Why did adult gender clinics withhold data from the Cass Review?

adult gender clinics

by Shelley Charlesworth

The news that adult gender clinics, who had refused to share their data with the Cass Review, have had to back down is bittersweet. Post-Cass the research will continue and the clinics will have to share data on the thousands of children who were transferred from GIDS to adult clinics. But the time-wasting has been effective. Imagine how much stronger the final version of the ground-breaking report from Dr Hilary Cass would have been with this information.

What’s already known about adult clinics: the Exeter study

Of the seven clinics Exeter was the only one to comply when first asked by the team at York University, who were carrying out research for the Review. An earlier, more limited, investigation into the outcomes at that clinic was published in 2021. It was a “retrospective case-note review” which looked at 175 service users discharged from the Exeter gender identity clinic, GIC, between 1 September 2017 and 31 August 2018. The study authors had to piece together information from a patient list, collating that with data from other medical records. The authors noted:

“As the GIC does not itself diagnose concurrent mental or physical health issues, we relied on the documentation of diagnoses made elsewhere, meaning our background characteristics data may be underestimates.”

Even this limited data gathering, which did not link to GIDS attendance, was revealing. It showed that the cohort mirrored the changes already seen at GIDS:

“The median age was 25 years overall; 36 years for natal males and 20 years for natal females. They had been referred between 2010 and 2017.”

The authors found a detransition rate of 6.9% which they believe is an underestimate.

The range of co-morbidities suggested that, as Dr Cass has pointed out, diagnostic overshadowing was a factor. 72.4% of those attending the clinic had a previously diagnosed mental health condition, 89.4% had an adverse childhood experience, and 23.4% had a neurodevelopmental disorder.

“A further limitation was not being able to quantify the outcomes for service users in terms of mental and physical health improvements compared with baseline owing to a lack of data.”

What this small study does show is that crucial data is not routinely collected and that the patient cohort is likely to have unmet mental health needs. Sadly three patients committed suicide while being treated at the clinic. Could the reluctance to engage with the Cass Review have been a reluctance to disclose their poor record keeping or poor results?

Leaked statistics from Sheffield

Partial data from a 2019 leaked audit of patients attending the Sheffield Gender Identity Clinic shows a patient cohort with many complex mental health needs. It would appear that many of the referrals to Sheffield were, like the children at GIDS, being seen only through the lens of gender – the ‘diagnostic overshadowing’ highlighted by Dr Cass. It is hard to understand why a patient with schizophrenia, auditory and visual hallucinations and autism was sent to a gender clinic in the first place. In the table below ‘Progressed’ means the patient was referred for ‘non-reversible medical interventions.’

We don’t know if those ‘progressed’ were mentally and physically stable and healthy. If so they would be remarkably different from those who were not sent for irreversible medical procedures. It is data such as this which would have helped inform the Cass Final Report.

 “Thwarted by a lack of cooperation from the adult gender services.”

There were a number of different occasions when clinicians refused to cooperate or share data with the York University researchers.

The quantitive Data linkage:

This required the cooperation of GIDS and the adult gender services, as well as hospital wards, outpatient clinics and emergency departments. This would have recorded the outcomes for those aged 18 and under at the time of referral to GIDS over the period of 2009 to 2020, an estimated cohort of 9,000. 7 adult GICs plus paediatric endocrinology services at UCL Hospital and Leeds Teaching Hospitals Trust were asked to participate; only Exeter complied.

The Final Report notes:

“This type of research is usual practice in the NHS when looking to improve health services and care received. However, this has not been the case for gender-questioning children and young people and the hope was that this data linkage would go some way to redress this imbalance.” (p.190)

The research project was halted in November 2023 as it couldn’t continue without the support of the clinics. Even before this the clinics had been reluctant to engage with the design of the research protocol (Appendix 4, p8.) The Chief Executives of the NHS Trusts in charge of the adult clinics and GIDS wrote asking them to take part in the research, to no avail.

The audit of 40 detransitioners undertaken by the Tavistock and Portman GDC:

The Final Report says:

“An audit was undertaken at The Tavistock and Portman GDC on the characteristics of individuals who had detransitioned. Most papers on detransition are based on community samples, and questionnaire reports, but this was a case series of 40 patients who had all been examined by a psychiatrist. Findings from the audit were discussed with the Review. The time for people to choose to detransition was 5-10 years (average 7 years).

Common presenting features and risk factors such as high levels of adverse childhood experiences, alexithymia (inability to recognise and express their emotions) and problems with interoception (making sense of what is going on in their bodies) were identified in the audit, and this audit would be informative for clinicians assessing young people with a view to starting masculinising/feminising hormones. The Review asked to have access to this audit in order to understand some of the qualitative findings, but the trust did not agree to this.” (p. 189)

Recent data from GIDS relating to sexual orientation:

Despite a 2016 report from GIDS reporting that a patient sample found 68% of girls and 42% of boys were same-sex attracted, no further information was released by GIDS to the Review.

