routinely go overseas, but that’s a one-off process. Treatment for transsexuals requires lengthy psychiatric counseling, monitoring through a two-year “real life test” in which you have to prove that you are comfortable living in your preferred gender, and a lifetime of hormone treatment. These things are not easy to get access to.

To start with some health authorities have been caught operating blanket bans on any gender treatment, even though this is illegal. And if you can get a referral, waiting lists can be years long, not just months.

Think about that for a moment. You go to a doctor with a condition that is known to result in abnormally high rates of suicide, and you get told that you won’t be able to see a specialist for a year or more. What does that tell you about how much the NHS cares about you?

Even when you have successfully transitioned, you still need those hormone treatments. Many GPs refuse to supply the necessary prescriptions. Indeed, some refuse to take trans people as patients at all. On a personal note, almost all of the health services I have used since transitioning have had to be purchased privately because NHS staff were either unable or unwilling to supply them.

What is the medical establishment’s reaction to this? Are doctors grateful that private practitioners exist so that valuable NHS funds can be spent on other services instead? Not a bit of it. What they are actually doing is conducting a campaign to drive gender specialists out of private practice through the use of malpractice suits. There isn’t enough business in gender medicine to support a lot of private practice. The one person in the UK doing the job back when I transitioned has since been struck off the medical register. His successor has now been put on probation by the General Medical Council (GMC), and if things go as I expect an excuse will be found to bar him from treating gender patients soon as well.

Obviously there are serious issues in play here. Treatment of people with gender issues is a difficult process, and you can end up making matters worse by allowing patients to proceed with surgery when they are not suitable for it. Nevertheless, the standards for treatment are continually evolving and are by no means subject to general agreement. It is therefore fairly easy to generate a malpractice suit on the basis of differences in approach. The GMC isn’t giving out any details to justify their decision. The doctor in question isn’t allowed to discuss the case, beyond saying that the complaint against him was raised by NHS staff.

At best this is restraint of trade by an already massively over-subscribed service seeking to eliminate all possible competition. More likely it is professional jealousy — one supposed expert in a highly complex area of medicine insisting that he alone knows how to treat patients. It would not surprise me to find out that this was an attempt to shut down access to treatment for trans people unless they conform precisely to one aged, straight, white male’s view of gender normative behavior.

Of course the decision was announced in the run-up to the holidays, thereby ensuring that very little can be done about it for several weeks — another clue that the GMC knows that this is a politically motivated action rather than one taken in the best interests of patients. There’s no point in anyone trying to do anything right now. But I will most definitely come back to this in the New Year. It is quite annoying enough to have to pay for medical services that other British taxpayers receive free as a matter of course. The thought of being unable to access those services at all because the GMC will not allow anyone to provide them privately makes me very, very angry indeed.

Building Better Babies

~ Cheryl ~ 9 Comments

The new season of Horizon continues to provide lots of food for thought. This week’s episode, “The Nine Months That Made You”, looks at how the environment in the womb may affect the future lives of babies.

If you think about it, it is fairly obvious. We undergo far more “development” before we are born than afterwards. If we, as children and adults, are sensitive to diet and chemicals in the environment, how much more sensitive must we be as foetuses? It is certainly worth investigating.

The bulk of the program revolved around the idea that our susceptibility to things like heart disease and diabetes is a function of the quality of nutrition we get in the womb, as well as of diet and lifestyle after we are born. The statistical evidence presented seemed fairly convincing, and the doctors in India who worked on the project were convinced enough to launch a large-scale and long-term experiment in Mumbai to try to improve the health of the poor by improving the diet of young women.

This isn’t a simple process. It is not just a question of making sure that pregnant mothers get enough to eat. The levels of micro-nutrients such as vitamins are apparently crucial. Also it is a multi-generational project. Some of the factors involved may depend on whether certain genes are switched on in the mother’s eggs and, as women are born with a fully stocked ovaries, your ability to bear a healthy child may be in part dependent on the quality of diet your mother had when she was bearing you.

