Analysis by GenderGP of the Judgment in the case of Quincy [Keira] Bell and Mrs A against The Tavistock Clinic and Portman NHS Trust
It is clear that the verdict in the case against The Tavistock Clinic and Portman NHS Trust will fundamentally alter the provision of trans healthcare in the UK. If we are to positively influence this outcome in any way going forward, we need to understand how this happened.
In this article we will analyse the specific areas in which The Tavistock Clinic failed to prove to the court that this is a safe, well-evidenced form of medical intervention for transgender youth to which young people can have the required capacity to consent.
IN THE HIGH COURT OF JUSTICE ADMINISTRATIVE COURT DIVISIONAL COURT
THE PRESIDENT OF THE QUEEN’S BENCH DIVISION LORD JUSTICE LEWIS
MRS JUSTICE LIEVEN ———————
Claimants – (1) QUINCY BELL (2) MRS A
Defendant – THE TAVISTOCK AND PORTMAN NHS FOUNDATION TRUST
Interested Party – NATIONAL HEALTH SERVICE COMMISSIONING BOARD (NHS ENGLAND)
SECTION A: INTRODUCTION AND BACKGROUND
This case arose because the Claimants, listed as ‘Quincy Bell’ (known publicly as Keira bell) and ‘Mrs A’ asked the courts to review the practice of the Gender Identity Development Service prescribing puberty blockers to patients under the age of 18 with Gender Dysphoria.
They described the process whereby patients are referred to GIDS for assessments and are then referred on to the Endocrine services either in Leeds or in London for treatment recommendations. They described how this can happen to children as young as 10 and how GIDS require consent from the patients who are prescribed these drugs.
This process in itself is immediately problematic. In standard UK clinical practice, a patient would be assessed by a doctor or clinical nurse early on in the process to decide on a management plan, and specifically if any medical intervention was needed prior to any psychological intervention.
It is worth noting that the medical assessment of trans patients when going through The Tavistock only takes place once the young person has accessed and completed the Clinic’s psychological assessment process. This leaves the psychologists in charge of assessing eligibility, to explain the information to the patient, obtain consent and refer for treatment. It is only at this stage that the doctors that prescribe blockers or hormones become involved.
As was outlined by the court the ‘issue at the heart of this claim is whether informed consent in the legal sense can be given by such children and young persons.’ In order to arrive at a verdict, they looked at the legal requirements of the process of obtaining consent, and the long and short term impact of blockers.
Of course, this was a request for a judicial review, not a medical review. The case the judge was required to determine was whether a young person could be legally able to give consent. Not whether this treatment was right, effective, or safe – just whether, in the UK, a young person could achieve the capacity to be able to legally give consent to the treatment.
It is easy to think this case relies on Gillick competence where a young person under the age of 16 can consent to treatment, but in order to be Gillick competent, a young person must be able to properly understand the information given to them, and any potential impact of the proposed treatment.
This was the matter posed to the court, could a person as young as 10 understand enough to legally be Gillick competent to consent to this treatment?
Quincy [Keira] Bell and Mrs A’s case was that young people are unable to give their consent to blockers and that the information given to the patients by The Tavistock Clinic is ‘misleading and insufficient’.
This was a very clever strategy on the part of the claimants. They were not challenging whether this treatment was right or wrong, as there is plenty of evidence to show that it is the correct treatment for a young person. Instead, they challenged the notion of whether or not a young person was competent enough to consent, and in addition, they claimed that the information given by GIDS was substandard.
Had The Tavistock Clinic used protocols and guidelines that are in standard use across centres of excellence across the world, they would have been able to rely on published evidence as to the indication and impact of puberty blockers in this patient cohort. However, they do not. Instead, they rely on their own clinical protocols, service specifications and patient information leaflets, which differ from the accepted international approach. Thus, they had to justify their protocol unsupported by what can be considered to be standard practice.
In making their case, it seems that a large proportion of the evidence provided by The Tavistock Clinic to the court was regarding the nature of Gender Dysphoria, and the treatments available. However, the judge was very clear that this was not the matter at hand, their role in the case was to determine whether a young person could legally give consent to the treatments provided by this clinic.
One wonders how much of the defence pack was wasted by this point being missed. The review was not about the right treatment, but the circumstances of consent. We will see later how their process of information sharing and consent would result in them being exposed.
Statements were given by Dr Polly Carmichael (psychologist), Director of GIDS, Professor Gary Butler, Consultant in Paediatric Endocrinology at University College Hospital London, and Dr Nurus-Sabah Alvi, Consultant in Paediatric Endocrinology at Leeds General Infirmary. There were also statements from a ‘variety of people concerned with the treatment of those under 18 with PBs’.
