Written submission from Dr Richard Byng, et al (HSC0091)

Susan Bewley, Professor Emeritus of Obstetrics and Women’s Health (retired Consultant Obstetrician), Kings College London, and Chair of HealthWatch,

Richard Byng, GP and Professor in Primary Care Research, University of Plymouth,

Damian Clifford, Consultant Psychiatrist, Cornwall,

Katie Clyde, Consultant Psychiatrist, Hampshire,

David Curtis, Honorary Professor (retired Consultant Psychiatrist), UCL Genetics Institute and Centre for Psychiatry, Queen Mary University, London,

Lucy Griffin, Consultant  Psychiatrist, Bristol,

Tessa Katz, GP, London,

Julie Maxwell, Associate Specialist Community Paediatrician, Hampshire,

Margaret McCartney, GP and freelance writer, Glasgow.

We are clinicians who wish to see high quality care of gender questioning individuals within primary, secondary and tertiary services. We are not gender specialists but our combined clinical and academic expertise covers the generation and interpretation of medical evidence, the development and evaluation of interventions for marginalised groups, and care of LGB and T individuals in general settings (including general practice, paediatrics, psychiatry). Our declarations of interest are detailed on the whopaysthisdoctor website.

We share concerns about access, capacity, evidence and training of staff, in the face of an unexplained and unprecedented rise in demand, particularly for children, adolescents and young people.  However, while many people and some organisations presently advocate more rapid pathways into interventionist medical treatment for transgender individuals, this submission urges caution given that the issues are complex, the stakes high and the evidence very weak. It is particularly important not to apply evidence gathered from mainly older transwomen (sometimes also referred to as male to female transsexuals) to the new cohort of younger natal females (sometimes also referred to as people assigned female at birth).

Summary of analysis and recommendations:

1. Whilst LGB and T individuals are more likely to have health problems and that access to and experience of care can be made worse by stigma and a lack of knowledge from health care professionals, the medical needs of transgender patients are distinct and should not be conflated with those of lesbian, gay and bisexual people, nor assumed to be the same across the age or sex/ gender divides.

2. Changes should be added to current proposed NHSE service specifications for adults with gender dysphoria currently being commissioned by NHS England as there are gaps:
1. additional conservative supportive strategies - individual or group based support for individuals wishing to come to terms with biological bodies while expressing whatever gendered (or non gendered) role they wish;
2. increased psychological input for the 17-25 year olds who will need  developmental and trauma-informed services as commissioned in GIDS;
3. neutrally framed support for those on waiting lists provided on basis that some individuals will continue and others desist
4. services for those who have desisted and detransitioned.

3. Research. The evidence on which to base the care of gender questioning and trans-identifying individuals is very weak. This could (and should for <18 year olds) be addressed by ensuring gender identity services are provided under research conditions with an integrated quality improvement and education function. Outcomes, including benefits and harms, could then be monitored and continuous improvements to services made in a timely manner. A greater understanding of the rise in referrals could also be acquired.

4. ‘Upstream’ support in schools to be improved.  It is important to acknowledge that gender questioning and feeling trans are influenced by a complex mix of cultural norms and personal predispositions (related e.g. to trauma and autism traits). This means parents, teachers, social workers etc must be careful to be both kind and neutral – ‘affirming a child as a child’ is not the same as ‘affirming’ another gender or actively discouraging children to believe they are not trans. ‘Wondering’ about identity and experimenting with roles is a normal part of growing up and most children desist from seeing themselves as trans with the passage of time and development. Interventions have been introduced with good intentions but inadequate understanding of impact, and some types of school based education, and other socialisation (e.g. Guides etc) should be carefully reviewed, or even stopped. Support and related research in schools should focus on why so many girls in particular are nowadays socialized to feel uncomfortable or even disgust with their bodies because of problematic gendered roles and past trauma. The various effects of such socialization might include cutting, anorexia and/ or wondering if they are ‘trans’.  All these girls (and boys) need support.

5. Provision of accurate information. Websites of NHS, social care, medical authorities, private sector and charities need to provide biologically accurate balanced information recognising the difference between sex and gender and where there is a lack of evidence about the effect of interventions (educational, social, psychological, drugs and surgery). Information about treatment should mention potential harms and uncertainties as well as potential benefits. They should not glamorise transition nor sex stereotypes. Consideration should be given to the regulation of internet sites glamorising surgery (as there are parallels with sites encouraging self-harm and pro-anorexia).

