Clinics forced to share data on children who took PBs .. at last

Yes, and the people targeting them with threats and coercion would be the TRAs although they’ve been told it would be us.

@JustSomeWaferThinHam I do apologise. I have re-read and I have no idea how I misread the substance of your post so badly. Please ignore my response!

Ah, that makes sense. So they are just ensuring that no individual will be accountable and are happy to play with taxpayers money like the various hospitals operating unlawful policies and unlawfully discriminating against their employees?

So essentially they can harm kids on a mass scale and gets away with it? A dangerous game.

Yes, I wonder how the NHS are protecting themselves against misdiagnosis and lawsuits for compensation for ‘Never Events’

Participating in smear campaigns against any senior doctor that dares express an opinion that sex is immutable and sometimes important? Obviously this is purely hypothetical and not an accusation.

To continue the hypothesis... It's the ultimate "double or quits" strategy, as it's cumulative. That's just one step in the strategy.

Once you've started doubling down on something - for example, by already giving a trial the go ahead if you're the MHRA - you're putting the quit option further out it reach. If you're doubling down at that point, it's going to take double double the effort than it would have done before. Because the first double-down was when you gave the trial the go-ahead in the first place (despite the existing evidence of significant safety concerns).

Anyone in any such hypothetical scenario would have to work super hard to come up with ways to keep this out of the courts.... just long enough for each individual person who has been involved to find reasons why it wasn't their fault.

Luckily for any such person, there's a game of Accountability Pass the Parcel that can be played between individual hospitals (and their policies), trusts, NHS England and the Department of Health and Social Care. None of them will ever need to open the parcel. So there will undoubtedly be lawsuits and payouts, but nobody will ever need to be accountable for what went wrong.

Edited for clarity.

I think you are seeing conspiracy where disorganisation is a much more likely explanation.

Example: a patient discharged from gender clinic on T develops chronic painful urogenital atrophy. But this patient has changed their NHS number and sex marker. They are not known anymore to the gender clinic. The GP knows they are trans, although it is not recorded on the patient's notes (which are redacted of any previously identifying sex information) thinks: this is probably a result of the T. Writes to the gender clinic. Who say, this is not our problem, please ask the urologists and the pain clinic for advice.

Where is the joining up of gender - treatment - outcome ? It isn't that the data is hidden. It simply doesn't exist.

Available resource in the National Back Office (NBO) – this is a specialist team that can trace health records “by hand” in cases involving incomplete information or where details are ambiguous (e.g. distinguishing between individuals with similar details). Their help may be needed; until the data is seen it cannot be known how much time/effort may be needed from them. This might delay the work. NB A member of the NBO team has been part of the multidisciplinary team since its inception.
It is not known how easy/difficult it might be to find and match records for the same person held under different NHS numbers until the quality of the data is known (i.e. after it has been uploaded to NHS England).

Time and effort will be considerable. I can tell them that for free! I can't understand from what you posted (as I am thick or tired) what the confidentiality bit implies - can patients individually opt out or not? This (This allowed the UoY to begin to work with trusts on implementing the three-month period that had been agreed upon to allow any patients who wished to do so to opt-out of having their data used in the research) implies they can which would be hugely important in terms of bias.

Ooo! Were those audits published?

Yes: here in 2022 https://www.mdpi.com/2227-9032/10/1/121
and here in 2025 https://www.mdpi.com/2227-9032/13/4/353
Both open access.

Yes, I wonder how the NHS are protecting themselves against misdiagnosis and lawsuits for compensation for ‘Never Events’

For a start, what are the robust and well researched diagnosis guidelines that would lead a clinician to prescribe puberty blockers/cross sex hormones?

I know there are additional waivers and special conditions for drug trials but no one can sign away their rights and any trial still has to have patient safety as its utmost priority. I just can’t see how they can demonstrate that is the case with this trial.

From the summary.

Key Aspects of NHS Never Event Compensation

• What Constitutes a Never Event: These are patient safety incidents that are "wholly preventable" because guidance or safety recommendations are available at a national level and should have been implemented.
• Examples: Wrong-site surgery (e.g., operating on the wrong limb), retained foreign objects post-surgery (e.g., swabs, instruments), misplacement of gastric tubes, or administering incorrect medication.
• Proving Negligence: You must demonstrate that a duty of care was breached (the event happened) and that this breach directly caused, or made worse, an injury (causation).
• Compensation Factors: Payouts vary based on the severity of the injury, the impact on lifestyle, required future care, and loss of earnings.

