UK: A Manifesto for Trans Healthcare in the UKIntroduction by Christine BurnsSix weeks ago you may remember that I drew attention to a petition which someone had organised about the state of treatment services for trans people in the NHS.
See
http://www.pfc.org.uk/pfclists/news-arc/2005q2/msg00044.htmAnd for the current state of that petition see now:
http://www.petitiononline.com/mod_perl/signed.cgi?nhsgidsp&1At the time I sought to put the petition into its context with quite a lot that's been going on over the last year or so in the UK:
- There's been, for instance, the controversy over James Barrett's remarks, in a memo we weren't apparently supposed to have seen. Those views are perhaps even more important to keep in mind now, since Dr Barrett was appointed clinical lead of the Charing Cross GIC a couple of months ago.
- During the course of the year, work has continued in drafting a new set of guidelines for UK care, in a joint Royal College of Psychiatrists and Royal Society of Medicine committee, under the chairmanship of Dr Kevan Wylie. Although that work is still at a draft stage, there will come a point where the committee seeks wider stakeholder feedback on the proposed content later this year. Before that time the entire trans community really does need to think about what it wants, independently from what it is offered.
- From time to time we see trans people in other countries questionning the whole basis on which care services are conceived. In France and Belgium, for instance, the stage is being set for what may be a very bitter confrontation with practitioners who seem infinitely more blinkered and conservative than our own brand. (See http://www.pfc.org.uk/pfclists/news-arc/2005q2/msg00031.htm). And, in the US, debate about the much-revised (and often reviled) "Harry Benjamin Standards of Care" resurfaces on a regular basis. Interestingly, no matter how many times people may tinker around the edges with that particular bible, it is no more loved today by trans people than it ever has been. That should suggest something about the foundations it is built from.
There is of course a lot more context than this. I covered some of it in my previous article on this topic. However, I would now like to come back to that petition, and what we may derive from it.
At the time that I drew attention to Christopher Pearce's petition it had already earned 100 signatures. Those early statements of support were well worth reading for what they said about people's views of the treatment on offer.
You can of course debate the usefulness of petitions as a campaigning tool. A badly subscribed motion can be worse than useless. Even a widely supported petition can be questionned and be ignored.
Nevertheless, Christopher's petition specifically interested me because of a phenomenon which was quite different from things we've seen in the past when the question of care service quality has been raised.
It wasn't so much the fact that people were signing for what the petition stood for, but what they actually said in the comments accompanying their signatures.
Now, as the signature count seems to have come to rest at 424, it is really interesting to read back through those comments. I say that because, in the past, the problem has always been the reluctance of people to stand up and put their feelings into print.
I see none of that reluctance in this case though. What I do see is considerable anger .. And people who appear to be sufficiently riled to overcome any previous fear of speaking out with their name attached. It is as though a threshold of tolerance has been passed within the UK's trans community. Healthcare providers would do well to consider the significance of that change, from which there is unlikely to be any going back.
The comments form an awful indictment on a whole area of treatment within the NHS. They read more like a dossier about abuse than a commentary on a small and neglected area of healthcare. The picture that is painted suggests a system that is not merely ragged at the edges, but sick to the very core. To me this suggests that something very fundamental is wrong.
One of the fundamental faults is shared with all public health service provision, of course .. lack of resources. However, even badly resourced services can often still deliver good care to the few service users they are able to help.
This is different. People in this case describe being treated in ways which, if substantiated, are scandalous.
One can of course deal with such complaints if people are prepared to take the next step and press their grievances. But would that change things? Probably not, in my view. Individual complaints may deal with the symptoms of the malaise, but is that really dealing with the root causes?
Besides, if the fault lies with the whole way of thinking, and the methodology which stems from that, complaining about the conduct of
individual practitioners is unlikely to achieve very much.
I said earlier that no matter how many times the Harry Benjamin Standards have been tweaked, people still fundamentally hate and oppose them. My own personal view is that the attempt to write UK-specific guidelines for the UK will fare no better if the fundamental flaws are copied over from existing regimes like a thread of viral DNA.
What I would therefore like to introduce through the remainder of this article are some fundamental ideas which are intended to challenge the very pillars on which ideas about "standards of care" or "best practice guidelines" are constructed.
Trans campaigners have done this a few times before over the last couple of decades. Those previous attempts to articulate some fundamental principles have been very helpful in moving all our ideas forwards. On this occasion, however, the invitation is to take a far bigger LEAP than before .. A leap into the 21st Century where, in the UK at least, a fundamental rethink of healthcare has been going on throughout the present Government's eight year tenure in office.
If that sounds overambitious then consider this however: There is nothing about the ideas which follow which isn't already being promoted as a necessary form of culture change within other forms of medical practice within the NHS.