What interested me most, however, was when they went beyond health issues and started to look at personality. There was a nice experiment in which they showed that foetuses have clear personalities (something that most mothers know, but doctors need to prove), so the sort of person we become is not entirely down to our environment and upbringing.

Another experiment related the level of testosterone in the womb to the type of gendered behaviour shown by the resulting children. Girls exposed to higher levels of testosterone are apparently more likely to exhibit gendered behaviour that is generally associated with boys. I’m pretty sceptical of such experiments because they are often carried out by people with a poor understanding of gender, and with lots of cultural bias, but it does hold out the possibility of starting to understand the origins of transsexuality.

Talking of gender differences, I saw a report yesterday that purported to explain why women are much less fond of horror movies than men. Apparently women get much more stressed by the clues that something bad is about to happen. Again I am sceptical of such things. There may be a lot of cultural training and expectation involved here. All I can say is that I’m very female-typical here and always have been. My mum had to take me out of The Wizard of Oz when I first saw it because I found it too scary.

Of course I also view such things as a science fiction reader. If we can build better babies, how far will people take this? How much human variation do we want to “cure”? Whereas the treatments being given to poor women in Mumbai are cheap and simple, what procedures will be developed that only the rich can afford? Science, as always, is a double-edged sword.

State of the Shoulder

~ Cheryl ~ 3 Comments

I had an appointment with the physio yesterday and he’s very pleased with the improvement in movement that I have managed over the past week. Apparently I am doing everything right, and the good news (for my bank balance) is that I don’t need to see him again unless something goes wrong. I just continue on doing what I have been doing and eventually all will be well.

And I do have more movement. I am now able to do things such as clean my teeth and brush my hair with my right hand again. This is very good.

The bad news is that things are by no means right yet. Typing is still painful if I do it for any length of time. I can’t lift any weights with my right arm, or put any weight on it. I constantly have to remind myself of this. I have to do exercises about once an hour, and apply ice and heat treatment several times a day.

The worst part is probably that I can’t sleep through the night. After a few hours of immobility my shoulder gets sufficiently painful that it wakes me up. So I’m doing the ice/heat treatment in the middle of the night as well. This is making me very tired. But it is so much better than not being able to move the arm at all, which could easily have happened had I just followed the advice the NHS gave me.

Talking of which, last night at the Colin Harvey memorial I swapped notes with my friend Sam who injured an elbow falling off his bike a few weeks ago. He still can’t straighten the arm, and he too can’t get any physiotherapy from the NHS.

So, people, please take note. The NHS is great if you are seriously ill (and not someone whose lifestyle they may disapprove of), but for minor injuries, and particularly physiotherapy, if you can afford to see an expert, please do so. If you wait, the treatment will get very much more difficult and expensive.

Injury Update

~ Cheryl ~ 9 Comments

I have finally managed to get to see a physiotherapist and have a diagnosis.

It looks like the problem probably began with the tendon on my right bicep, but it has now turned into a full-fledged rotator cuff problem (well spotted, Farah) that I need to deal with (or my shoulder will seize up). I have treatment advice, and exercises to do. I have purchased a packet of frozen peas as medical equipment, and I’m now off into town to look for a wheat pack (which can usefully double as a bed warmer). Progress!

The good news is that I haven’t been warned off the computer, just told to keep to short stints and do treatment and exercises in between. This is a great relief.

The bad news is that once again I am having to pay for my medical treatment, because the NHS can’t/won’t provide it.