6. Endorse a person centred and scientifically accurate approach to practitioner interactions in specialist and non-specialist settings. This should include exploring links between complex cognitive, emotional and social issues; talking accurately - distinguishing between biologically male/female bodies and the subjective experience of feeling trans or not being sure; interactions with alcohol/ drug use and misuse; the use of therapeutic approaches that support an individual to come to terms with their body, especially during puberty; exploring decisions in terms of balance of benefits and harms;  supportive affirmation of an individual’s experience rather than automatic ‘affirmation’ of being trans (which can, in effect, endorse medical intervention without and before medical input). The concept and historical evidence base about ‘conversion’ therapies in relation to sexuality cannot simply be lifted onto gender-identity as there are distinctions and differences. The Memorandum of Understanding about conversion therapy (1) and GMC guidance applicable to private as well as NHS service services should undergo regular revision in the light of emerging evidence.

Background, evidence and gaps in evidence:

7. The number of individuals requesting medical assistance for gender uncertainty or dysphoria is rising and the demographic trend is rapidly changing. This has traditionally been a very small ‘orphan’ specialist area, dealing with highly stigmatized and discriminated against people, with significant provision in the private sector and little high quality funded research. The provision of gender identity services in the NHS is set to change. Compassionate evidence-based care for those in need must be given whilst avoiding overtreatment at a population level. This requires safe, open discussion and good quality evidence. Our concerns related to the following areas of knowledge/evidence:
8. The increase in GIDS and GIS referrals and the disproportionate number of natal females, also described as people assigned female at birth (2). There is increasing evidence from many countries about high levels of mental health problems in adolescents and young people (esp. females) – including autism, depression, self harm – which differs from the traditional (and better understood) group of older transwomen (or natal males, or people assigned male at birth).  It appears that mental health problems often predate gender questioning and are not all secondary stigma related to being trans (although bullying, rejection and more are likely to worsen matters). We welcome proposed research to explore this phenomenon and recommend it includes studies of changes in beliefs over time of individuals (from first time of questioning, through waiting for transition, through medium-to long term follow up, and, for some, desistance).

9. There is no compelling evidence for an underlying biological cause for being trans despite the public narrative of being ‘born in the wrong body’. The rapid rise in numbers of people identifying as trans or other descriptors is consistent with a psychological phenomena that may be influenced by society and peer groups in some or many cases. (3) Feeling unhappiness, dissociated, or even hatred towards one’s body or body parts is a real and very distressing experience. There are some parallels and shared experiences between some individuals with disabilities, trans people, those with body dysmorphia and many girls and women.  As such there is a strong rationale for developing conservative supportive treatments for all those wishing to learn to live with their biological body, however they identify, as in treatments for body dysmorphia. For example, one of our group is currently struggling to find a therapist or group able to provide this requested support for a patient.

10. The current evidence about hormonal and surgical treatments unfortunately lacks the normal requirements of evidence to support the introduction - let alone provision at scale - of medical advances. Randomised trials (‘gold standard’ although not the only type of research) are absent or small and follow up is too short – such that in the review of evidence carried out by Professor Carl Heneghan from Oxford University’s Centre for Evidence Based Medicine it was concluded that “The current evidence does not support informed decision making and safe practice in children.” (4)  A formal independent review of World Professional Association of Transgender Health guidelines would be helpful. Although anecdotal, several of the authors have cared for individuals who are dissatisfied with hormonal and surgical interventions as well as encountering significant relational problems but these poor outcomes are often not captured in the literature or poor quality studies. Thus there is polarization in discussions partly because of paucity of good information. There is also a long history of medicine failing to look for harms. This is often happens because many innovations are evaluated with simple, short-term ‘before-and-after’ assessments in which initial satisfaction is captured, but those with serious and/or long term negative outcomes are much more likely to be lost to follow up.
11. Suicide figures are exaggerated and suggestions made that the risk would decline following transition, thus pressurising anxious parents, clinicians and schools to affirm trans status. The relatively high rates of non fatal self harm and suicidal ideation are likely linked to high levels of co-existing mental health problems. Specifically there is no good evidence as to whether transitioning actually changes suicide outcomes. The little research that has been done (on the older cohort) fails to point to positive outcomes (5).  Advocacy organizations have carried out research on self-selected populations. Although this produces powerful qualitative information, the prevalence data is unreliable. Guidelines about discussion of suicide are flouted by advocacy organisations (despite the knowledge that irresponsible reporting leads to clusters/ copy-cat suicides especially in the young).
12. The ill-understood phenomenon of individuals detransitioning may be growing. Anecdotal evidence from these individuals (e.g. tumblr) (6) is rarely acknowledged or investigated and they are much less likely to appear in clinic-based research samples.  As well as representing treatment failure, detransition highlights diagnostic problems; practitioners are trained that if someone says they are trans, they are trans, and this should be affirmed; yet, by contrast, these dissatisfied individuals are being told that if they detransition, they were never really trans in the first place. Both these things cannot be true; they point to the underlying problems of unverifiable subjective states, inaccurate diagnosis and prognostication, and flawed models of understanding the range of gender states.

