Trans activists criticise National Gender Service’s approach and “centralisation”

On Saturday 22 July outside St Columcille’s Hospital in Loughlinstown, Helen Moynihan stood before a crowd of 150 people, in drizzling rain, with a megaphone.

“We’re here explicitly to tell the NGS that we’re done with this,” they said. “We’re not putting up with it anymore.”

The National Gender Service (NGS), based in St Columcille’s, is where most people in Ireland seeking gender-affirming care and support are referred. It aims to “provide a holistic approach to gender care”, says its website.

But Transgress the NGS, a coalition of activists for trans rights, says the NGS has put up arbitrary barriers that stop those who are transitioning from getting the care they need.

Instead of believing people who say they are trans and seek gender-affirming care such as hormone treatment, the NGS requires months of invasive, unnecessary, humiliating assessments and years of waiting lists, Transgress members say.

And if people try to bypass this NGS system by finding private treatment abroad, the NGS throws up barriers to this as well, they say.

The NGS has advised GPs not to run blood tests requested by the medical teams of trans patients to monitor hormone levels. It asks them to redirect these patients back into the NGS system of “holistic, multidisciplinary” gender care.

A spokesperson for the HSE says it will “establish a group during 2023 to develop an updated model of care for the treatment of gender dysphoria”. However, for now, a spokesperson for the NGS says its assessments are based on a “whole person” approach, taking into account every aspect of a person’s health, not just gender dysphoria.

Asking for tests

Transgress the NGS started with the goal of building a database of friendly GPs for trans people, says Cristine Redmond, a member of the coalition, at a meeting on the Monday after the protest.

As part of that, the activists noticed a trend. GPs can run blood tests to monitor the effects of hormone replacement therapy (HRT) for trans patients, but some refuse to do so.

They wanted to know why. “It became clear that it was […] NGS-enforced centralisation,” says Moynihan.

An information leaflet on the NGS’s website says that “blood tests will be needed to check levels and effects of testosterone”, and that “blood tests will be needed to check levels and effects of oestrogen”.

The NGS’s model of care (MoC) says it follows international guidelines such as those compiled by the Endocrine Society and the Royal College of Psychiatrists.

Guidelines from the Endocrine Society say that it suggests clinicians measure hormone levels during treatment, to make sure that levels are in the normal range for the affirmed gender.

It also lists the risks – common to those using hormone-replacement therapy for this and other reasons – of using doses that mean you end up with more or less of the hormone in your body than is the usual range.

A spokesperson for the Endocrine Society said this is a “weak recommendation” in the guidelines, one that requires “careful consideration of the person’s circumstances, values, and preferences to determine the best course of action”.

But when people go outside the NGS system, and source hormone-replacement therapy from elsewhere, the NGS advises their Irish GPs not to do this monitoring of hormone levels, a letter shows.

“When people source hormones outside of your service, they may ask you to monitor hormone concentrations,” says one letter to a GP from July this year. “My advice in this event is that you should not monitor hormone concentrations.”

Why not monitor?

The reason the letter to the GP from July gives for this approach is that “hormone concentrations are not proven to risk stratify or risk manage care in this clinical scenario”.

“Routine bloodwork, including full blood count and liver functions tests, as well as a general check-up including blood pressure measurement, could be offered,” the letter also says.

A spokesperson for the NGS said that testosterone concentrations don’t indicate risk of harm, and oestrogen concentrations don’t indicate risk of physical health complications.

Simply being on testosterone or just being on oestrogen increases the risk of complications such as liver failure or thrombosis, which means blood clots, said the spokesperson.

But concentration levels of testosterone don’t in themselves indicate risk of liver damage or of clotting, they said. Instead, liver function tests and haematocrit blood tests do and can be used, they said.

Likewise, clots and liver damage can occur even with normal oestrogen concentrations, said the spokesperson. “And therefore checking oestrogen levels does not aid in risk stratification.”

“There is no blood test that predicts clot risk in people using oestrogen,” said the spokesperson. But liver function tests can screen for any liver damage, they said, and stop it becoming liver failure.

Jes Black, a member of Transgress the NGS, says liver function tests aren’t generally mandated for those on estradiol, as the oestrogen steroid hormone is called.

“If the NGS suggest doing the test additionally to be on the safe side that’s all good, but then they’re telling GPs to ignore the actual tests requested by the patient’s medical teams, the international guidelines, and their own MoC,” she said.

