Not so much a care path - more a kind of steeplechase

Christine Burns

By kind permission of Press for Change

 
The following article was first published through the LGBT Health UK list - the Yahoo group set up to continue and build on the professional liaisons and debate fostered by the UK's first national LGBT Health Summit which took place a month ago at Guys Hospital in London. It is part of a series that I intend to go on writing about the ways in which healthcare for trans people is failing - and the factors to be considered in putting it right. I have extended it on the Press for Change website as a pdf document for onward publication at http://www.pfc.org.uk/node/1023

In this item I have aimed to encapsulate a complex and many-sided problem, with examples and a model that can simply be reduced to a single page. Real life is much more complex than that, of course. The question of commissioning - clearly one of the major problem areas to be tackled - is intricately bound with the question of how care pathways work. That, in turn, is linked to the conceptualisation of what the proper aim of care should be . And, as I've said many times before, the current treatment goal of litigation-proof genital surgery is treating the wrong problem and hence failing the vast majority of an extremely diverse group, many of whom may never ever need or want to get to that stage. We have to stop the system that thinks only of genitals and preparing trans people for sex. In its place we need a whole start-to-finish vision of treatment that cares for the whole person and equips them for a happily gendered life.

Before we can get there, however, we need a debate that thoroughly exposes the way in which the present system fails and abuses people. Then, with that as the starting point, we can be ready to start with a clean piece of paper, and the contribution of an enormously diverse group of people, to design an approach that serves real trans people well in the 21st Century.

Trans campaigners like myself get an awful lot of correspondence from people having difficulties with practically every aspect of using the NHS - whether that's for the ordinary kind of care we all seek when unwell or injured, or the very specific kind of medical assistance required for us to express our gendered identities through the bodily appearance we express to others.

This latter factor - the need for medical assistance to express one's identity - is a key differentiator between the kinds of need-relationships experienced by LGB people and those who are T.

At the risk of being simplistic, nobody needs a doctor or surgeon's assistance to take the first and subsequent steps towards exploring and living their sexual orientation. All you need is someone else of the same sex!

In one sense the same can be true of some trans people - at the start. People who know their own minds don't actually need a diagnosis or anyone's permission in order to change gender role. You just go and do it. It's not illegal in the UK. In my own case all those years ago I just picked a day, wrote to all the organisations who needed to know I was changing my name and gender, dealt with all the sensitive face to face explanations for family, friends and clients - and then did it. The "should I be out?" question isn't optional, but you can do quite a lot about getting on the road to honest gender expression without ever needing to go near a doctor, if you're inclined to do it in the old fashioned way of the trans community's pioneers.

The trouble is you can't get any further down the path without the assistance of medicine - and that's where the trouble begins, unless you have the money to define and follow your own care pathway.

Private care for people changing gender role is incredibly sophisticated these days - if you look offshore. A quick trip to look at the two sites below will give a very good idea of the kind of on-demand services available to those with the money - and there are obvious concerns about seeing UK citizens getting on planes to far flung places because they feel they'll get what they want there.

See http://www.supornclinic.com/ (Thailand)
And http://www.drdouglasousterhout.com/ (San Francisco)

The best known private service provider closer to home in the UK is currently preparing to mark his retirement with a malpractice hearing at the GMC in the autumn. The case against him isn't being brought by any of his devoted patients, who would rather see him elevated to sainthood. Instead the complaint comes from a group of four NHS psychiatrists at a single clinic, who heartily disapprove of him having offered a flexibly patient-centred approach, for years before the concept entered the clinical vocabulary. The complainants, putting forward a public interest case, are rather better known among their NHS patients for an incredibly rigid regime of treatment - so harsh that new patients complain to me of spending their first consultation being lectured on the rules of the establishment, and all the ways they can be thrown off the clinic's list for non-compliance.

With Dr Russell Reid neatly pinned down in a corner, and his sole private practice successor still really finding his feet, the range of non-NHS options for trans people in the UK is therefore very constrained. Inevitably, as a result, a lot more attention is being focussed now on why the NHS is considered so bad by many trans people that they would sell all their belongings (if they had many) to get private treatment if they could.

Not so much a care path

The hurdles served up by the NHS to trans people are manifold. They often start with GPs who are simply not willing to deal with a trans patient, or who lack the basic knowledge of where to turn. It is not uncommon to find that trans people know an awful lot more about the care path, treatment protocols, drugs and surgeries than the doctors they encounter.

Some of the biggest hurdles are created by extremely rigid commissioning policies - some of which are unlawful, but attempted in any case, in the hope that the hapless patient won't know their rights, the case law, and how to respond.

Then there is an absence of choice - almost always a single tertiary referral route to a single treatment centre. Next come the lengthy waiting lists, followed by treatment programmes that can spin things out for years. (The record to date was a patient who had been seeing a psychiatrist for 14 years). If (as in several cases) the relationship between patient and Gender Clinic irretrievably breaks down, PCT's apply their single referral policies to offer the patient the stark option : go back there, or have no treatment.

Visualising how all these factors can literally gang up against a single patient is difficult though. So I've created a simple diagram of the hurdles, based on the ways in which treatment most usually takes place in the UK.

Hurdles and delays

Trans people seeking help to change their gender role almost always make their first contact with the NHS via their GP - which is where their first shock can occur. A patient in a rural area wrote to me recently and explained how it's not always that simple to follow the dictum "Change your GP" if all the GPs in your village practice and miles around are likely to be of the same religiously-inspired mind.

