There have been a couple more answers from Leeds GIC in response to Freedom of Information requests. The first is the “Information for Referrers” leaflet (PDF Link) which details what steps GPs should take before passing someone on to the service. We already suspected the most interesting part of this, specifically: “The GP would need to provide an up to date physical examination report…In addition to the physical examination an examination of the sexual characteristics would be highly desirable.“. I struggle to see how a physical examination of “sexual characteristics” at this stage can be justified, particularly when by a GP who is not going to have the experience to do this sensitively. The only time I had any form of physical examinations were by the surgeon and electrologist, which despite being rather necessary was still, in the case of the surgeon’s visit, rather upsetting.

Most likely the main effect of this is just going to end up being unnecessarily upsetting people trying to access the service. Luckily, I’ve heard of several people that have refused the physical exam and they’ve still been able to get a referral, so this aspect appears not always to be adhered to. It’s inclusion in the referrers leaflet means people that don’t need it or want it may still end up having it however, because they feel bullied into it to access essential medical care.

One sensible aspect is getting the GP to carry out the blood tests before referral. This would hopefully cut down on delays at the GIC due to needing to go away and come back for a test, although I do not know if this is routine practice at other GICs too.

Slightly worrying is the assertion that this is a “a time-limited Pathway of Care for the maximum of three-year duration“. [sic] Having not heard of anyone being discharged from the clinic after three years while still mid-transition, I assume this is not actually enforced.

The other response was asking who had been involved in an FoI response and some rather inaccurate content on their web site, which has since been updated. In it, they start getting defensive about their policies, something I have not seen before in an FoI response. Here’s what they said:

Specifically, our Care Pathway follows the stages laid down within The Harry Benjamin International Standards of Care (this differs from the WPATH guidance), as we believe that hormone treatment is best undertaken after real life experience has begun to ensure that, possibly irreversible hormone treatment is not undertaken without there being a completely coordinated comprehensive care approach which has the ability to meet the changing needs of our service users flexibly and safely. This is paramount to a positive outcome.

Interestingly, they are explicitly rejecting the latest version of the WPATH Standards of Care with this response and reinforcing their view that hormones should only be prescribed after going “full time”. I have no idea if Leeds doctors have ever actually tried anything like talking to their patients, but going full-time is far more irreversible than hormones. Just because it’s social and not chemical/biological does not lessen it’s impact if you are treating the person as a whole.

I have not seen any studies of this, but I also suspect that those going full time before hormones are hugely more at risk of social impacts such as job loss and violence due to not “passing”.

Following some excellent work by Emma Brownbill, copies of meeting minutes from the North’s “Gender Governance Group” (G3) have been uncovered. Formed in 2005, this was initially a forum for gender practitioners from the North of England to discuss their experiences but lately has taken a slightly more sinister turn. It seems the group is concerned about the more progressive approach taken by Charing Cross becoming the UK standard and wants to have input into the forthcoming Royal College of Psychiatrists’ Standards of Care and UK-wide NHS commissioning guidelines to ensure they can carry on as they are. (The UK-wide NHS commissioning guidelines may now not happen: it depends on the NHS Reform Bill passing)

Yes, you read that right: they’re worried about Charing Cross being more liberal.

Edit: This has also been written about by Emma Brownbill and Sarah Brown.

Edit 2: I’ve been advised I should add a trigger warning to this post: Some folk are finding this upsetting.

One could possibly forgive the group, which at the time consisted of just Sheffield, Leeds, Leicester and York, for not having heard of a “genderless patient” in 2005. After all, back then not many gender-neutral folk would have had the courage to be completely open with the NHS. One surgeon suggested this could be “Scoptic syndrome“, which I’ve never heard of, but may be a typo.

But the group hasn’t improved. Here is one quote from the minutes in 2009 that’s quite revealing regarding the attitude of some doctors towards their patients – the doctor works at Leicester GIC.

[A doctor] spoke to the group about the issue of unintentionally creating “she-men”: patients who have breasts and are on hormones but don’t have final surgery as they don’t want to go any further. These patients continue to live full time as female but with male genitalia. Many of the services present at the meeting had examples of this happening

Further comments also in 2009 show that the clinicians were “wary” of folk requesting just an orchiectomy, despite a surgeon present stating this wasn’t anything new and there were few follow-up issues from this treatment.

Glasgow had similar issues in 2010, referring to a “highly intellectualised” patient who it appears also identifies as gender-neutral, but is repeatedly misgendered as “he” throughout the meeting. Clinicians did not seem to know how to handle this situation due to a lack of an “evidence-base” (as if any of their other work relies on one!) Luckily (for the patient, not for the GIC!) they apparently know their rights and how they can be treated. It seems the patient may also have had to resort to legal threats, as there is a note that the Equality Bill (as it then was) “only mentions FtM/MtF“.

Think you have legal rights?

So is it just those people that don’t fit the nice stereotype and wear frilly dresses or excessively manly outfits to their meetings that they’re uncomfortable with? Sadly not. It seems they are not keen on any of their patients having legal rights at all. One of the rights gained under the Gender Recognition Act allowed people to have complete separation of their old records and details from their new ones, so you can’t be “outed” to medical staff. (After one bad incident, my details are withheld from the central NHS database, the “spine”)

Following a discussion in March 2009, it appears most of the members would discharge patients that actually tried to insist on this, as they were quite keen on their “right not to give care“. There was no discussion about finding an accommodation. Legal rights, or NHS treatment: a simple choice.

Similar applies if you ask for your notes not to be transferred. Given the approach of some doctors I can quite understand patients not wanting unknown material to be handed over effectively scuppering their chances of getting treatment. This is a no-no for many doctors. If you won’t let them see your previous psychiatric notes, they won’t treat you.

