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Standard Care?
A Counsellor's overview.

Alice Purnell, BSc, RGN, P.G.D.C

Counsellor/Psychologist/Researcher/Writer.
Gendys Conference, 1998

 

Introduction.

It is not my intention here to challenge the Standards of Care in their new revised form. They have not yet been put into practice. Rather, it is to review the existing standard of care available this year in the UK, as clients describe to me in my counselling practice and as people have described via the various helping networks. There are of course many satisfied customers. However there also seem to be many who describe frustrations, distress and short-falls in care. Many see themselves as survivors of the system of the care available rather than beneficiaries of it.

The Harry Benjamin International Gender Dysphoria Association's Standards of Care for Gender Identity Disorders were first adopted in original form in 1979. They are now, in 1998, in their fifth revision. Previous revisions were in 1980, 1981 and 1990

There is no doubt that, after nearly ten years, changes were overdue, not simply of these Standards, but in the spirit with which they were being interpreted and implemented by many clinics and private practitioners around the world.

In the early days of the Association these Standards were devised mainly by psychiatrists and surgeons operating in the USA, and were to identify a set of diagnostic guidelines, a protocol and an appropriate treatment procedure, for those suffering from Gender Identity Conflict. Later this was termed "Transsexualism" and more recently "Gender Dysphoria". It should be noted that this protocol excludes intersexed people, although they too do actually have a gender identity, which may be in conflict with their assigned sex.

We owe a great deal to those early pioneers and particularly to Harry Benjamin himself. Before the Association was formed, individual practitioners worked in something of a vacuum, where danger lay for both the professional and the client. The professionals risked isolation or censure from others in the fields of Medicine, Surgery and Psychiatry and the law. Furthermore, practitioners in this pioneering field were also at risk of expensive litigation, particularly in the States, where any practitioner can be at extreme risk if found to be derelict in some way in treating a patient or client.

It has always has been vital that terms and diagnoses be defined in such a way that this set of syndromes were both recognised and treated appropriately by medicine, so that specialist treatment could be provided within the aegis of Health Care systems. Prior to a working set of diagnoses, definitions and standards of care, most people suffering from these debilities were in much the same shocking position as hermaphrodites, on the sharp edge of the fence, getting the worst of both worlds.

Care depended entirely on a few professionals interested in these matters as to whether any treatment be provided, and whether it was appropriately given. Their work was largely experimental and pioneering in the early days. Even today there are very many unanswered questions. There is still much need for research, evaluation and follow-up, quite apart from the ludicrous legal inequities which remain.

Twentieth century psychology offered little to this group of people who were placed by Freud, Ellis, Hirschfeld and others, in the same camp as homosexuals and were described as "inverts" or "perverts". These "giants of psychology" were interested in sex, rather than in gender. Perhaps that is a price we have had to pay for having virtually exclusively male sex-researchers interested in these matters in post-Freudian Western Society.

As an aside, we are now hearing how Kinsey used material gathered by serial child molesters, as though it was valid science, disregarding the price in human suffering at the hands of these pedophiles. I find it tragic that a search for knowledge, which may be stimulated by acute testosterone poisoning in these great minds, seems to leave out the principal of care, which is of course traditionally feminine.

Those with gender identity issues were subjected to the same lack of compassion and censure as were homosexuals by society, the law and by medicine. The problem was seen as entirely sexual, in terms of sexual preference, instead of as a matter of the gender identity of the individual. In some clinics treatment was denied to those MTF people who were not sexually attracted to men.

Great strides have been made, particularly in surgery, since the 1960's. Surgery was then far from perfect. Even now there is no way a reasonable erectile, sensile, phallus can be surgically constructed for the FTM's.

What support were gender dysphoric people given by religion, moral or ethical? A few, though not few enough, judgemental bigots from the vocal minority of the Judeo-Christian and Moslem religions with other moral pontificators then pitched in to add their weight to the guilt; beating people up with bits of the Torah, the Old Testament or the Quran, in out-of-time and context quotes. This added to that pointing finger with which a bipolar society had already stabbed these people. The curious fact is that the Great Religions do not actually have any directives about gender identity. But zealots believe they are right and others wrong. They, themselves, are dangerous and intolerant people who set themselves up as judge and jury.

