Last week, the High Court handed down the judgment in the highly publicised case of Bell v Tavistock (R (Quincy Bell) and A v Tavistock and Portman NHS Trust, and others  EWHC 3274).
In this blog post, compiled by several members of the TP team, we attempt to outline the issues put to the Court, the key points made in the judgment, and to answer some of the questions still being debated.
The case concerned a claim for judicial review of the practice of prescribing puberty blocking drugs to children (under 18), who experience gender dysphoria, at the Gender Identity Development Service (GIDS), part of the Tavistock and Portman NHS Foundation Trust. The Court considered whether the provision of information on this treatment was enough to render a child competent to give informed consent to the treatment.
The case was brought by separate claimants. Keira Bell (referred to as Quincy Bell in the case title) was born a girl and began to question this actively from the age of 14. She was referred to GIDS at age 15 and began puberty blocking treatment at age 16. She went on at age 17 to commence cross sex hormones and underwent a mastectomy at age 20. Keira gave evidence about receiving extensive and detailed advice from GIDS but subsequently doubted that she had made the right decision to proceed with treatment.
Mrs A, the second claimant, has a 15 year old daughter who Mrs A believes is at risk of undertaking sex change treatment although not fully understanding its implications. Mrs A’s daughter has however not been referred to GIDS and would not meet their criteria because parental consent is withheld.
In addition to the evidence of the claimants and of various medical professionals, the court also received the evidence of several other young people who had undergone treatment for gender dysphoria at GIDS and who were happy with their treatment and choices. This is relevant to the Court’s reasons for refusing permission to appeal, which appears to deal with a complaint that the court had wrongly excluded some children’s evidence:
“S was not debarred from taking part because of procedural failings. He had applied to intervene by way of written evidence and written and oral submissions to ensure that the voice of the child was heard. Shortly before the hearing, it transpired that, though he had not disclosed this when making the application to intervene, he had already made a witness statement (albeit using a different initial) which had been put in evidence by the defendant. The voice of the child, and this particular child, was heard.”.
The judgment is given by a Divisional Court of three High Court judges, including the President of that Division, which signals the public importance of the case. It begins by providing an explanation of gender dysphoria :
‘Gender dysphoria or GD is a condition where persons experience distress because of a mismatch between their perceived identity and their natal sex’
and outlines that a decision as to whether or not puberty blockers should be prescribed to a child under 18 who has gender dysphoria is based on obtaining their informed consent.
Puberty blockers are gonadotropin-releasing hormone agonists (GnRHa) which suppress the physical developments that would otherwise occur during puberty.
The claimants argued that children under 18 are not competent to give consent to a prescription of puberty blockers and that therefore the Health Trust’s practice was unlawful. It was also argued that there was a lack of adequate information to ensure that consent could be informed and that this, in addition to the lack of procedural safeguards, was an infringement of a child’s rights to respect for their private and family life under Article 8 of the European Convention on Human Rights.
A key point raised by the claimants was that while the physical effect of taking puberty blockers is reversible, the missed experience of the usual development of boys or girls (biological, social and psychological) during adolescence cannot be reversed. It was also suggested that the provision of puberty blocking drugs was the pathway to further cross-sex hormone treatment, which is not reversible.
GIDS maintained that they only refer a child or young person aged under 16 for puberty blocking treatment if the child is ‘Gillick competent’ (explained below). The clinician then administering the puberty blocking treatment will also make an assessment of Gillick competence.
The judgment provided a reminder of the Gillick competence test, which stemmed from the case of Gillick v West Norfolk and Wisbech Health Authority  AC 112. In that case, the House of Lords stated that a child under 16 will be competent to consent to medical treatment if they have ‘sufficient understanding and intelligence to understand the nature and implications of the proposed treatment.’ In Gillick, the issue was prescription of contraception, but the test has subsequently been applied to consent to medical treatment in general. Where a child is not Gillick competent, consent to any treatment should normally be sought from those with parental responsibility. In Bell, the High Court confirmed that Gillick competence was the correct approach to adopt for under 16s asking for GIDS treatment.
The High Court emphasised that a child under 16 would need to understand the immediate and long-term consequences of puberty-blocking treatment. The court said that children would also need to understand the limited evidence available as to the efficacy or purpose of the treatment, the fact that the vast majority of patients proceed to the use of cross-sex hormones, and its potential life changing consequences for the child.
