Gender dysphoria, as defined by the NHS, is “a term that describes a sense of unease that a person may have because of a mismatch between their biological sex and their gender identity. This sense of unease or dissatisfaction may be so intense it can lead to depression and anxiety and have a harmful impact on daily life.”
People with gender dysphoria will often take a number of steps to affirm their true gender identity. This may include social steps (e.g. using a chosen name of their true gender, or those gender pronouns), and legal steps, such as legally changing their name or applying for a gender recognition certificate. Many take medical steps including hormone treatment and/or gender affirming surgery. Not all people with gender dysphoria will take all of these steps, and the approach is highly individual.
Gender dysphoria often begins in childhood, though in many cases is not diagnosed until puberty or later. For sufferers of gender dysphoria, puberty can be traumatic. It is around this time that gender dysphoria is often diagnosed as the sufferer begins to feel that their physical body does not match their gender identity. For diagnosis to occur, a GP will usually refer the patient to the Gender Identity Development Service (GIDS) – a service run by The Tavistock And Portman NHS Foundation Trust - which provides support tailored to the needs of children. All gender dysphoria cases within the UK will be referred to GIDS. Diagnosis and treatment is usually a combination of psychological support and medical treatment.
However, the fact that gender dysphoria is often diagnosed at a young age presents a number of issues:
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Ability to gain consent – treatment for gender dysphoria will often be hugely invasive. It is a cornerstone of our medical system that patients give their informed consent to any treatment they are to undergo, but how can a child give informed consent?; and
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Accuracy of diagnosis – young children, and even many teenagers, often don’t have the language or emotional range to be able to accurately describe and explain their thoughts and feelings. There is no medical test for gender dysphoria and there are cases where sufferers have been misdiagnosed and subsequently “detransition”.
Informed consent
A failure to obtain informed consent for treatment, including surgery, is a matter of clinical negligence. In order for a patient to give informed consent, they must be given information about the benefit, risks and alternatives of a particular treatment. The patient must be competent to understand this information and to make an informed decision in respect of their treatment. The difficulty here arises with the age at which a person is able to make that decision. Prior to the age of 16, most children are not deemed competent to consent to medical treatment, and that decision is often made by parents. However, hormone blocking treatments can be given to children and young people as young as 10. It is the practice of GIDS to obtain the consent of those children and young people, rather than the parents and GIDS is clear that puberty blockers cannot be administered without the patient themselves giving consent.
A judicial review arose in the case of R (on the application of) Bell v The Tavistock And Portman NHS Foundation Trust. This was a judicial review concerned the lawfulness of the process by which the practice of Tavistock through GIDS obtained consent to prescribe puberty suppressants to minors. In this case, the court was asked to review the methods GIDS used to obtain consent. In the case, the Claimant, Quincy Bell, stated that children were unable to give informed consent to hormone blocking treatment and that the information provided by GIDS was “misleading and insufficient”. The court considered the clinical practice and standard of GIDS compared to international standards, the process of taking consent, and the effect and reversibility of hormone blockers.
In Bell, the court determined:
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Children aged 10-13 are unlikely to ever be able to provide informed consent to puberty blocking treatments;
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It is doubtful that children aged 14-15 are able to understand that long-term impact of such treatment in order to be able to give consent; and
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Young people aged over 16 are presumed to be competent to consent so long as they have mental capacity and clinicians felt the treatment was in the patient’s best interests.
The impact of the judgment is that puberty blockers should not be prescribed to someone under the age of 16 without the consent of the court. However this in itself presents a number of complex issues:
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The patient may, in fact, be able to consent, even if they are under 16. Requiring the court to approve the decision removes that person’s free will;
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Court processes can be costly and time consuming. Is it expected that the costs will be borne by the patient or the NHS? In either event, this will likely reduce the availability of treatment for under-16s as a result of either (a) an individual being unable to afford the costs of application to court; or (b) more likely, NHS funding being used on the court process, resulting in less funding available for provision of treatment;
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The delay caused by the necessity of a court application (or the patient having to wait until 16 before beginning treatment) may cause unnecessary harm to the patient, who may in a state of severe distress, only worsened by the delay in their treatment; and
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The courts are not clinicians. Are we leaving medical decisions in the hands of lawyers?
It is also important to note that the Bell case was not a clinical negligence case. It was a judicial review aimed at reviewing the process by which GIDS obtain consent from patients. It did not look into the appropriateness of treatment or the accuracy of diagnoses.
However, in cases where treatment has been prescribed, without appropriate informed consent being obtained, and adverse effects are suffered as a result of the treatment, there may be a case for clinical negligence.
Gender-related misdiagnoses
Whilst there are clearly some concerns over the court’s involvement in medical processes, the impact of treatment for gender dysphoria cannot be underestimated. It is important that diagnoses are properly and carefully considered as misdiagnosis can have a catastrophic impact on a person’s life. In Bell the court noted that there was some professional disagreement over the reversibility of puberty blockers. Whilst many professionals stated that the treatment was “fully reversible”, the studies related to their use in precocious puberty – a condition which is vastly different to gender dysphoria. The information provided by GIDS themselves states ‘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.’.
And what about those who take further medical steps to gender affirmation, such as surgical affirmation which may not be as easily reversible?
Former NHS staff have accused the NHS of “over diagnosing children” with gender dysphoria, and there are stories where underlying psychological issues have impacted a person’s decision to seek treatment. Those people have later come to realise that they were not suffering with gender dysphoria at all, leaving them with the complex task of attempting to detransition. Whilst many are concerned that these stories should not become ‘big news’ as it may impact on public views and willingness to support the trans community, these are real people with a very complex issue, and due to the stigma around both gender dysphoria and detransitioning, it is not known how widespread this issue is.
In such cases of misdiagnosis, there may be a claim for clinical negligence for failure to seek informed consent. However cases are such a rarity that the court’s view is unknown at this time.
Conclusion
The issue of gender misdiagnosis is hugely complex. Gender dysphoria is a serious condition with life-threatening consequences – according to Stonewall, almost half (48%) of trans people have attempted suicide and 84% have considered it. The NHS should not be deterred from providing treatment to those suffering with gender dysphoria. However, the concerns over young people being able to give consent to treatment, and the enormous complication involved in detransitioning, the importance of getting the diagnosis correct cannot be underestimated either.
At this stage there continues to be no straight answer to this question. As we have already pointed out, leaving medical decisions in the hands of lawyers is dangerous, and therefore, as lawyers, we won’t be attempting to give an answer. However, what a we can do is provide advice in suspected cases of clinical negligence, and you should call Richard Harriman on 01494 893563 if you have any queries in this regard.