Australian Standards of Care Part 2

Why the Australian Guidance Matters

(and why we need it in the UK)

  • Why this standard matters, 
  • Why it should be adopted in the UK NHS
  • A comparison between the Australian Standard and UK Service Specification
  • A comparative analysis of the evidence base underpinning the Australian and UK approaches 

The “Australian Standards of Care and Treatment Guidelines for Trans and Gender Diverse Children and Adolescents” provide clear, confident and unequivocal guidance on how to support transgender children. This is something we desperately need in the UK.

In order to understand the significance of this guidance for transgender children and families, we need to talk about fear, confusion and isolation.

At this time in the UK, fear is a constant companion to parents supporting transgender children. Fear of misinformed people reporting us to social services. Fear of ignorant social services grilling us on our parenting. Fear of transphobic judges withdrawing parental access in custody cases. Fear of being accused of child abuse. Fear of being judged. Fear of losing family and friends. Fear of being front page news. Fear of having the tabloids at our door. Fear of our lives being criticised and debated on day time television.

Confusion is common for parents trying to work out how to best support their children. The media is awash with transphobia and misinformation. Transphobic hate groups, often posing as concerned parents, ignore all medical consensus, peddle distorted arguments, debunked research and discredited statistics. UK parents of trans and gender diverse children are forced to themselves become lay experts – reading and analysing the research, appraising the validity of contested data and polarised arguments, trying to come to their own conclusion on what current evidence shows is the best way to support their child.

Isolation is a key feeling for vulnerable parents in the UK. Parents themselves are left to explain the existence of trans children and how best to support them to schools, GPs, hospitals, social services, family courts. Parents are left to try to educate (and defend themselves to) the media, their local community, and to the wider public.

In this swirling storm of fear, confusion and isolation, the UK Children’s Gender Identity Service is at best passive, at worst actively unhelpful. UK parents do not receive clear and coherent public backing, leaving them feeling fearful of their position. UK parents do not receive clear up to date evidence based guidance on how to best support transgender children, leaving families to muddle through the confusion by themselves (leaving some parents vulnerable to manipulation by anti-trans lobby groups). The UK Children’s Gender Identity Service does not consistently provide written guidance for schools or GPs on transgender children, leaving parents to advocate by themselves. The Service does not effectively advocate for transgender children with the media, failing to challenge media distortions, and failing to correct false and harmful misinformation.

The Australian Standards of Care provides a vital framework for reducing the fear, confusion and isolation felt by parents of transgender children and transgender young people themselves. They provide a confident, consistent and clear message on the existence of transgender children. They provide clear and assertive evidence based recommendations on how best to support transgender children (see Part 1 for further details). This confident, credible guidance makes a huge difference to fearful, confused, and isolated parents trying to decide how they should best support their child. Clear credible written guidance not only assists a family to support their child but also makes it more likely that the family will in turn receive the support of their GP, their school, their family, their community.

Having a supportive family has been shown to be absolutely critical to the well-being of transgender children. Reducing fear, confusion and isolation is essential to enable parents to be the supportive family that transgender children desperately need. The Australian Gender Service guidance is a significant step forward for transgender children and families and should be used as a template of best practice internationally.

The UK Children’s Gender Identity Service needs to step up and do better. Our children deserve better. The Australian Service are willing to share their guidance and share their experience with the UK. Are those supporting transgender children in the UK willing to listen?

Contrasting the Australian Guidance with the UK’s approach

Introduction

 

Australia

UK

Transgender children Focuses on “trans and gender diverse children and adolescents” UK does not use the clear term “trans children” (or gender diverse) preferring the convoluted phrase “young people presenting with difficulties with their gender identity”

 

Evidence based “recommendations are made based on available empirical evidence and clinician consensus” UK approach just emphasises uncertainty and lack of knowledge evidence or consensus avoiding making clear recommendations at all (even though “Go Slow” “Watchful Waiting” is obviously a vague not evidenced based recommendation).
Working with families guidance being developed “developed in consultation with professionals….from multiple disciplines, trans and gender diverse support organisations, as well as trans children and adolescents and their families”. UK service does not collaborate with key support organisations – does not consult or engage with trans children and families on their approach.
Prevalence Outlines that with “with increasing visibility and social acceptance of gender diversity in Australia, more children and adolescents are presenting ….requesting support, advice, and gender affirmative psychological and medical treatment”. UK outlines the total lack of any clarity why the rise in referrals, considers the suggestion that girl body image confidence could be a key cause, does not challenge harmful media rhetoric on trends or contagion
Rise in referrals Outlines that with “approximately 1.2% of adolescents identifying as trans” “it is likely that referrals. ….will continue to rise in the future”. UK emphasises the shocking, unexpected inexplicable rise.