It became a question of ethics in the context of prohibitions, instead of how ethically we can continue to avoid the fact that human beings are complex, and not simply male or female, masculine or feminine, only preferring a partner of the opposite sex/gender.

Labels and Difference:

No distinction exists in the vocabularies and the minds of many people between sex and gender. A lack of semantic clarity adds to this stress. It is time to atheticize, by this I mean invalidate, such misuse of our language. Language is a form of communication and sadly we all seem to use words in different ways. It is vital that we use terms which are understood and defined. Words can be used to liberate or to trap us.

It is also important that we, having devised a name, a diagnosis, term or label, like "transsexual", we need to see the person and not the label.

As a nurse I hope I was not too guilty of seeing "the appendectomy in bed three - to be given a premed' after she is in her gown", instead of seeing Jane, an old lady who is frightened and bewildered by what is about to happen to her in theatre.

I see labels as a helpful shorthand, but they do over-simplify and tend to marginalise people. Each of us is a person in her or his own right and deserves respect, through the pink-pound and gay-power and an evolving, slightly less intolerant society, have effected improvements in public attitudes and the legal system. Here in Great Britain there is no effective lilac-pound or trannie-power, and I am not sure we would want even more martyrs to the cause. Isn't it time to invite society, medicine and its Standards of Care, the Law and the Churches to get real?

We are not only dealing with a life enhancing or threatening situation but with simple human dignity?

A bipolar society which fails to benefit from the actual reality and richness of experience of those who have really examined who and what they are, is in danger of losing the possibly liberating cultural balance brought about by the presence of all the exceptions to so called "normality".

When we see normality as including difference, and that as a richness, instead of a challenge to wobbly notions of what "should" be, humanity might have freed itself from the tyranny of predeterminism (genetic, Darwinian or social). Then we may approach something resembling the wisdom with which Homo "sapiens", as our species has named itself. Meanwhile "Homo bipolaris" might be a more apt term to use for our species.

If we see an albino blackbird hounded to death by its peers, we understand a little of the "natural" fear of difference. But let us realise how much we have benefited from the vast numbers of types of animals which have been bred and selected because of particular features or qualities they possess which are of benefit to us. Society itself needs to evolve into something with a more humanistic and open attitude to difference and to the possibilities afforded by the fact that identity is such a complex feature of any individual.

Gender need not be a force for oppression, but liberation, if it recognizes the individual. Evolution itself occurs because variations, which are themselves natural, are selected. I wonder how long a poodle would last in the wild? Perhaps better than a transsexual in a crowd full of lads, or someone trying to fit in with Standards of Care which may be badly applied and be set in concrete. To make the patient fit the diagnosis is not only unrealistic but poor medicine. However without a diagnosis, treatment can only be a shot in the dark for both clinician and patient.

Treating the Individual, Why not an individual person-centred holistic approach?

The revised 1998 SOC say that these standards allow for clinical departures from these guidelines "because of a patients unique anatomic, social or psychological situation".

This gives hope towards a more person-centred approach. They go on to suggest that usually "the FTM seems to be further along in his consolidating a male gender identity, than the MTF usually is in her quest towards a comfortable female identity".

I feel that although it is clear that statistically the FTM presents on average earlier than the MTF, the reason for the clinician's caution may be that they are men, and the MTF is joining the wrong side, and may be judged as women often are, on criteria of appearance rather than identity. I simply state a caution here.

In the widest sense of medicine, many of the attitudes of professionals, who we might hope know better, seem to be outdated, bipolar and restricted. Doctors of medicine have far too little time during training devoted to issues of sex or gender or psychology. Interestingly the gender dysphoric person by her or his dilemma is in fact responding to bipolarity, towards the pole to which she or he feels he or she belongs.

The brain itself appears to be gendered, so perhaps it is not altogether surprising that this sense of bipolarity encourages a certain rigidity both in the client and the professional carer. For this reason it is important that the Standards be flexible and more person-centred.

Clinicians are busy people, but it is vital that they see patients as individuals and treat them holistically instead of simply by the book or worse arbitrarily.