It was explained that The Tavistock, which is commissioned by the National Health Service Commissioning Board, has operated since 1989. Unfortunately, the NHS Commissioning board failed to attend the hearing and was not represented in court. As such it was unable to provide any evidence to support The Tavistock Clinic’s practice. It is not said why the commissioners did not see fit to attend such an important hearing.
Dr James Palmer is the chair of the Programme Board for Gender Identity Services which is responsible for making recommendations to the Specialised Commissioning Oversight Group. In 2018 he wrote[ii] that they would be ‘publishing a final version of the specifications in the Spring of 2018’ and ‘Alongside the process for finalising the service specifications we are also exploring potential models of care and models of delivery, and I will keep you updated by way of this blog.’ There have been no updates since that date and he seemingly did not present any evidence to the court.
When citing the law, the judge recognised that Gender Dysphoria in children is classified as a ‘rare and very rare’ condition. These ‘Highly Specialised Services’[iii] such as the GIDS Gender Dysphoria Service are for cases of usually no more than 500 cases per year.
This once again has left The Tavistock Clinic vulnerable as they should no longer be the only NHS service providing this care. The number of referrals they receive is published on their website[iv] and we can see that this has risen from 1408 referrals in 2015/2016 to 2728 in 2019/2020. Clear evidence that The Tavistock should have relinquished its stronghold on the management of this condition long ago.
GIDS should have responded to this growth by providing the necessary training for other units so that they too could provide care, it should have encouraged the standard operation of such services, enabling GPs to manage uncomplicated cases, local hospitals more complex cases, leaving specialist centres for the much rarer cases – in keeping with the role of a Highly Specialised Service. This approach would also have resolved the issue of waiting times for treatment which at the time of the case sat over the 18-month mark.
Had they have taken this approach there would not have been only one defendant on the stand, the treatment would be standard UK clinical practice, and it would have been recognised in the same way as other medical conditions in children.
The contract between The NHS, which is legally responsible for arranging the service to be provided, and GIDS who provide the service, is outlined in the ‘Service Specifications’[v]. These describe the treatment as one designed “to help reduce the distressing feelings of a mismatch between their natal (assigned) sex and their gender identity.”
This was again going to prove problematic for The Tavistock Clinic during the hearing. If you compare this to for example, a cancer treatment, the treatment is designed to cure cancer and prolong life. The alleviation of the distressing feelings is a secondary one. For Gender Dysphoria, the treatment is designed to prevent pubertal development of the birth assigned gender and induce pubertal development of the true gender identity. This in turn will alleviate distress. However, the Service Specifications did not state this, they give the primary reason for treatment as alleviation of distress rather than prevention of pubertal development.
Of note, the Service Specifications were due to be reviewed on 31/12/2019 and renewed on 01/04/2020, it is not known if this happened as there is no evidence of anything having been published.
The GIDS treatment protocol was also seen to cause them issues. Other centres providing care to youth would evaluate a young person to see what their immediate and long-term needs were and thus negotiate a working management plan. This could be that they are prescribed blockers early on to alleviate the distress associated with pubertal development, and thus allow some time for psychology and support needs. Other young people may feel that blockers are a waste of time as pubertal development is in late stages, and that hormones are the correct option. Others may want to explore their gender in detail before making any decisions on medical intervention. This clearly defines the different elements of intervention and assistance.
However, the GIDS protocol is to have a psychology-driven assessment period of six months or more before a consideration of a referral to endocrinology. Then all patients would be prescribed blockers, regardless of age or stage of puberty, and they would be on them for at least a year and at least until the age of 16.
GIDS could not provide data on how many young people did or did not go on to hormones, and thus had to agree with the assertion that the treatment was in fact one stream and that all patients prescribed blockers would progress to hormones. Thus, if a young person was consenting to treatment, they would have to show the capacity to understand both blockers and hormones. When faced with the emotive long-term effects on fertility and sexual function, the judge determined that was a large ask for a younger child.
In her evidence, Polly Carmichael explained the assessments that take place prior to the treatment and that the individual is referred to the endocrinologists to be prescribed blockers. She explained that The Tavistock Clinic discusses the treatment with the young person, including any side effects. The court seemed surprised that the consent process was undertaken by a different Trust to the one that recommends the medication.
No note was made that the medication itself is actually prescribed by the General Practitioner on the recommendation of the Endocrinologist, and it is the prescriber who is legally responsible for the prescription.
The Age and Patient Group for Puberty Blockers
The court noted that until 2011, the young person had to be 16 to be prescribed blockers, but this changed in 2011 to ages 12-15. They heard of the ‘Early Intervention Study’ which is studying a treatment cohort of 12-15 year olds with established and persistent Gender Dysphoria in England.