 

‘Causes’ Says “being trans or gender diverse is now viewed as being part of the natural spectrum of human diversity”. UK website mentions autism, bereavement, trauma in discussion on reasons for gender identity ‘issues’. As a service they “look at all theories”. UK website reassures that gender diverse expression or interests are normal (no such reassurance that being transgender is normal)
‘Causes’ This Australian guidance was completed before the latest endocrine society official guidelines were released. These include the evidence based conclusion that “there is a durable biological underpinning to gender”. UK website on the other hand says “Current research hasn’t found much difference between ‘boys brains and girls brains – and many of the differences they have found may come from the experiences boys and girls have rather than their DNA or hormonal development”
Gender affirmative care “increasing evidence demonstrates that with supportive, gender affirmative care during childhood and adolescence, harms can be ameliorated and mental health and wellbeing outcomes can be significantly improved”. UK does not endorse or even offer gender affirmative care, preferring the alternative ‘watchful waiting, also known as ‘delayed transition’ despite lack of evidence in favour of this, despite clear evidence in favour of affirmative care, despite affirmative care having been endorsed for children and adolescents in both the USA and now in Australia

General principles for supporting trans and gender diverse children and adolescents

 

Australia

UK

Decision making “Decision making should be driven by the child or adolescent wherever possible, this applies to options regarding not only medical interventions but also social transition”. UK not child driven. Regular UK service discussions questioning competence/ability to consent even of older adolescents.

 

Language “Use respectful and affirming language”. Too many examples of repeat misgendering in the UK system.
Avoiding harm “Avoid causing harm”. “withholding of gender affirming treatment is not considered a neutral option, and may exacerbate distress in a number of ways including depression, anxiety and suicidality, social withdrawal, as well as possibly increasing chances of young people illegally accessing medications”

 

UK’s emphasis on ‘caution’ prioritises inaction over action, totally missing the significant evidence of potential harm of inaction.
Legal requirements “consider legal requirements” outlines legal requirements that are barriers to “obtaining identity documents (eg passport) that accurately reflects their gender”. Considers “implications for young people’s right to privacy and confidentiality when enrolling in school or applying for work”. UK system refuses to support passport gender marker change until adolescence as gender not clear until then. UK system does not advocate for the rights of trans children to privacy or confidentiality.

 

 

Supporting trans and gender diverse children

 

Australia

UK

Gender affirmative approach “Supporting trans and gender diverse children requires a developmentally appropriate and gender affirming approach”. UK does not endorse a gender affirming approach, especially not for younger children
Transgender children Australia guidance take as given, the fact that transgender children do exist, and endorses a child-led approach. UK website shows a sceptical and undermining view: “children can go through various stages of ‘magical thinking’ during which they can get confused between reality versus fantasy, at least until middle childhood and sometimes this can make it hard to know how much a younger child fully grasps what they are saying or understands about their own gender.”.
Family support “for children, family support is associated with more optimal mental health outcomes”

 

UK does not provide families with any clear or consistent guidance on supporting their children, quite the opposite
Support for younger children “trans or gender diverse children with good health and wellbeing who are supported and affirmed by their family, community and educational environments may not require any additional psychological support beyond occasional and intermittent contact with relevant professionals in the child’s life such as the family’s general practitioner or school support”. The UK does not provide this useful advice that happy settled transitioned children do not need extensive gender focused therapy. UK does not advocate for GPs or school to have a role in basic emotional support
Support for younger children with more complex situations “when a child’s medical, psychological and/or social circumstances are complicated by co-existing mental health difficulties, trauma, abuse, significantly impaired family functioning, learning or behavioural difficulties …. a more intensive approach with input from a mental health professional will be required”. This entails an “exploration of the child’s developmental history, gender identity, emotional functioning, intellectual and educational functioning….”. UK does not clearly distinguish between simple cases and those complex cases where more engagement from specialists is needed, pathologising healthy children and wasting time and resources on appointments that are neither wanted nor needed.

