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Many clinicians have now raised concerns about the use of puberty blockers in children, particularly in the last few years. Much of the unease of these medical professionals has been about the lack of evidence for their use, their efficacy and their safety, and many of them have been criticised for raising their concerns.

But they were right to keep speaking out, and the NICE evidence review does much to validate their concerns: there isn’t a solid evidence base, and those studies which do exist are unreliable, subject to bias and produce results of low certainty.

In 2005, a GIDS report by Dr David Taylor suggested that young people need to be able to explore different options before being prescribed puberty blockers.

In 2017 a GIDS report by Dr David Bell highlighted concerns of clinicians that children were being prescribed experimental drugs after minimal consultation. For speaking out against the practices at GIDS, Dr Bell faced disciplinary action from the Tavistock and Portman NHS Trust.

In January 2019, three doctors wrote to the RCPCH journal Archives of Disease in Childhood expressing their concerns about the use of puberty blockers in children and adolescents, calling it a ‘momentous step in the dark’. They raised queries over whether arresting puberty might consolidate gender identity, may have an adverse effect on the maturation of the adolescent brain and that puberty blockers were being used ‘in the context of profound scientific ignorance’.

In February 2019, Professor Carl Heneghan and Tom Jefferson wrote to the BMJ expressing similar concerns about the use of puberty suppression. They concluded:

“The development of these interventions should, therefore, occur in the context of research, and treatments for under 18 gender dysphoric children and adolescents remain largely experimental. There are a large number of unanswered questions that include the age at start, reversibility; adverse events, long term effects on mental health, quality of life, bone mineral density, osteoporosis in later life and cognition.”

In December 2020, a Judicial Review found puberty blockers are accurately described as an experimental treatment to which under 16s are unlikely to be able to give informed consent (the case is subject to an appeal to be heard in June 2021). Part of the evidence provided to the court showed that with very few exceptions, those children and adolescents commenced on puberty suppressing medication will continue on to cross sex hormones, again raising the concern that puberty suppression may solidify gender identity.

As part of the independent review into gender identity services for children and young people, NICE undertook an assessment of the clinical effectiveness, safety and cost-effectiveness of the use of puberty blockers and cross sex hormones (which NICE refer to as ‘gender-affirming hormones’) in children and adolescents. Oestradiol, triptorelin (the puberty blocker used in the UK) and most testosterone preparations are not licensed for use in gender dysphoria, and therefore are being used ‘off-label’ in children and adolescents.

NICE is an independent organisation responsible for driving up standards in the health and social care systems. They produce guidelines and quality standards with the aim of improving outcomes for patients and are internationally renowned for their rigorous and systematic reviews of evidence.

This week, after some delay, the reports on this analysis have been published and the conclusions confirm the concerns of medical professionals as outlined above: there is no solid evidence base for the efficacy or safety of puberty blockers or cross sex hormones in children and adolescents.

The main conclusions of the report in to puberty blockers states:

“The results of the studies that reported impact on the critical outcomes of gender dysphoria and mental health(depression, anger and anxiety),and the important outcomes of body image and psychosocial impact (global and psychosocial functioning), in children and adolescents with gender dysphoria are of very low certainty.... They suggest little change with GnRH analogues from baseline to follow-up.”

They go on to say that:

“Studies that found differences in outcomes could represent changes that are either of questionable clinical value, or the studies themselves are not reliable and changes could be due to confounding, bias or chance.”

With puberty blockers being heralded as life changing and ‘life-saving’, we would expect to see a raft of conclusive results, showing just how great an effect they have. However, this comprehensive review has found no solid evidence to back up these claims. This is quite a surprise as puberty blockers were first used for gender dysphoria in the late 1990s, giving clinicians over twenty years to gather and publish the evidence on their effectiveness.

The NICE reports into cross-sex hormones and puberty blockers both draw similar conclusions: all studies produced evidence of low quality or certainty. No studies compared cross sex hormones or puberty blockers with a control group (the gold standard for clinical research), and all follow-up periods for cross sex hormones were relatively short. NICE states that “further studies with a longer follow-up are needed to determine the long-term effect of gender-affirming hormones for children and adolescents with gender dysphoria.” They caution that “it is not clear whether any changes seen were due to gender-affirming hormones or other treatments the participants may have received.”