It was noted that this study did not have a control group – i.e., it wasn’t comparing the outcomes to a group of young people who did not receive puberty blockers. This does raise concerns as to the set-up of the study.
The court had been told (we don’t know by who) of the ‘non-existent or poor evidence base, as it is said to be, for the efficacy of such treatment for children and young persons with GD.’ Of course, the judge wanted to see the results of the Early Intervention Study, but they have not yet been published despite the fact that ‘this research study was commenced some 9 years ago’.
The study allowed for children aged 12-15 to be prescribed blockers, yet the court heard that children as young as 10 were being treated. This means that up until 2011, you had to be 16 to have blockers. Between 2011 and 2014, the Early Intervention Study recruited patients to evaluate whether it would be beneficial or otherwise to treat young people aged 12-15. The findings have not yet been published. In 2020 they are offering blockers to children at least as young as 10. Of course, the court wanted to see their data and records of outcomes, did the treatment work, did the patients get better, did it have the desired effects, were there any adverse effects? However, GIDS was unable to produce such data.
We know that this is clinically accepted practice in managing Gender Dysphoria where it is recommended that blockers are started at Tanner Stage 2, but that was not what was being asked of the courts. They were being asked for evidence that young people would be able to give consent and that they could understand the proposed treatment. But The Tavistock Clinic was unable to produce data on its practice or on safety and without this how could they adequately provide evidenced-based recommendations to patients?
The Tavistock could not produce any figures on the numbers and ages of patients actually treated with blockers, even though they said that they did have such data. This of course looks highly unprofessional and incompetent and the judge stated, ‘We note here that we find it surprising that such data was not collated in previous years given the young age of the patient group, the experimental nature of the treatment and the profound impact that it has.’
The numbers of children referred by GIDS to the endocrine clinic was available and ‘26 of the 161 children referred were 13 or younger; and 95 of the 161 (well over 50%) were under the age of 16.’ From this, the court noted that there was a possibility that some young people could be on blockers for five years if they started blockers at the age of 10 and did not start hormones until 16. This indeed causes concern for bone and brain development, but it is the protocol and length of use that causes concern, rather than the treatment itself.
Again, this diversion from current best practice raised concerns on the part of the court. Preventing adolescent development for five years is not insignificant and to the courts, the claimants’ concerns that the effects of such a lengthy delay being unknown is a valid one.
Bone density relies on hormones and to go through adolescence with no hormones is alarming. Like other centres, the UK NHS service should have recognised that in young patients starting blockers, introducing gender-affirming hormones earlier than 16 in eligible patients would address some concern over bone density.
The concerns about brain development and bone density were allowed to arise because GIDS were recommending blockers in patients younger than their Early Intervention Study remit. They were also being recommended as a stand-alone treatment up until the age of 16, without any published data to be able to alleviate concerns over brain and bone development. Where were the results of the bone densitometry scans, the mental functioning? Where were the results which compared children who did not receive puberty blockers, with those who did?
On another issue, the court noted two relevant changes to the referrals over the years. Firstly, an increase from 97 children in 2009 to 2519 in 2018. Secondly in 2011 the gender split was 50/50 and in 2019 79% were assigned female at birth. To their detriment, The Tavistock Clinic could not explain either phenomenon, the judge recording that ‘The defendant did not put forward any clinical explanation as to why there had been this significant change in the patient group over a relatively short time.’
Another factor used against The Tavistock Clinic was their own record in their Service Specification that a significant proportion of those presenting with Gender Dysphoria have a diagnosis of Autistic Spectrum Disorder (ASD). GIDS was asked for ‘the number or proportion of young people referred by GIDS for PBs who had a diagnosis of ASD.’ However, the data was not available which the court found ‘surprising’.
One of the main legal arguments in favour of younger patients being able to consent to treatment is that of Gillick Competence[vi]. In the legal case of Gillick, it was determined that children under 16 can consent if they have sufficient understanding and intelligence to fully understand what is involved in a proposed treatment. The court purported that children who had a diagnosis of ASD, or a ‘mental health diagnosis’, could conceivably have difficulty in understanding treatment options.
The court expressed concern that The Tavistock Clinic did not have any data and had seemingly not investigated these important factors.
The process of taking consent
GIDS stated that they would only refer for blockers if the patient was deemed competent to consent. Polly Carmichael explained that GIDS takes consent, but the Trust’s clinicians authorise the treatment. Again, this approach is not standard practice and leaves questions open as to its safety, particularly when in reality this medication is actually prescribed by the GP.
In the evidence to the court, the claimants raised their concerns that this treatment was not evaluated and not safe, and it seems that evidence given by the defendants further backed this up.