 

 

Social Transition for younger children:

 

Australia

UK

Social transition “social transition should be led by the child and does not have to take an all or nothing approach”. UK emphasis that “young children are not usually considered able to make decisions on their own”. Families deterred from supporting social transition for younger children, families already having transitioned prior to entering the service face questioning, judgement.

 

Supporting school and nursery “provision of education about social transition to the child’s kindergarten or school is often necessary to support a child who is socially transitioning to help facilitate the transition and minimise …bullying or discrimination”. UK advises a period of ‘watchful waiting’ (ie delaying transition) according to leading specialist “until at least around 8 or 9”.  Support to nursery or infant school rare.

 

Social transition “social transition can reduce a child’s distress and improve their emotional functioning. Evidence suggest that trans children who have socially transitioned demonstrate levels of depression, anxiety and self-worth comparable to their cisgender peers”. No such clear evidence based reassurance from UK
Risk of social transition “the number of children in Australia who later socially transition back to their gender assigned at birth is not known, but anecdotally appears to be low, and no current evidence of harm in doing so exists”. UK regularly tells parents of socially transitioned children that their specific children will almost certainly end up identifying in their gender assigned at birth (quoting totally debunked desistance rates) and tell families that their children’s social transition will harm their child when they retransition (quoting as unreliable/debunked research (that only considered two children who hadn’t socially transitioned) as evidence).

Website says “However, quantitative and qualitative follow-up studies by Steensma et al (2011; 2013) present evidence to strongly suggest that early social transition does not necessarily equate to an adult transgender identity.  The qualitative study reports on two girls who had transitioned when they were in elementary school and struggled with the desire to return to their original gender role.  Fear of teasing and feeling ashamed resulted in a prolonged period of stress. One girl even struggled to go back to her previous gender role for two years. As such, in our approach, we would encourage exploration of gender roles in this younger cohort, with a view to keeping options open and not having any pre-conceived ideas as the longer term outcome. This could be summarised as a ‘watch, wait and see’ approach.

(NB the two girls in the Steensma paper had not changed pronoun and were not being called boys – therefore had not socially transitioned) so these two old cases or inconsequential in terms of advising on social transition.

Role for clinician with younger child Key roles for a clinician include:

i) Supportive exploration of gender identity over time

 

Lack of an affirmative approach leaves families and children feeling questioned and judged and feeling a need to defend their (or their child’s) gender identity. This non-supportive atmosphere does not enable exploration for those children who need to explore gender. Continual questioning is also deeply undermining, stigmatising and pathologising for children who are extremely clear on their identity, with potential consequences for their self-esteem. Parts of the service still show a regressive, stereotyped and binary approach.
Role for clinician with younger child ii) Work with family to ensure a supportive home environment No clear evidence based guidance to parents on how to support their child
Role for clinician with younger child iii) advocacy to ensure gender affirming support at school Extremely patchy. Some support to some schools, but as demand has risen the service has been unable to keep up leaving very many children and schools without 1-1 support. In absence of 1-1 support clear written guidance on best practices for schools would be useful. Some educational charities and schools have developed guidance, but UK service has not endorsed these and does not offer schools access to written guidance.
Role for clinician with younger child v) Education (to child and family) on gender identity and signposting to support organisations for child and for parents Education to families is extremely weak and outdated. Service continues to state outdated and somewhat transphobic views, and to quote outdated research on desistance. The UK service itself could benefit from more up to date training on gender identity in partnership with a wider range of transgender and gender diverse individuals. The service does not signpost to UK support organisations. It does not even mention Mermaids to parents (the main support organisation for UK parents with over 1000 members).
Role for clinician with younger child vi) If child is expressing desire to live in a role consistent with their gender identity, provision of psychosocial support and practical assistance to the child and family to facilitate social transition UK service do not actively facilitate early social transition, preferring to delay until the family have been in the system for several years. Majority of UK families are therefore not approaching UK system for support – managing their way through social transition on their own and approaching the UK system after social transition. The majority of younger children are now arriving at the system already socially transitioned. There is also a long (8 months+) wait to get into the system – during this waiting period (and during the initial 4 month assessment) the UK service will not engage with or advise the family on aspects of social transition
Role for clinician with younger child vii) referral to endocrinologist ideally prior to onset of puberty UK service extremely reluctant to refer promptly. See no need for prompt referral and do not take into account the harm and stress of dealing with a system that sees no reason for prompt referral. This puts pressure on families to advocate for their children to be referred promptly. The lack of prompt referrals puts extra pressure and stress onto families and creates a barrier between clinician and client. Families feel they have to fight to get a prompt referral. Children without supportive or proactive parents will not receive a referral to an endocrinologist prior to onset of puberty

