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Feminism: Sex and gender discussions

Tavistock puberty blocker study published

393 replies

PaleBlueMoonlight · 11/12/2020 20:56

www.bbc.co.uk/news/uk-55282113

Finds 43/44 (98%) progress from PBS to cross sex hormones

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NeurotrashWarrior · 12/12/2020 11:37

I still find it horrifying that they went ahead with the study even though nearly 50% of the participants were assessed as having autistic traits, and didn't even mention this fact in the paper, apart from a handwaving "The Social Responsiveness Scale (SRS) was a baseline only assessment of autistic traits; these data will be analysed in the future."

Quite, if they weren't diagnosed, why did that make them suitable candidates?

YouNoob · 12/12/2020 11:53

@Thingybob

It always strikes me how differently these kids are treated to how any other child presenting as severely distressed would be treated.

GIDs say they give ongoing therapy and psychosocial support but how intensive can that be when appointments seem to be 3-6 monthly at best. Do they ever work with localised CAMHS services?

As puberty blockers are a monotherapy does that rule out any form of antidepressant which would normally be prescribed to those severely distressed?

And as others have said why are they not involving specialist teams when conditions such as ASD are suspected?

Even if they are referred to or working with CAMHS, some or most children still wouldn't get the support they needed as CAMHS itself is under funded and over stretched.

Additionally, does anyone know what kind of support CAMHS provides,ie is it still affirmative model?

sultanasofa · 12/12/2020 11:56

@everythingthelighttouches

So much to unpack here. Have only briefly read this. It’s going to take some time to dig into.

It seems like a poorly written paper with very odd inclusion of information about the pressures they were under. I can imagine it surviving peer review.

I hope journalists are now enlisting the expertise of unconnected Statisticians and
Psychologists for comment.

I would also like to hear from a clinical trials expert. This should be a registered clinical trial. Maybe it’s published in this paper but should be elsewhere.. where is the trial protocol?

It seems to me they might be in breach of their own trial and trial regulations, if after one year some of the criteria were worse (suicide scores). Is this correct? I haven’t read the paper through yet. I’ve just seen some of you comment about it on here.

In any other trial, if the experimental drug was shown to lead to a worsening of outcomes at any point, the trial should immediately be halted and reported to the regulators.

Critical question: did they breach their own trial protocol guidelines on safety and report increased suicide measures to the regulator as a Serious Adverse Event ??

There don't appear to have been any serious adverse events and suicidaility was not reported as an adverse event at all.

All adverse events were minor and anticipated, i.e. they were previously described in study participant information and/or noted in the triptorelin medication package inserts. Anticipated adverse events were common in the first two years, particularly mild headaches or hot flushes which were reported in 25% at 0-6m, 23% at 7-12m and 22% at 13-24m. Moderate or severe headaches and/or hot flushes were uncommon. Birth-registered females with distressing headaches or hot flushes were offered ‘add-back’ oestrogen therapy, and two accepted treatment briefly with very small doses of oestradiol, which was effective in reducing symptoms. Mild fatigue was reported by 5-8% over the first two years and no participants reported moderate or severe fatigue. Sleep problems, mood swings and weight gain were reported by very small numbers and in each case symptoms were mild. Adverse events were less common after 12 months of treatment.

Here is more information about how suicidality was assessed using the Self-harm index. They asked both child and parent to rate 'I deliberately try to hurt or kill myself' and 'I think about killing myself' on a scale of 0 to 2, and then added the two responses together.

Self-harm actions and thoughts were assessed through two questions in each of the CBCL (parent report) and YSR (self-report): Item 18 (I deliberately try to hurt or kill myself) and Item 91 (I think about killing myself). Possible responses for each question were 0=not true, 1=somewhat or sometimes true, or 2= very true or often true. We followed previous studies in calculating a self-harm index score to avoid multiple statistical comparisons across correlated categorical-response variables. The index was calculated as the sum of the two items in each scale to create an index from 0 to 4 for each of the CBCL and YSR,[30-32] a higher score indicating greater self-harm thoughts and behaviour.

The self-harm index was one of the three outcomes that they chose to perform formal statistical testing on. They report:
There were no significant changes in parent-report CBCL self-harm index scores from baseline to 12, 24 or 36 months, nor for self-report YSR self-harm index scores.

Here is the data, which is presented using median and (interquartile range). I am not a statistician, but presenting medians seems like a way to smooth out the data so that any trends are less visible? There is no child-rated data at the 36 month timepoint, and no reason is given for this.

