Bell & Anor v The Tavistock And Portman NHS Foundation Trust [2020] EWHC 3274 (Admin)
Introduction
This was a claim for judicial review of the practice of the Defendant’s Gender Identity Development Service (GIDS) and two other Trusts joined as Interveners (University College London and Leeds Teaching Hospitals NHS Trusts) of prescribing puberty blockers (“PBs”) to persons under the age of 18 experiencing gender dysphoria.
The issue at the heart of the claim was whether informed consent in the legal sense could be given by these children and young people. The court considered the issue in two parts: (1) whether, in principle, informed consent could be given by children or young persons and (2) if they could, whether the information provided by the Defendant and Trusts was adequate for providing informed consent.
The judgment was given by Dame Victoria Sharp (President of the Queen’s Bench Division), Lewis LJ, and Lieven J.
Terminology
Gender dysphoria (“GD”) was defined in the judgment at [3] as “a condition where persons experience distress because of a mismatch between their perceived identity and their natal sex, that is, their sex at birth. Such persons have a strong desire to live according to their perceived identity rather than their natal sex.”
The judgment was concerned with a specific type of PB called gonadotropin-releasing hormone agonists (GnRHa) which suppress the physical developments that would otherwise occur during puberty.
As set out in [15] of the judgment, there are three stages of physical intervention for those with gender dysphoria: (1) administration of GnRHa, appropriate for either natal girls who have started developing breasts or natal boys whose testicles and scrotum have begun to get larger (2) administration of cross-sex hormones, prescribed from around the age of 16 and (3) gender re-assignment surgery, which is only available to those over age 18.
In this article, the term “children” describes persons under the age of 16, and “young person” describes those between the ages of 16 and 18.
GIDS and available data on its users
At [13] to [21] the court set out how GIDS operates. The key points were that:
- GIDS takes referrals from a wide range of professionals [16].
- Once a referral is made, the case is discussed with the relevant regional team and, if successful, will proceed to the GIDS waiting list [16].
- The current waiting time for a first assessment is 22-26 months [17].
- A child/young person will receive a number of assessment appointments, typically 3 to 6 over 6 months but there may be more [17].
- During assessments the child/young person will be asked a range of questions about their GD [18].
- At the end of this assessment period, a care plan is agreed with the child/young person and their family [21].
- If the criteria are fulfilled, a child/young person will be referred by GIDS to the Intervener Trusts for assessment with endocrinologists with a view to being prescribed PBs. The Defendant’s evidence was that, before any referral, GIDS clinicians discuss the treatment, including explaining side effects [21].
At [22] to [35] the court considered the available data on patients prescribed PBs. It noted that prior to 2011, PBs were only prescribed to those aged 16 or over. In 2011 PBs started to be prescribed for those aged 12-15 and in mid puberty as part of the Early Intervention Study. The court noted that the Study had not yet been published. Furthermore, the court noted with surprise that the Defendant had not collated data on the age distribution of those treated with PBs between 2011 and 2020 [27-28] although data for 2019/2020 was provided. It was noted [29] that for the year 2019/20, 26 of the 161 children referred by GIDS for PBs were 13 or younger (i.e. 16%) ; and 95 of the 161 were under the age of 16 (i.e. 59%).
The court also noted with surprise that the Defendant had carried out no analysis as to why referrals to GIDS had increased very significantly [31], or as to why the data suggested that an increasing proportion of natal females were being referred [32] and also had not collated any data on the proportion of patients referred for PBs with a diagnosis of autistic spectrum disorder (in circumstances where the Defendant’s own Service Specification highlighted that a significant proportion of those presenting with GD have a diagnosis of autistic spectrum disorder) [33-35].
The consenting process
The court examined the evidence as to the consenting process at [36] to [47].
The Defendant’s position was that:
“they will only refer a young person for PBs if they determine that person is competent to give consent, i.e. is Gillick competent within the meaning of competence identified in the decision of the House of Lords in Gillick v West Norfolk and Wisbech Health Authority [1986] AC 112.” [36].
It was explained that GIDs takes consent from patients to refer them to the Intervener Trusts but consent for the actual prescription of the PBs is taken separately by the clinicians working for the Trusts [37]. The Defendant’s evidence was that GIDS clinicians make it very clear to children and young people that there are both known and unknown risks associated with GnRHa treatment [39]. Furthermore, it was noted that the consenting process undertaken by the Intervener Trusts was separate, and their evidence was that decisions did not automatically follow on from those made by GIDS [40].
