Challenge to guidelines that shape clinical practice at GIDS

by Mrs Y

Challenge to guidelines that shape clinical practice at GIDS

by Mrs Y
Mrs Y
Case Owner
Mum of a 16 year old being treated at the Tavistock Clinic.
Funded
on 24th February 2021
£6,255
pledged of £20,000 stretch target from 154 pledges
Mrs Y
Case Owner
Mum of a 16 year old being treated at the Tavistock Clinic.

Latest: May 4, 2021

Update on our case

Thank you to everyone who has donated to my potential case. Since threatening legal proceedings there have been some significant developments that have impacted my decision on whether or not to proce…

Read more

Summary 

I am concerned that the guidelines that shape clinical practice at GIDS have been shaped by activism rather than by independent evidence based review. This means that  a child’s  belief in their gender identity is positively affirmed without question making it more likely they will  embark on risky experimental medical treatment that has irreversible lifelong consequences.

Psychological and therapeutic approaches that help children live at ease in their natal sex need to be freed from political pressure  so the right support can be given without fear of  accusations of unethical treatment or conversion therapy. 

Background 

Approaches to treating gender dysphoria 

Positive Affirmation 

In this approach a child or young person is affirmed by the clinician in their belief about their gender identity. They are called the pronouns and name that they have chosen. 

A prominent group of authors has written that "The gender identity affirmed during puberty appears to predict the gender identity that will persist into adulthood." ( C. Guss et al. (2015), Transgender and Gender Nonconforming Adolescent Care: Psychosocial and Medical Considerations, CURR. OPIN. PEDIATR. 26(4) 421 at 421 ("TGN Adolescent Care). Similarly, a comparison of recent and older studies suggests that when an "affirming" methodology is used with children, a substantial proportion of children who would otherwise have desisted by adolescence-that is, achieved comfort identifying with their natal sex-instead persist in a transgender identity. (Zucker, Myth of Persistence).

This approach increases the risk that they will embark upon experimental medical treatment with irreversible lifelong consequences.

Watchful Waiting 

 Watchful waiting seeks to allow the fluid nature of a person’s identity to naturally develop over time.  Watchful waiting has been shown to produce very positive results in children and adolescents. In a recent article summarising 11 studies (J. Cantor (2019), Transgender and Gender Diverse Children and Adolescents: Fact Checking of AAP Policy, Journal of Sex and Marital Therapy), the author reported that "every follow-up study of GD [gender dysphoric] children, without exception, found the same thing: By puberty, the majority of GD children ceased to want to transition."

Developmentally Informed Exploratory Psychotherapy

Another approach that has been shown to be successful is developmentally-informed exploratory psychotherapy - where therapists work with young people to better understand the causes of their distress and explore what factors may be contributing to the distress. Several authors have described this approach as successful for many (but not all) young people with gender dysphoria.

Medical Treatment 

Medical treatment involves the child or adolescent receiving puberty blockers and then moving on to cross-sex hormones ( which the overwhelming majority do). Some young people then move on to surgical interventions. 

This medical treatment ( puberty blockers ) has been noted by Professor Carl Heneghan of the Oxford Centre for Evidence Based Medicine as being experimental and unsafe. He noted in an article in the BMJ dated 25/02/19 :

“The development of these interventions should, therefore, occur in the context of research, and treatments for under 18 gender dysphoric children and adolescents remain largely experimental. There are a large number of unanswered questions that include the age at start, reversibility; adverse events, long term effects on mental health, quality of life, bone mineral density, osteoporosis in later life and cognition. We wonder whether off label use is appropriate and justified for drugs such as spironolactone which can cause substantial harms and even death. We are also ignorant of the long-term safety profiles of the different GAH regimens. The current evidence base does not support informed decision making and safe practice in children.”

Professor Heneghan’s caution was recently affirmed by the judgement of the High Court in Bell v The Tavistock and Portman NHS Trust where the Court rule that the treatment was experimental. 

The NHS Service Specificatio

Clinical services for children and young people at the Tavistock are provided through a contract between NHS England and The Tavistock and Portman NHS Trust. That contract sets out the acceptable clinical approach that should be used in treating young people with gender dysphoria. It requires clinicians to follow the Guidance given by the World Professional Association for Transgender Health (WPATH). WPATH is a trans-advocacy organisation. It has produced guidelines for clinical care ( The Standards of Care V7) which have not been the subject of evidence-based review. 