In psychological terms there are often hangovers of this simplistic and patriarchal, sexual-Freudian overview still held by many first-line practitioners and the general public, which only adds to the confusion and suffering of the gender dysphoric person and those around her or him. The unenlightened treatment by the law and much of media exposure of this subject only adds to this distress. Sadly this type of thinking still persists among some medical professionals. To many a GP, the workings of the human mind are too arcane for consideration.

Purpose of Standards of Care:

The purpose of the Standards of Care (SOC) (here I quote from the 1998 draft) ". . . is to articulate the HBIGDA's international "professional consensus about the psychiatric, psychological, medical and surgical management of Gender Identity disorders".

We are told that the Treatment Goal ". . . is that the specific psychotherapeutic, endocrine or surgical therapies for people with gender identity disorders is lasting personal comfort with the gendered self, in order to maximise overall psychological well-being and self-fulfillment".

The SOC are clinical guidelines and are: "to provide flexible directions for the treatment of gender identity disorders".

Management As A Rigid Process.

The keyword in providing effective Standards of Care here is flexible. If a goal is to help provide people with gender identity disorders with lasting personal comfort with the gendered-self to maximise overall psychological well-being and self-fulfilment, why one wonders do some GIC's seem to encourage or sustain such an adversarial and unsympathetic ethos?

As a counsellor I see clients who seem often more distressed than helped by their visits to a GIC. While it is true that challenges are a worthwhile way of helping to find an unguarded truth perhaps, I have the impression that many seem to have found each of their visits to a GIC one in which they found trauma rather than comfort.

I have the impression there are checklists of questions put to clients in a way which they found have been offensive or even destructive.

I do not believe that two or three hours psychiatric assessment over a year spent attending a Clinic can do other than monitor a patient. Frankly there seems to be no psychotherapy or counselling offered to most gender dysphoric persons. Therapy seems to consist of the administration of hormones, if they are deemed suitable, and monitoring and assessing suitability for surgery.

In fact there are concerns that those who take the option of private medicine may run the risk of being too precipitous, if they are not also helped with appropriate trained counselling or psychotherapy. Further there are those who we all have met who have not spent time adjusting to their actual gender who get surgery too soon, or even inappropriately, simply because they can provide the finances to do so and they have made the right noises to their psychiatrists.

We do need to be cautious in the private sector. I have met several post-op transvestites, whose surgery was more about the clothes they like to wear, rather than because they are gendered female. Transvestites are well advised to become at ease about their cross-dressing, and not to use transsexuality as a way past guilt-feelings about being a cross-dresser.

There are also concerns for the FTM's who generally do not have financial resources as many of the MTF's to bypass over long waiting-lists for their surgical confirmation.

So the MTF's go to an National Health GIC for hormones, but faced with long waiting lists and an unempathetic GIC, get their surgery privately.

Can we blame them? What happens to the people who do not have funds available? A two-tier system has evolved; leaving much of the frustration and tears for those who need most help from the Health Service.

Management as Monitoring:

There seems to be a process of monitoring with little or no therapy provided, which clients describe as a series of hoops through which they have to pass, rather like an uncomfortable rite of passage.

Gender Dysphoria is unusual in that the patient (I would prefer to say the individual client) has often reached the diagnosis her or himself and is sufficiently well motivated and informed that, apart from structural improvements (using hormones and surgery), she is alone responsible for his or her own "treatment". That is to successfully cross this bipolar gender-divide.

The process of assessment by a psychiatrist is to assess the eligibility for his patient to receive what is termed "triadic therapy". This consists of real life experience, hormones and surgery. There is a sense in which he, the psychiatrist, is placed in the role of God, providing salvation or hell. His cautions seem unreasonable to the convinced self-diagnosed person.

I believe that this places each in conflicting positions in what may better be seen as a co-operation towards seeking and reaching an appropriate resolution of these problems. In fact the psychiatrist is one of a team in which the client is the most important player.

The Need for Personal Therapy and Counselling.

We might hope that the client goes on to find what sort of (hopefully) liberated woman or man or androgyne she or he actually is or can be. I mean by this that the greatest changes are brought about in recognising the situation, learning self-acceptance, gaining the acceptance of others; dealing with the consequent social changes and coping with the emotional, practical and social problems that may arise during and after this changeover, and above all learning to be oneself.

