Intended for healthcare professionals

Feature

Gender identity services in the UK are on pause as evidence comes under scrutiny

BMJ 2023; 380 doi: https://doi.org/10.1136/bmj.p509 (Published 08 March 2023) Cite this as: BMJ 2023;380:p509

Opinion

John Launer: Gender identity, polemics, and empathy

Investigation

Gender dysphoria in young people is rising—and so is professional disagreement

  1. Hannah Barnes, investigations producer, BBC Newsnight
  1. London, UK
  1. hannah.barnes1{at}bbc.co.uk

The care provided to young people with gender incongruence or gender related stress by the NHS is in limbo. In July 2022 NHS England announced its intention to close its only specialist youth gender clinic by the spring of 2023 and replace it with two regional services, the first of several. But this timeline looks highly unlikely.

Families under the care of the Gender Identity Development Service (GIDS) at London’s Tavistock and Portman NHS Foundation Trust say that clinicians have been leaving the service, making consistency of care difficult. Current GIDS staff said in February that the trust had not received the six month notice of closure from NHS England.

The decision to close GIDS and build a new model of care followed the interim findings of an independent review, chaired by the paediatrician Hilary Cass,1 and a critical report from England’s healthcare regulator the Care Quality Commission, which rated the service “inadequate” in January 2021.2

Both of those reports came after GIDS staff had raised concerns about whether the care being provided to young people was always safe. Together with Deborah Cohen, former BMJ investigations editor and BBC Newsnight colleague, I began reporting on these in 2019. My new book, Time to Think,3 chronicles how numerous GIDS clinicians have voiced their worries consistently and repeatedly over several years. Clinicians such as Anna Hutchinson shared them with the GIDS leadership, members of the Tavistock board, the chief executive and chair, and finally the media.

GIDS was set up initially to provide—for the most part—talking therapies to young people who were questioning their gender identity. In the 1990s the clinic’s founder, the psychiatrist Domenico Di Ceglie, said that only a minority of the young people seen at his clinic would transition as adults. For those whose trans identification remained and who were 16 or older, gonadotrophin releasing hormone analogues (GnRHa)—often referred to as puberty blockers—could be prescribed by endocrinologists who were linked to the service.

In 2011 GIDS, together with endocrinologists at University College London Hospitals NHS Foundation Trust, agreed to lower the age at which young people could access GnRHa as part of a research study. Promising data had emerged from the Netherlands showing that for a select group of young people earlier blocking of puberty appeared to be beneficial. But these were early and limited data, so the UK team set out to find out more.

Ahead of the study data being ready, from mid-2014 puberty blockers became available for anyone who was eligible as standard clinical practice at GIDS. The service also moved from an “‘age” to a “stage” approach, whereby access to medical interventions would be dictated by a child’s stage of puberty, not their age. There were no robust data from the research at that time, and no formal evaluation of the study was presented to NHS England. It allowed the move to go ahead anyway.

Demographic shift

This coincided with a radical shift in referrals—not just in absolute numbers, which increased at a rate of 50% a year from 2009 (and doubled in 2015)4 but in the underlying demographics of the people being referred: from largely prepubescent boys to mostly adolescent girls, who were often contending with other difficulties.

Some GIDS staff began to worry. The service, they believed, did not adequately consider that the evidence base underpinning the medical treatment of young people—the so called Dutch protocol—not only was limited in and of itself but applied to a different group of young people from those largely seeking the help of GIDS.

GIDS’s users were not the young people with lifelong gender congruence and supportive living environments that the protocol was designed for. Rather, they were often teenage girls whose gender related distress had begun in adolescence and who were often experiencing other complex difficulties. They needed more time than the GIDS assessment model could offer them, especially as the number of referrals rocketed.

The Cass review’s interim findings,1 published in February 2022, noted that a single clinic could not provide care to an entire nation’s young people. Cass identified that “different subgroups may have quite different needs and outcomes,” hormone treatment being just one. She wrote that “there were different views held within the staff group about the appropriate clinical approach” and that the work was not underpinned by a robust evidence base.5

Cass’s final report is expected later this year, but in the meantime the waiting list for care grows ever longer. In July 2022 it stood at more than 7500 young people, many of them waiting for years to be seen, often without any help in the interim.

References