The High Court held that in order for a child to be competent to give informed consent to puberty blockers, the child would have to understand, retain and weigh the following information:
- the immediate consequences of the treatment in physical and psychological terms;
- the fact that the vast majority of patients taking puberty blocking drugs proceed to taking cross-sex hormones and are, therefore, a pathway to much greater medical interventions;
- the relationship between taking cross-sex hormones and subsequent surgery, with the implications of such surgery;
- the fact that cross-sex hormones may well lead to a loss of fertility;
- the impact of cross-sex hormones on sexual function;
- the impact that taking this step on this treatment pathway may have on future and life-long relationships;
- the unknown physical consequences of taking puberty blocking drugs; and
- the fact that the evidence base for this treatment is as yet highly uncertain.
The Court acknowledged the difficulties a child would face in understanding and weighing up this information and thus suggested that it is ‘highly unlikely’ that a 13 year could give informed consent and that it is ‘doubtful’ that a child aged 14 or 15 could weigh up the long-term implications.
The court took a different approach to young people aged between 16 and 18, because here there is a statutory presumption that these young people can give valid consent. However, the court said that clinicians may well regard these as cases where the authorisation of the court should be sought before starting treatment with puberty blocking drugs, given the long-term consequences and the experimental nature of it.
The judicial review was therefore partially successful and means that in practice it will now be very difficult to be satisfied that, or be able to demonstrate that, a teenager under the age of 16 has a sufficient grasp of the issues to be able to give informed consent. This means that (unless the decision is successfully appealed) puberty blockers are unlikely to be available without court authorisation. The NHS immediately suspended new referrals for puberty blockers and cross-sex hormones for the under-16s, which it said would “only be permitted where a court specifically authorises it.”
Questions being asked about or in light of this judgment
What is the purpose of puberty blockers for children with gender dysphoria?
This was a contentious issue in the case. GIDS argued that it was to give children space to think about next steps without their body marching on, meaning if they wished to progress to sex change the process would be less complex (because there would be less to reverse by surgery). The court thought the evidence was unclear on this point, and was concerned that in fact the evidence suggested that starting puberty blockers might firm up a child’s position and make it harder to overcome their dysphoria.
The court said :
“it is not our role to adjudicate on the reasons for persistence or otherwise of GD. However, the nature of this issue highlights the highly complex and unusual nature of this treatment and the great difficulty there is in fully understanding its implications for the individual young person. In short, the treatment may be supporting the persistence of GD in circumstances in which it is at least possible that without that treatment, the GD would resolve itself.”
The court didn’t resolve this issue – the point for the purposes of its decision was that the evidence was unclear, and this uncertainty was something that children would need to understand before consenting.
Does puberty blocking treatment inevitably lead to further treatment?
The judgment does not say that puberty blocking treatment will inevitably lead to further treatment such as cross sex hormones and surgery. However, the evidence presented by the parties made clear that there is a strong correlation between PB treatment and further interventions like these, and that statistically most teenagers who take puberty blockers do progress to the next stages (the court looked at both GIDs’ own and international data).
Why did the court decide that under 16s had to understand all about the risks of cross sex hormones and surgery before consenting to Puberty Blockers?
In indicating that the young people would need to appreciate the risks and complexities of CSHs and surgery when providing consent to puberty blockers, the High Court’s eight guidelines essentially treat puberty blockers as the first stage in a likely progressive treatment pathway. An alternative view we have seen expressed is that a high number of GIDS puberty blocker patients go on to cross sex hormones / surgery because of GIDS’ effective screening and selection processes.
The language of paragraphs 138-9 which deal with this issue reflects the sort of language used in respect of adult incapacity. There has been debate in those cases as to what is included in “information relevant to the decision”, in particular as regards capacity to engage in sexual relations. The question of whether it was right for the High Court to lump together the different stages of a treatment pathway in this way, and to require information to be provided and understanding shown in respect of all three stages, thereby making the consent hurdle at the first stage much more difficult to achieve, may well be a feature of any appeal. In short, is it right that in order to access puberty blockers, young people should also have to get to grips with other treatment that may follow?
Do under 16s now have fewer rights to consent to medical treatment, for example, access to contraception advice or abortion?
