A thought on complaints on our treatment

[Cindy]

This is a throw out thought for discussion.

At the recent ANZPATH conference www.anzpath.org I discussed with Gail Knudsen (president of WPATH) and others of a complaint system for medical providers who do the 'wrong' thing. You all know of examples, It was discussed and rejected as the *PATHs have no power as a regulatory body, purely as advisory bodies.

But there was shock when I gave my talk on data mining large social sites for information to providers, the shear size of Susan's blew providers away. They suddenly realised that there was large amounts of information/opinion on how we are treated - instead of individual stories, that to be honest make little impact.

So I was thinking: If we can put our concerns and experiences in a coherent and non-emotional way can we can use that as a means of pressuring the *PATH's to improve their SOC so as to make it more relevant to medical providers to make them treat us under improved SOC.

The logic? WE give them the ground experience of what is wrong. THEY then feel empowered to approach the various medical and legal regulatory bodies to lay down how we are to be treated.

I'm happy to open this discussion on what and how we do this.

One thing I think is very important; we need the providers, we need to bring the ones who are not onside - onside. Most professional providers who have dedicated themselves to help us really do want to help. They have their own frustrations.

We do not have a medical condition but we need medical help to let us live our lives as ourselves. That puts us in a unique place. Hence we need to think of unique ways of obtaining the help we need. The only people who are going to do that is ourselves.

Open for comment.

[LordKAT]

I had a doctor willing to help me. The hospital/clinic he worked for would not allow him to do so. This caused me to have to travel 110 miles for a doctor when one was in about 35 miles. I would like to see facilities, especially ones which take public monies, allow willing providers to do so. I don't know how to change that. I'm also not sure if this has anything to do with your query.

[suzifrommd]

Some ideas:

* Can we compile a list of our "horror stories"? The sheer volume of the thing might make some of the conscientious ones shudder.
* We should counter ANZPATH's statement that they have no power because they are an advisory body. Advice IS power. Merely calling out publicly practitioners who refuse to conform to standards, especially in a searchable way, can go far to protect a vulnerable population from exploitation and incompetence. I could be sued for posting something on the internet. *PATH, however, could require it's members to sign a waver of defamation in the event they're found out of compliance with standards.
* An open letter from our community might help, too, or at least help convince them there is a problem that needs solving.
* Or maybe a spin-off group whose sole purpose is to field complaints and pass on those that seem to indicate gross disregard for standards.

Since a support group meeting where I found out two other members had been victimized by the same doctor who mistreated me, I have been trying to find ways of protecting others. I sent a complaint to the hospital he worked for, but it was waved away. I have no idea what to do next, except to wonder whether he's killed anyone by leaving them feeling like help is out of reach. Having some sort of mechanism by which he can be "encouraged" to improve would literally save lives.

[Jess42]

Well it could be a medical condition. Dysphoria of any kind is a psychological condition that can have an adverse medical effect on an individual. Take anykind of body dysphoria and someone that sees themselves as fat even though they are not indeed fat and starve themselves leading to sever medical complications. How many just on here is to the point of either cutting something off or doing the unthinkable. Severe health risks. So Psychological problems can indeed lead to medical conditions so in the interest of helping people Gender Dysphoria needs to be recognized that it is not a psychological condition that can be therapied away. I have no problems with therapy and psychiatry mixed in with the treatment but eventually it needs to be recognized that if untreated medically it can have severe psychological conditions such as major depression, anxiety and so on that can lead to more serious medical conditions. Or the ultimate end all.

And yeah it is possible that conditions like Bulimia an Anorexia can be cured through therapy, Gender Identity is something that will just not go away without some kind of medical intervention most times if not all the time. In my opinion, which is no way professional, GID is embedded so deeply in our Psyches and a lot of times deeply entwined with our personalities and probably with our biology. At times it seems like it is something that we are actually born into. Whatever physical or natural causes should really be considered. I just don't think there is enough serious studies placed on it. I didn't wake up one morning and just felt like I wanted to be a girl. It was something that I actually grew into.

Regardless and this is just my opinion and there are a some people that are so much smarter than me but sure don't seem like it sometimes. It needs to be studied really intensely. More and more people are coming out. More and more males seem to be on the effiminate if not feminine side. Not forgetting our brothers but MTFs outnumber FTMs by how much? Why would a genetic male want to be a female in a paternalistic society? Especially when males seem to have it so much better in that type of society. To me it doesn't make sense why I want to be a female other than it is just something that is deeply embedded within me and just feels right. That in itself tells me there is more to it than just a psychological condition.