Gender dysphoria is not a mental illness, but a variation or predisposition. It has great significance in terms of identity, resulting in social repercussions which are often drastic or catastrophic.

Gender Confirmation is as much social as personal, about personality, as much as about what sort of body you have.

The aim surely is towards self-liberation. It is also important that the individual can escape from stereotyping. As the process of reassignment is one in which the inappropriate gender is rejected, it is important that the client realises that women and men today need not be confined to interests and skills which were sex/gender defined, in other words they can be themselves.

She can mend cars, he can be a gentle man, she can hate housework and he can love it. To be a whole person, a major adjustment comes with the realisation that self-stereotyping is confining. Nobody need become a "typical" man or woman, each can be multidimensional and therefore a more real personality.

I believe that the Standards we have fail to recognize this and provide realistic support in this difficult process. The Real Life Test can often be a real nightmare. It places the client in a physical and to an extent emotional limbo. It should not be over long. This can only cause damage, without any counselling or psychotherapeutic support.

The gap in support is to a small extent met by the various support groups. Their work is barely recognised by many professionals.

I believe that a more person-centred approach might produce better therapeutic results. There seems to be a sense in which the patient has to fit a particular set of criteria which are often unrelated to the standards of care or to the real needs of that person.

We can appreciate that the transferences involved in seeing a psychiatrist about a matter as important as gender identity can produce a high degree of dysfunction, in parent/child dynamics, with patients tempted to lie to clinicians to give the "right answers" to get what they want.

What the patient actually needs against what she or he wants can be very different, and certainly there is a place for counselling in most cases.

Few Resources and Long Waiting Lists.

The task of psychiatrists is to ensure that a gender dysphoric person will be helped by any treatment offered. Surgery is almost impossible to reverse, so caution must be exercised in offering it. But do waiting lists, once a person has qualified for surgery, have to be so long? The standards suggest the life test should be a year. Usually several years are spent "in-role" prior to going to a GIC. This time seems to be disregarded by the GIC's, and with a shortage of good experienced surgeons, the waiting list may be several years long.

In the UK there are several "Gender Identity Clinics". There is one overloaded GIC at Charing Cross Hospital which handles the vast majority of cases, and several much smaller centres.

I gather that the Leeds Clinic almost closed down. There has been a surgical log-jam at Charing Cross which means that people on the waiting list for surgery have had to wait inordinately long since Mr. Dalrymple retired, leaving Mr. Royle to do virtually all the surgery in this country. What is the plan when he retires? We need more experienced and qualified surgical specialists in this type of work. Those with gender dysphoria also need more good regional GIC's to avoid this CX overload.

The Funding Mess and its Consequences.

As there are mechanisms in place in the Health Service, it seems we do not take advantage of the surgery being offered in the Netherlands or Belgium as a means of reducing this waiting list. Isn't this a wasted opportunity? Whatever happened to Bevan's Health Service, or the Patient Charter for that matter? Few of us believe that the real life test should last any more than the Standards of Care state. It places an intolerable strain on the patient to be in a sort of sex/gender limbo. If he or she has money this can be overcome by going "private".

We should not define care, nor in an ideal world should resources. Funding depends where you live as to the availability or policy for funding any sort of care, let alone surgery.

GP practices and Area Health Authorities have introduced rationing, with waiting lists and all sorts of excuses (like this is cosmetic or elective surgery!). Since the suicide rate is unknown, but certainly high, I feel sure that elective death (suicide), or oblivion using drink or drugs, or depressive illness and breakdown, is a consequence.

In fact the system loses many by this so-called "natural wastage". No effective audit has been carried out on treatment regimes for those who were given surgery, let alone those who did not want it or were refused it.

So the benefits of having regional centres of excellence would I believe produce cost-effective, profitable, units around the country, and the savings to the nation in prevention of these malaises caused by ignoring the problem could be demonstrated.

The Legal Mess

Law and medicine do to a limited extent accept the need for reassignment surgery in some cases, and yet the SOC persists in leaving the postoperative woman or man with the label transsexual, instead of as a woman or man. This merely reinforces the legal limbo we are left with. If you had a hare-lip repair in childhood, you are not "a hair lip" as an adult person. You had a hair lip. It is part of your past, which can affect your future and present, but it does not describe who or what you now are.