Examples of drugs whose prescribing is based on a scant, poor or biased evidence base, resulting in significant harm to often vulnerable individuals, are not hard to find. Opioids, benzodiazepines and antidepressants are just a few of the more well known drugs which have made headlines in recent years.

It is becoming more likely that puberty blockers and CSH in children and young people will join this infamous group.

We hope the Cass Review will take a thorough and careful look at the pathways and treatments being offered to children and young people who are in psychological distress. This NICE review of the evidence will feed into that review, and should give anyone pause for thought about whether this truly is the panacea that many charities, healthcare and social support services would have us believe.

Our children deserve the best care possible. At present, the evidence does not show that this is what they are being offered, let alone receiving. This review has shown that the clinicians involved in ‘gender-affirmative care’ are not basing their practice on sound evidence, nor conducting robust research into the best ways to help gender-distressed children and young people. There have been over two decades in which to gather evidence of the effectiveness of these treatments, and questions need to be asked as to why detailed, long term follow up with clear expectations of the outcomes of treatment has not happened. There seems to have been the emergence of only one solution: a medical pathway, with or without the evidence to support it.

NICE Evidence Review on Puberty Blockers

NICE Evidence Review on Cross Sex Hormones

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29 March 2021



Bayswater statement in response to the Family Court ruling that parents can consent to puberty blockers on behalf of children.

 

In light of last December’s judgment by the High Court that under 16s were unlikely to be able to consent to the prescribing of puberty blockers, an application was made to the Family Court by the parents of child XY, a 15 year old who is already being prescribed puberty blockers initially through GIDS, and latterly by their GP. The parents asked the court if they could give consent to this experimental treatment on behalf of XY, or whether the decision should be made by the court as a matter of legal requirement or good practice.

 

Mrs Justice Lieven handed down judgment on Friday 26 March. This clarified that the role of parents in consent is not affected by the Bell ruling, and confirmed that parents could indeed consent to the prescribing of puberty blockers. We are pleased that the judge highlights “the central role that parents must and should play in their children’s lives” (para 118) and that the “gravity of the decision to consent to puberty blockers is very great” (para 121). However, of ongoing concern is the lack of evidence on which parents are making these decisions, and that within the structure of England’s only gender identity clinic for children “...it may be that clinical difference and disagreement will not necessarily be exposed” and that “...strong, and perhaps fixed, positions as to the appropriate use of PBs may make it difficult for a parent to be given a truly independent second opinion.” (Para 123) The solution to this problem is seen by the court as the responsibility of regulatory bodies such as NHSE and the CQC. Indeed, the judge reinforces that “additional safeguards should be built into the clinical decision making”.

 

However, this causes great concern to us as governance and oversight of NHS treatment decisions at GIDS is at best questionable, at worst absent, as the recent CQC inspection report and the Sonia Appleby safeguarding court case make clear. In October 2019, in its report on the GIDS puberty blockers research study, the Health Research Authority asked NHS England to “provide guidance to NHS organisations on appropriate and transparent oversight and governance of innovative practice undertaken outside research.” NHS England has not acted on this recommendation, and we are not confident that the safeguards recommended by Mrs Justice Lieven are currently in place, leaving this vulnerable group unprotected .

 

Also troubling is the apparent surprise expressed by the judge that Professor Butler used the completion of the GIDS consent form as evidence that XY had understood the implications of the treatment and given legal consent. This implies that, even now, clinicians at GIDS believe that the children they have commenced on puberty blockers are able to give their informed consent, despite the ruling in December 2020 that this was not in fact lawful. 

 

The judge points quite rightly to the pending Cass Review as an opportunity to put sufficient safeguards and oversights in place. We can only hope that this might be the case. However, the Cass Review will not cover private providers, so there is a real risk that private services, such as GenderGP, will be left free to continue to exploit young people and their families. The following two cases highlight what we see as unsafe practices which would fall outside the remit of the Cass Review:

 

A 10yr old “starting puberty & is getting distressed at the idea” so was prescribed blockers by Dr Webberley (2018) who “brushed aside long-term concerns” about them. Mum felt “so out of my depth”.