That is just my thoughts and my biggest complaint is that there is not enough studies being done on it and what makes someone feel their bodies and minds don't match.

[Ms Grace]

Sounds like a good idea. Personally I be got nothing but praise for the professionals who I've come in contact with, they've all been very supportive but I know that can be far from the experience of others.

[LordKAT]

You mean like the ER nurse who tried to rip off my underwear? That was not a pleasant experience.

[V M]

You mean like the ER nurse who tried to rip off my underwear? That was not a pleasant experience.

Ugh, I hate it when they do that!!! But I'm also glad that I'm not the only one it's happened to

Then she acted all pissed off and said she wanted a urine sample and threw the sample jar at me, I guess she was disappointed that I had equipment other than what she was expecting

Well, she got sent home and another nurse took care of me

[Cindy]

As a caution dissatisfaction is often personal and local.

The satisfaction rate with medical providers at the Monash Clinic in Australia was >90% on an independent survey.

The experience of LordKat and VM is just wrong and should be reported to the Medical Association. It is not a gender transition issue, it is assault.

[LordKAT]

Ugh, I hate it when they do that!!! But I'm also glad that I'm not the only one it's happened to

Then she acted all pissed off and said she wanted a urine sample and threw the sample jar at me, I guess she was disappointed that I had equipment other than what she was expecting

Well, she got sent home and another nurse took care of me

Sounds close to mine.
I needed some colostomy supplies. They were pissed off, gave me a small appliance, large bag and then left and refused to answer the call button. Hour later doctor came in. When I told him about it, he made a face but said nothing.

[Asche]

When reporting your experience, it's important to include what country you are (or were) in.  For most people here, I have no idea where in the world they live in, and I know that laws and medical practices vary from place to place.

[AnonyMs]

At the recent ANZPATH conference www.anzpath.org I discussed with Gail Knudsen (president of WPATH) and others of a complaint system for medical providers who do the 'wrong' thing. You all know of examples, It was discussed and rejected as the *PATHs have no power as a regulatory body, purely as advisory bodies.

How is it that you can hold a doctor to some kind of standard, and what gets them into legal trouble if they don't meet it? What rules are such of standard in medicine, and what is the difference? How can WPATH work towards that?

In some ways I'm quite happy that WPATH is not such a standard, because I don't think its very well written, and I wouldn't like to see it actually enforced as it stands. I've no doubt though that it would be a big improvement for many, but not for me. I'd imagine if you were non-binary it would be even less satisfactory.

My experience in Sydney for with gender issues has been uniformly excellent, but over the years I've experienced a large number number of incidences of very poor treatment by medical professionals. In some cases I'd certainly have grounds to complain, but I never bothered - I feel the medical system itself if not going to make it the worth the trouble. If that happened with my gender issues I'd be even less likely to complain as I'm still not out, and I want to stay that way.

My approach these days is not to trust any doctor and double check everything. With my gender issues if I had to I'd work around them completely, but I'm fortunate to be in a position to do that - and I'd not like to see those gaps closed.

I used this site to find my endo, and that's worked out very well, but there's no real list and review of doctors here (surgeons excepted I guess). A lot of questions here are people asking for the names/places of doctors, etc. Improving on that would be very helpful. I can't see that happening though WPATH or any government funded body. The Sydney Gender Center for example will give you the name of medical providers, but won't express any opinion as to their quality.

[Taka]

doctors are usually so well protected that they can afford to maltreat a few patients. not on trans people, i hear horror stories all the time about people who don't get the treatment they need because some doc thinks it's unnecessary. i can do nothing but hope that at least most medical professionals feel called to save lives rather than just study medical conditions or keep the good income.


but answering the original question.
trans people need individually adjusted treatment, just like other patients.
treatment of ->-bleeped-<- can't be standardized too much, or there will be no place for the otherly identified or individuals with a different narrative to go.

one of the first things i'm wondering about, is whether or not it should be considered a human right to get a treatment which is necessary in order to alleviate depression or anxiety, or make someone's quality of life good enough to make it feel worth living.
it seems to already have been established thatit's a human right not to be discriminated against on basis of one's gender identity or expression, but as soon as it comes to medical treatment of the causes of dysphoria in people with a different gender identity, many are discriminated against.
establishing what should be considered a human right, and how many have that right, would be a very good place to start.

