Introduction
CAN-SG welcomed the NHS England’s policy announcement that Puberty Suppressing Hormones (puberty blockers) will not be prescribed to children and young people with gender incongruence / dysphoria, from 1 April 2024.
We have concluded that there is not enough evidence to support the safety or clinical effectiveness of PSH to make the treatment routinely available at this time.
NHSE
This change in policy was the culmination of a long process of examination of the evidence for puberty blockers and review of services for children and young people. The two key documents underpinning the change in policy are Dr Hilary Cass’s interim review and the NICE evidence review of puberty blockers. Dr Cass’s final report is due very soon and we don’t expect it to go back on what was in the interim report.
The process of rethinking the treatment pathway for gender questioning children and young people began several years ago with the work of Professor Riittakerttu Kaltiala of Finland which was the first country to do a systematic review of the evidence for puberty blockers. We were proud to have Professor Kaltiala as our conference key-note speaker: a courageous questioner, researcher and champion of change towards safe, evidence based care for children and adolescents. Where Finland began, Sweden followed and then England, culminating in the recent announcement.
This change in policy will protect children and young people from unevidenced and harmful interventions. There were two unexpected and positive aspects to the recent announcement: puberty blockers will not be available through an ‘exceptional circumstances’ route, and the policy change is not dependent on research.
NHS England’s adoption of the new clinical commissioning policy is not contingent on the establishment of a clinical study.
NHSE
Several areas of concern remain
Despite the announcement that puberty blockers will no longer be routinely prescribed in the NHS, there are still significant concerns, including the proposed research on puberty blockers, prescribing by private providers and the use of cross sex hormones in 16-18 year olds. You can read more about our concerns about above matters in the CAN-SG contribution to the consultation.
Continued use of blockers for some children
The Gender Identity Development Service at the Tavistock and Portman NHS Foundation Trust closed on 31 March 2024, but children who were already on PBs or who had been referred by GIDS to endocrinologists for PBs can still be prescribed them.
We have read that this may affect about 300 children. We think this is wrong. How can children or their parents consent to a treatment that has been banned by the NHS because of lack of evidence of effectiveness and concerns about potential harm?
How can we trust endocrinologists to act within the spirit of the new policy when they review the child’s care plan when up until now they were (and perhaps still are) uncritical enthusiasts for PBs? Not a single endocrinologist has admitted publicly there were problems with the use of PBs or voiced support for the policy change.
Research
The Cass review, NHS England and medical bodies have called for more research on gender treatments in general and puberty blockers in particular. As a result of the The Interim Cass review NHS England established a National Research Oversight Board, to research gender treatments in general and to explore the feasibility of a study into PBs.
We have argued in our contribution to the consultation that research on puberty blockers is unlikely to be feasible for ethical and methodological reasons. It is interesting to see that the NHSE report conveys some uncertainty about whether such a study will ever happen.
In order for the clinical study to become operational, it will need to pass the usual ethics and approvals process
Should the study not gain the usual approvals, no child or young person would be eligible for the study.
NHSE
This suggests NHSE anticipates a situation whereby such a study might not gain approval. We think that is very likely because we cannot see how an interventional study on, say, the effects of puberty blockers on cognitive function, would get ethical approval, given what we now know about the potential adverse effects of puberty blockers on the adolescent brain.
Here Professor Sallie Baxendale explains some of the concerns:
Why were blockers used in the first place?
Furthermore there is basic uncertainty about the purpose of puberty blockers and why they were being used.
As Dr Cass said in her interim review:
As already highlighted in my interim report, the most significant knowledge gaps are in relation to treatment with puberty blockers, and the lack of clarity about whether the rationale for prescription is as an initial part of a transition pathway or as a ‘pause’ to allow more time for decision making.
There is lack of consensus and open discussion about the nature of gender dysphoria and therefore about the appropriate clinical response.
Hilary Cass
Without addressing that fundamental question of purpose – what is being treated and why – it is hard to see how one can justify any interventional study of PBs. This takes us back to the fundamental question of aetiology – the nature and cause of the condition in question. Without an understanding of aetiology, and clarity on aims and purpose of treatment, there can be no rational basis for research into treatment.
Why the changing demographic?
In 2019 the Government Equalities Office announced that it would commission new research to explore the nature of adolescent gender identity and transitioning to better understand the issues behind the increasing trend of referrals of adolescents to NHS gender dysphoria service. It is extremely disappointing that, five years later, no work seems to have been done on this. Had there been such a sudden rise in incidence of any other condition deemed serious enough to require millions to be spent on treatment, one can be sure it would have been extensively researched by now. The mental and physical health of teenage girls seems to be a low priority.
Any research programme must urgently investigate the epidemiology of gender dysphoria/gender incongruence such as how prevalent it is, how and why its incidence is changing, who it affects, and its natural history. This was recognised in the terms of reference for the Cass Review which included “exploration of the reasons for the increase in referrals and why the increase has disproportionately been of natal females, and the implications of these matters”. We hope that her final report will have more to say on this issue.