The most fundamental change demanded by trans people is that that modern-day thinking about healthcare principles should be applied to an area that has
seen no UNDERLYING change in belief systems for decades. The challenge is not for trans people to justify why these principles should be applied to their health care, but for conservative practitioners and NHS healthcare managers to justify why they should not.
A MANIFESTO FOR TRANS HEALTHCARE IN THE UKThe concepts outlined below are intended as a generalised set of criteria by which care services for transsexual people, and their underlying governance protocols, can be evaluated against contemporary healthcare principles and in terms of acceptability to the client group.
As explained below, the history of the way in which services for transsexual people came into being and have been governed has tended to muddy the waters in terms of understanding whether ways of working are reasonable or not.
Three key factors have changed in recent years:
- Society has evolved a far more understanding and accepting attitude towards transsexual people, culminating in several changes to the law in recent years
- Healthcare philosophy has transformed in the last decade particularly, with significant emphasis on evidence-based medicine, patient-centred care, and a sea change in the relationship between doctor and patient. The latter is now characteristically described in terms of the equal partnership of provider and informed service user.
- Transsexual people have also become more self-aware and demanding of treatment standards which match contemporary norms in other areas
Proposals for the overhaul of care services in this area are only just being considered, yet it has long been clear that providers and service users both need some overall points of reference to refer to when debating change. That is what the ideas articulated below seek to provide.
Most of the ideas are not uniquely trans-related. In fact they are drawn from contemporary references such as the Government's "Valuing People" white paper, the "Changing the Balance of Power" vision for the NHS, and principles which run throughout legislation such as the Care Standards Act 2000 and the Mental Health Bill of 2004.
The terms used are familiar in other care contexts - accessibility, appropriateness, choice, timeliness, autonomy, independence, privacy, dignity, empowerment and respect for individuality.
Above all, the ideas set out here are entirely in keeping with a general drive towards what is known as "Patient Centred Care" (PCC).
Often the history of treatment services for transsexual people has been deficient in some (if not most) of these areas. In particular, there is a danger of doing things in a particular way because "that's how they are done". It is easy to forget the historical reasons for past ways of working and the ways in which the world has changed. A point of reference is therefore needed for sense checking both governance proposals and existing services therefore, so that evaluation can be anchored in modern thinking.
Historical ContextHealthcare and related services catering for the needs of transsexual people have evolved very little during the fifty years since Harry Benjamin first described the phenomenon which he labelled "transsexuality".
Although there is ample historical and anthropological evidence that gender variant people have existed throughout recorded history and are to be found in every culture around the world, Western medical treatments were defined at a point in time where transsexual people were perceived by society to be sick and perverted.
Whilst many practitioners rapidly came to realise that gender variance was an innate characteristic, there was a shared presumption by physicians and clients alike that medical assistance in transition (as opposed to deterrence) was something that wider society would scorn. This wariness of public opinion and potential disapproval for caring strategies led to the received wisdom that patients should keep their heads down, and that people should be grateful for what they got. The consequence of this belief was the idea that transsexual people should accept the unusually defensive and restrictive terms and conditions which surgeons and psychiatrists stipulated as a condition for sticking their necks out for the patient.
The result of this history is not only an enduring "sickness" model for the phenomenon of being gender atypical but also the retention of an anachronistic power relationship between people seeking medical assistance to transition between gender roles and those holding the keys.
Nobody has ever actually needed PERMISSION in order to undertake a process of gender transition. Gender crossing has never actually been ILLEGAL in Western Society. Insofar as transition can be accomplished without hormonal or surgical interventions, anyone can change their name, the hairstyle and clothes they wear and a range of official documents without needing "diagnosis" or permission.
Unlike almost any other self-initiated major life change, transsexual people do however reach a point where the assistance of medical technology is desired to optimise the outcome. Administration of sex hormones is desired to bring about bodily changes to match expectations that accompany the gender role. Surgery is often sought in order to take the process further and mould the primary and secondary sexual characteristics to the desired
appearance and function.
The only major life event that equates with this patient-led desire for medical support and collaboration is the process of carrying a foetus from conception to birth. Being pregnant is not an illness and permission is not required to start. Some doctors and commentators behave as though they believe otherwise on both counts. That does not make them right, however. Becoming pregnant is not a reason to set aside the principle of patient autonomy. The same is true of seeking medical assistance to express one's gender identity.
Both examples of engagement with care services have historically suffered from the same problem that physicians are generally uncomfortable with inversion of the power tradition in which they have been raised and trained - the arrangement that traditionally places the doctor in the position of power and the patient in the role of compliance.
Seven Big IdeasAn understanding of the history leads to an appreciation of the fundamental ways in which transsexual people seek to promote a change of underlying emphasis in the underpinning of care services. This is a statement of expectation from a service user perspective.
