Epistemic injustice *title edited by MNHQ*

[NutellaEllaElla]

Bernadette Wren, Consultant Clinical Psychologist formerly of GIDS has written this piece. I've briefly scanned it and hope to read it in more detail when I'm not on my phone. I could be wrong but at first glance I think she is trying to tread a line. I did notice the phrase "assigned female at birth" but am trying to engage fairly with her intentions rather than pick at words. Anyway, perhaps it will be of interest to some on here. I feel sorry for the staff, what a hot potato.

Diary: Epidemic Injustice

OP - could you ask MNHQ to change your title and link to Epistemic Injustice as it will make it easier to find previous threads on the topic?

Ah yes thank you. I wonder if I can blame auto correct for that ...

@NutellaEllaElla

Ah yes thank you. I wonder if I can blame auto correct for that ...

Absolutely, your device had obviously been scanning today's headlines and saw the review about medical devices and their structural biases for various protected characteristics so changed your 'epistemic' to 'epidemic'.

Judith Butler’s recent work is significant here, not on the topic of gender, but violence: ‘Violence does not exhaust itself in the realisation of a just end; rather, it renews itself in directions that exceed both deliberate intention and deliberative schemes.’

It's interesting to see this perspective about GIDS from another 'insider' but I'm struggling with the value assigned to Butler's work. My internal discussion has not been assisted by the use of the phrase puberty suspension by the author and the implication that it's questionable whether or not a "whistle-blowing report on GIDS was needed".

If a whistle-blowing report on GIDS was needed, I wish I’d written it myself. It would have highlighted the isolation of a group of conscientious clinicians who were trying to cope, in the absence of adequate support, funding and external expertise, with complex clinical, empirical, legal and procedural challenges while an upheaval in cultural narratives of sex and gender took place across the country. GIDS became the scapegoat in a society that needs to look more boldly and intelligently at how we should accommodate a great many new forms of pressure for change.

@EmbarrassingHadrosaurus I think you've got the most pertinent quotes, there.

The Butler quote, if you break it down, is just 'violence begets violence' - an idea so new and revolutionary it's in the Bible. So, given the irrelevant quote, what does bringing up Butler mean? It means for Wren, GIDS is a postmodernist, post-structralist project, not a clinical or medical one.

The second quote can be summarised as: "If I wrote the whistle blowing report, I'd ignore the whistle blowers."

The article refers to Newsnight expose, but doesn't engage with the substance.

It refers to Bell v. Tavistock, but sticks close to the legal abstractions, avoids the fact that there's scant evidence of GIDS applying gillick properly.

It refers to the NICE evidence review, but again doesn't engage with the substance (i.e. there isn't any evidence).

It drones on and on in this vein, referring to criticism of GIDS but never actually acknowledging if they have any validity.

That was a painful read. Long and completely pointless.

I guess if someone had worked for eleven years at a homeopathic hospital and felt they were under attack by people pointing out the lack of evidence, they'd be upset, too?

This seemed to me like pure one-sided propaganda but so (deliberately) poorly written in the genderist style that the arguments being made are obscured.

I can’t detect any scepticism towards genderism in amongst the waffle and Butler quotes, or any kind of acknowledgment that critics might have a point.

I think it’s a long-winded complaint that they are being attacked by big meanies.

The last paragraph is perhaps more revealing than the author intended.
She doesn't appear to understand why normalising cross sex hormones and surgery for children might be considered contentious. Or why sometimes people who have accepted positions of responsibility need to be the ones to resist pressure, especially when it appears to be driven by children.

The Butler quote, if you break it down, is just 'violence begets violence' - an idea so new and revolutionary it's in the Bible

Thank you. I thought that was what it was trying to say.

I've only very skimmingly (yes I know that's not a word) skim read this but why is the Butler quote even used?

It adds nothing beyond "ooh get me I can quote Judith Butler"

If a whistle-blowing report on GIDS was needed, I wish I’d written it myself.

This is such a weird phrase. I read it as 'I don't agree there were any problems but I like to fantasize about being a hero and everyone thanking me and saying how marvellous I am, though in reality I am too much of a coward'.

I have the impression, rightly or wrongly, that up until around 2015, GIDS were doggedly sticking with the closest thing they had to an evidence-based approach and that they were, at that stage, more or less applying a watchful waiting approach. Between 2011 and 2014 they started a relatively small scale trial of puberty blockers.

