Concerns Over NHS Gender Identity Service Investigated

Nicky Broyd

July 25, 2019

The UK's Health Research Authority (HRA) is investigating concerns raised by the BBC's Newsnight programme about the NHS Gender Identity Development Service (GIDS) and early access to puberty blockers.

The decision to prescribe the hormone blocking drugs is partly based on the results of a study, the design of which is now in question. Michael Biggs, associate professor of sociology at Oxford University, told the BBC he didn’t see how children and parents could have given informed consent for the drugs based on the "lack of information" provided.

Last year, Medscape reported on how demand for transgender care far outstrips the evidence-based medicine to support it.

Policy Based on Unpublished Study

The programme reported how GIDS used an unpublished study as evidence to lower the age to offer puberty blockers to children as young as 11 with gender identity issues. The service has bases in London at the Tavistock Centre and in Leeds.

The programme also reported concerns about the treatment possibly causing suicidal thoughts. The Tavistock Centre's board minutes from 2015 show significant levels of thoughts of self-harm, suicidal thoughts, and suicide attempts among study participants.

Puberty blocking is used, in effect, to buy time before any future decision on gender reassignment. However, previous research from Australia found that once the treatment began children or teenagers tended to always continue with a gender change.

There have been high profile resignations from the service. There was criticism in an open letter to the head of GIDS from a former clinical psychologist at the service in Leeds, Dr Kirsty Entwhistle. She wrote: "I think it is a problem that GIDS clinicians are making decisions that will have a major impact on children and young people’s bodies and on their lives, potentially the rest of their lives, without a robust evidence base.

"GIDS clinicians tell children and families that puberty blockers/hormone blocks are 'fully reversible' but the reality is no one knows what the impacts are on children's brains so how is it possible to make this claim?

"It is also a problem that GIDS clinicians are afraid of raising their concerns for fear of being labelled transphobic by colleagues."

Later in the letter she wrote: "I also strongly believe that it is GIDS duty to make it known that it is highly unlikely that any child presenting there will be told that they are not transgender. One of my biggest ethical dilemmas whilst working at GIDS was that there were parents who brought their child to GIDS anticipating that we would confirm that the child was not transgender but we are not able to tell parents that actually there is some unspoken rule that means GIDS clinicians do not tell families, 'your child is not transgender'.

"Since leaving GIDS I have, over time, been learning about organisations and academics who present a more critical approach to gender identity and the medical pathway for children. I have also seen accounts of young people who no longer identify as transgender, even after medical interventions and are now distressed about having been put on the medical pathway. It is by seeing their courage that gives me the courage and the ethical duty to speak up."

Watchdog Investigates

Teresa Allen, chief executive of the HRA said in a statement: " The HRA co-ordinates the Research Ethics Service, a network of committees which reviews around 5000 health and social care research studies each year across the UK … We have examined the review process for the research study into pubertal suppression for adolescents with gender identity disorder, which was approved by a REC [Research Ethics Committee] in 2011. The committee followed the normal process of reviewing the study documentation, including the participant information and consent process. However, the information that Newsnight has brought to our attention has not been raised with us before. We will therefore investigate further, which may include a review of the original ethics opinion."

A spokesperson told Medscape News UK that no timescale is yet in place for that investigation.

The HRA's statement said it has already looked at the REC minutes "to establish what ethical issues were identified by the REC and what advice they gave in the context of this particular type of study. We have looked at the minutes and documents that we had from the second REC submission to establish whether the researchers had considered advice from the first REC submission in terms of their approach to this study. We have checked the available records to establish whether any adverse events were reported to us or the REC about this study and we have checked our complaints log to establish the nature of any complaints received and acted upon those findings."

The statement continued: "On the material available to us at present we have not seen anything that raises a specific concern or that we believe has been handled inappropriately. However, the ethics review was undertaken by our predecessor organisation, and we do not have all of the information about the study, including the Participant Information Sheet (PIS). Given that concerns have been raised about the PIS, we would like to consider that to see if there are any lessons to be learnt, or matters to discuss with the research team or sponsor."

GIDS Response

GIDS issued a response refuting the allegations made: "Recent statements appearing in the media do not represent the ethos or practice of our Gender Identity Development Service, which takes a thoughtful and safe approach, caring for young people at a vulnerable time in their lives. Our experience with this group indicates that the choice to do nothing may do significant harm, but the service is thorough and systematic in its approach to exploring with the young people and families the best way of dealing with their distress and the consequences of different choices.

"This is a contested field of work. The service has always taken a balanced approach and does not affiliate with lobby groups. In this context, the service attempts to occupy a thoughtful position based on the best available evidence while facing criticism from both ends of the spectrum of opinion in a highly scrutinised area of practice.

"In responding to some concerns raised about the service, the Trust completed a Board level review earlier this year, which resulted in recommendations to address issues, including clarifying processes within the service and addressing any unwarranted variations in practice. However, we strongly refute the blanket and generalised criticisms of the service. These points are at variance with the experience of service users within the service, which have been overwhelmingly positive. Where any clinician has specific concerns, the Trust has well established procedures for reporting them."

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