A spokesperson for the NGS said that it does measure hormone concentrations for people attending its service. “But only to modify therapy. Not to risk stratify in terms of risks of liver disease, thrombosis etc.”

It focused on the issue of risk in the letter as the initial question had, said the spokesperson. Also, blood tests are the least important part of clinical monitoring, said the spokesperson. “The most important is observation of psychosocial function. Followed closely by ongoing review of mental health.”

Better to monitor?

Dr Helen Webberley, the founder of the GenderGP, the online trans-inclusive telemedicine service, says that measuring hormone concentrations is vital.

Say a 30-year old cisgender woman gets breast cancer which feeds on oestrogen and so doctors have to switch the women’s oestrogen off, she says. “She’s going to suffer.”

“She’s going to suffer with poor concentration and sweats and her life will be not as happy,” she says. Her bones will also thin, and she’ll get a high risk of senile dementia at an earlier age, says Webberly.

It is the same with testosterone, she says. If a cisgender man has to have his testosterone switched off, she says, he also suffers.

“He suffers sexually. He suffers with his mental health, suffers with concentration, and bones – bones are really important,” she says, “bones need hormones.”

So when you’re adjusting a trans person’s hormones, you have to be careful, she says. “You’ve got to make sure they’ve got enough hormones, and also you’ve got to make sure they’re not having too much.”

Control and consent

Members of Transgress the NGS see the disagreement over blood tests as much more than a difference of medical opinion.

It’s part of a bigger disagreement over control of trans healthcare, and the sense that the NGS has been adding barriers, making it more difficult for those who need it to access it.

If a person knows they are trans, and is able to consent to medical care, should that be enough for them to be able to access gender-affirming care?

Or do they need months of assessments by the NGS, who get to decide whether they are trans or not, whether they can get gender-affirming care or not?

In the July letter, the NGS representative doesn’t just advise against monitoring hormone concentrations.

They warn the GP about providing care based on assessments done by GenderGP, which takes an approach of “believing people” when they say they are trans, according to Dr Webberley.

“We say to people, ‘Okay, I’m going to believe you, that you’re trans, because you’re telling me you’re trans. How would you like me to help you? Would you like some counselling? Would your partner like some counselling, would your grandmother benefit from some counselling?’”

The NGS representative, in their July letter, warned against relying on GenderGP.

“My opinion is that care recommendations made by Gender GP [sic] may be unsafe,” the letter says.

The NGS doesn’t recommend prescribing hormone therapy based on those recommendations, the letter says, as it should only be prescribed when there is a “comprehensive multidisciplinary assessment comparable to our own”.

“This assessment should be a whole person assessment that includes all aspects of a person’s health and wellbeing, and does not focus solely on gender development or gender dysphoria,” the letter says.

Says Black, of Transgress: “[This] is their way of saying that only they themselves can possibly assess you, by asking all sorts of deeply invasive […] questions.”

Assessing

The NGS focuses on a psychiatric approach despite the World Health Organisation no longer categorising being trans as a “mental disorder.”

Some of those who have been through NGS psychiatric assessments say they are subject to humiliating questioning, that isn’t necessary and feel they are judged on arbitrary criteria.

One 26-year-old Dublin-based trans woman, who has been out since age 17, says that her first experience of an assessment was okay.

The woman, who wishes to remain anonymous as she is still in the NGS’s system, was first referred by a GP to Loughlinstown Hospital in 2014, she says.

She had a relatively quick turnaround, she says, and by the end of the following year, she had two gender identity disorder diagnoses and was on oestrogen.

Bear in mind that by 2013, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition had already removed gender identity disorder as a diagnosis, she says. “But I was required to have two anyway before I could start HRT.”

Several years later, she was looking to get surgery. “Before they’ll even consider me for bottom surgery they say I actually need another diagnosis.”

She needed two more psychiatric evaluations, she says. The NGS was different by then, she says. The questions were now more intrusive than before, she says.

“She asks me about what porn I like”

The first 90-minute assessment, which took place in 2019, with one of the NGS doctor’s involved intimate questions, the 26-year-old Dublin-based trans woman says.

“She asks me about what porn I like, what role I take during sex, do I prefer men or women, did I play with dolls as a child, did I play sports.”