The "classic transsexual" person who had surgery is still in a legal straightjacket and denied normal human rights. Once these men and women have resolved their gender dysphoria they should surely not be defined as "transsexuals" unless they so wish. They are simply women or men who have overcome this difficulty.

What of the law? To call it an ass is to do a disservice to quadrupeds. The beneficiaries of the mess it is in are usually the lawyers, but it can and will serve us. It is clear that a large group of European people is denied human rights because of the Birth Certificate issues. These are not only in respect of marriage.

I participated in Amsterdam at the 23rd. Colloquy on European Law, on "Transsexualism, Medicine and Law" in April 1993. There it was estimated that worldwide at a conservative estimate, there must be at least 60,000,000 gender dysphoric people.

We have crazy situations in the UK and the Republic of Ireland where it is legal for a new woman to marry a woman (yet lesbian marriages are not recognised) because her birth certificate still says "boy". However such a marriage might be void since consummation is seen as penetration (phallocrats!). Incidentally nobody is born a man, or a woman, they are born as a baby.

Society is growing to harmonize the legal status of "new women and men" (I shall not call them transsexuals). The UK has to recognize marriages in other EU member states, we do so of their own citizens, but not ours.

It depends where one was born as to what is their legal sex/gender in that case. In the Netherlands a person with amended birth certificate can step across the unmanned border into Belgium and still be regarded as legally a man. A small step for a man and a great step for womankind?

Yet in European Law had a potential which would not only affect the status of new men and women, but of women and men in general in terms of inheritance, pensions, partnerships. Hopefully soon all European Countries will eventually stop resisting these changes and will comply with common sense solutions.

I believe that once the legal mess sorts itself out medicine will be propelled towards a more empathetic view of the transgendered person.

AGE - The constraints of chronology:

Re-registration at birth, and replacement birth certificates, already takes place for babies, but what of errors in gender identity? When we look at pediatric medicine there is still the problem of children with unclear or ambiguous sex organs or chromosomes being assigned at birth before their actual gender is defined.

It seems that the parents and not the child, are treated by assigning and surgical interventions. Surgery is performed on babies on anatomical grounds without thought for the future of that child.

Transsexual patients who present have at least got a clinic in London and one in the Netherlands, where it may be possible for puberty to be retarded until they are old enough to proceed with a suitable resolution of their dysphoria, and offers support to parents of these children.

At the other end of the chronological scale we hear of middle-aged or elderly people being refused NHS surgery based on age rather than on need or appropriateness. Of course if socializing has been inappropriate for most of a lifetime it might be harder for that patient to adapt and "pass" as they would wish, but the anguish she feels may mean that all of a lifetime instead of most of it might be spent in a limbo of pain and compromise.

Care, it seems has a date stamp and the "use by" date seems to apply to far too many areas of health care. Surely it should not be "too late" to help anybody or take them seriously, if you can estimate several years of happy life expectancy against a painful decline in the wrong body or gender?

Who Do We Blame?

Nobody can clearly show why gender dysphoria occurs, but it is clear nobody can be blamed for it, unless it be dodgy water and polluted foodstuffs. We can see that a great deal needs to be done to improve standards of care available. Simply monitoring a problem and creating hoops for patients to crawl through, relying on a large portion of sufferers to take things into their own hands and "go private" perhaps inappropriately, or toddle off this mortal globe, is not achieving what the Harry Benjamin Standards were set up to achieve.

The blame for this deplorable state of affairs in the British Isles can perhaps be placed in a system which has created the minds of the men who lead our government, social, ecclesiastical, legal and medical systems in a somewhat Victorian, patriarchal and fearful way.

By this I mean that the idea of difference (a female principal) causes consternation, involves changing attitudes and moving towards the twentieth century as we in fact move towards the millennium.

When we ask why another post-imperial power, the Netherlands, and other European Nations seem to have made more progress in these matters, perhaps the answer is that liberalisation and humanism has meant that the need to address the needs of minorities (including a majority - women) have been largely met. I believe that if women had a more prominent input into medicine and the law, we would effect a transformation in how the needs of these minorities be met.

Networks.