 

A 11yr old born-female “really wants blockers” said mum, who thinks they may be autistic. 6 wks after coming out, GenderGP were recommending blockers. “I'm not prepared to wait 3yrs while my child needs assistance”.

 

This second case illustrates a further concern expressed by the Judge in this case: that of the pressure from our children to consent to puberty blockers.

 

“Where a child has Gender Dysphoria and is convinced that s/he should be prescribed PBs, it is likely to be very hard for parents to refuse to consent. One does not have to be a child psychologist to appreciate the tensions that may arise within a family in this situation. I would describe this as “reverse pressure” and, although I have no evidence about it, it seems obvious that the problem could arise.” Whilst Mrs Justice Lieven has no evidence, at Bayswater Support we can provide an abundance of testimonies illustrating this very point. Many of our children are adamant the only solution for their distress is medical intervention.

 

The QC for GIDS submitted that the service is aware of this issue and that there are “a family based range of consultations and that parents saw clinicians in private as well as with their children.” (para127). Having already outlined the reduced possibility of obtaining an independent second opinion due to fixed opinions on the use of puberty blockers, could this family based intervention simply be more pressure on parents to accept and consent to puberty blockers? The judge stated that if “clinicians, or indeed any one of them, is concerned that the parents are being pressured to give consent, then I have no doubt such a case should be brought to Court.” We agree, but would it ever get there? With the pending case brought by safeguarding lead Sonia Appleby about clinicians being discouraged from taking their concerns to her, and the already highlighted difficulty of getting differing independent opinions, is this going to happen in reality? We are not certain.

 

On the surface, this judgment appears to go against the ruling in the case of Keira Bell, yet Mrs Justice Lieven states very clearly that no part of the judgment in this case undermines the judgment handed down in Keira Bell’s case. We are not legal experts and will leave that discussion to those who are.

 

We are disappointed to see that some lobby groups are using this judgment to further divide opinion. To frame parents who give their consent to a medical pathway that leads to life changing, irreversible consequences, that their child may or may not come to regret, as loving and supportive, is to suggest that those who are reluctant to consent to these same effects are unloving and unsupportive is to entirely miss the nuance of the situation all parents of trans identified children find themselves in. It is both unhelpful and adds to the parental pressure described by Mrs Justice Lieven, and we strongly condemn such actions.

 

Our concern remains that the decision to prescribe puberty blockers is being taken in the absence of evidence as to its intended effects, its intended outcomes, and the extent to which it achieves either of these. The NICE evidence review should provide more clarity on this issue, and the Cass Review should help to form a robust framework of oversight and safeguarding of what is a very vulnerable group of children. And let us not forget, all the parents of these children are asked to undertake what is a very heavy burden, to give or withhold consent to life changing treatment for our children in a socially, ethically and politically polarised environment.







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Bayswater Support shares concerns about Telegraph investigation into GenderGP

 

1 March 2021

 

Bayswater Support Group is gravely concerned about the implications of the investigative article in The Daily Telegraph on 27 February. The response of Gender GP, as posted on its website, is further confirmation that they are happy to provide these drugs to our children without parental input and support, proper safeguards or verification of medical history. 

 

  • GenderGP exploits a legal loophole to sell cross-sex hormones such as the anabolic steroid testosterone to minors, without any contact with parents. It allows young people access to drugs that are deemed experimental by the UK High Court. 

 

  • Contrary to normal prescribing practices as outlined in the General Medical Council Guidance on Prescribing, the doctors working with GenderGP may not have access to medical records, nor does the prescribing doctor have to meet the individual for whom he is prescribing: Gender GP claims that ‘Not everyone needs in-person consultations with one of our doctors’. 

 

  • Taxpayer-backed charity Mermaids is often signposted by schools, social workers, GPs and Camhs to parents of trans-identified young people as a source of reliable information and advice. Mermaids allows its forum members to promote GenderGP, an organisation circumventing UK prescribing protocols for children and adolescents.

 

  • We note an ongoing lack of clinical curiosity within medical and psychological professions about the exponential increase in young people pursuing interventions. 

 

“Gender GP has taken it upon themselves to override the recent Keira Bell judgement and continue with its assertion that children can consent to life-altering medications, and do so without any parental involvement.” 

