Posts Tagged NHS
Leeds GIC update: Still confused
Posted by Zoe O'Connell in Equality, FoI Requests on 3 February 2012
Further to last week’s post on Leeds GIC not understanding what they’re diagnosing, they’ve responded to further “clarify” their position in response to a follow-up by Emma Brownbill.
They’re still pretty confused.
Firstly, they apparently retract any claim to follow the DSM-IV: (this is despite it being listed on their web site)
Your example above follows the current edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV (TR)) which makes a differential diagnosis coding based on current age (302.6 Gender Identity Disorder in Children, 302.85 Gender Identity Disorder in Adolescents or Adults).
However, as a provider of Adult Mental Health and Learning Disability Services, our Trust follows the current edition of the ‘International Statistical Classification of Diseases and Related Health Problems’ (ICD-10), published by the World Health Organization, which has five different diagnoses for gender identity disorder (F64 Gender Identity Disorders) as follows:
It then goes on to quite the ICD… which does not list a diagnosis of “primary transsexualism”, the subject of the original FoI request, anywhere. But wait! Later on in their response, when it’s pointed out to them that WPATH and HBIGDA are the same organisation, they apparently change their minds:
WPATH is a worldwide organisation that provides “Flexible Clinical Guidelines” – (stated on page 8, version 7). As previously explained, our Trust follows the guidance and recommendations from a number of clinical publications and these may influence our practice however these are guidelines and are used as such.
So, they might use other publications? Or do they? Further down, when asked to provide a copy of any “guidance, policies or procedures” in use:
As explained above, our Trust follows the current edition of the International Statistical Classification of Diseases and Related Health Problems (ICD-10), published by the World Health Organization, for diagnoses of Gender Identity Disorders (F64).
So it’s ICD-10… but when asked if they plan to adopt the latest version of the WPATH SoC, and despite it having already been pointed out that this is the same organisation as the HBIGDA: (My emphasis)
As previously explained, our Trust follows the guidance and recommendations from a number of clinical publications, which includes the World Professional Association for Transgender Health (WPATH), the Harry Benjamin International Standards of Care, the Royal College of Psychiatrist standards (currently in draft format), Nice guidelines etc. However, these are guidelines and are used as such.
So, glad that’s been cleared up then?!?
Trans Diagnosis 101: Leeds GIC show how not to do it
Posted by Zoe O'Connell in Equality, FoI Requests on 23 January 2012
It seems that Leeds GIC may be having a bit of an identity crisis of their own, given that in response to an FOI request by Emma Brownbill they make it clear they do not really know what they’re diagnosing people with.
First, lets look at the background to the request. Emma’s first question to the GIC was to ask for “the numerical designation and diagnostic criteria for Primary Transsexualism in DSM-IV”. This is as a result of some interesting statements on their web site, including one referring to “primary transsexualism… (In accordance DSM IV)”.
Why is listing “Primary Transsexualism” odd? It is a diagnosis regarded as outdated at best and appears in no current credible medical literature. It is certainly not in the DSM-IV – the Diagnostic and Statistical Manual of Mental Disorders and has never appeared in any edition. Even more so, the latest editions – DSM-IV onwards, first published nearly two decades ago in 1994, avoid the use of the term “transsexualism” at all and instead refers to “Gender Identity Disorder”. The last time “transsexualism” as a diagnosis appeared in the DSM, “homosexuality” was also listed.
This isn’t just playing with words, as they are very different diagnoses. If you have a diagnosis of “Primary Transsexualism”, you can’t identify as homosexual in your preferred gender.
Is this some confusion on behalf of administrative staff who put some outdated documentation up on the web site for their FAQs? It seems not.
The first part of the answer the GIC supplied was a cut-and-paste response from the World Health Organisation’s International Classification of Diseases edition 10 (ICD10) entry on transsexualism. This is a completely different document from the DSM-IV, plus the word “primary” still does not appear anywhere in the ICD definition. The second part of their answer is headed “Primary Transsexualism in DSM-IV” (Remember, that term doesn’t exist in the DSM!) and the criteria they give do not match those in the DSM-IV for Gender Identity.
So what do we have so far – a GIC that is a little confused over the differences between two of the three key documents defining the main diagnosis they would expect to be dealing with?
Sadly, their response continues to dig them a deeper hole when it comes to the third key source.