WPATH’s guidelines state : 

“treatment aimed at trying to change a person’s gender identity and expression to become more congruent with sex assigned at birth has been attempted in the past without success (Gelder & Marks, 1969; Greenson, 1964), particularly in the long term (Cohen-Kettenis & Kuiper, 1984; Pauly, 1965). Such treatment is no longer considered ethical. “

This bold guidance relies upon research that has very significant shortcomings and fails to account for evidence that shows the effectiveness of psychological interventions. The citation from 1969 describes a single case of an unsuccessful attempt at aversion therapy for a mature adult transvestite male. The second paper from 1964 does not deal with psychotherapy at all, instead focusing on the exploration of the role of sexual orientation conflicts in the development of gender identity. The 1984 paper is a Dutch paper where gender affirming medical treatment and psychotherapy were both described as “helpful”. The 1965 paper makes only cursory mention of psychotherapy for adult males and recommends lobotomy as a possible intervention to ameliorate distress. None of these papers support the emphatic statement that treatment that aims to reconcile a person with their natal sex is either ineffective or unethical.

All the more worrying is the omission of the WPATH Standards of Care Committee to include evidence available at the time that showed promising outcomes for young people receiving therapeutic interventions. Lothstein (1980) cites several studies documenting the resolution of GD in young people following psychotherapy. Greenson (1966) published a detailed case report in which psychoanalytic psychotherapy successfully resolved GD of a female identified boy. Davenport and Harrison (1977) describe the case of an adolescent girl who desisted from trans identification after two years of talk therapy. Kirkpatrick and Friedman (1976) present two cases of young adult desistance from a transgender identification following psychotherapy.

This Guidance for WPATH, that NHS clinicians have to follow, is a political guideline from an activist organisation. It creates a culture of fear where clinicians are fearful of being accused of being transphobic or of conducting conversion therapy if they try to help a child or young person be more at ease in their natal sex. It inevitably leads to affirming the child or young person’s belief in their gender identity. 

Our story 

I am the mum of a 16-year-old girl who is currently being seen by the Tavistock clinic. Having learned about being trans on the Internet she identifies as a boy and says she wishes to medically transition. From the very first interactions with the clinic, our daughter’s belief that she is a boy has been affirmed. She has a diagnosis of autism and was (before coming out as trans) exploring her sexuality and romantic attraction to girls. It seems possible that these things may be contributing to her current feelings about gender but I don’t believe that the clinic is exploring them in any depth.  Rather, it feels they are leading us on a pathway to medical transition. Our worry is that by simply continuing to affirm her chosen identity rather than adopting a more watchful, waiting and curiously questioning approach, the medical pathway becomes the most likely outcome for her

Potential Legal Challenge 

I would like to bring a judicial review to challenge the political guidelines that are shaping clinical practice for children and young people with gender dysphoria. I understand that if a public body like the NHS makes a policy and takes irrelevant considerations into account or fails to take into account relevant considerations then the policy is unlawful. 

I believe that the guidance from WPATH which the NHS has accepted has failed to take account of the success of psychotherapy and has also warned clinicians about supposed ineffective and unethical treatment on the basis of irrelevant research. The effect of this is to limit the clinical options open to young people. Effective informed consent requires that a patient is offered a range of clinical options. This guidance excludes treatment that will not only help young people be at ease in their natal sex but which also increases the risk that they will be exposed to experimental treatment which has irreversible lifelong consequences. 

Hilary Cass is conducting a review into practice at the Tavistock. The terms of reference of that review note : 

“In recent years there has been a significant increase in the number of referrals to the Gender Identity Development Service, and this has occurred at a time when the service has moved from a psychosocial and psychotherapeutic model to one that also prescribes medical interventions by way of hormone drugs.”

It is some time off and unclear when the Cass review will report and in the meantime many children and young people will be denied a clinical approach that would help them reconcile with their natal sex. I am therefore looking to bring these concerns before the court so that appropriate clinical treatment can be offered sooner rather than later. 

Funding - I need your help

The costs of bringing a case against a public body can be very significant, both in terms of our lawyers costs and the costs of the NHS. 

We are taking a staged approach and I initially need £7500. If the NHS do not agree to address the concerns, then I will need to significantly stretch this. My solicitors have written to the NHS and  I will update this page on their reply and let you know if more funds are needed. Thank you for helping me protect my daughter and many other young people from the risks of an experimental medical treatment. 

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Update 1

Mrs Y

May 4, 2021

Update on our case

Thank you to everyone who has donated to my potential case. Since threatening legal proceedings there have been some significant developments that have impacted my decision on whether or not to proceed. The case of AB v CD in March held that parents could consent to their children receiving puberty blockers if their children could not. As a result of that case the NHS has decided that if children want puberty blockers then they need to be assessed by the Tavistock AND an independent review body. NICE have also shed further doubt on the efficacy and appropriateness of blockers.

The new process will mean it takes a longer time to obtain blocking treatment and that there will be a further safeguard. Also, Dr Hilary Cass will report on the appropriateness of current clinical guidelines which makes it more difficult to challenge these through the case.

Whilst I remain concerned that the current clinical guidelines are more a result of politics than clinical review, I have decided not to pursue my case. The recent changes have given us some pause and hope that we can help our daughter resolve her GD without the need for experimental treatment.

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