 

“We are asking UK authorities why children are able to obtain these medications online, and why non-UK doctors are prescribing drugs contrary to UK guidelines. We are concerned that a swathe of young people will access medications without the multidisciplinary team approach and judicial intervention advocated by the NHS and the High Court.”

 

Contact details

press@bayswatersupport.org.uk

 

We are able to comment on the record as Bayswater, and in some cases can connect journalists with parents of males and females girls ages 11 to 25 on a strictly anonymous basis.

 

Notes to Editors

The behaviour of Gender GP and similar businesses worries us greatly. Our parents are navigating an extremely difficult path between maintaining relationships with our children and resisting experimental medical interventions with the potential for lifelong consequences. We often hear from our parents about the lack of acknowledgement of the vital role parents and families have in the care of our children. From the alienation of parents from decisions regarding our children’s welfare within school settings, to the accusations of an unsafe home environment levelled at us by social services for our reluctance to affirm our child’s newfound identity. We find again and again that the recommendations set out in Working Together to Safeguard Children (2018) are repeatedly ignored when a child has issues or distress around their gender.

 

 

 

 

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Bayswater Support Group, which represents families in the UK and Ireland, welcomes today's ruling that protects young patients (and clinicians) by requiring a judge’s oversight of the “experimental” puberty blocker intervention.

The support group was set up in autumn 2019 by the parents of children with adolescent-onset gender dysphoria and has had more than 250 parents contact them. It advocates for an evidence-based approach to treating adolescents and young adults, and exploring all options before resorting to irreversible medical treatments and surgery.

Bayswater: “Having looked for the best support for our children we have found only the affirmative approach to their new identity, backed up by affirmative environments in schools and elsewhere. We’ve found little scope to explore the new identity as a young person’s solution to trauma or distress, as a response to the challenges of adolescence, or to understand its role within underlying mental health or developmental contexts.”

Mother F: “Nothing can describe the fear you feel as a parent when you realise that medical transition is the only solution presented to your child for distress around their gender identity. Given that institutions from schools to government, charities to the NHS, have supported this route, we have felt powerless to intervene.”

Mother R: “Ultimately, I just want to protect my daughter, to get her to a point where she has the experiences and maturity to make this huge decision if she does make it. How can she possibly understand the complexities that this will bring later in life? To relationships, her health and her body, to so many different aspects of being in the world.”

Notes to Editors

Parents are concerned about the extraordinary rise in the number of children presenting at GIDS, the Gender Identity Development Service, at the Tavistock and Portman NHS Foundation Trust. GIDS has shown a 4200% increase in the numbers of girls presenting at clinics with gender dysphoria in recent years. Parents are also disturbed by the research that shows over 80% of children grow out of dysphoria if they do not have medical intervention. However studies following the recent use of puberty blockers show that 0-5% of children who take puberty blockers desisted.

Professor Heneghan from the Oxford Centre for Evidence-based Medicine stated in the British Medical Journal (25/02/2019): “An Archive of Diseases in Childhood letter referred to GnRHa treatment [aka puberty blockers] as a momentous step in the dark. It set out 3 main concerns 1) young people are left in the state of ‘developmental limbo’ without secondary sexual characteristics that might consolidate gender identity; 2) use is likely to threaten the maturation of the adolescent mind, and 3) puberty blockers are being used in the context of profound scientific ignorance.”

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We have been eagerly awaiting the update to the pages of the NHS website whoch cover gender dysphoria. We felt the previous pages of the site did not reflect the current lack of evidence for the use of puberty blockers in children and young people presenting with gender dysphoria. The update is certainly a step in the right direction, and more accurately describes the current debate over the best tretment for our children.5694164663?profile=RESIZE_710x

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Our statement in response to Liz Truss MP

Liz Truss MP, Minister for Women and Equalities, issued a statement ahead of the announcement about changes to the Gender Recognition Act, in which she said that any young people under 18 would be protected from making irreversible decisions about gender transition. We were pleased to hear that our voices of caution are being heard. Below you can read our response to her 5693907094?profile=RESIZE_710x

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Our letter to the BMJ

In January 2020, An article was published in the BMJ about the difficulty GPs have in providing care to young people who identify as transgender. We wrote a letter in response, highlighting the role parents have in providing the overwhelming majority of care for our children. You can read our Rapid Response here

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