Who Trolled Amber? - The Tavistock - Episode 6: The real scandal
Episode Date: September 18, 2023Polly Curtis investigates why NHS England accelerated the closure of GIDS and what the future of the service could look like for children and young people. Listen to the full series today. For th...e premium Tortoise listening experience, curated by our journalists, download the free Tortoise audio app. For early and ad-free access to all our investigative series and daily and weekly shows, subscribe to Tortoise+ on Apple Podcasts.If you’d like to further support slow journalism and help us build a different kind of newsroom, do consider donating to Tortoise at tortoisemedia.com/support-us. Your contributions allow us to investigate, campaign and explore, and to build a newsroom that is responsible and sustainable. Hosted on Acast. See acast.com/privacy for more information.
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A quick warning before we get started.
This episode deals with the subject of suicide.
so I'm back at the Tavistock and the last time I was here it was spring and it was the first time I met Polly Carmichael um it's autumn now it's Halloween next week the leaves coming down
and a huge amount has happened since that first meeting. When I went into that first meeting, I knew that the TAVI was going to close.
I had sources in the NHS telling me that, but I couldn't say it at the time.
We know we're closing. We've got months to go.
We're all carrying large caseloads and doing all the things we need to do
in terms of supporting the development of new services
and keeping things going in our service.
Polly Carmichael was working from home when she heard the news,
when she learnt that the service she's run at the Tavistock
for 13 years is coming to an end.
But it would be 10 days before Polly could tell her team
or the young people they were working with,
ten days before the news breaks
that the Gender Identity Development Service is closing,
leaving thousands of patients and their parents
wondering how it all came to this and what will happen next.
There's much anger and as much...
as many issues as I took with jids it is a key service it's clear that it's
needed because you've got people sat on waiting lists for three plus years if that isn't proof
that we need increased funding we need improved access to healthcare, not diminished and decreased access.
And I just think, like, how have we let this happen?
The thing is, even though closure was on the cards, it wasn't meant to be announced quite so soon.
There was meant to be a period of evidence gathering first.
of evidence gathering first. The Cass Review in Tijids had tasked researchers with looking at the health records of 9,000 former patients to try and find out who puberty blockers had worked for,
who detransitioned and what the true outcomes were. It was hoped that the findings would inform a new service, one based on evidence, not beliefs.
My concern would be that things get driven inadvertently by who shouts loudest,
who's willing to sink lowest, rather than what are the needs of the young people.
The plan was to avoid the pitfalls that Polly mentions,
to design a service based on evidence rather than whoever shouts the loudest.
It was back in April 2022 when I was first told
that the writing was on the wall for the clinic,
that it was just a matter of time.
Then in June, I was told NHS England couldn't wait. It was announcing the closure
imminently. I was told that the service at the Tavistock was becoming unsustainable because it
just couldn't recruit enough people to work there anymore. And there was another thing,
something even more worrying, that put everything else into perspective
and meant that things needed to move
faster. I'm Polly Curtis from Tortoise this is The Tavistock. Episode 6 The Real Scandal. Right back at the beginning of this story,
I started by combing through the Tavistock board papers.
I've come back to this enormous pile of PDFs
again and again throughout my reporting.
They've helped me corroborate information
and understand some of
the decisions that were taken. They're also full of really useful data and there's one thing that's
always stood out. It's the number of what are described as serious incidents which occur across
the Tavistock Health Trust. These are attempted or actual suicides. As I go through the papers, I keep a
grim tally when these are mentioned. It's really sad reading, but perhaps not all that surprising
given that the Tavistock, more often than not, is treating very vulnerable people.
I know from Bernadette Wren that this weighed heavily on the team's minds.
So it wouldn't be surprising if you would have a phone call
from a parent of somebody on the waiting list saying,
I'm really worried about them.
They're, you know, if they don't get seen soon, they will kill themselves.
And some did.
Exactly.
When I first look, I count six deaths of either JIDS patients or those on the waiting list.
Then one afternoon in the summer, I'm at home when I get a call from a senior NHS source
with inside knowledge of the changes being made to gender services.
My source is describing a rapidly moving situation.
My source is describing a rapidly moving situation.
The people setting up the new system are worried about the level of risk facing those waiting to be seen,
and it's forcing them to take action.
The source tells me that they have been told that 15 children or young people have died by suicide while on the JIDS waiting list.
Honestly, I feel a bit sick when I hear this.
I'm really shocked, but I'm also cautious.
The reason I'm cautious is because this issue could not be more sensitive.
