On 21st January 2021 the Care Quality Commission (CQC) published its final inspection report on the Gender Identity Development Service (GIDS) at the Tavistock and Portman NHS Foundation Trust (1) and rated the service, at its HQ in the Tavistock Centre, Swiss Cottage, and its regional satellites, as Inadequate. The GIDS was a clinical psychology led service with a senior team of Dr Polly Carmichael (Director), Dr Sarah Davidson and Dr Bernadette Wren;
at the time of writing, only Dr Carmichael remains in post.

Although the GIDS was an “assessment only” service by this point, it was still referring children to be placed on Gonadotropin-releasing hormone (GnRH) puberty blockers (PB), a drug which is licenced only for use in children with precocious/early onset puberty. GnRH was prescribed, off-label by paediatric endocrinology (PE) at UCLH, led by Professors Gary Butler and Russell Viner, for young people diagnosed as expressing symptoms of Gender Dysphoria (GD).

In 2009 the funding for the GIDS had shifted from individual funding requests to national funding from NHS England, and referrals now came from a wider range of sources. Consequently, the service had become overwhelmed with referrals and moved to an “assessment only” model where young people were seen 4 to 6 times. This raises the question as to the purpose of an NHS service assessing patients if it can offer no treatment, except this was not strictly accurate as some children were still being referred and treated with PB at UCLH. But, as this was the national service for young people with GD, the consequence was, the NHS was not offering any clinical service to those who were not put on PB.

NHS England commissioned a review of services for young people expressing symptoms of GD to be led by Dr Hilary Cass, a past President of the Royal College of Paediatrics and Child Health, overseen by Professor Sir Simon Wessely on behalf of NHS England. 

The Cass Review published its Interim Report in February 2022 (2). The report flagged the limited quality of the sparse evidence in this field (see also NICE, 2020,2023).  The most immediate actions were; a plan to halt eventually all children commencing PB outside of properly controlled trials (of which there have been none as yet). Additionally, that the GIDS should close in the spring of 2023 and be replaced by regional multi-disciplinary hubs. This new model of care intends to start with two pilot hubs with a plan to expand the number of hubs over time. The first southern hub is to be based in London, through a partnership between Great Ormond Street Hospital and Evelina London Children’s Hospital, and the first northern hub to be formed through a partnership between Alder Hey Children’s Hospital and the Royal Manchester Children’s Hospital in Manchester. (See; NHS England: Implementing advice from the Cass Review. Latest update: June 2023) (3).

The closure of the GIDS has been postponed until the spring of 2024 as neither hub is up and running, and the final Cass Report has not been published at the time of writing; consequently, the NHS is not currently offering any service to young people newly expressing symptoms of GD, since the GIDS became an assessment only service. There are, however, a number of private services available, including some online organisations that are not necessarily registered in the UK, e.g., Gender GP is registered in Singapore, and, consequently, not subject to regulation.

In February 2021, a paper (4) was published on the results of an uncontrolled trial, started in 2011 by the GIDS and PE/UCLH. The trial included 44 children aged 12 to 15, recruited between April 2011 and April 2014, who were put on puberty blockers for three years, with data collected at the end of year one (44 children), year two (24 children), and year three (14 children). Measurements were taken of psychological wellbeing and bone mineral densities. Despite an interval of several years between the end of the study and publication, no follow-up data were presented.

The information leaflets given to the participants and their parents/carers were very reassuring; 

A part of the information given to parents/carers for informed consent, says;

What are the potential benefits of taking part?

Early results from similar studies in other countries suggest that:

1. Blocker treatment in early puberty may improve physical outcomes and psychological wellbeing during adolescence and adulthood;

2. Early blocker treatment is reversible and does not have harmful effects on physical or psychological development.

3. Early blocker treatment reduces anxiety in young people with Gender Identity Disorder and allows time and space to think about their gender identity.  

And the information sheet for the Young Person states; 

What are the possible benefits of taking part?

We have looked at other countries who have given this treatment and the results suggest that:

1. Hormone blockers which block the body’s natural sex hormones may improve the development of your body in your desired gender. They may also improve the way you feel about yourself. 

2. If you decide to stop the hormone blockers early your physical development will return as usual in your biological gender. The hormone blockers will not harm your physical or psychological development.

3. Hormone blockers will make you feel less worried about growing up in the wrong body and will give you more time and space to think about your gender identity.  

4. Hormone blockers may reduce the amount of operations that you may need as an adult (after the age of 18) should you wish to have operations to change your body.

The paper concluded, based on the group means, that the study subjects had not experienced any change during the study nor adverse psychological outcomes compared with the general population, and, given the turbulence experienced during puberty, the authors argued that the subjects may even have done rather better than their age matched peers.

The study’s raw data were placed in the public domain and Professor Susan McPherson, Professor of Psychology and Sociology in the School of Health and Social Care, University of Essex  accessed them and ran an analysis that enabled the tracking of each participant over the period of the study. In writing up the findings (5), published in November 2023 in the Journal of Sex and Marital Therapy, Professor McPherson and I concluded that, when analysed individually, some young people had experienced change with some improving and some deteriorating. For example, on one measure – The Youth Self Report – just over a third of the subjects had deteriorated psychologically a fifth had improved, and the remainder, less than half, had not changed.

These findings would seem to contradict the finding in the original paper that there was no change in psychological wellbeing. The total number of participants was only 44 at maximum and only 14 by the third year. It is surprising that this was missed.

Even before the study had finished and the results analysed, in 2014 the GIDS changed its policy and, with UCLH/PE, began prescribing PB to children as young as 9.