Complicating issues for clinical practice:

13. Two key issues are causing confusion and conflict for patients and practitioners alike.

Firstly, our understanding of the body, the brain and the mind. While medicine understands sexual biology as binary and fixed, much gender theory instead distorts our understanding of biology, and suggests that someone’s belief about what gender they are is of paramount importance. In health care in the UK, a Memorandum of Understanding and other guidance suggests everyone should endorse and affirm an individual’s ‘trans’ identity, or belief(1). In this there appears to be a conflation of now-discredited conversion ‘therapies’ for homosexuality, with the holistic exploration of gender dysphoria which is distinctly different. The definition of what constitutes ‘conversion’ is not clear in relation to transgender. Furthermore there is very limited evidence that such conversion therapies are in fact occurring, particularly outside of family or religious settings. We should believe and accept our patients’ experiences.  However, promoting ‘affirmation’ by practitioners, particularly as a policy from the outset in young people, that an individual is trans as good and sole practice, conflicts with the evidence. Individuals vary.  The subjective psychological experience of gender identity can and does change, rather than being fixed; and there is no objective way for a doctor to accurately confirm someone is trans. The standard medical practice of providing compassionate support and objective bio-psycho-social evidence is eroded such that practitioners may feel compelled to endorse biologically unsound beliefs to the potential detriment of patient care.

14. Secondly, the approach to decision making being advocated for transgender health care in the US, and increasingly in the UK, is based on a more consumerist approach to giving people products/ medicines they want rather than sharing a complex decision. Standard medical practice in the UK values both individuals’ wishes and the doctor’s legal duty to act in the patient’s best interest (overall and long term). Uncertainties, harms and benefits of the options should be discussed along with the hopes of patients. Often, and especially when harms are likely to be small, the patient’s choice will be respected. But doctors are not expected to provide surgery and medicines that have complications and harms on demand; rather we have an obligation to weigh up the potential harms and benefits before intervening or providing interventions for vulnerable people. This weighing up is improved with greater knowledge.  For example, prescribing for chronic pain is now an area where, based on good research, the expectation is for doctors not to prescribe opioids in response to patient requests. Until recently such prescribing was not on a litany of medical ‘innovations’ now shown to be harmful. Another example is that of MESH surgery for prolapse, once thought to work well, has proven to have much more serious complications than initially realised.

The new model of ‘informed consent’ for ‘gender-affirming’ interventions – including via private online clinics - is therefore in conflict with standard medical practice. It does not appear that the uncertain risks of treatments are always fully shared with young people, and the use of language can minimise the significance of major interventions. For example, double mastectomy is relabelled ' top surgery'. There is therefore a danger that such consumerist approaches, along with understandable wishes to ‘support’ marginalised or vulnerable groups, will result in harms.

15. The Swedish Council for Medical Ethics (SMER) has called on the Swedish Government to review gender dysphoria in childhood and adolescence, in light of the lack of solid evidence for medical and surgical interventions having a role in preventing suicide or ameliorating comorbid psychiatric symptoms.  The Ethics Council has advised the government that it needs to urgently review provision of off-label prescribing in under 18 year olds and to revise current guidelines of medical treatment of children with Gender Dysphoria.  

Conclusions and recommendations for changes in practice

16. Taken together this evidence suggests that rather than extrapolate the relatively poor evidence we have (relating mainly to older male-to-female transition) and apply it to the new cohort of younger girls (or gender questioning youth, or transmasculine/ transmales) with more mental health comorbidity, we should adopt a more cautious approach that includes a neutral and nuanced stance to affirmation, offers of conservative support, and with all care provided under research conditions. The summary of specific recommendations is provided above.

June 2019

References

1. Memorandum of Understanding 2017 https://www.psychotherapy.org.uk/wp-content/uploads/2017/10/UKCP-Memorandum-of-Understanding-on-Conversion-Therapy-in-the-UK.pdf
2. Butler G. De Graaf N, Wren B, Carmichael P Assessment and support of children and adolescents with gender dysphoria. Arch Dis Child 2018  https://adc.bmj.com/content/early/2018/04/26/archdischild-2018-314992
3. Littman L. Rapid-onset gender dysphoria in adolescents and young adults: A study of parental reports https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0202330
4. Heneghan C. Evidence Spotlight: Gender-affirming hormones in children and adolescent [Internet]. BMJ; 2019. Available from: https://blogs.bmj.com/bmjebmspotlight/2019/02/25/gender-affirming-hormone-in-children-and-adolescents-evidence-review/
5. Dhejne C, Lichtenstein P, Boman M, Johansson ALV, Långström N, Landén M. Long-Term Follow-Up of Transsexual Persons Undergoing Sex Reassignment Surgery: Cohort Study in Sweden. Scott J, editor. PLoS ONE. 2011 Feb 22;6(2). https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0016885
6. Female detransition and reidentification: Survey results and interpretation [Internet]. 2016. Available from: https://guideonragingstars.tumblr.com/post/149877706175/female-detransition-and-reidentification-survey