The Soccer Thing

~ Cheryl ~ 11 Comments

So, the FIFA World Cup is about to kick off. I don’t really have a dog in this fight. Wales, as usual, didn’t come anywhere near qualifying. Kevin, of course, will be supporting USA, which makes their first game a bit awkward. Thankfully I shall be on the train on the way back from Alt.Fiction when it takes place. Like my Welsh, Scottish and Irish friends, I’ll be hoping that the English lads don’t embarrass themselves. On the other hand, we are mostly hoping that they don’t win, because the English fans will be insufferable if they do. So I will mainly be hoping for some entertaining games. In particular I’m looking forward to watching Lionel Messi, Spain, and of course Brazil. I’m also hoping for some surprises. Also I will be getting into the South African mood by reading Moxyland [buy isbn=”9780857660046″].

Meanwhile, Tesco has been having a big sale on gym equipment, so I have bought a stepper. That way, if the TV is busy showing sport and unavailable to run the Wii, I can still get some exercise.

And finally, for a scarily accurate prediction as to how the tournament is likely to go for England, here’s Mitch Benn.

Drag Racing Takes Off

~ Cheryl ~ 1 Comment

The joke about drag racing being a sport for men in high heels is as old as those daft cars themselves, but actual races by drag queens appear to be getting more popular of late. Bristol Pride has one organized for June 26th as a fund raiser for the main event in August. Even the Evening Post has got behind it. Maybe people round here know how much I miss San Francisco.

A weekend earlier there will be a similar event in London. Stephen Fry tweeted about it today. This one has a rather more serious purpose. It is raising money for research into cures for prostate cancer. I guess the idea is to highlight the fact that prostate cancer is a disease that only men suffer from.

Personally I am very happy to see this happening. Two very dear friends of mine have been diagnosed with prostate cancer recently. Thankfully both of them caught it early enough to make it easily treatable. But catching it does rely on regular screening (or good luck).

There is, however, a darker side to people raising money for prostate cancer by dressing in drag, because prostate cancer is one of the major health risks for trans women. They might have had other bits of their anatomy removed, but they still have prostates and, as this American Cancer Society paper notes, their decreased testosterone levels may make them more vulnerable to the disease. This is complicated by the fact that health professionals may not know that trans women need to have such screening, and the women themselves may be afraid to ask to be screened for fear of being discriminated against. Trans people are routinely treated abominably by the NHS. I hope someone points this out to the Great Drag Race people, and that some of the money raised is put towards a bit of education.

That Darn Crab

~ Cheryl ~ 4 Comments

One of the signs of getting old has to be that way too many of the people you know are fighting against cancer. Some, like Jay Lake, do this very publicly. Others prefer do it much more privately. The latest issue of Ansible brings news of something I wasn’t sure I could talk about it public, but obviously now can.

It is no secret that Diana Wynne Jones has been very ill over the past few years. What is news is that she has decided to stop the chemotherapy treatment for her cancer. As you should all know, chemo is a horrible thing that leaves you feeling dreadful. It is only worth doing if it is going to save your life. If it isn’t then you’ll have a much better time of the months or years left to you without it. While I am fully behind those of my friends currently going through chemo because they are young and fit and will have many years ahead of them once it is over, I also understand those who decide to discontinue treatment.

With the news having been in Ansible, lots of people are now talking about it online. At Diana’s official fan site there is an address to which you can send email (which will be printed out and mailed to Diana). I suspect that poor Meredith is overwhelmed with email right now, but if you do want to send something that’s the way to do it.

Alternatively, you could go and buy some of Diana’s books and read them. I think she would rather like that.

Auction for Diabetes Research

~ Cheryl

In today’s email was a plea from a friend in San Francisco: Gabrielle Harbowy of Dragon Moon Press. She’s helping raise money for diabetes research through an online auction. For her, the whole thing has just become very personal. Well it is somewhat personal for me too. Kevin might only have Type 2 diabetes, and he does have it well under control. However, I well remember the panic we went through when he was originally diagnosed. There’s a bunch of literary items available in the auction, so please do take a look if you have the time.