 

Supporting trans and gender diverse adolescents

 

Australia

UK

Supporting adolescents “adolescents with insistent, persistent and consistent gender diverse expression, a supportive family, affirming educational environment and an absence of co-existing mental health difficulties, the adolescent and parents may benefit from an initial assessment followed by intermittent consultations with a mental health clinician” No acknowledgement that simpler cases do not require extensive mental health engagement.
Supporting parents “adolescents often encounter resistance from their parents when their trans or gender diverse identity is first disclosed during adolescence”. “For the clinician, investing time for parent support… will assist in creating a shared understanding….and enable optimisation of clinical outcomes and family functioning” Lack of clear guidance for parents of adolescents
Fertility counselling “Although puberty suppression medication is reversible and should not in itself affect long term fertility, it is very rare for an adolescent to want to cease this treatment to conduct fertility preserving interventions prior to commencing gender affirming hormones. It is therefore necessary for counselling to be conducted prior to commencement of puberty suppression or gender affirming hormones” Guidance unclear.
Cross-sex hormones “reduction in the duration of use of puberty suppression by earlier commencement of stage 2 treatment must be considered in adolescents with reduced bone density to minimise negative effects.” This is not considered. Arbitrary age based minimum of 15 years 10 months regardless.
Cross-sex hormones “The ideal time for commencement of stage 2 treatment in trans adolescents will depend on the individual seeking treatment and their unique circumstances” “adolescents vary in the age at which they become competent to make decisions that have complex risk-benefit ratios”. “The timing…will also depend on the nature of the history and presentation of the person’s gender dysphoria, duration of time on puberty suppression for those undertaking stage 1 treatment, co-existing mental health and medical issues and existing family support” Arbitrary age based minimum of 15 years 10 months, no consideration of individual circumstance. Also mandatory year on stage 1 treatment prior to stage 2, even for adolescents who have already gone through puberty.
Cross sex hormones “While later commencement of hormone treatment during adolescence provides time for further emotional maturation and potentially lessens the risk that the adolescent will regret their decision, this should be carefully balanced by the biological, psychological and social costs to the adolescent of delaying treatment”. No such consideration in the UK. Arbitrary 15 year 10 month age.
GP support “Role of the General Practitioner in the assessment and ongoing care of adolescents with gender dysphoria”. Page 21 of the guidance lists a number of areas where GP support is expected In the UK all support is channelled through the Children’s Gender Identity Service. This creates bottle-necks, long delays and the time, expense and missed schooling of adolescents (and children) regularly travelling London and a few other locations where specialist support is available. GPs regularly refuse to support trans children and adolescents, claiming simple and straightforward tasks are too complex to be handled at GP level.
Chest surgery “Chest reconstructive surgery may be appropriate in the care of trans males during adolescence”.
Transfer to adult services Transition of care to adult care providers:

“the young person’s GP is vital in facilitating a smooth process and many GPS continue as the primary doctor involved in hormone prescribing and monitoring of mental health after engaging in a shared care agreement during paediatric treatment”

 

GPs routinely refuse shared care. Adolescents are forced to engage with specialists services (in a very limited number of locations) for almost all support. Transfer to adult services is not smooth, with adolescents forced to join a waiting list between children’s and adults’ services.

 

Number range and relevancy of referenced evidence

It is interesting to contrast the reference section of the Australian Guidelines to the references (‘Summary of Evidence’) provided on the UK GIDS website.