It was noted that the Service Specification state, ‘The consequences of treatment decisions can be significant and life-changing’ and went on to raise issues of fertility and that there is ‘limited scientific evidence for the long-term benefits versus the potential harms of the intervention.’
Polly Carmichael said in her statement: ‘The GIDS clinicians make it very clear to children and young people that there are both known and unknown risks associated with GnRHa treatment.’
It is hard to defend the opinion that this is an unsafe and unevaluated treatment, when the GIDS’ own publications agree.
Regarding the process of consenting to such an apparently unknown medication, Polly Carmichael and Gary Butler who explained the consent process to the court, felt that this information was comprehensive in allowing a young person to understand the treatment.
Professor Butler stated that the decisions at UCLH and Leeds do not automatically follow on from those made at the GIDS Tavistock implying that not all patients go on to receive treatment when referred.
At this point an interesting issue was raised about parental consent. There will be situations in medicine where the parent has one opinion about treatment and the child has another. Some children due to fear, lack of knowledge, age or illness may refuse to consent to a treatment that the parent and doctors know will be of benefit. The child’s wishes can be overruled in simple cases, or the courts can be asked to make a final decision.
There are also situations where the parent would not consent, the most obvious being contraception or abortion, but the young person is deemed capable of giving consent in their own right and the doctors go on to allow treatment.
Professor Butler said that their clinic has never applied to the court to decide on cases where there is a mismatch between parental and child consent ‘because he is concerned that would cause familial frictions’. He also suggested that his clinic would not wish to ask the court to consent on behalf of a child ‘because it would delay treatment and put an additional burden on GIDS and the Trusts’.
This must have seemed surprising to the court that with a condition such as this, which is known to be politically and socially emotive, the courts have never been asked to make a decision on the best interests of the child. What if a child wishes to have the treatment, and the treatment is indicated and safe, but the parents refuse? Why have there been no applications to the court to decide? Equally, if a child is transgender and this is a treatment that is needed, but they are unable to consent in their own right, how come the courts have not been asked to support the wishes of the parent?
The court wanted to know the numbers of young people who had been assessed as being Gillick competent and the numbers who had not. The Tavistock Clinic could not provide such data and ‘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.’
Even worse, they summed it up as, ‘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 reality is true, if that person needs treatment but is unable to give consent in the way that The Tavistock Clinic requires, they are simply discharged.
Evidence was heard from Professor Scott (Director of University College London’s Institute of Cognitive Neuroscience). Her view was that ‘even if the risks are well explained, that in the light of the scientific literature, that it is very possible for an adolescent to be unable to fully grasp the implications of puberty-blocking treatment.’
Sadly, there seemed to be no balancing argument put forward by an expert provided by The Tavistock Clinic. The judge can only determine on the information given to him and we had experts for the Claimants, Polly Carmichael, Gary Butler and GIDS’ literature all agreeing that the treatment risks are unknown. Of course, this is going to be a concern if we are asking young people to understand the possible effects of a medication in the long term.
In their evidence GIDS was very clear about parental consent, ‘GIDS has never administered, nor can it conceive of any situation where it would be appropriate to administer blockers on a patient without their consent.’
What does this mean? In standard medical practice, if a treatment is needed and the doctor is concerned that the child is unable to show enough understanding to give their own consent, the parents can consent on behalf of the best interests of the child. GIDS, however, were unable to use this argument that if the child is young and there is too much to take in, we can rely on the parent, because there had never been a situation where they had done this.
GIDS state that no child would be given the treatment without their own consent, and this then removes the counterargument that if the child wasn’t able to understand enough to give consent, the parent could step in and help.
The effect of Puberty Blockers
It is an often used and true argument that blockers have been used for many years to stop precocious puberty and no adverse effects have been found. However, as blockers that are prescribed for precocious puberty are not continued all the way through adolescence, as is GIDS protocol for transgender youth, that comparison was discounted here.
Quincy [Keira] Bell and Mrs A provided an expert witness from Washington, USA, Professor Hruz[vii] is a professor of Peadiatric Endocrinology. Professor Hruz does not seem to include the care of transgender youth in his clinical experience. He explained to the court the effects of puberty blockers and gender-affirming hormones. Again, The Tavistock did not seem to rely on any external expert witness evidence to counter his concerns.
The court went on to note that there was ‘some dispute as to the purpose of prescribing PBs.’ Polly Carmichael stated that they were ‘to give the young person time to think about their gender identity.’ and this was also backed up on the written information in GIDS and Trust information documents.
The court also looked at The Health Research Authority report when they carried out an investigation into the Early Intervention Study in 2019. GIDS had said that blockers were given ‘to induce a sex hormone-neutral environment to provide young people with space to decide whether to progress further with gender reassignment treatment as an adult.’