Suicide has been weaponised in this debate, as evidenced both for and against trans healthcare. And in general, attributing any cause of suicide is strongly
discouraged in reporting guidelines. We don't know what's in a person's mind when they take
their life. We should be very wary of speculating or attributing a cause. On top of that, I'm missing
a critical piece of information. I don't know what time period the deaths occurred over.
If it's one or two a year, that's a very different story than it would be if all those deaths
happened in a short space of time.
And there's another complication. Anyone who's on the JID's waiting list remains the responsibility
of those who have referred them right up until their first appointment with the Tavistock.
So the Tavistock wouldn't necessarily know if children or young people have come to harm on its waiting list.
I need to be really careful.
My source tells me they've heard this number being used by two different people in large meetings.
And one of them is Polly Carmichael.
When I ask Polly about the number 15, she speaks very generally.
I think we have to be, you know, really careful with data and where it comes from.
So suicide, absolutely, you know, tragic event.
And we have had some suicides and, you know, there's a lot of literature around it.
And it is a stark reminder, I think, of the vulnerability of young people and the responsibility
we all have to be thinking about the impact on young people of our words as well as our actions. This is
a marginalised, potentially isolated, often stigmatised group and sometimes that gets lost.
So that's precisely why I'm asking about the numbers of suicides and serious incidents,
just because I think that gets lost in the story.
And suicides are awful events, but also speak to the wider suffering of a patient group.
Absolutely right to bring it up.
Really important.
Really important we learn lessons from it. But unfortunately, I think the mental health of young people experiencing gender dysphoria is one of the contentious areas. And indeed, suicide has very sadly been another area of contention.
Do you recognise the number 15?
Do you know what?
I really wouldn't be happy saying recognise or not
because I'm aware of that we collect information, absolutely.
There's some more back and forth and then she says it.
I think I know what you're talking about.
By now, things are getting a bit tense.
Can you, like, if we go
off the record for this bit so that we can understand what is known and what is not known,
could we turn it off for a moment? So we stop recording and go off the record.
I have a follow-up call with the Tavistock's press team, which is full of emotion.
They accuse me of sensationalising the
story and gotcha journalism just by asking the question about suicides. They don't like the way
in which I asked it. But from my point of view, it would be irresponsible not to ask about the
deaths of young people. I end up writing to the Tavistock asking them to tell me how many suicides there
have been on the waiting list but when they come back to me they refuse to confirm or deny
the number 15. They do however confirm that they're undertaking an ongoing audit which has
identified suicides on the waiting list. In a statement, they say,
We are unable to publicly share information of any audits
that contain a small number of service users without consent,
as it could lead to the identification of the individuals involved,
and this would be in breach of our responsibility to maintain their confidentiality.
So I speak again to the Tavistock press office.
These conversations aren't recorded, but I keep careful notes.
And what becomes apparent is just how uncomfortable they are
talking about any number of suicides.
The press officer tells me,
our guys would rather run the reputational risk of operating in a shady way
than risk distress to the patient group.
I'm not convinced by their claim that confirming the number of suicides
would compromise patient confidentiality.
The Tavistock Trust does report suicides of people
who are being treated by its gender services.
It's there in their public board papers.
They have even included some identifying details
such as their ages and their expressed gender.
I asked the Tavistock one last time to explain why they believe
confirming the numbers would lead to young people being identified.
They eventually come back with a statement saying
that they received new guidance
in May this year preventing them from sharing data on patient deaths. I ask NHS England and the Care
Quality Commission about the audit and the number of suicides. Neither organisation outright denies the number of 15, both confirm there is such an order in place.
So why is everyone so cagey about the order of deaths on the JIDS waiting list?
This all leaves me frustrated that I can't tell you exactly what this number of 15 refers to.
It seems to me that actual deaths of children and young people matter more than
anything else. So I'm going to be totally clear. Here's what I know. That a number of 15 suicides
of young people on the waiting list for the Tavistock Clinic has been brought up in NHS meetings. That it relates to an audit of suicides or attempted suicides
that the Tavistock has conducted and that is still ongoing.
But there are still important things I haven't been able to prove.
I still don't know what period this was over.
There's a hint in the board papers that there have been a high number of patient deaths relatively recently
because they're still subject to coroner reports.
But I simply haven't been able to confirm the period that the 15 deaths relate to.
So I can't say if it's a high rate for a vulnerable group.
So I can't say if it's a high rate for a vulnerable group, and I would never speculate on why deaths by suicide might have happened.
But I have been told that concerns about suicide rates and that number 15 contributed to the fast-tracking of the closure of JIDS.