Professor McPherson and I also looked at the raw data on the subjects’ bone mineral densities and observed a deterioration over the period of the study, but we do not have the expertise to comment on the significance of this.

Searching for context for the paper by Carmichael et al, and noting that the CQC inspection report (1) had referred to staff taking part in “clinical audits”, I made Freedom of Information requests (FOI) to the Tavistock Trust and NHS England, to access these audits and any other relevant audit data. After many months of waiting, The Tavistock Trust provided audits on safeguarding and risk (13th November 2023). In email correspondence, NHSE reported; “NHS England does not hold the information you have requested” and suggested I try the Tavistock & Portman Trust (5th January 2024). The organisation, ultimately accountable for GIDS, and that had wholly funded the service since 2009, claimed to hold no clinical audit data on this service – unless my FOI Request had been worded wrongly or NHSE had misunderstood my request. 

In February 2023, Hannah Barnes published her outstanding book, “Time to Think” (6), shortlisted for the Bailie Gifford Prize, the UK’s premier prize for non-fiction books. This book chronicles what happened in GIDS in meticulous detail.  It also notes how, at the Judicial Review brought by Keira Bell et al., in 2020, the judges expressed their great surprise that the GIDS was unable to provide them with the most basic data such as the number of young people referred for GnRH analogs/puberty blockers (which I discussed previously in Health Matters in December 2020 (7)) Paul please add the reference to the previous article at the end.

The reason for the title, “Time to Think” was that this was the claim made as part of the informed consent by the GIDS/PE.  They stated that by blocking puberty the young people would be given a breathing space (“time to think”) in which to decide how to continue (see segments above copied and pasted from both information sheets). However, the reality is that >95% of youth treated with GnRH analogs go on to receive cross-sex hormones (CSH) with the consequent risk of irreversible changes (8) including sterility. 

Finally, in February 2024, Professor Sallie Baxendale, Professor of Clinical Neuropsychology at UCL, and Consultant Clinical Neuropsychologist at UCLH, has published, in pre-print, in Acta Paediatrica, “The Impact of Suppressing Puberty on Neuropsychological Function” (8); a review of the known studies exploring the effects of puberty blockers on neuropsychological function in mammals. Of the studies reviewed, 11 were on animals and 6 on humans. All papers indicated negative effects on cognitive development in the areas of interactions with the environment, responses to stress and performance on cognitive tasks, additionally, impairment in sexual function was noted; these negative effects were not fully reversible.

It is, however, worth highlighting one of Baxendale’s references to a paper published by Mul et al 23 years ago (2001) (9). 25 girls were treated for precocious puberty and prescribed GnRHa (the licenced treatment in young people), and were tested on the Weschler Intelligence scales both before treatment and three years after treatment had commenced. An average decrease in IQ scores of 7 points was reported for the group and the girl with the highest IQ, 138, experienced a drop of 15 points to 123. 

Prompted by this, I noted the dates of Baxendale’s references demonstrating negative effects on neurological development and found that a significant number had been published by the time that the GIDS/PE study was recruiting participants between April 2011 and April 2014, including Mul et al (2001). I also scanned the references in the study’s published paper of February 2021 (3) for references to neurological development but found none. 

Given that both the Tavistock and UCLH are renowned as institutions of research, that they were prescribing PB for over twenty years, plus in the uncontrolled study cited above, it is noteworthy that the clinicians did not appear to have undertaken a systematic review of the published evidence of the effects of PB prior to prescribing.

Taking the reanalysis of psychological outcome data (McPherson & Freedman, 2023), together with the findings of Professor Baxendale (2024), these would seem to contradict the reassurances in the information sheets from the GIDS/UCLH study, that PB will not harm the physical or psychological development of the individual and that should the PB be stopped early, the PB is fully reversible.

So, where are we? Mental health services in the UK are unable to provide the services to meet the current needs of this patient group. At the time of writing, there is no specialist GD service and the waiting list for treatment on the NHS continues to grow. We await the Final Report from Dr Cass’s Review and we do not know when her first two hubs will start providing services, and exactly how they plan to meet the needs of those referred. 

I am not a clinician and, in returning to this field after an absence of a quarter of a century, I do not consider myself an expert, I am simply a concerned citizen. However, what I have written above raises so many questions in my mind, almost all of which I cannot answer, that I believe that the only way to answer these questions, and many more, is for there to be an Independent Inquiry into the service provided by GIDS to the children and adolescents in its service, the service’s oversight by the Tavistock and Portman NHS Foundation Trust, the role of PE at UCLH NHS Foundation Trust in the prescription and monitoring of those prescribed PE, and the role of the funder, NHS England, in supporting the way the service was provided and then not provided. Such an inquiry would need to be able to subpoena all relevant documents and to take evidence under oath.

David Freedman (retired health and social researcher)

1. Care Quality Commission. Tavistock and Portman NHS Foundation Trust. Gender Identity Services. Inspection Report. 21st January 2021.
    

2. The Cass Review. Independent review of gender identity services for children and young people: Interim Report. February 2022.
    

3. https://www.england.nhs.uk/commissioning/spec-services/npc-crg/gender-dysphoria-clinical-programme/implementing-advice-from-the-cass-review/
    

4. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0243894
    

5. https://www.tandfonline.com/doi/full/10.1080/0092623X.2023.2281986
    

6. Time to Think. Hannah Barnes. Swift Press. 2023
    

7. Paul, previous article  in Health Matters, December 2020, reference or link to be added.
    

8. https://www.authorea.com/users/713322/articles/697715-the-impact-of-suppressing-puberty-on-neuropsychological-function