Parent-rated self-harm index
Baseline n=43 0 (0,1)
12 mths n=40 0 (0,1)
24mths n=20 0 (0,1)
36 mths n=11 0 (0,1)

Child-rated self-harm index
Baseline n=43 0 (0,1)
12 mths n=39 0 (0,2)
24mths n=15 0 (0,0)
36 mths - no data included

EndemicPanda · 12/12/2020 11:59

So does anyone with legal knowledge know how this will affect the appeal? To my legally ignorant eye, it looks pretty damning. But I've heard something about how you can't introduce new evidence at the appeal stage. This would presumably be new evidence.

Appeals to the Court of Appeal have to be on a point of law. The idea is that the Court of Appeal don't look at new evidence, they accept any factual findings made by the High Court and just consider whether the law was applied correctly (eg did the High Court apply the principles in Gillick correctly?). So by default this won't have any effect.

Applications can be made to adduce new evidence, but the Court of Appeal's permission is needed. I have had such applications granted before by the Court of Appeal, but in cases that originated in the specialist Tribunals which are a bit different. I wouldn't have thought that the Tavistock would seek to use this report anyway as it doesn't seem to help their case and the High Court have had some kind of summary of the study already (see paras 25 and 73 of the judgment). If there is something relevant in the study that wasn't revealed to the High Court, then this raises the question as to why it wasn't disclosed to the High Court in accordance with the duty of candour (I don't think the fact it was still being peer reviewed is a very good excuse on its face).

If Kiera's team want to rely on it, the Court might be more sympathetic if they think the Tavistock wrongly held it back from the High Court.

I'm hoping that permission will just be refused though.

TheGreatWave · 12/12/2020 12:03

@Thingybob

It always strikes me how differently these kids are treated to how any other child presenting as severely distressed would be treated.

GIDs say they give ongoing therapy and psychosocial support but how intensive can that be when appointments seem to be 3-6 monthly at best. Do they ever work with localised CAMHS services?

As puberty blockers are a monotherapy does that rule out any form of antidepressant which would normally be prescribed to those severely distressed?

And as others have said why are they not involving specialist teams when conditions such as ASD are suspected?

CAMHS is a major issue, any sniff of a co-mobidity and they don't want to know, even if the presenting problem is unrelated. If CAMHS can wash their hands of a child then they will.
Thingybob · 12/12/2020 12:10

Yes Yournoob, I know CAMHS is seriously underfunded and it's been several years since I had any dealings with them but have previously seen them pull out all the stops and throw almost unlimited resources and time at any child they deem to be a serious risk. Previous reports on here seem to show that they don't want to get involved at all once a child is under GIDS.

PlantMam · 12/12/2020 12:15

I’ve started to make a sort of index of the board meeting minutes, so that we have a vague idea of what was discussed where. It’s a bit, well, ‘surprising’, so far.

From 2011-2015
GIDS is hardly mentioned at all, beyond the data for stuff like budget, staff levels and ‘Did Not Attend’ for appointments numbers. I will revisit these early ones after I’ve completed the ones with more substantial mentions.
If the month isn’t listed below it’s either because there was no meeting that month or the meeting barely mentioned GIDs.

2015
June: Big section on GIDs, including a list of staff, discussed here already
July: two teens on blockers speak to the board.
October: Leeds has 8 staff and 379 patients, bigger premises have been found
November: recruiting more GIDs staff - underspent the staff training budget

2016

January: GIDS had been understaffed, but was now fully staffed and using additional sessions to catch up on demand

February: ‘The Trust has made it mandatory for all clinical staff from Child and Adolescent Mental Health Services, GIDS, Portman Child and Adolescent Service and the Adolescent and Young Adult Directorate to be trained in Safeguarding of Children Level 3, where staff are required to attend Level 3 training every 3 years. (In addition, all other Trust staff regularly attend Safeguarding of Children Training, including Level 1 and 2 training.)’