1. Not Sick But DifferentResearchers have tried for many years to determine a "cause" for people expressing cross-gender identification and wishing to live their lives accordingly. Such searches have led to some interesting insights into how it is possible that people can feel and identify in this way. This is no different to understanding how people can be short or tall, light or dark skinned - or just "different" in any other way. In examining all of these parameters, it is understood (in medicine if not universally in society) that no characteristics in nature are strictly binary; all are infinitely variable. So it is with gender and sex:
To be differently gendered is not itself a flaw. The flaw lies in the assumption that sex and its relation to gender should be a unique exception to nature's otherwise universal principle of diversity.
Transsexual People therefore seek the reflection of this understanding in the way that approaches towards care are conceived and described. It can be
summarised thus:
Big Idea Number One:Gender Variance is not an illness but a natural form of variation in humankind which is only conceived as a problem when it is incorrectly assumed that sex and gender are strictly binary.
2. Different Ways To Be Different>From this it also follows that it is wrong to approach transsexual people are though they are homogeneous as a group.
People may experience and conceptualise their gender variance in different ways. Some may look upon their difference as something they wish to be rid of or "saved" from. Others may look for help in accommodating their feelings without making major changes to their lives. A proportion of people may look for help in discovering how they really do feel, and to explore options with the benefit of impartial advice. A further group may have worked out such questions for themselves already, with or without assistance, and simply know what they want to do and merely seek medical help to realise their
goals.
It may be tempting for researchers to try to simplify people into categories for the purposes of study and statistical analysis; however it is important to differentiate this from the goal of good care, which should be to treat each person as a unique individual, with different needs and an essential stake in meeting them.
Putting individuals into one box ("transsexual") or a set of boxes ("Type 1", "Type 2", etc.) is no more scientific than labelling all patients as "Tall" or "Short". Dictating a care pathway on the basis of such reductive taxonomies is an abuse of the patient's rights to be viewed and treated as an individual with responsibility for their own destiny.
Big Idea Number Two:Transsexual People do not wish to be labelled or categorised but to be respected and treated as individuals whose care pathway will always need to be individually tailored. It follows that the individual must be at least equal in the process of determining that pathway. Service users need to be empowered to achieve autonomy and to be offered real choices so as to achieve independence and maintain responsibility for those choices.
3. Help To "Be", Rather Than to "Not Be"Some people may express the desire to be "cured" of their cross-gendered feelings. In these circumstances, practitioners must be honest in their evaluation of the likelihood of achieving this goal, and of their capabilities to offer that.
The majority of service users are not seeking to be changed from who they are but are looking for the means to be at peace with their feelings, in whatever form that accommodation may take within themselves and within society.
As explained above, the means of achieving that goal may be as unique as the individual. The goal should be to help individuals, if they so desire, to explore any options they have not already considered and rejected. This is a normal part of empowerment. The emphasis must be upon respect for the individual's right to determine which path to take. The care provider's role is not to seek to normalise the individual or pathologise their process of discovery by labelling the service user's difference as an illness.
Big Idea Number Three:Unless there is clear evidence of a mental impairment serious enough to affect the individual's ability to make informed decisions and assume full responsibility for outcome(s) there can be no place for any approach which seeks to impose a specific regime of compliance or an unwanted course of treatment on a service user seeking help with gender issues.
4. Autonomy and Independence Requires ChoiceNone of the foregoing fundamentals can be realistically offered or achieved unless the individual has access to meaningful choices.
Choice in this context operates on two levels:
- Service users require access to informed and impartial advice from which they can achieve the knowledge necessary to make meaningful choices. This form of choice leads to the empowerment of the individual to make further informed choices and to take responsibility for them.
- Service users also require access to a diverse range of services capable of providing (and permitting them to follow) those options.
- It is recognised that some providers may have particular specialist approaches which they favour. Some may wish to pursue approaches which remain grounded in a traditional approach to treatment and a dirigiste approach to service user compliance. Some service users may favour this too and it is not the goal for standards of care to replace one sort of rigidity by another.
For those service users who wish to learn about and pursue other approaches, however, it must be possible for a range of services to exist, and for individuals to have the option to choose from a range of options in accordance with contemporary NHS policy.
Big Idea Number Four:Standards of Care, local (PCT) commissioning policies and the operation of individual services must not (directly or indirectly) deny service users the ability to access a range of accessible choices for how and where to receive professional help. Standards of Care must also be flexible enough to permit different service approaches to flourish subject only to normal regulatory standards for quality.
5. Where Care Begins and Ends, Succeeds and FailsThe traditional model of "treating" people with gender issues has assumed that the process, once embarked upon, has only one goal and one way in which to get there..
