Sex changes are not effective, say researchers
Friday July 30, 2004
[Abstract] Full Text [PDF]
I’m the author of the articles on standards of transsexual care, which have recently been published in the Guardian and on its website.
The main article in Guardian Weekend was the result of 14 months of investigation, including more than 100 interviews with TS/TG men and women, activists, medics and other experts, as well as ploughing through dozens of research papers going back well over 50 years. I spent 2-8 hrs interviewing the main case studies – worryingly, several people told me I had asked them more about their lives than the psychiatrists who had assessed them.
My initial interest in the standards of care was prompted by the discovery of the complaints against Russell Reid. (Incidentally patients have been making complaints about him for years before Charing Cross stepped in.) Having read the case notes of many of his ex-patients, interviewed several of them in depth, and spoken to other clinicians involved, I felt this was a significant story. I broke the news of the GMC inquiry in January.
However, complaints against one expert clearly didn’t represent the whole story. From speaking to transsexual lobby groups and patients it became clear that the level of mistrust between the TG/TS community and the medical profession had a significant impact on the quality of care. Also from speaking to a range of medical experts it soon became clear that there was a lack of consensus on treatment – and a poor evidence base behind their practice.
The Weekend feature sought to address those issues through several case studies where things had clearly gone wrong. I decided to make Marissa the central case study for a couple of reasons. Firstly because her story was so incredible – I knew it would attract widespread attention. But secondly because she accepts some responsibility for the traumas she suffered AND firmly believes she is transsexual and is proud of her identity. In other words, here was a case that showed poor medical treatment had potentially awful consequences for people who are transsexual as well as those who have been misdiagnosed.
The other case studies illustrated flaws with treatment (I have seen their case notes) and the attitudes and expectations of patients. (Note that for legal reasons certain aspects of their medical history could not be disclosed.) On the one hand you have those who believed changing sex would solve all their problems, and at the other end of the spectrum Rachael Padman, for whom genital surgery was just another step and not the one which she felt created her. As several psychiatrists and transpeople said to me patients who are isolated, dysfunctional, in bad relationships, etc will probably remain so after surgery without proper preparation, care and support.
Some in the transsexual community has done their best to discredit those who complain they have been misdiagnosed or improperly treated. The vast majority of those I spoke to who regretted surgery were not liars or chasing compensation. Many had suffered considerable trauma and confusion, some had been sexually abused in childhood, others suffered from severe mental illnesses. The degree to which most could have been held accountable for their poor medical care was slight IMO. Although I have come across cases where people seem to have had surgery on a whim – usually in Thailand where you don’t need to fulfil criteria for surgery.
The inclusion of the ARIF research was relatively last minute (commissioned two weeks before deadline). This was a literature review which confirmed what psychiatrists had already admitted – that the evidence base for the treatment of gender identity disorders is very poor. Most doctors and some TS people would like to see long-term proactive studies set up. However, some TS people – particularly some activists – are opposed to this due to their negative views (some no doubt justified) of the medical profession. However, there is now great pressure on transgender psychiatrists to develop evidence based practice and, hopefully, the new UK standards of care will provide the impetus for medics and the TS community to collaborate.
I dispute the accusations of transphobia. I’m not going to be held responsible for the views of Julie Bindel – who is a freelancer – or anyone else. A search of the Guardian archive will show that the paper is pro rather than anti-transsexual. I do not dispute that transsexualism exists, but as an investigative healthcare reporter I think that assessing serious problems in its treatment is quite valid. Some people have said, oh but what if this was a feature about gay people, etc. Firstly, as Ganesh points out, the difference is that transsexuals undergo irreversible medical treatment – treatment which perhaps has the most profound impact on a person’s identity possible.
Secondly, I am gay and mixed race, and I try to take care to ensure that my own work is not prejudiced. (I studied gender, sexuality and race at university and these are issues I have regularly explored as a journalist.) The focus of the piece was why the system was failing therefore the majority of the case studies were ‘negative’. (I do also draw a distinction between MTF and FTM transsexuals.) But Padman was included to show that there are successful – very successful outcomes – and most of the commentators stressed that with the proper care and support the majority of people faired well. I also commissioned comment pieces from Press for Change in advance of the Weekend feature’s publication. There’s also a separate article on Padman on the Guardian website.
However, some trans activists whom I interviewed in the course of this research seemed to assume that I would unquestioningly promote their line – I did not and never would. I wanted to strike a balance of views – even if some of those came from people whom I personally considered offensive. Although I didn’t come across any bigoted psychiatrists there were some whom I would not have felt happy to be seen by given their stereotypical view of gender roles and identity.