There is nothing in the Bell judgment to suggest that well established law and practice regarding medical advice and treatment for anything other than puberty blockers has changed. What will amount to informed consent will be specific to the treatment in question, and the eight guidelines apply specifically to puberty blocking treatment. It is possible that the judgment could be used to support attempts to persuade the courts to identify similarly unattainable consent requirements in respect of other treatments, however many commentators have observed that the nature of PB treatment is quite different to contraceptive treatment, for example because it is not experimental and is reversible. See this tweet thread from Tor Butler-Cole for one view on how likely such an attempt would be to succeed.
What about parents?
The judgment tells us that GIDS do not offer puberty blocker treatment to children based on parental consent. They only offer such treatment on the basis of informed consent from the child him/herself. The judicial review therefore did not really consider the issue of parental consent. Arguably the decision could give parents an opportunity to express their worries and concerns through a court process, although it’s unclear whether or not parents in such cases would qualify for legal aid for representation.
Why did the court say the treatment was experimental?
Puberty blockers have been used for decades to treat children who experience early puberty. They have also been used for some time to treat gender dysphoria – i.e. to stop the progression of puberty which is occurring at a normal age. Whilst puberty blockers are reversible in the sense that, if they are stopped, puberty will resume, there was a lack of data about other long term impacts on things like bone density and fertility. And, the court noted that there may be socio-psychological impacts on children by virtue of being in a suspended pubertal state during their teenaged years. This topic is one of several areas of contention, but whilst there are undoubtedly lots of children and young people who have been treated with puberty blockers and consider it to have been beneficial or even life saving (some of whose evidence the court had) the court’s focus was on the lack of longitudinal and robust peer reviewed research whether from GIDS or elsewhere. Presumably GIDS presented what they thought was the best available data in support of their case, but rightly or wrongly, the court concluded that there was lots of uncertainty about the long term outcomes of puberty blockers. The Court also thought puberty blockers were potentially causally connected with subsequent more invasive and irreversible treatments.
What data does GIDS hold about the characteristics of young people who they treat?
The data presented to the court by GIDS and from international sources suggested that both at GIDS and more broadly there had been a marked shift over a short space of time from approximately equal numbers of natal boys and natal females presenting with gender dysphoria, to a position where the there are now significantly more natal girls presenting (at GIDS this was 76%). Although the GIDs service specification paperwork referred to a comparatively high proportion of children presenting also being diagnosed with autistic spectrum disorder (consistent with international data), GIDS were unable to provide the court with any figures on this for their patients. The High Court commented several times in the course of the judgment on how GIDS could not provide reliable statistics on this and on other issues, such as how many of its patients had a mental health diagnosis, the age breakdown of its patient cohort etc. The court expressed its surprise on these gaps in the information available, given the serious and experimental nature of the treatment.
How will under 16s be able to get puberty blocking treatment in future?
The answer to this depends on the outcome of any appeal (see below), but if this decision is upheld, the High Court will need to authorise any future prescription of puberty blockers to under 16s in most cases, and in some cases even where the young person is 16 or 17.
What will happen to GIDS treatment services now?
A statement on the GIDS website says that :
“The Court has ruled that there will be a stay on implementation of its judgment until the later of 22 December or the determination of any appeal. This will give us a chance to work through the specific implications of the judgment for different patient groups with our partners, University College London Hospitals NHS Foundation Trust and Leeds Teaching Hospitals Trust. We will not be making new referrals to endocrinology until we have more clarity.”
This probably means that whilst children on the waiting list or who are not yet in receipt of puberty blockers will not be able to progress until the question of any appeal is dealt with, there may be some room for continuation of treatment already underway, because there is no legal bar on treatment while the High Court order is suspended. We anticipate the GIDs team are now probably working through these issues on a case by case basis.
Will the case be appealed?
The High Court has refused an application to appeal – see the detailed reasons why the request was refused, which gives some idea of what arguments were put forward on that application. It is usual for the court that has made the decision to refuse permission to appeal, and it is still open to GIDS to apply to the Court of Appeal for permission to appeal (there are reports suggesting they will be making such an application). Whether they succeed will depend on whether the Court of Appeal considers that the appeal has a real prospect of success or there is some other compelling reason for the appeal to be heard. If permission is granted the appeal will succeed if the Court of Appeal concludes that the decision of the High Court was wrong or that it was unjust because of a serious procedural or other irregularity.
Feature pic : listen by Randy Adams on Flickr – creative commons – thanks!
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