in norway, only people with a stereotypical transsexual narrative have a right to treatment, and health authorities do not wish to allow any other than the one and only gid clinic to treat transgender individuals. and they will threaten gps with revocation of licences, as well as send threatening letters to patients, reminding them how a person labelled mentally ill has no right to make any decisions about their own life.
we need statements about how this violates patients' human rights, or we won't get anywhere.
human rights to treatment need to be established, for the countries where freedom of the individual isn't too highly valued (informed consent generally doesn't happen in many european countries, unless it's for beauty enhancement).


how to make treatment better.
i think it would be a good idea to do as suzi suggested, to collect horror stories.
but not without a plan.
i'd like to see some serious statistics, if it is at all possible to produce, on the likelihood that someone who is denied treatment, given too slow treatment, forced into a process that is wrong for them etc, will commit suicide, get worse problems with depression/anxiety, drop out of school, self harm, start abusing substances severely, etc.
we also need statistics on how well adjusted treatment improves a trans person's quality of life. this is what will ultimately convince people that all patients aren't similar, and non-standard treatment is safe to give as long as the patient is generally sane and able to consent to their own treatment.
it's also needed in order to stop treatment that the patient doesn't really consent to, like performing hysterectomy in addition to the top surgery that a guy went in for. it's scary to think that national health authorities allow things like this to happen in norway. they give the gid clinic all authority to decide how a patients is to be treated, who gets or doesn't get what surgeries. never consulting with the patient, but just deciding based on whatever standards they use.


how many human rights organizations are supporting transgender people's right to medical treatment?
i know they've been actively working in the netherlands to abolish the requirement of sterilization for changing one's legal gender.
they're even recommending that an "other" gender category is implemented in the system.
but they only seem to speak about the right to be identify as what they identify as.

[Illuminess]

On the notion of trans identity being a "medical problem" I have two things to say: 1) It's only a medical matter for the fact that there is a biological/neurological factor which needs to be addressed through physical transition, and 2) it stops being a medical matter when psychology is brought into the argument stating that we are mentally disordered.

In fact, Autism (the whole spectrum) as well as ADHD should be considered developmental conditions, as well, and not as "mental disorders" in the DSM-V. Bipolar, Schizophrenia, and Anxiety are due to chemical imbalances. Autism and ADHD are not things that surface later in life. You are born that way. And although all issues related to the brain should grant one easy access to necessary medical services, it should be default for anyone born outside of the neurotypical standard. We didn't ask for this, and we certainly didn't choose it.

After coming to terms with being transgender and deciding to transition I've only become more and more depressed. Waiting and waiting for HRT, having limited funds to do all that I need to do to make this transition happen smoothly, dealing with hearing the wrong pronouns over and over after telling people repeatedly not to use them, still not getting my voice at the right place, and not being in the physical place at the moment to even remotely pass without doctoring poor quality selfies in Photoshop have made life these past few months rather despairing. A couple of my house mates are using my preferred name now, which is nice, but they don't see the real me right now. They only see the old me, and it makes me feel like maybe they don't take me seriously. So, I hide out in my room most of the time.

We know what we need, and we should be able to go into a clinic, get our referral to an endocrinologist, tell them our situation and what we need, get it, and start making things happen. Seeing a therapist should only be something we do if we feel we need it; to help get through transition with sanity. It shouldn't be the penultimate obstacle as if we need their troll-like permission to cross the bridge.

I'm sure these sentiments are the usual by all or most of us, but sometimes it just needs to be repeated. Once upon a time homosexuality was considered a mental illness, but not anymore. I feel we'll make the same breakthrough with enough persistence and by making sure we keep a good example set. Science is on our side, as well, so all in good time. Still, this drudgery with tiresome patience is getting old.

[suzifrommd]

How is it that you can hold a doctor to some kind of standard, and what gets them into legal trouble if they don't meet it? What rules are such of standard in medicine, and what is the difference? How can WPATH work towards that?

I'm not so interested in holding doctors to a standard as I am informing our vulnerable community about those that can't or won't follow it.

Knowledge is power. What I'd envision is a way for transgender people looking for a practitioner to get information about which ones have caused problems in the past.

I believe that with such a capability, doctors would hold THEMSELVES to the standards because the consequences of not doing so are the sunshine that comes from free spread of information.