They were also asked what training their staff had in “as mandated by the WPATH Standards of Care (SoC)”. The response? “Although our Trust takes into consideration guidance such as the WPATH Standards of Care (SoC), our Trust primarily follows the guidance of the Harry Benjamin International Standards of Care.”
That’s a big oops: The HBIGDA renamed itself to WPATH in 2006. It’s the same organisation, and this response rather suggests they’re working off the older (2001) version 6 of the standards of care published before the HBIGDA renamed, not the latest
It’s pretty unforgivable for a Gender Identity Clinic to have no idea about any of these documents and suggests they’re not really sure what they’re diagnosing. Sadly, although Leeds GIC were the target of this request, it’s not unusual to hear of such things within other areas of NHS healthcare for trans folk too.
P.S. I’m not endorsing the DSM-IV-TR wording or definition here – it’s problematic in a number of ways, but it’s the most progressive one.
Fining so-called “no-show” patients is a bad idea
Posted by Zoe O'Connell in Miscellaneous on 16 January 2012
It has been suggested this morning (Telegraph) that NHS “no-show” patients should be charged a fee – basically a fine by another name.
Norman Lamb, a key adviser to Deputy Prime Minister Nick Clegg, told the Sunday Express: “We should consider introducing a charge for missed appointments.
“People have to understand when there is only a limited amount of money available it means cuts on care that could go on other patients.”
I’m surprised this has been suggested and I am most definitely against it, for two reasons.
Firstly is having heard stories about the historical (thankfully!) practice of Charing Cross Gender Identity Clinic to discharge patients who failed to show up for two appointments. However – and this is the reason I’ve said “so-called” no-show patients – stories of appointment letters turning up after the appointment and people being discharged as a result were common. In some cases, letters simply did not turn up at all.
Some bits of the NHS have very good administration but in any organisation of this size, there will be areas where the paperwork is not of the same standard. It is dangerous to make a universal assumption that the NHS is functioning correctly and fine patients, probably already suffering from appointment confusion, if it is not.
Secondly, what should the fine be? £100? That’s an awful lot of money to someone on benefits who really needs the NHS and does not have the mental energy to spare appealing fines if the administration is messed up. It’s not a great deal of money to someone who is earning a decent wage and thus is not so dependent on the NHS. £20? That’s still a big blow to someone on the poverty line but just a meal out for the middle-classes.
What has also been suggested are SMS reminders for those patients who supply a mobile phone number, something that both my hairdresser and my dentist (And I suspect many other similar organisations) use. I would prefer rolling out this more positive, cooperative approach across the NHS first before we even consider the authoritarian penalty approach.
A less negative Trans NHS experience
Posted by Zoe O'Connell in Equality on 11 January 2012
I have been asked to pass this on anonymously about experiences with the NHS-run Havens service in Paddington, largely to reassure people that they know what they’re doing if they find themselves in the unfortunate position of needing their services. I won’t say it sounds like a positive experience because of the reasons one might go there in the first place, but it is at least not negative.
The content below deals with the aftermath of a sexual assault. Some readers may find this triggering. The text below is precisely as I received it and has not been edited or censored in any way.
I’m a trans man. I’ve been on testosterone over a year, pass completely, but have not had surgery.
I’ve written this account and asked for it to be shared anonymously, about my experiences at the Haven Paddington. For people who don’t know, the Havens are three clinics in London that deal with the aftermath of rape and sexual assault, and help collect forensic evidence. I was seen at the Haven Paddington the day after Boxing Day. This was about 80 hours after the rape that required it. I didn’t do anything about reporting it until Boxing Day, when I went to our local hospital with two friends. There, I was given a hep B jab, no PEP (it was high risk for HIV transmission) or morning after pill due to other medical conditions that precluded me taking them. They gave me a phone number for the Havens, who told me to dial the non-emergency police number. Eventually, about 10pm, the police arrived and wrote down exactly what happened. About midnight I was sent home, awaiting a phone call from the Met Police sexual offenses team.
They rang and it was arranged that I’d be phoned on the Monday morning to go to the Haven Paddington. They were willing to take me there and back. They came to collect me, and one friend, and we headed there. I was pretty terrified, and when we got there, I went outside to smoke straight away. The idea of being what felt like violated again so soon after the original rape was unbearably painful, and the fact that they would need to do transvaginal and cervical swabs terrified me – I have a lot of dysphoria, and also following the rape, I really didn’t want to.
