Gender clinics forced to share data of children who took puberty blockers to 'study long-term impact'

Health secretary Wes Streeting announced the law change, allowing an NHS England led study to evaluate how treatments such as puberty blocking drugs have affected long-term mental and physical health.

The data linkage study was a key recommendation of the Cass Review, which sought to identify issues with the current system, and advised overhauling gender services on the NHS for children and young people.

Published in April 2024 by Dr Hilary Cass for NHS England, the Cass review served as a major independent report that found the evidence base for prescribing hormones was based on "shaky foundations" and lacks long-term research.

Amid the Cass review, six adult gender clinics had refused to co-operate with the medical research study and hand over data on their patients.

Many patients were initially treated with puberty blockers as children before being transferred to adult clinics for cross-sex hormones and gender-reassignment surgery.

Campaigners said that a planned clinical trial of puberty blockers by King’s College London should not have been permitted before the data from children who had already been put on the drugs was reviewed and released.

Announcing the new legislation to facilitate the data linkage study, Mr Streeting said: “It is my clear expectation that all relevant organisations will now provide the data required to complete this study".

The study will not require active participation by patients, but rather experts will seamlessly analyse their data already held in national records.

The Department of Health Social Care claimed medical care must always be based on solid evidence, and that children’s safety must come first.

A spokesman said: "Analysing existing data to better understand the needs, experiences and outcomes of people who had been referred to previous child gender services - but which does not involve new treatment or trials - will help to inform future decisions on gender care".

Fiona McAnena, director of campaigns at the sex-based rights charity Sex Matters, claimed the move to activate the data linkage study will be "welcomed by the many parents, clinicians and campaign groups", who feel that gender-distressed children have been let down by the health service.

She said: "There has been a leadership vacuum in the highly controversial area of so-called gender medicine, which has allowed transactivists and gender ideologues to promote a distorted view of the healthcare options in the most irresponsible and scaremongering way.

“It made no sense to put hundreds more children through the brutality of puberty suppression when no one had followed up the thousands already treated in that way to find out how they were doing.

"This welcome news must now mean that the puberty blockers trial is on hold indefinitely".

Dr Alice Hodkinson, co-founder of Biology in Medicine, said the data linkage study should be undertaken before any consideration of a puberty blocker study in children.

She said: “There is already a wealth of information available to be reviewed, and it would be crucial to know whether these young people are content, if they have a stable family environment and if they are successfully in education or work, when compared with their peers.

"We hope that this study will in addition inform us of the outcomes of adult transition. Young adults are also at risk of going through life altering cross sex interventions that they may come to regret.

"Recent figures in the Levy report show that it is overwhelmingly the 17 to 19 age group who are referred to the adult gender clinics, which raises the concern that this is not a persisting identity.

“It important to consider what these patients are seeking, whether cross sex interventions really are the answer, and whether instead more holistic integrated non-hormonal support could prevent long term harms.”