And no one in the NHS wants to talk about this. I try to work out why no one will talk about it. There's the confidentiality issues that JIDS talks about and I know that
suicide and self-harm have been weaponised in this realm. But then I hear another theory that
sounds plausible when I ask one of my NHS sources why no one will be clear about the data.
They say, save it for the public inquiry.
This suggestion of a public inquiry, I've heard it from others too,
that at some stage this whole story and the real data hidden between the cracks will be
forced into the open. The stakes are now so now, it's edging towards 8,000 people. Something like 250 new names are added to the waiting list at JIDS.
Right now, it's edging towards 8,000 people.
But as the waiting list grows, the number of appointments the JIDS team is having with patients is declining, and by quite a lot.
1,700 phone calls or meetings with patients were recorded between April and June 2020.
Two years later, a similar period records just over 1,000 such contacts.
So the waiting list is growing, JIDS is shrinking and the new services are still just being planned.
Learning all of this makes me see something quite clearly.
We don't know for certain if there is a scandal here over children who might have wrongly gone on puberty blockers
or were affirmed or socially transitioned.
There just isn't enough evidence yet.
Arguably, there is a much larger scandal though.
One about thousands of young people who've spent years on a waiting list which is seemingly going nowhere. It's a familiar story of NHS scarcity, only this one is compounded by a culture war.
When I put this to Polly Carmichael, she denies the service was becoming unstable.
She defends her team as robust in the face of enormous pressures. But she says,
of course, it is unsustainable having one service with that number of referrals. I don't think anyone would
say that it wasn't. So clearly more resources were needed. So does the blame for the ultimate
failure of the Tavistock lie with NHS England? Did it fail to commission the right services in the right amounts at the right time?
I put that to NHS England.
They tell me they are currently consulting on the proposed services
and don't want to say anything new while that consultation is ongoing.
It feels like another pretty cagey response to me.
I do have to say that Hansard and the record shows that Penny Morden,
as the bill minister and the minister responsible for passing that legislation,
did oppose and did resist the inclusion of the word woman and the inclusion of the word mother.
It's now summer 2022 and the trans rights route is creeping into the Conservative Party leadership race to replace Boris Johnson. So Penny, my question is, if you become PM, would you reverse this and make sex self-ID law?
Penny Morden is attacked for her support for trans rights.
But what we were looking at was the Gender Recognition Act
and it's where Le Braverman is taking on schools over trans pupils.
The problem is that many schools and teachers believe incorrectly
that they are under an absolute legal obligation
to treat children who are gender questioning
according to their preference.
It sets the stage for the final part of this story.
How politics intervened in the Tavistock even after its closure had been announced.
Much of this happens behind closed doors.
In September, I'm told NHS England is poised to publish a draft document outlining the new gender services that will launch next year, what will be offered to who and how it will work.
But it doesn't emerge.
Then, in October, Reuters runs a story with the headline,
Exclusive NHS drafts stricter oversight of trans youth healthcare.
The story suggests a tightening up of the service, including new rules to refer young
people to social services if they're getting hold of hormones privately. I speak to the Reuters
journalist who wrote it. They tell me how the draft document had been very briefly published
on the NHS consultation website one day in September
and then mysteriously removed.
Within days, I get a call from one of my sources,
a senior NHS manager with knowledge of the process.
And they're angry, properly angry.
They're furious because, they say,
people in government are interfering in the new guidelines for the service.
In their view, this is a medical treatment
which should be decided by NHS specialists and clinicians, not politicians. This is all playing out amid the
drama of the short, trust-led government. Therese Coffey is the health secretary, and she's known
to be socially conservative. She hasn't publicly stated an opinion on trans rights, but she opposed gay marriage. Then a second well-placed NHS
source confirms that there have been political interventions.
While this is going on I learned something else interesting. Polly
Carmichael is now on the working group helping to design the specifications
for the new service. Now this might surprise her critics despite her service being so roundly
criticised from all sides she's still one of the few experts in this subject at a clinical level.
I have been told by two credible sources that there have been political pressures
from the top on this process of producing the service specification. And I guess that matters
because this is a medical pathway, this is a treatment pathway,
and where is the line between politics and how we treat children?
I really would hope that politicians, media and so on,
I would like them to have the integrity to understand
that there are young people at the heart of this.
And if it were me, I would be looking for expert advice.
But that's your optimistic view. That's what you hope would happen.
Yeah. I mean, I'm a realist and I know that doesn't always happen.
And we just need to go back to the evidence and involve
people who either by lived experience or through their professional lives have worked in this field.
Politics doesn't really have a place, does it, in thinking about or deciding actually what may or
may not be an appropriate medical pathway for a
particular group of young people.