Yes, I wonder how the NHS are protecting themselves against misdiagnosis and lawsuits for compensation for ‘Never Events’

For a start, what are the robust and well researched diagnosis guidelines that would lead a clinician to prescribe puberty blockers/cross sex hormones?

I know there are additional waivers and special conditions for drug trials but no one can sign away their rights and any trial still has to have patient safety as its utmost priority. I just can’t see how they can demonstrate that is the case with this trial.

From the summary.

Key Aspects of NHS Never Event Compensation

• What Constitutes a Never Event: These are patient safety incidents that are "wholly preventable" because guidance or safety recommendations are available at a national level and should have been implemented.
• Examples: Wrong-site surgery (e.g., operating on the wrong limb), retained foreign objects post-surgery (e.g., swabs, instruments), misplacement of gastric tubes, or administering incorrect medication.
• Proving Negligence: You must demonstrate that a duty of care was breached (the event happened) and that this breach directly caused, or made worse, an injury (causation).
• Compensation Factors: Payouts vary based on the severity of the injury, the impact on lifestyle, required future care, and loss of earnings.

An aspect never discuss is how much has PB treated children cost the nhs in terms of after care for later side effects?

It has often been discussed that gender affirming care makes them life long patients- the nhs takes costs / benefits very seriously when weighing up whether to offer treatments.

For example, messing with cross sex hormones and pbs does appear to trigger hypothyroidism in some (a woman who used to post here about her experience with PBs for precocious puberty was affected and I’m sure a couple of detransitioned people have too.) That’s life long treatment and all prescriptions, for any other condition and illness, are free.

I think the group of young people who went through some form of transitioning at that time are unwilling to share their data for reasons of privacy and paranoia that they will be on a list of people to target later on. It is very stressful and it would be easier if the reasons and parameters were explained more clearly. It is a cohort of people with neurodiversity, anxiety, co morbidities.

The fear of being outed remains very strong, stronger than a desire to demonstrate how successful it has all been. That alone must be an indication how unsuccessful it has all been.

Trans patient pathways are complex as hell (as two separate GP-led audits from England showed) and involve NHS number change, sex marker change and the use of multiple clinics.

Ooo! Were those audits published?

Gender clinics do not collect outcome data (I am not convinced they collect ANY data)

I would put money on the reason for refusal to cooperate being such sub-standard record keeping that it should lead to disciplinary action, sanctions by professional regulators and a big question mark over whether the GDCs are fit for purpose.

However, that is exactly what the Levy Review found and as far as I know there have not been any consequences for the professionals involved.

Quality (including safety)

"The absence of any patient outcomes data, alongside limited and inconsistent quality data reporting, and minimal clinical audit makes it impossible to properly understand patient outcomes and the safety of these services. These gaps place these clinics outside standard NHS quality assurance expectations."

https://www.england.nhs.uk/long-read/operational-and-delivery-review-of-nhs-adult-gender-dysphoria-clinics-in-england/#quality-including-safety

Detransition

98. The review heard that, following assessment and treatment, some patients express regret or dissatisfaction; a smaller number choose to discontinue or reverse their gender transition. Some later decide to retransition.

99. The number of patients who express some form of regret, dissatisfaction or choose to detransition is unknown due to the absence of GDC outcomes data.

https://www.england.nhs.uk/long-read/operational-and-delivery-review-of-nhs-adult-gender-dysphoria-clinics-in-england/#service-context

Any study will have to involve GP data. Which is decentralised and with no consistent coding. The whole project is of such mind-boggling complexity that I cannot see how it will happen without real manpower and/or time.

I agree. I was involved with a three year multi-centre study that followed patients through to local services to determine outcomes, among other things. There were separate prospective and retrospective components. The prospective component was obviously more manageable and one of the big challenges with the GICs study is that it would necessarily be retrospective.