Had they concluded that trial, examined the results, and followed the pathway indicated, they likely would have continued with watchful waiting and probably stopped the use of puberty blockers, or perhaps cut down their use to an absolute minimum, due to the lack of convincing evidence.

Instead, they seem to have headed down a different route, continuing and possibly increasing the use of puberty blockers. From the outside, it looks very much like with the huge increase in caseload, they more or less gave up and caved to the pressure. Nothing in this person’s testimony indicates that my impressions are incorrect.

Which all-in-all was a great pity as I have always hoped (and indeed naively assumed until relatively recently) that the NHS was better than that.

I found this article really interesting and I think it raises some important points that don't always get enough air time in this debate.

Firstly, Dr Wren does basically, if indirectly, acknowledge serious failings in the GIDS service. She says "It wasn’t surprising that staff were distressed and divided" and asks "what would have been required to keep the service and its staff from buckling"? For a very senior NHS Clinician to say that her service "buckled" is a pretty damning judgement.

Secondly, the change in referral process and how that impacted care is really important:
For years, we had relied on local CAMHS teams to screen and support young people with psychosocial difficulties before referring them to GIDS, and to keep that support in place while we attended to gender concerns. But in 2016, NHS England commissioners ruled that GPs, schools and social workers could refer patients to the service directly. More problematic still, many local CAMHS teams, overstretched and understaffed, withdrew support for these children, reasoning that a well-funded highly specialist service like GIDS should be able to cope.

What we see here is how a major structural change in care provision had a huge impact on quality of care and also contributed to the narrative in which any other mental health issues are folded into the gender dysphoria diagnosis. Whereas previously, young people referred to GIDS would have concurrent support from their local CAMHS service, now local CAMHS providers can use the gender identity issue as a way to gatekeep out young people by basically saying "You have a gender issue. Go and get that fixed first, before addressing your other mental health issues." GIDS as a service wasn't equipped to diagnose and treat other mental health issues because they were set up to just do the gender identity bit, but there is no easy way for them (as a national specialist service) to liaise with local CAMHS teams or local authority social care (eg safeguarding referrals). As someone who works in mental health services, this kind of bullshit gatekeeping makes me really angry because it deliberately fails people in need of care. It sounds like a nightmare to manage from a service provision perspective at GIDS: big increase in referrals, more complex referrals, and drastically less support for both the service and the young people from local services.

Thirdly, it is clear that the existence of private providers who could prescribe puberty blockers put the service under huge pressure:
We all got tangled in the contradictions of trying to assess a child for puberty blockers when the treatment was already being provided by a private doctor.

If you read the Sonia Appleby tribunal report, it is clear that this issue was causing huge consternation to clinicians - and was one of the reasons they were seeking out Appleby for advice. If a (dodgy) private provider is handing out medications, and you know that your client is at higher risk of harm if they continue to take the medication in an unregulated and unmonitored manner, is the ethical next step to provide the medication yourself in order to ensure that it is done safely (eg with bone density scans, side effect monitoring etc)? I don't know what the answer is, but I have a lot of sympathy with the argument that GIDS was put in an extremely difficult position because of the unreasonable actions of various organisations with some fairly extreme views.

That said, there's a lot of stuff I don't fully agree with too. Her comments about research are partly disengenuous. Yes, it is hard to do good clinical research on small populations. But that's the bread and butter of clinical psychology. And the hugely delayed study they produced was pretty crap. A huge missed opportunity to gather some really high quality data. That really annoys me. Leaving research aside, it was clear from the Bell JR and from some of the CQC reports that their recording of consent/capacity/ outcomes in their internal notes was just dire. That's not about gold standard research, that's basic stuff.

Secondly, there seems to be a lot of bitterness about staff not using internal processes to raise concerns and get them addressed. While I know it must feel pretty crap to acknowledge this, the Sonia Appleby case had a number of examples of staff attempting to raise concerns and being shut down by senior staff. Sonia Appleby won an employment tribunal against the service. That's pretty rare and a very damning indictment of how well the internal processes were functioning. Namely not.

Finally, I think there is an unacknowledged failure of leadership here. Clinical psychologist (sorry for the stereotype) love to take the middle ground and please everyone. But when you are a service lead, you can't do that. You can't keep everyone happy and sometimes there are no good options. Yes, GIDS was under huge pressure. Yes, the team was trying to do the best they could under awful conditions. But sometimes it's not enough to say "We're trying our best here." Sometimes you need to acknowledge the harms that your best efforts are still causing. Sonia Appleby did that. David Bell did that. Bernadette Wren did not.