March: ‘Much of the work which the Trust is engaged in has a strong ethical focus including areas of cutting edge practice such as GIDS. Clinical ethics in the field of mental health is less well developed than other areas of clinical practice and there is the opportunity for the Trust to establish a reputation in this area.’
‘The Gender Identity Development service for under-18s, commissioned nationally, has recently moved its Leeds base to larger premises. Overall activity has to be managed at the present contract level, which allows for the rapid growth in access in recent years but not for further growth. The contract is under review, as the only GIDS in the country, demand has been outstripping capacity for the last six months. The service model is under review, partly owing to demand, and partly owing to the changes in specification’

April: Lots of tables about waiting times and patient ages etc (for all of T&Ps services). I think they meet the 18 week target on most services except GIDS (although I can’t really see the tables on my device)

May: ‘For the coming year the funding for GIDS was £1M above budget, and though there would be additional costs this was significant. Other contracts had turned out at least as well as expected, but there was uncertainty over a couple, for example Barnet YPDAS was going out to tender. A re-evaluation of the Trust’s assets would lead to an increase in the dividend the Trust had to pay, and this had only been partially accounted for in the budget.’

‘More good news was that all contracts for the year had now been signed, and there had been a significant uplift for GIDS, which would allow them to increase staffing to address the demand and waiting list. GIDS was now the 3rd largest service in the Trust, and to ensure they supported it properly a task and finish group would be formed to draw key stakeholders together.’

‘Chief Executive’s Report

  1. Raising our profile
1.1 We held an event with staff on 4th May to consider issues around how we can best work together to raise the profile of the Trust and of our contribution to public debate. 1.2 On 13th May the Today Programme included a substantial feature on our GIDS service including excellent interviews with a service user and parent from the service and Bernadette Wren, the Trust’s Head of Psychology. We had also been successful, earlier in the work, in securing a substantial feature on the service in the Evening Standard. 1.3 Both features provided the opportunity to set out an informed and positive view of the issue of gender dysphoria and the work of the GIDS service.’

June: ‘Chief Executive’s Report. Mr Jenkins introduced his report by noting the powerful coverage of GIDS on the Today programme, which was a good example of the profile raising work the Trust needed to be doing more of. Mr Holt asked whether it was possible to put the programme on the website, and Mr Jenkins confirmed that this was possible with the new website.’

Lots of talk about IT system case notes, which I believe generates the graphs we now see on GIDs foi requests.

July: ‘GIDS Named Patient Agreements (NPA’s) and the Day Unit over-performing against targets.’
[the waiting list for]‘GIDS has increased from 250 patients waiting in Q4 to 427 in Q1.’

September:GIDs to pilot Skype appointments ‘in Spring’
‘During the summer we have had to make a number of accommodate changes to find space for the significant number of new staff we have recruited for the GID service.’
‘Century Films
8.1 The project, working with Century Films, to produce a series of three documentaries for Channel 4 about the work of the Trust is approaching completion. We currently anticipate the programmes to be broadcast in November.
8.2 The programmes cover three aspects of our work with young people. This includes our school Gloucester House, our GIDS service and our community based CAMHS service.
8.3 We have seen some of the material and have been assured that Century Films have succeeded in making sensitive and high quality documentaries which will both showcase the work of the Trust and make a contribution to breaking down the stigma for young people experiencing mental health problems.
8.4 We have developed a plan for how we can build on the publicity which the documentaries will create to promote the work of the Trust.
8.5 We have also learnt that the Radio 4 documentary “Mending Young Minds” which featured the work of the Trust and which was broadcast in August/September 2015 has been shortlisted for the 2016 Mind Media Awards.’

October:
‘We have now seen the second film produced by Century Films, on this occasion about our GIDS service. This was again of a high quality and covered the issues involved with great sensitivity.
3.2 We are still expecting the films to be screened at the beginning of November. We have developed a plan for how we can build on the publicity which the documentaries will create to promote the work of the Trust.
3.3 The radio documentary “Mending Young Minds” produced last summer about the work of the Trust has been shortlisted for the 2016 Mind Media Awards.

‘Waiting time breaches within Adolescent and Young Adults and Camden CAMHS Services are reducing. The trajectory for other CAMHS, GIDs and Westminster services continues to increase.’

‘The GIDs service has an 18-week waiting list target which continues to be breached by ~66%. Referrals increased by 100% last year and are up by about 23% for the first 6 months this year. GIDs have a detailed action plan which includes significant administrative and clinical recruitment which continues. Until September the existing staff were managing referrals with no extra clinical resource. This is because the recruitment process takes time. The administration team is also working on innovative ways of managing the waiting list. Over 17 year olds present a particular challenge due to the long waiting list in adult services which also differ in their protocols. The Leeds base have piloted a group first appointment for over 17 year olds with excellent feedback. This will be rolled out in London.’