The court asked for statistics as to how many people had been assessed as suitable for PBs but had been determined to not be Gillick-competent either by GIDS or the Trusts. No data could be provided. At [44] the court noted that:
“The court gained the strong impression from the evidence and from those submissions that it was extremely unusual for either GIDS or the Trusts to refuse to give PBs on the ground that the young person was not competent to give consent. The approach adopted appears to be to continue giving the child more information and to have more discussions until s/he is considered Gillick competent or is discharged.”
The court also noted evidence from a neuroscientist that, in her view, given their level of brain development:
“it is very possible for an adolescent to be unable to fully grasp the implications of puberty-blocking treatment. All the evidence we have suggests that the complex, emotionally charged decisions required to engage with this treatment are not yet acquired as a skill at this age, both in terms of brain maturation and in terms of behaviour.”[46]
As to the relevance of parental consent, the Defendant made it clear that they had a policy that a parent could not consent to PBs on behalf a child who was not Gillick-competent [47]. (Readers may be interested to know that a recent decision has considered this issue further and will be analysed in a future issue – (AB v CD & Ors [2021] EWHC 741 (Fam)).
The effect of PBs and their relationship with cross-sex hormones (CSHs)
The Defendant’s case was that the purpose of PBs was to give the child/young person time to think about their gender identity [52]. However the court noted that there was a second purpose – to stop the development of the physical effects of puberty in order to make a later transition easier [55].
The other issue was the relationship between PBs and cross-sex hormones. The Defendant was clear that PBs and CSHs (Stage 1 and Stage 2, set out above) were completely separate. However the court’s view was that the evidence showed that “practically all children / young people who start PBs progress on to CSH.”
There was no data from GIDS showing the proportion of patients who move from PBs to CSHs [58]. A Dutch expert provided evidence that, of those who start PBs, only 1.9% did not proceed to CSH [57]. The court found at [59] that the language used in the witness statements of clinicians from GIDS and the Trusts suggests that a similarly high proportion of children and young people in the United Kingdom move from PBs onto CSH as in the Netherlands.
As to the effect of PBs, the court considered this issue at [60] to [68]. The Defendant’s position was that PBs were reversible. The Claimant argued that:
The other issue was the connection between PBs and CSHs, as it was undisputed that CSHs have irreversible effects.
At [69] to [74] the court considered the evidence that PBs were an experimental treatment. At [71] it noted that “the lack of a firm evidence base for their use is evident from the very limited published material as to the effectiveness of the treatment, however it is measured.”
At [75] to [77] the court considered the question of ‘persistence’ i.e. whether the prescription of PBs and/or affirmative treatment can lead to the persistence of GD in patients in circumstances where, without such treatment, their GD would resolve. At [77] the court stated: “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.”
At [78] to [89] the court considered a number of witness statements including from the Claimant (a natal female who de-transitioned) but also from patients who had successfully transitioned and were wholly supportive of their care.
The parties’ submissions
At [90] to [104] the court set out the submissions of the parties.
As set out in [93], the Claimant submitted that: “a child still going through puberty is not capable of properly understanding the nature and effect of PBs and weighing the consequences and side effects properly.” Furthermore, in their submission, PBs were properly described as an experimental treatment. Additionally, there was evidence that PBs have side effects, and evidence that children who start PBs will progress to irreversible CSHs. The information provided to patients was misleading as to the reversibility of PBs, their purpose and their benefits.
The Defendant and Intervener Trusts submitted that their process was fully compliant with the relevant regulatory frameworks, as well as Montgomery v Lanarkshire Health Board [2015] AC 1430. Counsel for the Intervener Trusts argued that the child or young person did not need to understand the impact of CSH on their fertility because that did not fall to be decided at the stage of prescribing PBs. The PBs provided the space for the person to think about further stages [100].