“The Review has not been able to obtain recent data relating to the sexual orientation of the GIDS patient cohort. When asked, mixed responses were given by GIDS clinicians about the extent to which they explore sexuality with patients seen in the service, and this may reflect differences in practice.” (p.118)

GIDS refusal to participate in international survey:

The findings of this survey are published as Appendix 2 to the Final Report.

“The University of York also invited GIDS to participate in the international survey (Hall et al: Clinic Survey) to record practice in England, but GIDS did not respond.” (p.135)

Transfer to new services hindered by lack of data:

From the Final Report:

“One of the key challenges in establishing the interim service has been the transfer of the open caseload. This has proven difficult in light of a lack of information on the patient cohort and the expectations of young people and their families/carers who have started care under a different clinical model. Although representatives of GIDS have been involved in these discussions, the transfer of information to the new providers about the open caseload has proven challenging as the characteristics of the population have been difficult to ascertain. The situation is similar for those on the waiting list.” (p. 202)

Problems facing Arden and GEM Commissioning Support Unit:

AGEM SCU is an essential repository of waiting list data for the NHS. They have been looking after the GIDS waiting list since 2021. The Final Report noted that AGEM SCU said the data they requested for referrals to adult GICs was incomplete, especially around sex. (p. 225.) AGEM SCU also reported “No data was provided by Northampton, Newcastle, Nottingham or Exeter GDCs for referrals received/accepted (sex assigned at birth)” (p. 226)

Data from GIDS relating to psychological support:

GIDS have said only a minority of children and young people go on to an endocrine pathway. The Review asked what psychological support was offered instead but

“despite a number of discussions and a focus group with GIDS staff on this topic, it has not been possible to obtain any clear information about the range of options offered.” (p. 154)

Activist clinicians and the adult gender services

Central to Dr Cass’s concerns is the welfare of children and young people if and when they transfer to adult gender services. She recommends that

“NHS England should establish follow-through services for 17-25-year-olds at each of the Regional Centres.” (p. 42)

Knowledge of neurodevelopment is key to this reasoning, especially pp102-4 and p193. The very different medical pathways at the adult clinics are equally important.

The report makes a conservative estimate that 75% of recent referrals to GICs are young women and recommends that:

“Given that the changing demographic presenting to children and young people’s services is reflected in a change of presentations to adult services, NHS England should consider bringing forward any planned update of the adult service specification and review the model of care and operating procedures.” (p. 225)

We have heard anecdotally that the numbers of under 25-yr-olds on waiting lists for adult services could be over 85%. This is unsurprising given that the NHS promised to fast-track 17-yr-old children on the GIDS waiting list to adult services. These shocking statistics, over 85% under 25, 75% of that figure female, show the urgent need to bring in the follow-through service for 17-25-year-olds.

Dr Cass also heard concerns from adult clinic staff who described:

“a large percentage of the patients having various combinations of confusion about sexuality, psychosis, neurodevelopmental disorders, trauma and deprivation, forensic issues and a range of other undiagnosed conditions. There was an expectation that patients would be started on masculinising/ feminising hormones by their second appointment, which was a cause of concern given the complexity of presentations. Clinicians reported seeing an increasing number of detransitioners…” (p. 226)

These proposals and news that there is to an urgent review of the established adult clinics and the pilots ought to ensure a thorough-going reform. But while obstructive clinicians and administrators remain in post this is by no means a certain outcome.

The ideologues running adult gender services: the pilot clinics

Liz Truss as Equalities Minister made a great mistake when she expanded adult gender services in 2020 by setting up pilot clinics. Those who won the contracts were clinicians and LGBT lobby groups already working to make transgender healthcare a ring-fenced specialised service. The pilots operate to adult service specifications which can offer a hormone prescription at a second appointment. They make referrals for surgery but offer little psychological support. Both the established and pilot clinics are staffed by activist clinicians, and use transgender lobbyists as ‘care navigators.’

The Indigo Clinic in Manchester uses navigators who have “lived experience as a trans or non-binary person.” Gendered Intelligence runs a monthly online group for people on gender clinic waiting lists. The Brighton-based trans activist group, The Clare Project, supplies care navigators for the newly opened Sussex Gender Service.

WPATH members working in the pilot clinics

The Cass Review’s Final Report will finally end the disastrous influence of the World Professional Association for Transgender Health (WPATH) on the NHS. Using its trademark under-statement the Report said:

“its guidelines were found by the University of York appraisal process to lack developmental rigour.” (p. 28)

WPATH members working in the pilot clinics include GP Kamilla Kamaruddin, who works at the East of England pilot; speech therapist Sean Pert and GP Luke Wookey who both work at Indigo; Dr Christine Mimnagh, clinical lead at CMAGIC.

Activist clinicians in the Adult Gender Clinics

One of the most senior clinicians to refuse to help the Cass Review’s research team was Derek Glidden. He is the clinical director of the Nottingham Centre for Transgender Health and chair of the NHS England Clinical Reference Group, CRG, on gender dysphoria. Another member of that CRG, Dr Laura Charlton, clinical lead at the Leeds GIC, also refused to cooperate with the research.