She missed her second appointment. It was rescheduled for early 2023. The appointment lasted about 45 minutes, she says.

She was asked all kinds of things and objected to some of the questions, she says.

“If my partner is cis or trans, who I had sex with during college, how I met them, am I absolutely sure about the name of the pub I drank in in college, where did I live in college, do I have sex with my partner, what does it involve,” she says.

“Am I comfortable being undressed, am I comfortable being touched sexually, do I give or take during sex, can my penis get hard, can I penetrate, does my partner mind not having penetrative sex currently, would I use toys, are my partner’s friends nice,” she says.

Permission from a parent

At her next clinic appointment in February, the 26-year-old Dublin-based trans woman asked about her result and was told it would take about a month.

For the next few months, she sent in emails trying to get the answer, she says. She got an email on 7 July saying a letter was in the post.

In the letter, they said she needed a third meeting, and should bring someone along as she “had difficulty recalling important details”, she says.

On 4 August, another letter was more direct. “‘This appointment will include your mother,” it said. At the time, she was 26 years old.

This was degrading, she says. “None of the details that I had issues recalling seem relevant. How is where I lived for half a year, 8 years ago, relevant to my trans-ness?”

“So what else are they gonna ask? ‘Hello [mother’s name] can you please tell us who your daughter had sex with over the course of her life? Does she take or give? Is she sexual with her partner?’” she asks.

She says the assessments should focus on whether or not she is mentally fit to consent to a procedure. “Instead they want to get a third cis person into the room to decide my fate based on some inane questions that seem completely unrelated,” she said.

Notes from the January evaluation, which she got a copy of, included a detailed description of her appearance.

“There’s no way that I could in good faith say they didn’t judge me even in the slightest bit based on how I looked,” she says. “Why else would they have taken note of it right before they decided if I was suitable or ready?”

Two lines later, the evaluation says that there is little evidence of gender dysphoria and that she was unsuitable for surgery.

“I was shocked and disappointed to be honest,” she says.

It infuriated her that someone she doesn’t know, and that doesn’t know her, could decide who she is “in 45 minutes of irrelevant questioning”.

Believing people

Dr Webberly of GenderGP expressed disdain for psychiatric evaluations used to determine somebody’s gender identity and expression.

“We used to think that gender dysphoria or gender incongruence, gender variance was a mental health condition, a psychiatric condition, and we don’t anymore,” she says.

After all, the World Health Organisation organisation has declassified it, she says. “So to start from a position where somebody needs psychiatric evaluation, it’s quite problematic.”

Dr Webberley says some people have a problem with what GenderGP does. “We believe people.”

They don’t tell people who arrive at the door that they have to go through six months of assessment to prove that they are trans, she says.

Why not GenderGP?

In the July letter from the NGS to a GP advising them not to prescribe hormone therapy based on recommendations made by GenderGP, the NGS says it considers recommendations by GenderGP to be unsafe.

One argument cited is that GenderGP doesn’t have prescribers in Ireland registered with the Irish Medical Council, the letter says, and only offers online consultations.

“They are therefore unregulated in Ireland and are operating in contravention to current Medical Council guidelines”, the letter says.

It refers to the bit in the guidelines which says: “If you provide telemedicine services to patients within the State, you should be registered with the Medical Council. This is to maintain public confidence in telemedicine.”

Dr Webberley says she rejects that. She doesn’t know why people say it is unsafe, she says.

“Is it because we believe trans people are trans? Is that why it’s unsafe? Because medically, the guidelines tell us exactly what to do,” she said. “GenderGP uses international clinical guidelines.”

The world follows the World Professional Association for Transgender Health (WPATH) and the Endocrine Society guidelines, she said. “And GenderGP follows those guidelines to the letter.”

Black, a member of Transgress the NGS, said the warning that GenderGP is unregulated in Ireland is fear mongering.

GenderGP medical professionals are regulated in their respective jurisdictions, and have no legal obligation to register with the IMC, as they aren’t in Ireland, Black says.

“Consider the case for non-trans medicine,” she says. “If you’re going abroad for healthcare […] is your GP forbidden to help?”

Controlling who gets care

Ky Walker, another member of Transgress the NGS, says that pushing back against GenderGP is an attempt to control who gets care.