No of references (%) 1960-2000 2001-2005 2005-2010 2011-2012 2013-2014 2015 2016 2017
Australia guidance 4 (3%) 0 (0%) 11 (7%) 8 (6%) 16 (12%) 7 (5%) 17 (12%) 11 (9%)
UK website summary of evidence 1 (5%) 0 (0%) 4 (20%) 3 (15%) 6 (30%) 5 (25%) 1 (5%) 0 (0%)
Findings The UK evidence base presented on the website focuses on a very small number of older studies, by a limited number of authors. The 6 most cited by UK GIDs are by two authors (Steensma and DeVries). In a field where, by the UK GID’s own acknowledgement, evidence is lacking and constantly developing, keeping up to date with recent evidence is absolutely critical. As new evidence emerges, it needs to be made available to parents and wider stakeholders.

 

The UK’s GIDS current protocols and policies are driven by the summary of the ‘evidence base’ reviewed in 2017 for the updated service specification.

It is important to note that the evidence base for the updated service specification was extensively and widely criticised as deeply flawed. See GIRES Response Part 1: service specification including evidence review , and GIRES Response Part 2: prescription of hormones. The method and process by which the evidence review was completed was also widely criticised and feedback from stakeholders was completely ignored. 

The NOTE TO Sir Nick Partridge OBE Chair of the Clinical Priorities Advisory Group (CPAG) NHS England Specialised Commissioning stated

The evidence review:

(a) was based on biased terms of reference,

(b) was undertaken by Deloitte, which apparently has no relevant scientific or clinical competence and

(c) disregarded or misquoted a substantial proportion of the available evidence”

When comparing the reference section of the Australian Guidelines to the referenced literature (‘Evidence Base’) that was reviewed in support of the 2017 update of the UK service specification it is interesting to see:

No of references (% of references) 1960-1980 1980-1999 2000-2004 2005-2010 2011-2012 2013-2014 2015 2016 2017
Australia guidance 1 (1%) 3 (4%) 0 (0%) 11 (15%) 8 (11%) 16 (22%) 7 (9%) 17 (23%) 11 (15%)
UK evidence base 4 (8%) 5 (10%) 3 (6%) 15 (30%) 8 (16%) 6 (12%) 7 (14%) 1 (2%) 0 (0%)
Findings   The Australian evidence base is predominantly material published since 2011 (59 out of 74 =80%). 38% is published since 2016.

The UK evidence base focuses on older studies. Only 44% of the studies included in the UK evidence review (and a smaller number, 22 instead of 51) are published since 2011. Only 1 study (2%) is published since 2016.

In a field where, by the UK GID’s own acknowledgement, evidence is lacking, keeping up to date with recent evidence is absolutely critical. As new evidence emerges, policies and protocols need to be updated to keep apace, as Australia has demonstrated with these new guidelines.

The UK references are also taken from a very small number of authors (who work very closely together and are joint authors on many of them. The following shows the portion of the evidence base part produced by just 4 authors (de Vries, Steensma, Cohen-Kettenis, Zucker).

No of references (%) 1960-1980 1980-1999 2000-2004 2005-2010 2011-2012 2013-2014 2015 2016 2017
Total in UK evidence base 4 5 3 15 8 6 7 1 0
No in UK evidence base from 4 authors 4 3 8 4 1 3 0 0
No in UK evidence base from other authors 4 1 0 7 4 5 4 1 0
Findings The UK evidence base also relies on a very small number of authors for evidence. Out of 45 sources listed since 1980, 23 (over 50%) were produced in part by just 4 authors. Of the remainder a number of sources are non-academic, meaning those 4 authors have an extremely significant influence over the UK recommendations.

The Australian evidence base considers a much wider range of authors, only 9 out of 74 references (12%) come from those 4 authors.

Over reliance on data and analysis from a very small number of authors, is excluding the evidence and research of a wider group of authors. In a field where, by the UK GID’s own acknowledgement, evidence is lacking, keeping up to date with recent evidence from a range of quality sources is critical. UK policies and protocols need to be updated to include all quality, peer reviewed, research findings.

 

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An Open letter to MPs on the UK Gender Recognition Act

Dear MP,

As a parent of a transgender child I wanted to write to you ahead of the upcoming review of the Gender Recognition Act, to emphasise the importance of care and respect in any debate on this topic.

As you will be aware, the 2010 Equality Act already provides legal protection for girls like my daughter. My transgender daughter already uses girls’ changing rooms, girls’ bathrooms, attends school as a girl, attends the girls only Girl Guides, plays for her girls’ football team. She is accepted and seen by everyone in her life as a girl. She faces the same discrimination and sexism as other girls, in addition to the discrimination and hate she encounters for being transgender.