The first thing I had to do was paperwork. The first form had a sex box, and the options were []male or [] female. I chose to check male. The second form had gender, and if I recall correctly it was []male []female []trans male []trans female []other []prefer not to say. I chose male again. I was a bit apprehensive about the whole thing, wondering what boxes they’d expect me to check, but was reassured that I’d marked the correct boxes if that was how I identified.
I then had to go through a check box form of things that had happened to me, and read over the initial statement I’d given the police. I made a couple of changes to that, and the doctor noted the language I was using, and used that when we went over the form, avoiding saying words like “breasts” or “vagina”. This was very reassuring, she clearly understood my gender identity. It had been explained by the police that I was a trans man, they knew from the initial statement, and I didn’t have to, she understood what that meant, how to be sensitive with words, and made a point of using male pronouns for me.
The examination was difficult. She gave me a gown, which she assured me was unisex, and I had to expose various parts of my body while she noted down marks. I couldn’t expose my chest, and she was fine with that, let me get away with keeping that covered, though it was upsetting when I got home and showered to see the bruising there, which would have been good evidence. They did take a swab there however, and when taking it, used the word “chest”, rather than “breasts”, which reassured me.
I then had to have an internal exam. For all of this, my friend was the other side of the curtain, I trusted him more than them to stop them if I needed to. The internal exam was painful, my vaginal walls were quite torn up and damaged, and I was having a lot of flashbacks and panicking, but they continued and stopped as and when I asked them to, and offered me a shower afterwards, but understood when I said I just wanted clothes.
At the end of my five hour shift there, they sent me for a psych assessment (which I felt was pointless, ultimately was, but I was offered the option of going voluntarily or being dragged), but this isn’t a necessary part of the process. Before I left, I was given the “adult male” information pack, and offered the “adult female” one as well if I wanted, which I didn’t.
I know the trans bits in here sound small, but having people use words I could handle, and the correct pronouns, made something that horrible and close to unbearable surviveable, and there wasn’t anything more they could have done. I wrote this to both alert people as to what might happen, and also reassure people that my experience, as a trans man, was as good as it could have been.
EHRC Trans healthcare report
Posted by Zoe O'Connell in Equality on 5 October 2011
Yesterday, the Equality and Human Rights Commission (EHRC) published it’s report into Trans healthcare. (Word document) It’s specifically Transsexual healthcare, with a GRS focus, because although other issues have been identified it is probably unsurprisingly access to surgery that is the one big thing that is highlighted repeatedly as an issue.
Much of the report will be unsurprising to anyone who has a passing familiarity with the situation: Despite it being unlawful to ban Trans healthcare, (Or do anything that is effectively a ban) there is still a postcode lottery when it comes to services available, with some areas being excellent and others incredibly poor. The EHRC even had problems obtaining the necessary information from the NHS in one region, so what hope do us mere mortals have? (Although one could just FoI it – possibly worth it, just to see if they were trying to hide something…)
The report also claims that Leeds requires just 3-6 months real life experience (RLE) before surgery and in exceptional cases, just one month which seems… unlikely. What is more plausible is that guidelines vary enough that the EHRC struggled to understand them all and compare like with like, and Leeds require 3-6 months RLE prior to hormones.
One fact they have uncovered that is worthy of note is the low number of regretters. It’s claimed that of all the patients that have gone through Charing Cross in the past 20 years, only three have “reverted to their original gender”. The exact definition here is unclear, but appears to be where someone has undergone surgery and then changes their mind, legally changing their name back. This certainly puts paid to claims of vast hordes of regretters out there and is in line with what I would expect: When pushed for names and sources, the “regretters” tend to be the same small handful of people we see over and over again, not all of whom have “reverted”.
The aim of the document was to identify possible future directions for NHS gender care after the upcoming reforms. The main point they make is that there will be more centralised oversight and control of policies for specialist items such as GRS, so that the regional lottery of care should at the very least be substantially reduced. It’s suggested
And finally, there’s some talk of holding GPs “accountable” (A code phrase for initiating complaints against GPs unwilling to treat Trans patients) and continuous professional development, i.e. ensuring GPs that graduated decades ago are up to date on what is available.
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