Introduction: Sabrina ter Horst. Moderation: Jochem Verdonk

Yesterday, the pre-conference of the symposium of WPATH was held. The theme of this day was: “Care as it should be”. One of the workshops was about “adult care”, with emphasis on both mental and medical care. Sabrina attended this day, and will provide us with a summary of what has been discussed.

Introduction

On the first place a caregiver will concentrate on the question, if the gender incongruent wish of the patient/client has no further complications related to e.g. autism or any other complicating factors. In those cases extra attention should be paid to the benefit besides possible harm by following the wish of that patient/client and the benefit besides possible harm related to not doing that and/or looking for possible alternative options.

All further discussions are based on 5 models of decision making processes :

1. The caregiver should decide, taking into account what is known about the treatment
2. The caregiver should decide, taking into account the preferences of the patient/client
3. The caregiver and patient/client should decide together, based on equality
4. The patient/client should decide, taking into account the preferences of the caregiver
5. The patient/client should decide, taking into account what the patient/client knows about the treatment

There appear to be at least 3 areas in transgender care, where this model selection is made in different ways.

In the area of the very recent declarations, that people feel themselves durable belonging to the male or female gender in order to become legal acceptance for the law about those feelings, the “informed consent” model 5 is considered to be fully adequate.

In the area of gender incongruent feelings by very young children, which has become in the picture since our last century change, the respect for children’s autonomy is clearly present. In a vote, in a complex situation regarding an 11 year old person, there was a final anonymous vote by 4 doctors, to agree on the request for puberty blockers by the patient/client to give more time to decide.

In the area of adult transgender care, that originated around 1960, we see the whole scale of decisions models from 1 to 5 in a great variety in various countries.

A discussion group with mainly people from the U.S.A. was astonished by hearing about the “gate keeping” model 1 , still in use in the Netherlands, however there is a tendency to move to level 2. But also countries like Austria and Iceland get rid of a severe concept. And countries like New Zeeland and the U.K. at least try to separate decisions about hormones from decisions about operations.

Further we see, that in some cases the full scale of gender related treatments, like HRT, SRS, FFS and various other type of treatments, are all combined in one decision model, while in other countries or institutes, these are separated. It also appears, that there is a significant difference between private care (mostly model 4) and public care (mostly model 2). Another significant point appears to be when treatment is paid or not paid by some insurance. But in my view the most significant difference in selection of the decision model are the various countries and somehow also the various institutes (when available in one country together). Another remarkable decision are the serious experiments in the U.K. with the controlled supply of hormones during the in that country usable waiting times from 2 to even 6 years.

At the end I mentioned a Swedish report about the long term follow up of transgenders after full medical treatment about e.g a 2.8 times lower lifetime expectance after medical treatment of transgenders, compared with comparative people in our general population. This shows very alarming results. It was agreed, that this certainly requires further investigations.

Discussion

After this introduction we will discuss about how WE think Adult Transgender Care should be like. Let’s start with two general questions:

1. What are characteristics of good care to transgender adults, both physical and mental?

Physical and medical:

• Instant availability: no waitinglists
• Actively practising informed consent
• Flexibility in protocol: tailored to personal needs
• Listen to what person says
• Personal experiences when applying
• Right to have doubts without consequences
• Take the flexibility in the protocol into knowledge
• Treat patients/clients according to age: no family members to support their story
• Portability of care to f.e. other countries
• No limits for people with disabilities, nerve variations, psychological issues, etc
• Objective consultation: genderteam is not connected to a hospital
• More trans awareness in gendertams
• Trans awareness in f.e. home caregiver
• No set pre-ideas about genders (M, F, other)
• Led by trans professionals
• Decentralisation: more knowledge at f.e. general practitioners
• Openness about (all variations in) sexual preferences

Pshysical:

• Also no waitinglists between surgeries
• Also support after medical treatments

Mental:

• Supportive, in stead of judging (tests, etc)
• No gate keeping
• More attention to multiple diagnoses: no contra-indications, but simultaneous treatment
• Money support, f.e. coverage by insurance
• Compulsory psychological treament? Or not?

2. What are prerequisites for good quality care, both physical and mental as well?

Needed prerequisites:

• System of accountability for care providers, f.e. feedback system
• Training about trans for governements, ngo’s etc

Prerequisites that should be dropped:

• No “one-size-fits-none” system of care!
• No stable home basis, as this is not always possible, f.e. homeless
• No assumptions about gender presentation: M, F ánd others exist
• No “severe psychological suffering” needed: not every trans person suffers in this way
• No “disorder”, as disorders mean distress
• No “all illness is because of trans”, as so many care givers seem to think
• Hostels/night shelters can be dangerous places for trans people

Dreams:

• Trans plaza: to get what you want. Not necessariliy in one building, but referrals should exist
• Trans are just normal people
• Be able to do what I want the way I want it
• Being trans is no issue when I am only trans in a group
• I don’t want to need to see other trans to feel normal
• Equal opportunities for trans people
• Equal respect for trans people
• No “normality” in society, as every person is different!
• No gender in passports, etc
• Weird: cisgender take offence being called “cis”, but trans people need not only to be called “trans”, but even need to be diagnosed with psychiatric pathology.

After these general questions let’s talk about a more detailed question:

Preliminary data of the Principle 17’s research on experiences of trans health care indicate that many trans people miss aftercare by a genderteam or a any other health care provider who knows about trans issues. This connects to what often is said by post-op trans people amongst each other: our transition only starts after our medical treatment. (For those who fancy a medical treatment, of course.)

3. What are our opinions about aftercare for trans people?

Aftercare:

• Aftercare should be offered
• Lots of info about surgery exists, but only little info after surgery
• At this point most trans peple discover other issues, but then you’re on your own and no support is available
• A support network is needed
• Daily life has no clue about trans
• General practitioners know too little about trans: genderteams should provide info to general practitioners
• “Men without a dick”: explaining?

Trans is not synonym with medical treatment:

• Not all trans people wish for or go through medical treatment, but still are trans!
• More info on genderfluid is needed for general practitioners and other care providers

Conclusions

• The signal is very clear: the current medical care for transgender people in the Netherlands is a patronizing system that no longer meets the modern views on providing care. People don’t feel they’re taken seriously and miss a say in their own treatment.
• People also indicate that they would like to decentralise trans care, especially after medical treatment. This requires more knowledge about trans related issues at other care providers, starting with basic knowledge about eg. hormone therapy. A role for the gender teams is evident: they should inform care providers about basic knowledge concerning transgender people.
• A more difficult point to realise is the great need of transgender people to a society in which trans is simply seen as a variation within human population. Men, women and transgenders are equally normal, and all fit within the great variety of people. All people differ in race, height, religion, sexual orientation, disability and gender identity.