As a concerned parent of a transgender daughter, I want safety and protection for all women and girls (including for my daughter). Yet I am aware that there are a small group of people in the UK arguing that rights and respect for my daughter come at the expense of rights and respect for other women and girls. This is simply not true. This ‘protect women and girls’ argument has in the past been used to dismiss the rights of other minorities and is now being rolled out to argue against transgender rights.

Many of the arguments being put forward about the proposed changes to the Gender Recognition Act are not relevant to that Act, but are attacking rights already guaranteed by the 2010 Equality Act. Arguments bring up ‘monster’ scare stories about the new Act letting men invade women’s spaces, arguing that it is a threat to women’s and children’s safety. This ignores the reality that transgender women have always used women’s changing rooms in the UK (with no harm to anyone), and the 2010 Equality Act already guarantees their right to do so.

The current Gender Recognition Act already allows legal gender recognition without surgery or without imposing a stereotype of what a woman or a man should dress like.  A reformed Act would simply make it easier and more dignified for transgender adults to change their birth certificate – a change that has no bearing on ability to change passport, or change gender marker in systems including education, sport, or the NHS, areas where a Gender Recognition Certificate is not in any case needed. The proposed reform to the Gender Recognition Action would enable legal self-identification rather than the current humiliating, time-consuming, bureaucratic and expensive process.

Self-identification has already been adopted for 2 years in Ireland, with take up by only 240 individuals, with zero significant impact on non-transgender people. While my daughter is a minor the upcoming review of the act is relevant for her right now in two important ways.

Firstly, a streamlined and less pathologised approach to Gender Recognition sends out an important message to her that she lives in a country where the government respects her as a valued human being. Reform of this Act sends out an important message to an ill-informed public that my lovely daughter is not someone to be feared, is not a threat, is not mentally ill, is simply a girl who is a member of a very victimised and vulnerable minority who needs love, respect and acceptance.

Secondly, the upcoming debate about the Gender Recognition Act is of current relevance to my daughter because she notices and is affected by any discussion on transgender rights. Debates such as the reform of the GRA provide a platform for transphobic individuals in the UK to raise their powerful voices. For me as a mother, at this point in time, the outcome of the reform of the Gender Recognition Act is less important than the way in which the debate is conducted.

Transphobic groups are trying to set the tone for this debate. They are trying to feed an ill-informed general public and media with ignorant lies about transwomen and girls being a threat to other women and girls. They argue that improving rights for transgender girls like my daughter risks damaging the well-being of other women and girls. These messages are insidious and cause tremendous damage to my daughter’s safety, happiness and well-being. Please bear in mind that the girls who are most vulnerable in this whole debate are transgender children like my daughter, who just want to find space in this society to quietly live their lives.

Please do not give credence to arguments that suggest a gain in rights and respect for a tiny and very marginalised minority reduce rights for other women and girls.  I am a mother who cares deeply about the well-being of women and girls, and rights are not zero sum.  We all benefit from an inclusive and respectful society, a society in which my daughter, all women and girls and all transgender people can thrive.

As you are likely aware, there are no transgender members of parliament. I cannot imagine any other minority having their right to exist debated in parliament without representation.

If you would like to know more about transgender children like my daughter, you can also reach out to Mermaids, the UK’s leading support organisation for transgender children and their families. CEO@mermaidsuk.org.uk

Please also see the following useful resources:

On self-identification and a reformed GRA
https://nutlgbtexec.blogspot.co.uk/2017/08/statement-on-gender-recognition-act.html?m=1&fref=gc&dti=627122064058158

http://www.pinknews.co.uk/2017/07/26/what-will-actually-happen-if-the-uk-adopts-a-self-declaration-gender-recognition-law/?fref=gc&dti=627122064058158

On transgender children
http://assets.hrc.org/files/documents/SupportingCaringforTransChildren.pdf?fref=gc&dti=627122064058158

http://pediatrics.aappublications.org/content/early/2016/02/24/peds.2015-3223?fref=gc&dti=627122064058158

Warm regards,

Loving parent of a wonderful girl (who happens to be transgender)