However, it was noted that the patients in the study had progressed on to treatment with hormones, and this allowed the concern to be raised that treatment with blockers might in some way ‘be responsible for generating persistence, rather than ‘creating space to decide’.’
The court stated that it would have reduced confusion if GIDS had stated the correct use of blockers which is to prevent the body changes associated with pubertal development and thus allow ‘cross-sex hormone treatment without the need to surgically reverse or otherwise mask the unwanted physical effects of puberty in the birth gender.’
The relationship between Puberty Blockers and Cross-Sex Hormones (CSH)
The court went on to review the relationship between blockers and hormones. It wanted to understand whether a young person, who was consenting to blockers, would almost inevitably go on to hormones. It did not seek to explore whether this meant that, if they did, the diagnosis was right, but rather to see whether in fact someone who was consenting to blockers should really be consenting to hormones at the same time. If all patients go on to hormones, then they would need to understand their effects from the start.
GIDS and the endocrinologists argued that the two stages of treatment are separate, that blockers are Stage 1 and hormones stage 2. Unfortunately, they were unable to give precise numbers of patients who did not proceed on to hormones leaving the assumption to rest, that all patients went on to hormones.
Dr De Vries is the psychologist who leads the Centre of Expertise on Gender Dysphoria at the Amsterdam University Medical Centre gave evidence that 1.9 % of patients stopped the treatment and did not proceed to hormones.
Once again, the court found it ‘surprising’ that Polly Carmichael and Gary Butler could not provide their data on this.
The impact of Puberty Blockers and their reversibility
The court noted that ‘Both WPATH and the Endocrine Society in their documentation describe PBs as ‘fully reversible’’. However, Professor Butler stated that ‘we do not know everything about the blocker and as far as we know it is a safe reversible treatment with a well-established history.’ Dr Alvi from Leeds agreed that they were fully reversible.
However, it was noted by the court that apart from the Amsterdam study, the history of the use of blockers relied upon in this context is from the treatment of precocious puberty, which is a different condition from gender dysphoria, and where blockers are used in a very different way.
Dr De Vries, psychologist, gave her view which was ‘the administration of puberty blockers in young people has no irreversible physical consequences.’ She went on to say that ‘Ethical dilemmas continue to exist around … the uncertainty of apparent long-term physical consequences of puberty blocking on bone density, fertility, brain development and surgical options.’
As this hearing was about the information provided by GIDS, their information leaflet was examined. ‘As far as we are aware, the hormone blockers will not harm your physical or psychological development.’ and ‘We do not fully know how hormone blockers will affect bone strength, the development of your sexual organs, body shape or your final adult height’ and ‘There could be other long-term effects of hormone blockers in early puberty that we don’t yet know about.’ and ‘Hormone blockers could affect your ability to have a baby.’
Although GIDS had asserted reversibility, this was thus challenged by the Claimants. They put forward a psychiatrist from Ohio, Professor Levine[viii], an avid contributor to discussions around trans issues, asserted that ‘neurological and psychological changes occurring in puberty are less well understood than the physiological changes. Further, the degree to which neurological differences are caused by biological factors like hormones and genes are matters of debate. Professor Levine set out evidence on the degree to which young people mature through adolescence through both social and personal experiences. For young people on PBs that maturing process is stopped or delayed with potential social and psychological impacts which could be described as non-reversible.’ Again, GIDS did not seem to have an independent expert witness that could provide any counterargument.
The court explained that the claimants were concerned that although the physical consequences of taking blockers may be reversible, the psychological consequences of missing out on pubertal development during the early teenage years had not been considered.
Sadly this was backed up by the recent (June 2020) changes to the NHS Choices website information which prior to this reassured of full reversibility, but now states, ‘Little is known about the long-term side effects of hormones or puberty blockers in children with Gender Dysphoria.’ and ‘Although the Gender Identity Development Service (GIDS) advises that is a physically reversible treatment if stopped, it is not known what the psychological effects may be.’ and ‘It’s also not known whether hormone blockers affect the development of the teenage brain or children’s bones.’ With this sudden and significant change in opinion by this NHS information resource, how can the court feel reassured?
While much consideration is given to the effects of blockers, throughout the whole summary of the hearing there is a startling lack of consideration as to what happens to those young people who do not receive blockers. The fact that pubertal development will continue seems to have been missed as a very important argument that should have been put forward by The Tavistock Clinic.
So much is discussed about what we don’t know might happen if the young person is given blockers, where is the discussion about the harm that occurs if they do not have blockers and go through irreversible body changes that may identify them as trans forever.