I am not clear from what has been published whether it is proposed that the original University of York Protocol will be followed or if there have been any modifications.

Protocol Assessment, Management and Outcomes for children and young people referred to a National Gender Identity Development Service
V3.1;03072023
https://www.york.ac.uk/media/healthsciences/documents/research/GIDSFullProtocolv3.125072023.pdf

There are details about the proposed data collection, in response to a FOIR to NHS England, in the zip file here:
https://www.whatdotheyknow.com/request/cassdatadisclosurethreats#incoming-2705431

There is also email correspondence in the zip file confirming that by April 2024 the Adult GICs/GDCs were willing to cooperate with the York Research.

File name: Data Linkage Email Correspondence_Redacted.pdf

From: Derek Glidden
Sent: Wednesday, April 10, 2024 7:54 PM
TO: PALMER, James (UNIVERSITY HOSPITALS PLYMOUTH NHS TRUST)
Cc: [REDACTED] (NHSENGLAND - X24)
Subject: Data Linkage Study
Importance: High

Dear James and [REDACTED]

I am writing to you in my capacity as the NHS England's Gender Dysphoria National Speciality Advisor to say that following discussions with the national GDC Clinical Leads, that I am assured that we as a group will be willing to support the data linkage study progressing and that we are committed to wanting advance the evidence base in our field, especially the short, medium and longer term outcomes.

I am always happy to discuss this further.

Best Wishes,
Dez

Dr Derek Glidden (pronouns he, him, his)
Transgender Healthcare Consultant (Psychiatrist)
Clinical Lead NCTHnet
Clinical Director Transgender Health and Substance Misuse Service
NHS England Gender Dysphoria National Speciality Advisor
Nottingham Centre for Transgender Health Network (NCTHnet)
12 BroadStreet
Nottingham NG1 3AL

In the zip file, also see the NHS England Report, file name:
Item 5 Update on Data Linkage Project CYP Gender Dysphoria ROB 29 May 2024 (2)_Redacted.pdf

NHS ENGLAND

Date of meeting: 29 May 2024
Paper title: Update on the Progress of the Data Linkage Project
Agenda item: 5
Report by: [REDACTED], Senior Delivery Manager, Data Collection and Delivery and Michael Chapman, Director of Data Access and Partnerships
Paper type: For note and discussion.
Sensitivity: Are the contents of this paper OFFICIAL: SENSITIVE Yes

Action Required

The Board is requested to note this paper and to offer any advice ti might have.

Executive Summary

Further to the publication of the final report of the Cass Review in April (the Report), this paper presents the Research Oversight Board with:

• A summary of the current position relating to NHS England's preparedness to provide the University ofYork (UoY) with the data it requires to carry out the quantitative research commissioned by the Cass Review (the Review),

• A summary of the issues currently under discussion.

• Some background information regarding the work carried out to date.

Planned Approach and Study Protocol

The essence of the work is in response to a request from the University of York (UoY) for Hospital Episodes Statistics (HES) records in respect of every patient who attended the Gender Identity Development Service (GIDS) at the Tavistock and Portman NHS FT between 2009 and 2020. This requires:

1 Uploading patient demographic data (postcode, date of birth, sex/gender, NHS number) from GIDS (this is the cohort of patients for whom records are required), the five Gender Identity Clinics (GICs) and the two endocrine services.

2 Verifying each patient’s details and find any records for the same person under a different NHS number.

3 Determining which patients of the adult GICs and endocrine services belong to the GIDS/study cohort (and informing those trusts of this).

4 From the final list of patients (some of whom will have two sets of HES records) producing a final set of records (this is the data extract to be sent to the UoY).

Here is a link to the full study protocol: GIDS protocol - Health Sciences, University of York

Delivery approach

Michael Chapman will provide senior support to a multi-disciplinary team project managed by [REDACTED] within NHS England’s Transformation Directorate. This will initially comprise those who have been involved in the work since the original request for data from the UoY to NHS Digital.

Risks:
Available resource in the Data Science area – can be mitigated by senior support to prioritise this work and/or by agreeing funding and a suitable route for procuring specialist staff.