Nice in-depth article, well written and very long. Covers a lot, the history, the good, the bad and the ugly. The bbc and critics is mentioned, hostile media doesn't help.
It's like those working at abortion clinics getting hounded by anti abortion groups.

@Thelnebriati

The last paragraph is perhaps more revealing than the author intended. She doesn't appear to understand why normalising cross sex hormones and surgery for children might be considered contentious. Or why sometimes people who have accepted positions of responsibility need to be the ones to resist pressure, especially when it appears to be driven by children.

Children get gender related surgery once they reach 18 years of age and are at the adult clinic in the uk. Gids does not give surgery referrals for under 18s.

I may be biased or just particularly suspicious, however that whole article comes across as someone trying to say don't blame us/me for the harm we have/are doing it's all the fault of society, external pressure groups (mermaids etc al), parents, the Internet/social media and lack of funding/research, but certainly not mine/ours fault and the framework that nice/cass report are judging us by is wrong and unfair the only thing we didn't get right is record keeping which doesn't really matter and everyone is being mean.
If anything it seems to be a preemptive don't sue me. I am now left wondering if this is due to the cass review (isn't it due to report soon), some legal case in the works or just the the fact that people in the UK sitting up and noticing what gender idoligy really means and the harm its doing

This is interesting, and I feel, contentious:

What is true – and perhaps the ideology attack is trying to get at this – is that GIDS, from its modest start, was a justice project as well as a therapeutic project. By justice, I mean it aspired to widen the circle of people whose experience of the self is listened to with respect. This meant not automatically deeming a child’s atypical gender identification problematic, and not striving to modify that identity in the direction of a more orthodox body/mind relationship. It also meant not evading the fact that trans, non-binary and queer people have been (and often still are) dismissed as knowledge holders within healthcare systems; that they are subject to ‘epistemic injustice’, since society as a whole lacks an adequate interpretative framework to understand their experiences.

I do not believe that an NHS clinic should, on any level, be active enough politically to call itself a “justice project”. It’s a very small step from there to “lobby group”.

Obviously if asked for clinical judgement and feedback, it’s okay to give information, but I think you need to then be very careful that the data you supply is very well backed by evidence and that it is unbiased. The primary aim of the clinic must surely be one of alleviating suffering in its patients and helping them to live in the world that exists outside it’s walls.

I think when gender clinics stepped beyond that and began to push an affirmation approach, they began to ignore the fact that the wider world are not on board (and likely never will be) with the idea that people can change sex (even if you call it “gender” to try to imply that is somehow different). They lost sight of the important work that was being done by gender clinics previously, which was in helping their patients to navigate the world as it is. That has left them with a cohort of patients who are unable to cope and expect the world to change around their mental health fragility.

They’re on really dangerous ground if they pursue that approach. It does nobody any favours to pursue a form of medical treatment that relies on the idea that society must change. And indeed what we are now seeing is societal backlash against that pressure.

If a (dodgy) private provider is handing out medications, and you know that your client is at higher risk of harm if they continue to take the medication in an unregulated and unmonitored manner, is the ethical next step to provide the medication yourself in order to ensure that it is done safely (eg with bone density scans, side effect monitoring etc)?

That is not the attitude that the NHS takes to other patient groups. The obvious one is people who have private medicine for a cancer treatment that isn't approved for them (as yet) will not get the tests and monitoring to support it (I gather some CCGs are more flexible about this now but it's not universal). A fair number of people take privately purchased thyroid meds for their hypothyroidism (very different guidelines for the threshold of tx in the UK) and are threatened with being de-listed from their GPs if they persist. At best, the outcome is that they are not monitored and have to pay for their own tests to adjust their medications.

There's a substantial population of body-builders (including 'gym heroes' rather than competition level) who inject steroids and other substances. I know that a few have persuaded their GPs to monitor them with tests but most of them haven't.

There are lots of people who self-medicate for a variety of reasons and the NHS doesn't assume the responsibility for monitoring them nor purchasing treatments for them that are not authorised for those purposes within our four nations and their flavours of the NHS.

@anaily
Children can no longer receive surgery in the UK thanks to the push back to this ideology - which you just compared to anti abortion activism.

Why is a generation of children suddenly facing the need to be medicated for puberty? Do you support giving them puberty blockers? How about cross sex hormones? Should we be concerned about these 'treatments' for puberty, or should we ask questions?
Does asking questions and asking for evidence based medicine constitute an attack?