High ranking WPATH members in the UK work at the Nottingham Centre for Transgender Health. Professor Walter Bouman is a consultant there and the outgoing President of WPATH. Bouman gave evidence on behalf of Dr Helen Webberley of Gender GP at her GMC hearing. He told the hearing when asked if a 12-year-old would need a full examination and diagnosis before being prescribed hormones that psychological tests weren’t necessary as a transgender doctor knows when a person is trans. He’s relaxed about a lower age for starting cross-sex hormones, saying the global consensus was 14, but it was stage as well as age that is important in pubertal development and that in some cases they could start at 12.

Jon Arcelus works alongside Bouman at the Nottingham clinic and was co-chair for the WPATH 8 guidelines and a member of the Lead Evidence Team. Leaked messages from an internal WPATH internal message board reveal Arcelus endorsing experimental genital surgeries, suggesting they will become standard in the future:

“I’ve found more and more patients recently requesting ‘non-standard’ procedures such as top surgery without nipples, nullification, and phallus-preserving vaginoplasty.”

He also works with the trans charities Gendered Intelligence and Mermaids. Gendered Intelligence have been given the contract to run the helplines at Nottingham, Sheffield, Exeter and the East of England clinic. WPATH member, Laura Garner, is Senior Clinical Nurse Specialist at the Nottingham GIC.

Other WPATH members working in adult GICs are: Christina Richards, consultant psychologist, Leighton Seal, endocrinologist, and Alison Berner, specialist registrar, all work at the Tavistock and Portman GIC; clinical psychologist Debby Jackson, who works at the Exeter GIC; Dr Hasit Vaidya, consultant psychiatrist at the Northampton GIC.

This list of WPATH members working within the NHS is by no means exhaustive. Their membership list is now private and many members have left since the recent scandal exposing WPATH’s ethical and medical malpractice.

Review and reform

The review of the adult gender clinics must be robust and follow on from the findings of the Cass Review Final Report.

If anyone is in any doubt about the scale of the problem within the NHS adult gender clinics they should read this statement from BAGIS, the British Association of Gender Identity Specialists. In line with their activist stance they say they are “deeply troubled by some of the content of the Cass Review and the potential impact thereof.” They promise a longer response but in the meantime direct anyone needing support to Gendered Intelligence, Mermaids and GIRES.

Some senior members of BAGIS cross-reference with WPATH including: Alison Berner, Leighton Seal, Christine Mimnagh, and Kamilla Kamaruddin. Deborah Mackenzie, a nurse at Nottingham GIC is a BAGIS council member.

Other prominent BAGIS office-holders are David Parker, Lead clinician at Scotland’s National Gender Identity Clinical Network; Sophie Quinney, Clinical Director of the Welsh Gender Service; Anna Laws, clinical psychologist, at the NHS’s Northern Region Gender Dysphoria Service.

The names above are just a snapshot of the enormous task NHSE faces in implementing the recommendations of the Cass Review. The NHS is staffed at all levels by people who have followed the activist approach of WPATH and LGBT lobbyists like Stonewall, and the many local LGBT groups who have infiltrated the health service. Returning healthcare for gender-distressed children and young adults to normal standards for mental health services requires political will from the DHSC and NHS leaders. A good starting point would be getting rid of all the activist groups such as Gendered Intelligence working within the NHS. Clinicians who are members of WPATH or BAGIS must be told to follow the evidence-based approach of Dr Cass or find work elsewhere.

This Post Has 4 Comments

  1. Geoffrey Kemball-Cook

    This is outstanding reporting, and one cannot help but feel that all the superb work by Transgender Trend, Cass and other brave organisations and a few well-known individuals will eventually result in the dismantling of this pernicious ideology and the exposing of all its self-serving adherents. But still a way to go. Keep at it!!

  2. Elaine Fraser

    We are being told by media daily that Labour will form next government . If so who in the next Labour government will be charged with the huge task of ridding NHS of activist clinicians and lobby groups? The shadow Health Secretary Wes Streeting formerly Head of Education at Stonewall .Doesn’t exactly inspire confidence

  3. charles lewis

    As has been suggested by more authoritative voices than mine, there has surely been no bigger scandal in the history of the NHS . This is not just the long-standing and malignant destruction of our children by evil people who are determined to continue with their vile practices regardless of the current exposure of their crimes. Equally shocking is their ruthless and blatant determination to withhold all the available evidence that would demonstrate the ugly consequences of the practice of gender identity ideology. For all of them hell yawns.
    The matter is too deep for tears, but hope is given by the expectation that good people like yourselves will press on with the task exposing the villainy and shining a clear light on the culprits and their monstrous practices.

  4. Dick Heasman

    Data linkage is a vital tool for those working in the field of epidemiology, subject of course to the preservation of anonymity which the NHS can easily deliver.
    It is beyond comprehension that these clinics could not provide, or would want to withhold, the simple identifiers of NHS number and date of birth that are all the NHS needs to carry out this vital medical research.

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