Thank You, Mr. President

~ Cheryl ~ 6 Comments

Given that last year I wrote about the inhuman treatment meted out to Janice Langbehn and Lisa Pond by a Miami hospital, it is most definitely appropriate that I also note that President Obama has taken steps to try to ensure that this sort of thing never happens again.

Of course he can’t eliminate prejudice overnight, but this should at least make hospitals think twice before discriminating against LGBT patients, and also provide for legal redress if they do.

I note also that the WaPo article includes the following clause:

respect patients’ choices about who may make critical health-care decisions for them

This is key for trans people, because it means that they should be able to object to “concerned” family members ordering hospital staff to cut off their medication or even reverse their transitions. Sadly trans people are often at much more risk from close family than anyone else, and allowing them to choose who has the right to make health care decisions for them is absolutely crucial to their well-being.

Jeanne Robinson Fund Raisers

~ Cheryl

As many of you will know, Spider Robinson’s wife, Jeanne, is battling against a rare form of cancer that needs expensive treatments. Details are on Spider’s blog (scroll down). There is one particular fund raising drive going on at Star Ship Sofa that ends at the end of the month. I have been asked to plug it, and am happy to do so. If you want to buy stuff to help Jeanne, go here.

Book Nerds Fight Malaria

~ Cheryl

Over the weekend one of the more constructive uses of Twitter was to scare up donations for the Madness Against Malaria charity. This is an online contest for teams to see how much they can raise. The team I’m rooting for is the Twitter Tornadoes, which includes the very wonderful Juliet Ulman, editor extraordinaire and all round wonderful person.

The contest is basically a knock-out. In each round you need to raise more money than the opposing team to progress. Juliet’s team has won 2 rounds so far, and is in the last 16. More sponsors are needed to make it through to the quarter-finals.

Colleen Lindsay explains moree of the process here (post written prior to the end of Round 2), and you can see the contest web site here.

I do have one small complaint – the stupid web site would not let me pay in US$ because it detected that I was logging on from the UK. As most of my income is in US$ I’d prefer not to have to pay two lots of exchange fees just to make a donation. So I have been waiting until I can bug Kevin to make a payment for me. Having done this post, I shall go and do so. Hopefully some of you will contribute too.

The Un-Goth Gene

~ Cheryl

It seems that there is a gene for everything these days, including being happy. According to The Guardian, psychologists at Essex University claim to have discovered a gene that helps people have a positive attitude to life. I must admit that this is one of those occasions when I am deeply suspicious of science reporting in national newspapers, but a gene that helps the body resist whatever chemical malfunction results in depression doesn’t appear impossible.

I don’t think I need to comment further because I can just refer you to Amanda Palmer, who has thought about such things.

Arriving Late to the Party

~ Cheryl ~ 3 Comments

I have managed to miss out on this story, largely because when Ben Goldacre first posted about it last week it seemed like a storm in a teacup. I should know by now how such little perturbations can quickly grow into a full-fledged Internet storm. I’m sorry, Michael Fish, I should learn my lessons better.

Anyway, having been prompted by Neil Gaiman, who was prompted by Stephen Fry, you all need to pay attention to yet another dose of quackery on the part of anti-vaccination scare-mongers. Especially if you have children, because it is their lives that are being put at risk by these irresponsible idiots. Ben’s post is here, and for a full update on the story so far, here’s Dave Aaronovitch at The Times.

Morning Medical Updates

~ Cheryl

Ellen Datlow is still hoping to have her minor surgical operation today, but it is unclear whether it will happen or not. The NHS is like this. They are absolutely wonderful in an emergency, but once you fall down the priority list things get difficult because they are almost always understaffed and underfunded.

Meanwhile my good friend Pádraig Ó Méalóid is in hospital with suspected appendicitis. He needs to be back up on his feet soon because he’s helping host the Neil Gaiman / Amanda Palmer event on the 17th, which I see from Facebook already has 90 confirmed attendees, including me. So Pádraig could do with some good wishes too.