Hadrosaurs

That's a good point about cancer / thyroid treatments. On reflection, I agree with you. I was thinking more about methadone and other harm minimisation schemes like needle exchanges.

On the other hand, services do have other options if they think parents/guardians are not acting in the best interests of a child. When Charlie Gard's parents (with the best intentions in a desperate situation) wanted to take him to America for futile treatment, the Great Ormond Street hospital went all the way to the high court to prevent them from causing him unnecessary suffering. The Bell case highlighted that these avenues are also available to GIDS to manage ethical dilemmas. That they choose not to do that and instead caved to pressure from parents and lobby groups is not a good look.

Thanks for taking the time to read it properly. My brief read did get the impression of "it's really hard, it's not my fault", and I do sympathise but it can't stop at that

other harm minimisation schemes like needle exchanges.

I thoroughly approve of those. I've met a fair number of gym bros there (steroids or similar) while meeting someone who uses it for her self-injectable B12 sharps.

[quote Thelnebriati]@anaily
Children can no longer receive surgery in the UK thanks to the push back to this ideology - which you just compared to anti abortion activism.

Why is a generation of children suddenly facing the need to be medicated for puberty? Do you support giving them puberty blockers? How about cross sex hormones? Should we be concerned about these 'treatments' for puberty, or should we ask questions?
Does asking questions and asking for evidence based medicine constitute an attack?[/quote]
What do you mean "no longer"? Under 18 never got gender reassignment surgery while in gids, surgery is only at the adult clinics when the children are 18+.
Clinicians working at both clinics get harassed and hounded by anti gender and anti abortion people/groups.
That decision is between the individuals, not you.

Interesting ommssion of Sonia Appleby winning her case.

@InvisibleDragon

I too noticed this paragraph you quote, and felt sympathy for what she said in regard to the changes in the referral process:

“For years, we had relied on local CAMHS teams to screen and support young people with psychosocial difficulties before referring them to GIDS, and to keep that support in place while we attended to gender concerns. But in 2016, NHS England commissioners ruled that GPs, schools and social workers could refer patients to the service directly. More problematic still, many local CAMHS teams, overstretched and understaffed, withdrew support for these children, reasoning that a well-funded highly specialist service like GIDS should be able to cope.”

And I agree with what you said, @InvisibleDragon
“What we see here is how a major structural change in care provision had a huge impact on quality of care and also contributed to the narrative in which any other mental health issues are folded into the gender dysphoria diagnosis.”

Interesting to see this argument, thanks for this OP.

I was struck by this statement:

A second point of attack is that the service was in the grip of an ideology, one that has taken hold in government, academia, medicine and the law. I disagree.

She claims not to be in the grip of an ideology, while using phraseology like “assigned female at birth”, “queer people”, and ostentatiously quoting Judith Butler? I suppose that just shows that she’s so deeply in the grip of it she is unaware of its presence as an external phenomenon. She has fully absorbed it so it’s now invisible to her. A bit like we often talk about misogyny being so embedded in the world around us that it’s become as invisible to us as the air that we breathe.

And this:

All these issues have been thrust into the spotlight by the refusal of trans-identifying youth to accept the limits of the society into which they were born.

There’s a woman on an ideological crusade, for sure.

Also this seemed like a big old dollop of projection:

A clinician who is convinced that profound psychic disturbance is at the root of every trans identity is not engaging neutrally with her client, but working with a definite end in view. The danger is that her conviction will intrude on, and even overwhelm, her curiosity.

What’s the alternative to believing it’s a profound psychic disturbance? Believing in (trans)gender identity as a “real”, naturally and healthily occurring phenomenon, presumably.

You could easily rewrite that quote:

A clinician who is convinced that trans identity is an objective reality and not a sign of profound psychic disturbance is not engaging neutrally with her client, but working with a definite end in view. The danger is that her conviction will intrude on, and even overwhelm, her curiosity.

The way she threw in the bit about the backlash among Christian conservatives in some parts of the US and Eastern Europe, as if that were the only alternative to fully embracing GI and queer theory, was very lazy and clichéd too.

There was some interesting information in there, especially the background about the way they worked historically and the impact of the reorganisation in 2016 so that CAMHS was now bypassed, but all in all it comes across to me as an essay in denial and avoiding responsibility.

@SpindlesWhorl

Interesting ommssion of Sonia Appleby winning her case.

Isn’t it