When the draft plans are finally published in full in
late October they're greeted with dismay by trans support groups. Under the plans
you can only get access to puberty blockers if you agree to be part of a
research trial
in which your data will be recorded and you'll be followed up for years afterwards.
It also questions whether young children should socially transition. So that's not about medical
intervention, but about whether they should be supported to present as their preferred gender and change their names.
It's worth picking them side by side, isn't it?
I obtain a copy of the guidance that accompanied the first leaked version of the report,
and I read it next to the final version.
And I'm looking through this and I can't see any reference to social transition.
It's just not there.
What this is telling me is they published a version in September,
quickly took it down, thought about it again,
and then one of the things that changed was this caution around social transitioning,
which went further than anyone was expecting.
The guidance on social transitioning is surprising. It's hard to see this is something that clinicians
could really control. Not least because many young people arrive at the clinic
having already socially transitioned.
And isn't that their right?
Challenging people's right to socially transition
feels like new territory.
I know that there were interventions from politicians,
not from medics, that led to changes.
And they strike me as quite substantial changes.
These new services will still be operating in a grey area that lacks evidence,
where culture and now politics are influencing more and more.
What my sources have said is that there was a political intervention at the end of September
and a political conversation that led to those changes.
And that was over the course of that 50-day trust government.
I don't know what exactly happened behind the scenes in those wild days of the trust government.
But I think there probably is a line across which politics
and medicine shouldn't mix. We put all of this to Therese Coffey. Her office didn't
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Steph Preston spent years at JIDS and then was referred to adult services in April 2020 just before they turned 18. They never got the puberty blockers they wanted.
At 19 they finally began taking oestrogen and have recently embarked on a course of speech
and voice therapy. And when you look back at those three and a half years,
why do you think now you weren't referred for puberty blockers in that time?
I think it's because of the turnover.
I still think because I was seen by five different clinicians
and each wanted to ask me both the same questions and also different ones.
It felt like things were just getting pushed back and back and back.
And that was the driving force behind.
So it wasn't their doubts about you.
It was just that each one had to satisfy their...
Exactly.
It was very much the case.
Well, I've only known you a couple of months.
I need to feel confident in this decision.
I was
referred to UCLH for fertility preservation and I felt like if I'm doing this I'm aged 15 at this
point how is this not proof enough that I'm committed and I thought I've even taken your
advice gotten the referral sat in the waiting room with middle-aged men,
and you're still questioning me on this? Yeah, it was difficult.
Delay after delay meant that Steph aged out of JIDS before they could take a medical path.
Their experience is actually more usual than not not and it's the reason that the
tavistock has lost support from trans communities like thinking about that building the people you
saw inside the whole experience of that how do you feel about that how does that idea make you feel
now i don't know how i got through it i don't know how i'm here today. Not to get meta and all kind of emotional and
sloppy, but I don't know how I survived that. Do you wish you had been referred for puberty
blockers when you were 14? Yeah, I wish that, say when I was 14, 15, I wish I'd been referred
to puberty blockers because it wouldn't make life so difficult for me now
in terms of presenting how I want to.
I do wish that referral had been done like various people said it would.
But Steph's identity did develop and change more
over their years of back and forth and questioning
and more questioning with the Tavistock.
Funnily enough, after all this complaining about them probing questions,
it did help me identify that I was non-binary
because I then went away and did the research
and seeing that non-binary was a thing
and kind of thinking, oh, hang on, this feels a lot more accurate.
Ultimately, Steph did medically transition,
but as a non-binary person rather than a trans woman.
Maybe, as Steph says, the time and space and exploration that happened at the Tavistock actually helped.
Sandra's child, meanwhile,
hasn't got the blockers that their mum is so fearful of and is still a patient at JIDS in its final months.
I'm just hoping that growing, gradual maturity,
you know, if I can keep her off these hormones and puberty blockers,
that she will gradually mature out of it. But I don't know whether she will or not, partly because of the social
transitioning and partly because it's just everywhere is affirming, you know.
The whole situation has left Sandra's family in turmoil.
I'm trying to minimise any damage that it does to our relationship because I know from other parents
the kids are usually older, you know, they're in their 20s
they've cut off contact with their families completely
and then some of them are in a much worse situation than I am
than we are
so I don't want that to happen
I think maintaining as normal a family life as you can is crucial.
How do you do that?
Just getting on with everyday life.
And we tiptoe around the subject.
As long as we don't discuss it, everything's fine.
And is she reconciled with that as well, do you think?
No.
Because she wants to get onto puberty blockers and testosterone and eventually have a
double mastectomy. And I'm mean and horrid because I'm trying to prevent it. And if she does
transition medically, physically, how do you think that will affect your relationship?