“It really is their attempt to deny this care for any trans person in this country unless they go through that 10-year waiting list, unless they go through their psychiatric evaluations and they deem them ‘good enough’ to access the care,” said Walker.

Moynihan, also of Transgress, feels the NGS sees transitioning as something that is a last resort. Rather than “people having autonomy over their lives”.

Transgress the NGS favour a model of informed consent, through which patients are informed of risks and benefits by their GPs before deciding what to do.

Rather than invasive psychiatric questioning and what they see as the pathologising of trans lives.

Dr Webberley says that, as she sees it, the best person to determine if you are gender variant is yourself.

“That is the basis of informed consent, basically, so start from a position where you believe somebody when they say that they’re trans and then work out how best to help them,” she says.

Not just GenderGP

It’s not just Dr Webberley and her GenderGPS service whose recommendations the NGS prefers not to take.

A Ukrainian man who recently moved to Ireland found that he was unable to access the care he’d been prescribed back home.

He started hormone therapy at 15 years old, he said, and at 18 years old, he changed his legal name and gender.

Now 22, he asked to remain anonymous for this article as there are people in his life who do not realise he is trans.

After he arrived in April in Ireland, he had an appointment with his local GP, he said. He needed a prescription for hormones, he said.

The NGS advised his GP not to prescribe them though, he said. “That was a disaster because I was forced to self-medicate.”

“I have no access to blood tests, like in Ukraine I would have a blood test every three months,” said the man. “But here I can’t do it at all.”

He has had to ask volunteer communities to help him access hormones.

It doesn’t make sense, he says. “I’ve brought all the papers, all the documents, like even empty packs of medication. And still I have no legal access to either health care or blood tests.”

“I’ve been fully assessed by an endocrinologist and psychiatrist, psychologist,” he says. But his GP told him that he still has to be seen by the NGS, he said.

He described the difference between experiences with trans healthcare in Ukraine versus Ireland as “Heaven and Hell.”

In search of a meeting

At the protest outside Loughlinstown, Vic Kelly-Victor read an anonymous letter from a member of Wexford Pride.

They could not read it themselves as they are on a waiting list for care, and did not wish to face repercussions, they said.

“Our existence directly challenges the gender norms that structure our society,” they read.

“This is most blatantly represented in the current system of gender affirming care. The transgender healthcare system, as it exists in the Republic of Ireland, is not fit for purpose. In 2022, our health care service [for trans people] was ranked the worst in Europe.”

Representatives from groups such as Trans and Intersex Pride Dublin, Small Trans Library Dublin, Trans Harm Reduction, Trans Healthcare Action, and Leitrim Pride gave more speeches.

Protestors moved to the bridge across from the hospital, above the N11 motorway. They draped flags and banners over the railings.

Some cars honked in support as they passed under the bridge.

In May, Transgress the NGS held a phone and email picket, and 450 emails were sent to the NGS, says Moynihan. “Which demonstrates like a real democratic mandate to our campaign that the NGS don’t have.”

On 7 June, Transgress the NGS had tried to deliver a list of demands to the NGS at Loughlinstown. But nobody came to meet with them, and they were escorted away by security, says Moynihan.

In response to questions about whether it would meet with Transgress the NGS, a spokesperson for the NGS said: “It is understood that there are several activists, activist groups, and politicians who hold ideological and political views on how clinical care should be delivered.

“The NGS does not engage with ideological or political conversations and will only discuss matter [sic] of clinical care. Any individual who wishes to discuss their clinical care with us can contact us directly,” they said.

A spokesperson for the HSE has said it will “establish a group during 2023 to develop an updated model of care for the treatment of gender dysphoria”.

The group will be led by an “expert clinician from a relevant specialty who will oversee this process and ensure widespread stakeholder engagement”, the HSE says.

“The HSE’s goal is to develop a person-centred model of care and invest in an integrated service that meets the needs of transgender people in Ireland,” they said.

Black remains sceptical. “For well over a decade we have repeatedly been promised trans healthcare, with report after report leading to nothing,” she says.

“Why should we expect that this time will be any different?,” says Black. “During this time our ability to access healthcare has only deteriorated, to the point where even our access to safe effective private healthcare abroad is now under attack.”

Redmond says that the barriers to affirmative care are everywhere.

“It’s because it’s being controlled by a handful of people who got their claws into it and they won’t let go,” she says. “And we’re going to do everything we can to kick them up the arse.”