Available resource in the National Back Office (NBO) – this is a specialist team that can trace health records “by hand” in cases involving incomplete information or where details are ambiguous (e.g. distinguishing between individuals with similar details). Their help may be needed; until the data is seen it cannot be known how much time/effort may be needed from them. This might delay the work. NB A member of the NBO team has been part of the multidisciplinary team since its inception.

It is not known how easy/difficult it might be to find and match records for the same person held under different NHS numbers until the quality of the data is known (i.e. after it has been uploaded to NHS England).

Information Governance Approach

A Statutory Instrument (SI) amending the Gender Recognition Act 2004 laid in June 2022 (allowing records of those who have a Gender Recognition Certificate (GRC) to be matched with their record pre the issue of the GRC) remains in force until June 2027. Organisations specifically named in it can therefore work with the data of those who have a GRC, which is important as, without that, given that it isn’t known who does or doesn’t have a GRC, working with data from this patient cohort would not be possible. However, as the UoY is specifically named in it, the SI would need to be amended were any other organisation to be commissioned to carry out the research.

The Confidentiality Advisory Group (CAG) issued approvals under Section 251 of the Health and Social Care Act 2012 in August 2023 (NB the UoY had applied about a year earlier). This exempted both the UoY researchers and Trust staff from having to obtain individual consent from every patient whose data would be involved in the work on the grounds that this was impracticable (and also acknowledged that the research was a legitimate use of patient data in support of health and social care). This approval remains valid.

The s251 approach was agreed upon by Jackie Grey (Director of Privacy, Transparency, Ethics and Legal in NHS Digital) and the CAG in November 2022 after representations from the Chair of the CAG (initiated under the terms of an MoU on co-operation between NHS Digital and the Health Research Agency) that a Direction would be perceived as an overly proscriptive way to try to obtain the patient data by the patient and stakeholder community.

However, as highlighted by the Report, this approach did not succeed. It is unlikely that the stakeholder community would now perceive the use of a Direction any differently to how it did in 2022, but using a Direction (and the consequent Data Provision Notice creating a legal requirement to submit data) would enable NHS England to consider action in the event that a Trust/clinic continued to refuse to provide its patient data and, in the wake of widespread comment on the refusal of the GICs to co-operate with the research, would signal to both stakeholders and the wider public that their co-operation was now being ensured.

Next Steps

1 Specialised Commissioning is currently in discussion with the UoY regarding restarting its work on the quantitative research.

2 Discussions regarding the IG approach to be adopted will continue (to include consultation with the Chair of the CAG).

Background

The then NHS Digital became involved in the research commissioned by the Cass Review in early summer 2022. At that time the Review’s Interim Report had been published which set out the research that had been commissioned by the Review.

The UoY was commissioned to carry out the quantitative research into outcomes for the cohort of GIDS patients who attended the service between 2009 and 2020. This is about 9,000 individuals. After developing its research protocol and submitting that to the CAG for approval, the UoY made a request to NHS Digital’s Data Access Request Service for the relevant patient records from the Hospital Episodes Statistics.

This request resulted in NHS Digital producing a plan for identifying which patients from the GICs and endocrinology services were part of the GIDS patient cohort and for then identifying all records held for each of those patients. The plan also provides for informing the trusts concerned which of their patients had attended the GIDS service. This would have enabled the UoY to have identified and accessed relevant patient records for a planned further stage of the research that the Report did not recommend was continued. This plan was developed in consultation with the UoY and was designed to ensure that patients could not be re-identified by researchers. NHS Digital developed all relevant Information Governance documentation in relation to its work.

NHS Digital originally planned to obtain the data via a Direction from NHS England. In November 2022 the Chair of the CAG raised concerns about this approach. Ultimately NHS Digital’s Director of Privacy, Transparency, Ethics and Legal agreed with the Chair that Section 251 approvals should be used for the flow of data into and out of NHS Digital. These were granted in August 2023 (after further work with the UoY to satisfy the CAG on other matters e.g. patient involvement). This allowed the UoY to begin to work with trusts on implementing the three-month period that had been agreed upon to allow any patients who wished to do so to opt-out of having their data used in the research. (NB this is separate to the National Data Opt-out which trusts would also have applied when submitting data to NHS Digital).