November:M‘Prof Bhugra had visited Abu Dhabi on mental health day, and seen the services that SLAM had set up there, which should be an inspiration for our own international ambitions. He noted that Prof Lamb from Hong Kong university, who was setting up a gender service there, would be visiting GIDS in January, and there were opportunities both in Hong Kong and on the mainland.’

‘Prof Bhugra commented that he had reviewed the Trust’s complaints, and 2 out of 3 were concerned with GIDS waiting times, all of which had been handled very well. Dr McPherson commented that waiting times were likely to be increasingly used as a tool for judging performance in the future. Mr Jenkins noted that the increase in activity shown in the first table, and commented that this created an increasing pressure on waiting times, which did seem to be getting worse. GIDS should improve with the increase in staffing, but overall there was best practice to be shared over practical measures that could be taken to see patients as soon as possible and support them during their wait. It was agreed that a report on waiting times, including both trajectories and granularity, should come to the next board.’

Stuff about 17+ pilot on page 151

(I’m going to put up the Christmas tree now but will do 2017-2020 in batches when I have time and brain space)

tavistockandportman.nhs.uk/about-us/governance/board-of-directors/meetings/

NeurotrashWarrior · 12/12/2020 12:15

Additionally, does anyone know what kind of support CAMHS provides,ie is it still affirmative model?

Most camhs are localised so it will
Be nhs trust dependent, however from what I've seen mermaids and gires and any other National or local lgbt charity are often referred to for advice and support. I think camhs themselves would try to refer in to GIDs ASAP. The charities providing extra "support" in the mean time.

Of course most of the charities promote affirmative care.

I also know that an nhs trust can commission supportive services for schools if there's an identified high number of referrals coming through eg sign them up / pay for them to do the stonewall champions etc.

Unless a particular individual with the commissioning power knows about the issues there, they wouldn't think twice about doing so. (Someone I know described all this to me; I had no idea nhs could fund some of this stuff into schools.)

The whole thing is a circular shit show.

NancyDrawed · 12/12/2020 12:15

Additionally, does anyone know what kind of support CAMHS provides, ie is it still affirmative model?

I know of a child who was seen by CAMHS earlier this year and was diagnosed with 'acute GD' and referred on, so anecdotally it would appear that yes it is. My first thought when I was told was lockdown = online grooming/coaching. I want to weep for this child, who until lockdown never showed an inkling of being anything other than an unremarkable member of their sex class, but their parents are totally affirming too (also groomed, perhaps?)

NeurotrashWarrior · 12/12/2020 12:19

This is the issue; the public (and some professionals) are now grouping themselves into "believers" or not.

For example the two parents on WH last week.

This means how you're dealt with by parents, teachers etc can be different. And likely CAMHS too, especially if they've been rainbowed.

YouNoob · 12/12/2020 12:22

@Thingybob

Yes Yournoob, I know CAMHS is seriously underfunded and it's been several years since I had any dealings with them but have previously seen them pull out all the stops and throw almost unlimited resources and time at any child they deem to be a serious risk. Previous reports on here seem to show that they don't want to get involved at all once a child is under GIDS.

So GIDS refer children to CAMHS for mental health support but CAMHS don't necessarily provide that support? I assume CAMHS or families let GIDS know when this happens? In which case, what exactly happens next? Further, GIDS must have this information somewhere (even if it's in individual patient records) so it would be enlightening to see how many patients under their care receive ongoing support (within GIDS and out)

MagicalThinking · 12/12/2020 12:23

Here is the data, which is presented using median and (interquartile range). I am not a statistician, but presenting medians seems like a way to smooth out the data so that any trends are less visible?

There's no right and wrong answer to the choice of medians vs means for presenting the average but median tends to be used when the data is skewed or there are a small number of outliers (think salaries where mean income is skewed upwards by a small number of very high earners). The issue is then that this extreme data isn't presented and it can be useful.

Here, it seems that most of the children are scoring low on the self harm index but there is no way of knowing if there are no children getting scores of 2+ or there are nearly a quarter of the children getting scores of 2+.

Presenting it like this also seems to negate the regularly rolled out statement of "better a live daughter, than a dead son" as the self harm scores seem low even at the beginning of treatment.

YouNoob · 12/12/2020 12:26

Thanks for that NeuotrashWarrior, yes of course, they would've referred to Mermaids etc.