This is by no means the end of my investigation. As well as the UK standards of care, there is the inquiry into Russell Reid yet to come – and at least one court case. In the meantime I am also looking at the treatment of children with gender identity disorders.
Sex changes are not effective, say researchers
Friday July 30, 2004
There is no conclusive evidence that sex change operations improve the lives of transsexuals, with many people remaining severely distressed and even suicidal after the operation, according to a medical review conducted exclusively for Guardian Weekend tomorrow.
The review of more than 100 international medical studies of post-operative transsexuals by the University of Birmingham’s aggressive research intelligence facility (Arif) found no robust scientific evidence that gender reassignment surgery is clinically effective.
The Guardian asked Arif to conduct the review after speaking to several people who regret changing gender or believe that the medical care they received failed to prepare them for their new lives. They explain why they are unhappy with their sex change and how they cope with the consequences in the Weekend magazine tomorrow (July 31).
Chris Hyde, the director of Arif, said: “There is a huge uncertainty over whether changing someone’s sex is a good or a bad thing. While no doubt great care is taken to ensure that appropriate patients undergo gender reassignment, there’s still a large number of people who have the surgery but remain traumatised – often to the point of committing suicide.”
Arif, which advises the NHS in the West Midlands about the evidence base of healthcare treatments, found that most of the medical research on gender reassignment was poorly designed, which skewed the results to suggest that sex change operations are beneficial.
Its review warns that the results of many gender reassignment studies are unsound because researchers lost track of more than half of the participants. For example, in a five-year study of 727 post-operative transsexuals published last year, 495 people dropped out for unknown reasons. Dr Hyde said the high drop out rate could reflect high levels of dissatisfaction or even suicide among post-operative transsexuals. He called for the causes of their deaths to be tracked to provide more evidence.
Dr Hyde said: “The bottom line is that although it’s clear that some people do well with gender reassignment surgery, the available research does little to reassure about how many patients do badly and, if so, how badly.”
There are around 5,000 post-operative transsexuals in the UK, according to the transgender pressure group Press for Change (PFC). It is estimated that up to 400 sex changes will be performed this year on the NHS and privately. Each operation costs the NHS around £3,000, while private patients pay upwards of £8,000 for surgery.
Christine Burns, of PFC, said the campaign group’s research suggested that the vast majority of transsexual people enjoyed much happier lives following surgery.
Ms Burns added that the greatest flaws in medical literature about gender reassignment were in those studies unsympathetic to transsexual people. For example, one study was based on a survey of seven transsexual prostitutes interviewed in one gay bar in Chicago.
She said: “The fact that research is badly constructed isn’t a poor reflection on transpeople, but on the people we should be able to trust for our care. If they “lose” half the patients they ought to be able to track the question is why? As we’ve repeatedly pointed out ourselves there is really no difficulty in getting transpeople to come forward and cooperate in research that is properly constructed and conceived with people’s true well-being in mind.”
Research from the US and Holland suggests that up to a fifth of patients regret changing sex. A 1998 review by the Research and Development Directorate of the NHS Executive found attempted suicide rates of up to 18% noted in some medical studies of gender reassignment.
Andrew McCulloch, chief executive of the Mental Health Foundation, has written to the mental health minister, Rosie Winterton, requesting a “thorough assessment” of the long-term effects of sex change operations. He wants the National Institute for Clinical Excellence, which decides what treatments should be available on the NHS, to draw up guidelines on gender reassignment.
Transgender psychiatrists, who assess whether patients should change sex, agree that more scientific research is needed. But Kevan Wylie, chairman of the Royal College of Psychiatrists’ working party on gender identity disorders, said that all of his patients’ lives have drastically improved following gender reassignment surgery.
Dr Wylie added that it was difficult to conduct research on the outcome of gender reassignment, or to compare its effects with alternative treatments, because transsexualism was such a “rare experience”. Urological surgeon James Bellringer, who has performed more than 200 sex changes over the past four years, claimed that trying to carry out research that involves studying a control group of transsexual patients who were denied hormones and surgery would be unethical.
Mr Bellringer, who works at the main NHS gender identity clinic at Charing Cross hospital in west London, said: “I don’t think that any research that denied transsexual patients treatment would get past an ethics committee. There’s no other treatment that works. You either have an operation or suffer a miserable life. A fifth of those who don’t get treatment commit suicide.”
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Citation: David Batty, Guardian.