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 and 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.