Assuming your GP is supportive and can find out what to do, the next uncertainty is what will happen next. Some PCT's have policies that amount to a blanket ban on any kind of referral for treatment of trans people at the present - usually based on a policy of funding only in "special cases", but with no indication of what a "special case" would be. Sometimes that's applied to ALL aspects of treatment; sometimes (incredibly) a PCT may fund evaluation and years of hormone treatment - only to then refuse surgeries. The ethics of starting a treatment without any commitment to fund it to the clinically recommended conclusion are debatable of course.

Some PCTs have evolved policies of sending patients first for evaluation by a local psychiatrist. A case CAN be made for that, given that the main factor in diagnosing someone as transsexual is to establish that they don't have any kind of mental illness that might manifest in similar kinds of expressed wishes. In other words, trans people are characterised by an absence of mental pathology - somewhat underlining the point that expressing your innate identity isn't a defect or illness, but just another form of normal human diversity.

Unfortunately, that's not how local psychiatric referrals usually work though. Some psychiatrists know there is nothing they can do to "cure" trans people of being themselves and simply want nothing to do with such referrals. Some simply declare they're not interested in serving the need - as though that were a valid option for professionals to take. Some have pet ideas about subjecting trans patients to lengthy psychoanalysis - which in fifty years has never produced a validated outcome. If the patient is lucky, they may just find a local psychiatrist knowledgeable enough to take a history and perform a differential diagnosis - but in those cases the patient can then simply find themselves back at square one, with their PCT still unwilling to refer to a "Gender Identity Clinic" (GIC) - or to offer a choice of which GIC the client might wish to attend. Private practice options are definitely off the menu - even when considerably cheaper (as they often are). Where there is one choice, the patient may either be faced with a long distance journey of hundreds of miles for consultations . . . or a waiting list measured in years . . . or both.

Having got to the GIC, the patient may then be met with the kind of boot camp regime which I described earlier, and a lack of professionalism that generally beggars belief. Patients have described travelling two hundred miles for an appointment only to find that it has been cancelled at short notice beforehand. Notes are lost. People complain of never seeing the same practitioner twice and having to give the same basic history again. Any treatment undertaken with another therapist beforehand is usually denounced, with the stark choice to "stop and go back to square one" or be removed from the list. Patients have even been removed from lists for missing a single appointment, for reasons beyond their control.

And it's as well to remember, when recounting this horrific catalogue of abuses, that the patients in question are often by this point extremely vulnerable. They've lost friends, family, jobs, homes - all because of the discrimination and stigma attaching to being a transsexual person. For them there is no going back. Their bridges are burned and, besides, they wouldn't WANT to return. It takes a pretty powerful force inside to move people to face all this, knowingly.

Patients face a treatment regime that forces them to undertake an endurance test for a period of at least two years before being "allowed" to the next stage, which is a referral for the genital surgery that the whole regime is centred around. And then, again, their troubles can start over with their PCT - haggling over whether their surgery is to be funded. One young trans woman was famously told a few years ago in Sheffield that she was number 20 on the local waiting list for surgery, which was funded at the rate of two procedures a year! In the end, being extremely resourceful, the woman in question mounted a local publicity campaign with the support of her local paper to SHAME her PCT into reviewing their policy. Soon enough she got her surgery in a matter of months. But it begs the question of whether healthcare for such vulnerable people should really be based on the principle of the squeaky wheel getting the grease.

Faced with all this as an everyday reality across the country it is little wonder that lots of trans people DO look wistfully at those pictures of smart waiting rooms and high tech surgeries in Thailand, San Francisco and a growing number of places in between. Similarly, the Internet has made it remarkably easy for those same people to go online with a credit card and order up the prescription hormones they need, to bypass a health system that is seen by them as abusive and obstructive.

When I was a teenager, the place people would go was Casablanca - because there was literally nothing else closer to home. It's sad to think that the options for those with money are still not a lot different these days. It's just a different airport.

The trend of Internet Hormones and offshore surgery is not anything to celebrate. It hasn't happened yet to my knowledge, but sooner or later someone is going to die this way. Cross sex hormones aren't sweets. They can be dangerous when taken without the right precautions and testing. Overseas surgeries are full of risks too - for nobody hears of the treatments that didn't go well - and it's a long way to go back and complain.

But this is where medicine in the UK is pushing people. It's a form of neglect, which should have no place at all in the Health Service we all pay for.

Trans people approach medicine looking for no more than the same kind of relationship that a pregnant woman seeks for a safe delivery of her child. Being pregnant isn't an illness, and there is no debate about whether it was a matter of choice or not to be that way. Medicine's role is to help the event to take place safely and comfortably for all concerned, because it's a thing that happens to people.

Unlike pregnancy, having a transgender identity (albeit rarer) is NEVER a choice. In common with having a baby, however, the outcome has an unstoppable inevitability of its own. And all that trans people seek from medicine on that journey is some help from the supposedly caring people around them.

As I've illustrated here, the issue is not an absence of care so much as a quantity of abuse.

It's time the steeplechase season ended. I never advocate for trans people to have any "special" rights. In a public health service that delivers so badly for so many others it would be unfair to expect trans people to have a better ride than anyone else. But if we can achieve a level field - a place where trans people are treated no more abominably than everyone else - that would be a fair starting point for equality.

The full version of the above article with the diagram may be downloaded at full resolution in pdf format for onward publication from: http://www.pfc.org.uk/node/1023

Further Discussion may be found at:

Collected Essays in Trans Healthcare Politics
http://www.pfc.org.uk/node/1023

A Basis for Evaluating Care Approaches and Services for Trans People in the UK
http://www.pfc.org.uk/node/613

Report into the Medical and Related Needs of Trans People in Brighton and Hove, by Persia West
http://www.pfc.org.uk/node/630