Whereas the individual should be thinking in terms of facilitating a major and enduring life change and seeking help with that, practitioners appear instead to have been focussed upon specific stages where they perceive risk and want to mitigate that for themselves. This is why many successive revisions of the Harry Benjamin "Standards of Care" have been principally been accused of caring for the practitioner to the detriment of the client.
Thinking only in terms of genital surgery and upon getting to that point is unhealthy for all concerned. Such thinking ignores the whole person, and the essence of what they were seeking help to achieve. Surgery-led goals lead to the assumption that the means is the end - that the seat of desire for transsexual people is to be rid of (or obtain) certain body parts, rather than to lead an enduringly happy life as a complete person. The logical failing in that line of reasoning is that one or both parties may also see no purpose in continuing a therapeutic relationship after surgery has been achieved.
Big Idea Number Five:The proper goal for care services designed to help transsexual people should be to assist the individual to successfully navigate all the stages of change and adjustment necessary to achieve a comfortable and sustainably happy life for themselves. Procedures such as hormone administration and surgeries should be viewed by service user and provider alike as (optional) steps in the overall journey and not the goals. It follows that they should also occur at the appropriate time in a mutually agreed approach and not be unnecessarily delayed or withheld.
Above all, progression should never be offered as a reward or denied as a punishment for service users making autonomous choices. There is no specific end point in such a process (nor one specific starting point). Approaches that listen and respond to needs and aspirations will need (as always) to negotiate a mutual understanding about when the relationship should end, and how the disengagement should occur.
6. Determining Responsibility - Achieving PartnershipAn unfortunate by-product of the past conservative and highly controlled approach to every stage of "traditional" treatment in this field is the removal of responsibility from the individual and its complete transfer onto the shoulders of the care provider.
The rationale for this approach has always been the disproportionate concern on the part of practitioners (surgeons especially) that people may come to regret and then seek to blame them for having provided the services they had sought.
The concern is disproportionate because similar concerns are not in evidence when almost identical treatments are offered in other circumstances. A woman may seek private cosmetic surgery to drastically reduce or remove breast tissue through surgeons who advertise these services, but a transsexual man seeking essentially the same process as part of gender transition is required to provide one or more diagnoses of a condition that is still classified as a mental illness. It is only this insistence (and similar limits on provision of hormones) which require such men to submit to therapy in order to obtain the services they require. Similar provisions dictate the autonomous options for trans women.
There is nothing wrong in trying to persuade people that professional help might be able to help them in their quest. Relying upon indirect compulsion of this kind can never be an honest way to begin or form a partnership which requires mutual trust and respect however.
The paradox is that, by building a process of care provision which insists on such overriding control, practitioners are actually set up to bear the responsibility in the rare event that a client does feel regrets. It can be argued that, by taking away the obligation for the client to take responsibility for the process, the client has also been encouraged to place undue trust in the provider. Thus, if anything does go wrong it is clear whom they should blame.
This vicious circle is counter-productive in terms of all the aims of empowerment, autonomy, choice and responsibility which have been articulated before.
Big Idea Number Six:Service users must be encouraged to take responsibility for decisions they have made with informed consent. Ways of working which disempower the user, or which remove responsibility from them in any way are not to be encouraged in care standards or practice.
7. Second OpinionsIt follows from the above that the only person who should logically be seeking a second opinion for any stage in a process of this sort should be the person with the responsibility for the decision to be taken. Moreover, in that case, a second opinion must have specific goals.
When traditional practitioners have sought second opinions then it has always been unclear what kind of opinion they are being required to provide. Are they for instance seeking to confirm the diagnosis of a "condition" which mandates a particular "curative therapy", or are they being asked whether the individual is sufficiently sane to give the normal form of informed consent?
In the former case there is a paradox. Gender practitioners generally insist that they need considerable time and familiarity to arrive at their "diagnosis". The norm demanded of service users is at least 7-8 hours of face to face time spread over at least 12-24 months. It is hard to see how an equivalent second opinion can therefore be delivered on a complete stranger in a single hour.
If the question is one of competence to make an informed decision and to take responsibility for it then this also contradicts contemporary practice in other areas. It is increasingly accepted that merely thinking a person's decision is ill-advised is not sufficient reason to prevent them from doing it.
Big Idea Number Seven:Second opinions should be for the benefit of the service user as opposed to the provider. They should have clearly stated objectives so that everyone is clear about the purpose. The purpose should not be to protect practitioners to any greater extent than normally provided through consent forms. If the provider genuinely feels in an individual case that the service user is incapable of giving informed consent then they should state this.
Coming soon ....
Seven equally fundamental
TESTS to see whether services come close to achieving modern health service principles.
Christine Burns, 24th July 2005
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