Your relationship?
I don't know. I don't know.
It will be very hard. Very hard.
If she goes on testosterone, I... I...
Horrible.
I can't bear to think about her sounding like a man and, you know, the voice breaking.
And, you know, it's just too ghastly to think about, really.
And I make myself think about what I would do if I was watching my child making what I believed was a terrible and harmful mistake.
And I wonder if I would sacrifice our relationship to save them. It's all consuming.
It's almost impossible to do anything else. It completely takes over your life. It's
almost impossible to think about anything else really.
I don't think I could do it. I have no idea if that makes me a good or a bad parent.
I think it just shows how impossible parenting can be.
So what happens next?
Eight new regional services are expected to launch early next year,
based in hospitals and led by doctors,
rather than psychologists.
That decision, back in 2016,
to allow more people to refer to the clinic,
will be reversed,
so only medics and mental health workers can do so.
Blockers will still be offered
if young people agree to be part of a trial.
I think the selection criteria that will dictate who goes on that trial
will be the next battleground for campaigners.
The hope is that these new services are better funded, more holistic,
but it could still take as long as five years to deal with the backlog in the system.
The waiting list will be a fixture for some time yet.
The truth is that these new services might not be so different from how JIDS saw itself.
A mixture of exploratory therapy and a small number of patients going through to an endocrine service.
and a small number of patients going through to an endocrine service.
And they still won't have the evidence to say what the best course of treatment really is,
and they will still be subject to the same intense scrutiny that JIDS faced.
What I think, after investigating the 10-year rise and fall of the Tavistock's gender clinic is that they failed in many ways.
They should have been better at the research and gathering the evidence.
There was too much variation in the service
and some clinicians were more affirmative than others.
Elements of the service might have become too ideological
as the middle ground that they tried to occupy shifted beneath them
and became impossible to hold.
But I can't see how they could have succeeded.
Not so long ago, they were just a handful of curious clinicians
sat round on children's chairs in a broom cupboard,
talking for hours about a tiny number of cases.
That model could not sustain the rocketing referrals,
the polarisation of the debate, or the scrutiny that brought.
But there are things they can't be blamed for.
The waiting list is not their responsibility.
I think that's on the commissioners
at NHS England. And what of Polly? Is it hard to let go? No. No, it genuinely isn't. I mean, you know, what am I letting go of?
And I'm not letting go.
I've spent hours in rooms with Polly,
trying to understand how she existed at the heart of this war
and what her responsibility is.
I asked Bernadette at one point, off mic,
why she thinks Polly keeps going.
She told me that it's a mystery to everyone who knows her.
I know Polly is dedicated to the service, but she does seem to wear that immense responsibility
lightly. Would you have done anything differently? Oh, you've asked me that last time. I mean,
I'm sure there's loads of things I'd have done differently. But what would you have done differently?
If I say anything, it'll just be out there, won't it? As you know, and picked over and
amplified and so on. You know, I think I've learned a lot. And I think I continue to learn.
There are things I wish I'd done maybe. And, you know, in a way, I know that I have integrity. And, you know,
ultimately, I genuinely want the best for my clinical team and for the young people and their
parents. And I think back to why I first wanted to interview Polly Carmichael. I remember that the reason I wanted to interview you
for all these hours was sparked at the moment
where I watched you on that Channel 4 documentary
and you talked about the culture moving faster than the science.
And over the course of this year,
it feels like you've had the science kind of edging along
you've had the culture take over and now the politics has kicked in I mean we seem potentially
a little bit stark insofar as you know there is evidence being produced and but actually there's a singular
lack of interest in evidence unless it supports the point you're trying to make you know maybe
what's taken over actually is a sort of toxic debate and I just think that's really unhelpful and disingenuous in terms of the
young people who are sitting in the middle of this. But I think that scrutiny has also been
essential to bring all this to light and as much as I find her answers maddening and evasive I think maybe she's as right as anyone
and even brave to still be there
fighting for some grey space in a black and white world
sitting in the wreckage of a service that failed so spectacularly
in a battle it was impossible to win. And maybe the whole story of what went wrong
at the Tavistock tells us something bigger about the ideological age we're living in,
where these battles are dividing generations and breaking families, and how these arguments
at the extremes don't allow for the truth, which is nearly always in that grey area.
Because humans are complicated and contradictory and changeable.
And our polarised times aren't working for something as complicated as what it is to be human.
This series was written and reported by me, Polly Curtis.
The producer is Katie Gunning. The executive producer is Jasper Corbett.
The Tavistock is a Tortoise production. Thank you.