NeurotrashWarrior · 12/12/2020 12:29

So GIDS refer children to CAMHS for mental health support but CAMHS don't necessarily provide that support? I assume CAMHS or families let GIDS know when this happens? In which case, what exactly happens next? Further, GIDS must have this information somewhere (even if it's in individual patient records) so it would be enlightening to see how many patients under their care receive ongoing support (within GIDS and out)

Prof Michele Moore has looked at this a lot. And received a lot of flack for asking these questions.

I think the general approach in camhs has been that the GD needs "treatment" before the other issues.

YouNoob · 12/12/2020 12:29

PlantMam thank you for your work. 🙏

PlantMam · 12/12/2020 12:29

This 2017 NHS service specification makes it clear that they expected CAMHS to be providing localised services alongside GIDs’ national ones:

www.england.nhs.uk/wp-content/uploads/2017/04/gender-development-service-children-adolescents.pdf

I’m trying to locate the earlier versions (from the weird footer, assume editing mistake, it looks like it was possibly issued in 2013 & 2015).

YouNoob · 12/12/2020 12:35

I think the general approach in camhs has been that the GD needs "treatment" before the other issues

God, it really is a shit show isn't it?

NeurotrashWarrior · 12/12/2020 12:38

You that's what Prof Moore found; obviously all cases are different.

NeurotrashWarrior · 12/12/2020 12:38

There are some regional clinics:

www.nhs.uk/Services/hospitals/Services/Service/DefaultView.aspx?id=292299

NeurotrashWarrior · 12/12/2020 12:40

That's adult though I think.

NeurotrashWarrior · 12/12/2020 12:43

There's a unit in Leeds. flipbooks.leedsth.nhs.uk/LN004504.pdf

I think the support via CAMHS is mostly local charities. Some run youth groups etc. That's what the mother on Woman's hour described on Thursday.

Thingybob · 12/12/2020 12:47

Thank you for clarifying that Neurowarrior

NeurotrashWarrior · 12/12/2020 12:50

I don't know for sure; would CAMHS offer counselling? Seems almost impossible to get that.

Also, that leaflet seems to be, "you come to us and we put you on blockers."

PlantMam · 12/12/2020 12:54

GIDs is just London and Leeds (Leeds joins the London staff meetings via video, so it’s a true satellite) and they also provide clinicians to Dublin (Dublin is commissioned using the treatment abroad scheme).

Welsh kids go to London and NI have a thing called KOI (as far as I can tell, their staff are trained by and mentored by GIDs) www.familysupportni.gov.uk/Service/5033/lgbt/gender-identity-clinic--camhs-belfast

All Scots kids go to Sandyford in Glasgow.

————-
There are 7 adult GICS for England and Wales: www.gires.org.uk/nhs-gender-identity-clinics/

Plus two new 3 year pilots (Manchester- Indigo Gender and London - Trans Plus) run by third sector type orgs and funded by the NHS.

www.gmcvo.org.uk/news/indigo-gender-service-–-new-nhs-adult-gender-dysphoria-service-greater-manchester

wearetransplus.co.uk/our-service/

And a new welsh service (all welsh patients used to be sent to London, now they only go to London for surgery):

gender.wales/

Scotland has 4 adult clinics and unlike England, everyone goes to their nearest: www.ngicns.scot.nhs.uk/gender-identity-clinics/

sultanasofa · 12/12/2020 12:54

@MagicalThinking

Here is the data, which is presented using median and (interquartile range). I am not a statistician, but presenting medians seems like a way to smooth out the data so that any trends are less visible?

There's no right and wrong answer to the choice of medians vs means for presenting the average but median tends to be used when the data is skewed or there are a small number of outliers (think salaries where mean income is skewed upwards by a small number of very high earners). The issue is then that this extreme data isn't presented and it can be useful.

Here, it seems that most of the children are scoring low on the self harm index but there is no way of knowing if there are no children getting scores of 2+ or there are nearly a quarter of the children getting scores of 2+.

Presenting it like this also seems to negate the regularly rolled out statement of "better a live daughter, than a dead son" as the self harm scores seem low even at the beginning of treatment.

Clearly it's fantastic that most of the children are scoring low on the self-harm index both at baseline and throughout the study.

However if one is exploring the impact of PBs on suicidal thoughts, I'd suggest the outliers are the most important group of all to look at.

I'd have preferred a bar chart showing the spread of responses for each of the 4 timepoints.

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