One has to wonder whether if GIDS had acknowledged the harm that occurs to a trans youth during the progression of natural puberty, they could be held accountable for the harm caused by their long waiting lists, their rigid protocols and their long assessment processes.
Evidence base to support the use of Puberty Blockers for Gender Dysphoria
Quincy [Keira] Bell and Mrs A put forward witness statements from a ‘number of undoubted experts’ who described the treatment as one that was experimental, with a very limited evidence base, and highly controversial. It is not said exactly who these experts were, and there seemed to be no similar independent expertise put forward by The Tavistock Clinic to counter this opinion.
Nevertheless, the court said it was more interested in the evidence from the defendant, what did they say about the evidence that they use to advocate the use of blockers in Gender Dysphoria?
It is not known what material The Tavistock provided to support the evidence base of the use of blockers, but the judge was left with the opinion 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.’
Further, Paul Jenkins, Chief Executive of The Tavistock Clinic and Portman Trust agreed that there had been concerns raised by some clinicians at the Trust about the use of blockers and the Trust had been asked to alter its practices.
Even though the data on the Early Intervention Study has not yet been published, GIDS quoted initial data and the judge noted that ‘there was no overall improvement in mood or psychological wellbeing using standardized psychological measures.’ Why didn’t the Tavistock defence team call on experts who can give clear evidence for improved mental health, such as this recent study by Julia Sorbara[ix]?
We know[x] that blockers alone do not always improve psychological outcomes, and that trans youth feel better once they are on gender-affirming hormones and are in the puberty that matches their gender. Of course we do not know what the outcomes would have been were the young people in this GIDS study permitted to seek gender-affirming hormone treatments earlier than 16, as we know so many young people who wish to go through puberty with their peers[xi] do.
Once again, the Trust protocols which deny patients treatment according to their need, mean that their data is skewed with poor outcomes that could be avoided. Had the patients been allowed to progress with gender-affirming treatment in accordance with their stage development rather than their age, maybe improvement in their mood and psychological wellbeing would have been different.
Having said all that, the court again agreed that it was not their job to look at the clinical arguments, but whether – if indeed this treatment is experimental: ‘a young person can have sufficient understanding of the risks and benefits to be able lawfully to consent to that treatment.’
Of course, the issue of whether younger patients would revert to their birth assigned gender identity if left untreated would arise in this case. Professor Hruz agreed that maybe they all persist in their gender incongruence because the diagnosis was correct.
However, he also argued that gender incongruence continued as a direct result of the treatment given, i.e., blockers. There is no record of the argument put against this by The Tavistock Clinic and the court deduced that ‘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.’
Additionally, it is written in The Tavistock Clinic information presented in court that: ‘There are also concerns that it is uncertain whether or not a young person will continue to identify as transgender in the future, given that some subsequently identify in a different way.’
SECTION B: EVIDENCE OF THE CLAIMANTS AND OTHER INDIVIDUALS
Quincy [Keira] Bell explained her situation. The court noted that some of the details she gave were disputed, but that was not a matter for this court. She did not seem overly critical of The Tavistock Clinic, just that she ’made a brash decision as a teenager’ and that she cannot ‘reverse any of the physical, mental or legal changes that I went through.’
GIDS defended their practice saying she was given full information and was Gillick competent to consent. They also produced statements from other young people who are ‘strongly supportive of the treatment they have received.’ including statements that ‘The treatment of hormone blockers may very well have saved my life.’
However, it remains, the effects of Quincy [Keira] Bell’s treatment are considerable and irreversible. There did not seem to be any discussion that withholding this treatment, when it is indicated, also has considerable and irreversible effects.
Mrs A’s daughter concurrently has ASD and is said to be ‘desperate to run away from all that made her female’. Mrs A was concerned that she may be referred to GIDS and prescribed blockers.
It was noted at this stage that as Mrs A would not consent to blockers, her child would not be prescribed them by GIDS and therefore her interest in this action was largely theoretical.
This highlights the travesty that could occur when a trans young person is not supported by their parents, and thus would not be eligible for GIDS intervention according to their protocols, however this was not a matter for this court.
SECTION C: SUBMISSIONS
The court needed to decide whether ‘Gillick competence can be achieved’ and whether adequate information is being given. This is an interesting point, because the case is not whether a young person with Gender Dysphoria can be Gillick competent in their own right. The consideration is whether the information that is available, and that can be provided, is enough for a young person to be able to understand the effects, and to therefore be able to be Gillick competent to give consent.
In his submissions, counsel for the claimants put forward emotive notions such as whether a young person could understand ‘the implications of matters such as the loss of the ability to orgasm, the potential need to construct a neo-vagina, or the loss of fertility.’