It’s probably no surprise to learn that the Department of Health wrote to lead clinicians at the clinics in 2009 reminding them of their legal responsibilities, although the Equality Act was dismissed in 2010 as not applying to the clinics because they work in mental health. (In Scotland and some other countries, gender services are not necessarily lead by mental health)

Even a Gender Recognition Certificate won’t help you. Also in 2010 a trans man (Who has a GRC and has been transitioned for a couple of decades) tried to push for bottom surgery without a second opinion, but they refused. The implication from the minutes is that either he had already had a negative second opinion or that if he did it would be refused as the Gender Clinic regarded his presentation as “chaotic“.

Presumably any non-trans individuals who want genital surgery because of an accident would also be refused if the doctors thought they were acting a little camp?

Based on the above, one might suspect the clinics have a few unhappy patients. Despite this, it was reported in April 2010 that the results of a user survey had “astounded” researchers due to the differences between the NHS and Independent Sectors.

Other organisations aren’t happy either

Other organisations have their concerns about some of the clinics too, and this has not made the members of the G3 group happy. There was grumbling about the Equality and Human Rights Commissions’ report into trans healthcare, with it being claimed “the document could lead to confusion to service users“. Similarly, Leeds were getting “harassing emails” which they found “not very pleasant” because a Department of Health leaflet “doesn’t reflect what they do“. I would guess the DoH leaflet probably states what they should be doing however.

Charing Cross do not appear to be too pleased either, as surgeons who work closely with them refused to accept referrals from Northern GIC clinicians until May 2010 and insisted on having a Charing Cross based doctor performing the second referral. The members of G3 felt that surgeons in London “did not appear to have knowledge of the credibility of services in the UK“. Given one quite vocal member of the group refers to his patients as “she-men“, I’m not entirely convinced they have as much credibility as they would like to think.

Going for a power grab

So, what are the next steps for the G3 members? The national Standards of Care may be published soon, so they keep saying, and the NHS Reform Bill could be more pressing as it would centralise policy. Once that happens, “in commissioning there can’t be any differences any more“.

One would hope that they would aim to work towards the new WPATH Standards of Care, but instead they are clearly wanting to stop things heading in that direction and force the more restrictive RCPsych/UK Standards of Care on everyone. They refused to let a private doctor join the group in 2007, unless he signed up to the new but still draft UK SoC.

It’s not surprising they want to stop others moving forward with care because as of 2008 at least one GIC, Northampton, were “not keen” on the old WPATH Standards of Care. That’s the previous version by the way, as the new one is even more progressive so they presumably hate that even more.

The approach favoured by some members want the group to take “clear clinical governance” and heavier involvement in national commissioning and the UK SoC, which they feel may be applicable not just to the NHS but also the private sector. If they do this, they hope the standards and guidelines will be “flexible enough for all teams to work with” as their current “concern is if they talk to Charing Cross to agree and commission then things will be modelled around Charing Cross.

But you can forget any actual trans folk or the private doctors having significant input into this process as these quotes illustrate:

When National Standard agreed there would be a one day event and we felt at that stage there was a need for a national body and that is should be for professionals only instead of users and carers

D also made the team aware that the largest independent provider in London, Charing Cross won’t talk to this person. so is there any problem in excluding the independent sector? K said the national standards of care is written for the independent sector and the NHS. A thinks the private sector is a bit of a complication at this stage

This approach would let them carry on with their current practices, such as Nottingham restarting people from square one even if they’ve been private before. (That was 2008, although they did insist they won’t take people off HRT)

For trans men, many doctors – although this is apparently a controversial point within the group – want the ability to impose a 12 month wait and two opinions before allowing top surgery (something that might be required for a trans man to pass at all) despite the WPATH SoC only mandating one opinion.

Leeds and Nottingham are currently requiring “evidence of physical examinations” from GPs for even a referral, even though this isn’t in the WPATH guidelines anywhere at all. Just the pre-surgical exam can be traumatic enough for transfolk when it’s with experienced nurses and surgeons, without an inexperienced GP having to go looking down there too.

I’ll close with this October 2011 quote:

Leeds have struggled recently with GIRES putting pressure on them regarding hormones and real life experience. Leeds clarified that they have two stages of RLE, the stage before hormone and assessment 6 months, RLE 2 years before surgery

This is the kind of regime that they’re fighting to preserve.

Via @quarridors, it appears as if Nottinghamshire are blocking Trans patients from accessing HRT and in the process rather unnecessarily burning money.

Late last year and rather quietly, a number of GID-related medications including Testosterone, Estrogen and Goserelin were added to the “Red list” of drugs which cannot be prescribed by GPs. This came to light when one GP refused (Or was unable) to prescribe Testoserone to one Transman.

The intent here seems clear. It’s not just that GPs require specialists to recommend the drug, as otherwise it would be on one of the “Amber” lists. Instead, any prescription must be written by the Gender Identity Clinics.

This has two effects. In the short term, the GIC has no prescription budget so can’t prescribe and patients are not getting the treatment they need.

Secondly is what happens post-surgery. Typically, a patient would be looked after by their GP, who will write a prescription. In the case of transwomen this will often make the NHS money, as Estrogen costs less than the NHS Prescription charge.

Under Nottinghamshire’s rules, it appears that patients will need to continue seeing their GIC to get prescriptions, at a cost of a couple of hundred pounds a time. There is an FoI request in the pipeline to try to find out why this has happened, but I cannot conceive of any clinical reason. It does seem that Nottinghamshire are trying to save money and are not only risking patients health but have not thought through the consequences of their actions and will end up costing themselves more in the long run.

(The other option is that they’ve read too much Daily Mail and are just trying to block Trans treatment at all… but no PCT would act unlawfully to do that now, would they…?)

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?!?

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.

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.

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.

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.