The Gillick decision
At [105] to [107] the court considered the decision which lay at the heart of this case – Gillick v West Norfolk and Wisbech Health Authority [1986] AC 112, a House of Lords decision considering the lawfulness of a policy by which children were given contraceptive advice without parental consent. The House of Lords held by a majority that a doctor could lawfully give contraceptive advice and treatment to a girl aged under 16 if she had sufficient maturity and intelligence to understand the nature and implications of the proposed treatment and provided that certain conditions were satisfied. The court also considered a number of decisions which applied the Gillick principle in the context of treatment for anorexia [109] to [113]; refusal of a blood transfusion [114] to [115] and putting up a baby for adoption [116] to [118]. At [119] to [124] the court also considered the parties’ submissions as to Montgomery v Lanarkshire Health Board [2015] AC 1430, the well-known decision on informed consent.
At [126] to [132] the court set out its key conclusions:
- Whether a person is Gillick-competent to make a decision will depend on the nature of the treatment proposed as well as that person’s individual characteristics. The assessment is necessarily an individual one. Where the decision is significant and life changing then there is a greater onus to ensure that the child understands and is able to weigh the information.
- However the court can draw some lines. It was undisputed that, for example, a 7 year old being treated for precocious puberty with PBs could not give informed consent.
- Efforts should be made to allow the child or young person to achieve Gillick competency where that is possible.
- Not every individual under 16 can achieve Gillick competence in relation to the treatment proposed. Depending on the treatment, it might be that Gillick competence can never be achieved.
- The bar should not be set too high. It is not appropriate to equate the matters that a clinician needs to explain, as set out in Montgomery, to the matters that a child needs to understand to achieve Gillick competence. A person should be able to understand an explanation of that information in broad terms and simple language. The child or young person needs to be able to demonstrate sufficient understanding of the salient facts.
- In deciding what facts are salient and what level of understanding is sufficient, it is necessary to have regard to matters which are those which objectively ought to be given weight in the future although the child might be unconcerned about them now e.g. the impact on fertility and on future sexual functioning.
Conclusions
At [133] to [150] the court set out its conclusions.
The court noted at [134] that PBs as a treatment are unusual because (1) they are experimental, in that there is uncertainty as to their consequences and limited evidence as to their efficacy (2) the purpose of PBs is unclear, i.e. whether they are prescribed to provide a patient with ‘time to think’ or to limit puberty such that a later transition is easier and (3) the consequences of the treatment are complex, can be lifelong, and are life changing.
Further as to the unique nature of PBs as a treatment, the court found at [135] that “in other cases, medical treatment is used to remedy, or alleviate the symptoms of, a diagnosed physical or mental condition, and the effects of that treatment are direct and usually apparent. The position in relation to puberty blockers would not seem to reflect that description.”
The court also found that PBs and CSHs form “one clinical pathway and once on that pathway it is extremely rare for a child to get off it” [136] and that it was appropriate to see PBs as a “stepping stone” to CSHs [137],and therefore a child must understand the consequences of both treatments in order to be Gillick competent [138].
The court observed at [139] to [141] that it was very difficult for a child to balance and weigh up this sort of information, and that many children treated by GIDS were especially vulnerable [142].
The court did not accept that simply providing more information to children would resolve the issue, finding at [144]:
Again at [150], the court found:
As a consequence, in relation to children, the court found:
As to young persons, i.e. those aged over 16:
The court accepted that a balance must be struck between intrusion into the autonomy of a young person and protection of that person, but in this case the protective role of the court was appropriate.
Concluding thoughts
The practical upshot of this decision is that, in relation to children under the age of 16, an application to the High Court for a declaration that PBs are in the child’s best interests will be required before they can be administered. In relation to young persons over the age of 16 it will not be necessary but may be appropriate if there is any doubt or a dispute with the person’s parents.
In terms of wider implications, in the author’s view, the decision as to Gillick competence is likely to be confined to the specific facts of the case. The court emphasised its view that puberty blockers were unusual, and even unique, as a course of medical treatment (see for example [134] and [135]) in terms of its experimental nature (in the court’s view), its purpose, and the fact that it is a treatment with very clear physical effects for a condition which has no physical manifestation. Furthermore, it remains disputed as to whether gender dysphoria is properly categorised as a medical condition.
Permission to appeal to the Court of Appeal has been granted and so this decision is unlikely to be the final word on this difficult and highly controversial issue.
Jeremy Hyam QC and Alasdair Henderson of chambers acted for the Claimant in this case. They did not contribute to this article.