He summarised that ‘The information is misleading as to the reversibility of PBs, their purpose and their benefits.’ He said that in these circumstances, the court should be asked to give its opinion.
On this issue of fertility, Professor Butler had stated that ‘it is an absolute requirement before starting any treatment that a young person can fully understand this effect on fertility and sexual functioning according to their age and level of maturation.’ This causes a very big problem; the court has to determine whether a ten year old could reasonably understand this.
Counsel for The Tavistock Clinic submitted that the care was in line with WPATH, The Endocrine Society, General Medical Council and Care Quality Commission. They stated that the Cass review was currently underway to review the efficacy of treatment. She argued that the process undertaken by GIDS was thorough, detailed and age appropriate and that the vast majority of patients were 15 or older.
Mr McKendrick QC acting for the Trusts said that young people did not need to understand the impact of hormones on fertility, and that there was no alternative treatment for Gender Dysphoria. He stated that any psychological intervention would have taken place prior to a referral for blockers and therefore ‘the Trust clinicians were faced with a child in acute distress with no alternative treatment options. The purpose of the treatment was to alleviate distress and that, according to Mr McKendrick, had been achieved.’
Mr McKendrick was asked to produce evidence that distress had indeed been alleviated but was unable to do so.
Submissions were then made by Transgender Trend who put forward that they are ‘an organisation that provides evidence- based information and resources for parents and schools concerning children with GD.’ There is deep controversy around the motives of this organisation who are referred to by the community[xii] as an ‘anti-trans group’.
There did not appear to be any submissions invited from ‘pro-trans’ voluntary organisations or other organisations offering treatment to transgender youth in the UK.
SECTION D: THE LAW
The courts referred to various legal cases that were relevant to this case. They deduced several notions to help them reach their determination.
- The case of each person under 16 who is being assessed as being Gillick competent should be taken on their own merits, particularly when the decision is significant and life changing. Not all patients under 16 will be able to achieve Gillick competence.
- The Trust had already stated that for precocious puberty in a 7 year old, the parent would be the one who would have to consent as the child would be too young. This raises the question of how young is too young? What about an 8 year old, or 9 or 10 year old? Where is the line to be drawn when asking a young trans child to consent to the same treatment?
- You cannot equate the matters that a clinician needs to explain, with the matters a child needs to understand. Using the case of Montgomery[xiii] as case law, you cannot expect a child to understand absolutely everything about the potential risks and benefits, that would mean that they were never able to give consent.
- The child or young person needs to be able to demonstrate sufficient understanding of the salient facts. When considering what information is necessary to explain, there are some ‘obvious examples, including the impact on fertility and on future sexual functioning.’
SECTION E: CONCLUSIONS
Again, the court summed up the matter at hand, ’Can a child or young person under the age of 16 achieve Gillick competence in respect of the decision to take PBs for GD?’ and can a 16 or 17 year old give their consent?
On the basis of the evidence put forward by both sides, the judge determined:
- There is real uncertainty over the short and long-term consequences of the treatment with very limited evidence as to its efficacy.
- Therefore, it is properly described as experimental treatment.
- There is a lack of clarity over the purpose of the treatment, is it ‘pause to think’ or to ‘limit the effects of puberty’?
- The effects are potentially complex, lifelong and life changing.
- ‘The treatment goes to the heart of an individual’s identity, and is thus, quite possibly, unique as a medical treatment.’
- The condition being treated, GD, has no direct physical manifestation. In contrast, the treatment provided for that condition has direct physical consequences.
- There is also an issue as to whether GD is properly categorised as a psychological condition, as the DSM-5 appears to do.
- The clinical intervention we are concerned with here is different in kind to other treatments or clinical interventions.
- The consequences that are a direct result of taking the PBs themselves must be evaluated as well as those of taking hormones as the vast majority of children go on to hormones.
- The use of puberty blockers is not itself a neutral process by which time stands still for the child on PBs, whether physically or psychologically and blockers prevent the child going through puberty in the normal biological process.
- As a minimum it seems to us that this means that the child is not undergoing the physical and consequential psychological changes which would contribute to the understanding of a person’s identity.
- There is an argument that for some children at least, this may confirm the child’s chosen gender identity at the time they begin the use of puberty blockers and to that extent, confirm their GD and increase the likelihood of some children moving on to cross-sex hormones.
The end result was that the judge determined that to achieve Gillick competence, they would have to be able to understand the very long-term effects of hormones and that most patients would progress from blockers to hormones and then possible surgeries. The addition that the judge determined that the evidence base for this treatment is as yet uncertain.