Private providers
Private providers, both regulated and unregulated, are still able to provide children and adolescents with puberty blockers and cross sex hormones. All children deserve safeguarding from harm. If puberty blockers are banned for NHS patients why not for all patients if it is about risk and safety? When we raised concerns about this in our contribution to the PB consultation NHSE replied that it was not responsible for the private sector. But it is responsible for child safeguarding as this is “everybody’s business” and it should be making representation to the government to close the loopholes that allow private prescribing of substances that have been deemed too unevidenced and unsafe for the NHS to use. We hope the final Cass report will have something to say about private provision and this may act as a spur to the government to act to make all prescribing of these substances outside of national guidelines illegal.
Meanwhile Sue Evans, psychotherapist and former staff member at the Tavistock GIDS is making a legal challenge to the decision of the Care Quality Commission to register Gender Plus as a private provider of hormonal treatments to children and young people aged 16 and above.
Cross sex hormones
Just after NHSE published its final policy banning routine use of puberty blockers, it published an updated policy on cross sex hormones. There was no fanfare, no big announcement and there appear to be no plans to consult on it. This had all the appearance of a policy they hoped to slip under the radar. And no wonder. The policy on cross sex hormones is a copy and paste of the 2016 policy, apart from the requirement to have been on puberty blockers for a year prior. It advocates the use of cross sex hormones (testosterone and oestrogen) from the age of 16 and ignores the conclusions of the NICE evidence review which showed no evidence of safety or benefit from cross sex hormones. It is totally out of step with the tone and content of Cass’s interim review which signalled a move away from hormonal intervention towards psychosocial support. We hope that the final Cass review prompts further changes to this policy and proper consultation.
Detransitioners
The policy change on puberty blockers came about because their use was lacking in evidence of benefit and was potentially unsafe. This change in policy is part of a wider shift away from medical intervention towards psychological support as first line treatment for those who are distressed by or questioning their gender. It is incumbent on the government and NHSE to think about those who have already been through a process that is now recognised as flawed, and who may be regretting it, and who wish to stop the process of transition or even try to reverse aspects of that process. There are increasing numbers of such detransitioners, but still no services for them. What services for the physical and mental health of detransitioners is NHSE proposing? CAN-SG has written twice to NHSE and not received an answer.
17 year olds to be referred to adult services
It is proposed that 17 year olds be referred directly to adult clinics because of the long waiting times for youth gender services which means they are unlikely to get an appointment there before they turn 18. Given the very long waiting times this is likely to start to be applied to 16 year olds too. If so that means these 17 and 16 year olds will miss out on the holistic psycho-social approach of the new youth services and be exposed to the adult services where there is no expectation of psychological support and hormones can be prescribed after just two consultation. This is unacceptable and we must demand that provision is made for 17 and 16 year olds to be seen in the new youth gender services as a priority.
Gender services for 18-25 year olds
The problems identified by Cass in the youth gender services are likely to apply to younger adults. About two thirds of referrals to adult gender clinics are 18-25 year olds. The demographic pattern of young adults is similar to that for adolescents – predominantly female with adolescent onset gender dysphoria. There is no reason to think that the complexities and co-morbidities will be any different – 18 is an arbitrary cut off but we know problems don’t suddenly disappear when people turn 18. As Ritchie Herron says, if someone has a mental health problem that can reduce their capacity to give informed consent to irreversible procedures. The treatments for 18+ year olds include cross sex hormones and surgery (double mastectomy and/or genital surgery). These treatments are irreversible. They affect long term health, sexual function and fertility. After just one or two consultations 18 -25 year olds are making decisions that will have lifelong consequences.
Adult services currently have no requirement to provide psychological support and can prescribe hormones or refer for surgery after just one or two consultations, with no requirement to contact the patient’s GP to gain background medical information such as history of serious mental health issues.
Why is the quality of care for people over 18 so different from that proposed for those under 18? Surely it is obvious to everyone that the same wise observations about the complex nature of gender dysphoria in children and adolescents, and the need for careful exploration, apply to adults, especially younger adults who are barely out of adolescence, still developing their identities and sexual orientation, and who may have as many complex issues as those under 18? We are told there is going to be a consultation on services for 18-25 year olds.
CAN-SG believes there needs to be an urgent Cass style review of services for 18-25 year olds as the basis for any proposed policy changes and consultation.
Social transition
Hilary Cass’s interim review said it was important to acknowledge that social transition is not a “neutral act” and to view it as an active intervention because it may have significant effects on the child or young person in terms of their psychological functioning. She said that better information is needed about outcomes. Social transition is a clinical intervention about which, as with other treatments on the gender affirmative pathway, little is known of its risks or effects. There is evidence that social transition can consolidate a child in a particular “gender identity” and make it more likely they will continue on a medical gender affirmative path of hormones and surgery. CAN-SG wrote about the risks of social transition here. We believe that clinicians, parents and schools should not be supporting social transition until and unless much more is known about its effects. We hope the Cass final report will say more about the risks of social transition.
Conclusion
The recent confirmation of the NHS England decision to ban routine use of puberty blockers in children and young people is very positive and will go a long way to protecting children and young people from harm, but there are still important unresolved issues and further questions.
We await the final Cass report and hope that will lead to more clarity. Even if Cass’s final report does not address all these points, the principle that care for gender questioning children and young people should be safe and evidence based has been established and sets a precedent for further challenges to harmful policies and practice.