NHS Digital merged with NHS England in February 2023. This necessitated some further work on the IG after discussion with the Interim Advisory Group on Data (including the consideration of data controllership responsibilities as the Review was commissioned by Specialised Commissioning, with the Review then contracting with the UoY, which then requested data from NHS Digital, which has now merged with NHS England).

As is now well known, trusts refused their co-operation at the point of being asked to implement the opt-out option/period (in November 2023). After the University of York terminated the research the NHS England team stood down but remained in touch with one another awaiting the publication of the Report. That team therefore remains extant and is able to pick up the work from where it was left off (assuming that the research protocol produced by the UoY is not altered, which would require NHS England’s work to be rescoped and replanned).

I really don't think a data-linkage study will happen.

Not due to lack of will or cover-up but because of the logistics. Trans patient pathways are complex as hell (as two separate GP-led audits from England showed) and involve NHS number change, sex marker change and the use of multiple clinics.

What is the data linkage trying to find? Which kids have PBs, then x-sex hormones and then what happened to them? What about the kids that never engaged with adult NHS gender clinics? Who went private (for all care, or some of it)? Who desisted or detransitioned and have never presented for this?

Gender clinics do not collect outcome data (I am not convinced they collect ANY data) - they have nothing to do with patients once they are discharged to GP so if they detransition, desist or die, this will not be known to gender clinics (unless they specifically go back for further care, which is frankly extremely rare). Even patients that detransition may not be obvious to GPs - they just stop taking the drugs. Some may revert sex marker, some not. These are generally young people with distrust of the system - they don't present much.

Any study will have to involve GP data. Which is decentralised and with no consistent coding. The whole project is of such mind-boggling complexity that I cannot see how it will happen without real manpower and/or time.

I would LOVE to be proved wrong.

Hopefully that works for them. It seems strange that this isn't common knowledge though, if this helps with incontinence. Or is it just to help with atrophy and dryness, with the inconvenience still remaining?

Do you know how they counter the increased risk of heart attack and cancer of the uterus that comes with taking testosterone too?

I have Queen's "Another one bites the dust" running through my head at this point

Most of the trans men I've met tend to use topical estrogen creme to counteract thinning and changing of tissues due to testosterone use, if they haven't had bottom surgery.

“The impact a bit of leaking has on these young people’s lives is huge. It really needs to be properly discussed within gender clinics because I would expect that almost 100 per cent of female people that take cross-sex hormones will end up with these problems,” she added, noting that the study was “robust” and probably underplayed the issue.
“It’s really sad when we hear people say, ‘nobody ever told me this’, and they should have been informed of the risks in gender clinics.”

Wow.

And the majority who take blockers go onto hormones.

These are women in their 20s.

That sounds like a FOI request waiting to happen.

Exactly...and self perception is not the same thing as meaningful shared reality.

'Gender' is the term some people are using for personality expression or sexually driven preferences. It has no bearing on the reality of one's sex, and as you suggest people can recognise a person's sex even when they are preseenting their 'gender' self perception.

I really don't think a data-linkage study will happen.

Not due to lack of will or cover-up but because of the logistics. Trans patient pathways are complex as hell (as two separate GP-led audits from England showed) and involve NHS number change, sex marker change and the use of multiple clinics.

What is the data linkage trying to find? Which kids have PBs, then x-sex hormones and then what happened to them? What about the kids that never engaged with adult NHS gender clinics? Who went private (for all care, or some of it)? Who desisted or detransitioned and have never presented for this?

Gender clinics do not collect outcome data (I am not convinced they collect ANY data) - they have nothing to do with patients once they are discharged to GP so if they detransition, desist or die, this will not be known to gender clinics (unless they specifically go back for further care, which is frankly extremely rare). Even patients that detransition may not be obvious to GPs - they just stop taking the drugs. Some may revert sex marker, some not. These are generally young people with distrust of the system - they don't present much.

Any study will have to involve GP data. Which is decentralised and with no consistent coding. The whole project is of such mind-boggling complexity that I cannot see how it will happen without real manpower and/or time.

I would LOVE to be proved wrong.

Charities aren't covered by FOIs unfortunately.

I’ll see what I can do. I knew where the charity used to be based in bristol. Foi good idea