There is a lot of pain, confusion, loneliness and isolation as well as discrimination and bigotry in law and society. This experience often extends to include parents and partners in a climate where sexual or gender confusion is considered a bad joke rather than being addressed with compassion and practical solutions and acceptance.

The new SOC go some way towards this, and there seems to be a better future if the philosophy behind these standards be implemented in the GIC's and by private practitioners.

The GENDYS Network has a heart as well as a head, We hope the ideal of real care will be promoted by ourselves. We include hermaphrodites, transgenderists, transhomosexuals, partners, parents, in fact all types of people as equal members of the Network, as well as caring professionals specializing in this type of work and interested in the debates of gender and sexuality.

We have as goals tolerance and understanding. We see the benefits of Counselling and Psychotherapy as greatly underestimated or ignored by the current Gender Clinics. Sadly the role of support groups seems greatly underestimated by both the SOC and the GIC's. Such groups as ours can be a resource to the patients of the overworked and underfunded clinicians.

Observations.

I do not like the word "should", however in order that there are reasonable levels of care, I would hope that

  • The philosophy as well as the guidelines of the new SOC be adopted by both the Health Service and the Private Sectors of Care, and that they are not simply paid lip-service.
  • Flexibility. Clinicians need to see patients as individuals by treating them as such, holistically, instead of simply by the book or worse arbitrarily.
  • The position of intersexed children and of adult hermaphrodites needs to be clarified.
  • Treating the Individual. A greater person-centred therapeutic effort should be put into the type of care available.
  • Inputs by trained, experienced, Counsellors and Psychotherapists be included in the care plan to enable a client to resolve personal issues and dilemmas during, and for a time after, the process of GRS.
  • A team approach which more includes the patient, psychiatrists, surgeon, endocrinologist, counsellor, speech therapist, GP, and other specialists, would be advantageous. This would be more the case if only in terms of good communication and respect between the experts, including the client.
  • Labels and stereotypes need to be avoided where possible
  • Options should be explained and explored. Those who do not seek surgery but wish to live in-role, those seeking to live as androgynes, and those who are transvestites may need help in coming to terms with who they are.
  • There seems to be little help for partners, parents or children of transsexual, transgendered, or transvestite people.
  • Research, follow-up and auditing should be included as part of the SOC. I believe that clients would be willing to assist with research if follow-up work is seen to be part of their assessment and a condition of their acceptance for help by a G.I.C.
  • The G.I.C.'s need to employ researchers who do not work in isolation, but as part of the HBIGDA international team, using standardised methodologies and decent sized samples. Only when effective auditing demonstrates the advantages of treatment will we avoid Health Authorities deprioritizing GRS as "Cosmetic".
  • Sexism and Ageism should be avoided by professionals in any care plan. Whilst it is clear practical cautions need to be applied both ends of the chronological scale, should we in fact adopt tacit policies which exclude a patient because she is elderly.
  • Self-help groups: GIC's would do well in the UK if they co-operated with the various self-help groups, putting up group meetings, training sessions, seminars, conferences in regional centres on a regular basis. This might provide a sense of belonging and involvement, which could dispel some of the mutual suspicion which seems to exist between psychiatrists in particular and their patients. To get the best from a group session I do not believe that the psychiatrist making the decisions involving care should facilitate these sessions or use them as a replacement for one-to-one work.
  • Funding. This should be national, with regional centres of excellence
  • Waiting Lists should not be allowed to compromise a patients standard of care by doubling and tripling the length of the Life Test. If there is impeccable evidence that the Life test has been fulfilled before presentation to a GIC, why can this not be taken as completed by a particular patient?
  • Law. As long as there are legal anomalies it is important that professionals work towards changes in the law to make full assimilation into the actual gender in society recognised by the law. I see this as part of the process.

In my thirty-two years trying to help in this community and more recently in my counselling practice, it has been easy to see that low self-esteem, depression and guilt are widespread among people who are often gifted survivors both of an inadequate system of care and of an accident of nature which has had repercussions as great as any illness, not simply for themselves, but for those around them.

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Citation:
Purnell. A., (1998),Standard Care? A Counsellor's overview. GENDYS '98, The Fifth International Gender Dysphoria Conference, Manchester England. London: Gendys Conferences

 
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