The judge determined that it would be difficult for a child under 16 to understand and weigh up all this information and to understand how it will impact adult life, fertility and sexual function. He determined that this was a different type of treatment because it was not treating a condition like other medical conditions of disease or disorder but addressing the concept of identity. He recognised the distressed state that some young patients were in when making these decisions and may not be able to weigh up the long-term risks.
The judge acknowledged that treatments that are considered experimental are consented to in everyday practice, ‘However, the combination here of lifelong and life changing treatment being given to children, with very limited knowledge of the degree to which it will or will not benefit them, is one that gives significant grounds for concern.’
Conclusions by the court:
- It is highly unlikely that a child aged 13 or under would ever be Gillick competent to give consent to being treated with blockers.
- We are very doubtful that a child aged 14 or 15 could understand the long-term risks and consequences of treatment in such a way as to have sufficient understanding to give consent.
- Young people aged 16 or over can be presumed to have capacity to consent if they have mental capacity and the clinicians feel the treatment is in the patient’s best interests.
- We recognise that in the light of the evidence that has emerged, and the terms of this judgment, clinicians may well consider that it is not appropriate to move to treatment, such as PBs or CSH, without the involvement of the court.
- In terms of the information given by The Tavistock, the judge determines that it was not the amount of information given, or the way in which it is given, but whether indeed a young person could possibly understand.
‘A child under 16 may only consent to the use of medication intended to suppress puberty where he or she is competent to understand the nature of the treatment. That includes an understanding of the immediate and long-term consequences of the treatment, the limited evidence available as to its efficacy or purpose, the fact that the vast majority of patients proceed to the use of cross-sex hormones, and its potential life changing consequences for a child. There will be enormous difficulties in a child under 16 understanding and weighing up this information and deciding whether to consent to the use of puberty blocking medication. It is highly unlikely that a child aged 13 or under would be competent to give consent to the administration of puberty blockers. It is doubtful that a child aged 14 or 15 could understand and weigh the long-term risks and consequences of the administration of puberty blockers.’
‘In respect of young persons aged 16 and over, the legal position is that there is a presumption that they have the ability to consent to medical treatment. Given the long- term consequences of the clinical interventions at issue in this case and given that the treatment is as yet innovative and experimental, we recognise that clinicians may well regard these as cases where the authorisation of the court should be sought prior to commencing the clinical treatment.’
The judge recognised that gender dysphoria was a significant condition and was concerned by the potential long-term effects of treatment, but there seemed to be a distinct lack of comment of the serious and lifelong effects of not having treatment with puberty blockers. Both risks of having treatment and risks of not having treatment need to be balanced in an understandable way so that patients can understand what they are consenting to.
Much of the information provided to patients by GIDS contains uncertainty about the long-term effects of blockers, and reiteration of the long-term effects of hormones. The lack of options between the different phases of treatment in the GIDS protocol means that a young person seemingly has to understand the effects of hormones as well as blockers, when giving consent to start blockers.
The length of time that patients are prescribed blockers before going on hormones gives much weight to the fears on risks to bones and brains, it is the absence of hormones caused by the Clinic protocol that causes this fear, rather than the blocker itself. But this was not portrayed. This was backed up by the fact that children prescribed blockers for precocious puberty would only be on them for a couple of years, not the whole of adolescence, and this negated the well-used comparison that they are safe when used short-term in young people.
Information was presented to the court that many patients were distressed by the time they saw the doctor who would authorise treatment. As a service that is supposed to be protecting the mental health of young people, are the outcomes actually that the patients’ mental health scores worsen during their pathway? Is that why they were unable to produce their data on this matter?
The misinformation of why blockers are used, the lack of any data to show that they are safe and effective, and the absence of expert opinion to support The Tavistock all played a significant role in the outcome of this case.
- Where was the evidence and voice from international experts who could lay out the risks and benefits of this treatment?
- Where was the GIDS own data supporting outcomes such as improvement in mood and psychological wellbeing and reduction in harm and suicidality?
- Why does the GIDS protocol deviate from standard international guidance?
- Why are the patients allowed to get to such a distressed state before they reach the Endocrinologist?
- Why are The Tavistock Clinic obtaining consent for a medication prescribed by another Trust?
- Why are gender-affirming hormones not introduced earlier in those patients in whom it is indicated and when it would alleviate concerns effects on bones and brains.
- Which is a better outcome, those who had to endure puberty in their birth assigned gender or those who had induced puberty in line with their gender identity?
- Would acknowledging the poor outcomes associated with not being prescribed blockers have exposed GIDS to the arguments that their long waiting lists and assessments times cause damage?
It stands that in order for any appeal to draw a balanced, evidence-based conclusion, all of these questions must be considered, and data produced to back this up.
GenderGP, November 2020