Help or Harm?

1. Help or Harm? Trans people’s experiences of health services and the impact on their mental health James Morton, Coordinator Scottish Transgender Alliance

2. Trans Mental Health Study 2012 • Researchers: Jay McNeil, Louis Bailey, Sonja Ellis, James Morton & Maeve Regan • UK Project Partners: • Scottish Transgender Alliance www.scottishtrans.org • Trans Resource and Empowerment Centre www.transcentre.org.uk • TransBareAll www.transbareall.co.uk • Traverse Research www.traverse-research.com • Sheffield Hallam University www.shu.ac.uk • Convenience sample recruited via trans, LGBT, equality & health mailing lists • 889 survey respondents (largest trans mental health survey to date) • Full Research Report PDF downloadable from www.scottishtrans.org • Advisory Group: Gavriel Ansara, Rosa Benato, George Burrows, Ellis Ciruello, Colin Fischbacher, Lee Gale, Robert Jeffery, Ruth Pearce, Tam Sanger • Greta Bauer and the team from the Trans PULSE Project in Canada • Consultant Statistician: Brian Bond, Quercus Statistical Consulting Ltd.

3. Gender Identity • Which of the following best describes you? (N=794) • 40% Constant and clear gender identity as a woman • 25% Constant and clear gender identity as a man • 15% Variable or fluid non-binary gender identity • 8% Constant and clear non-binary gender identity • 6% Unsure of gender identity • 3% No gender identity • 3% Other • At least 35% of trans respondents did not fit a binary transsexual narrative • Only 13% did not wish to undergo any transition

4. Simplicity Vs. Authenticity • “I say I am genderqueer as I don’t see myself as male or female, but go under trans guy to simplify things.” • “A year ago, my gender identity was Not Woman. I now identify as male, but part of the reason for that is that it’s easier than identifying as non-binary. If there were more accepted genders, I would probably be ‘just masculine of centre’.” • “I would almost say “constant and clear non-binary”, except I have put so much time and energy into my physical and official transition from binary-male to binary-female that to do so feels like a betrayal, of both myself and of the women I met in the process. I needed badly to transition away from maleness, and in order to get that I had to represent myself to various doctors and psychotherapists as being clearly and consistently female, which, while less wrong than my assigned gender, is not quite on the mark. I know that some of my comrades in the journey were in the same position.”

5. First Appointment at a Gender Identity Clinic • 30% at GIC <1 year ago, 42% 1-6 years, 15% 7-12 years • Waiting times for first GIC appointment (N=293) • 60% waited for up to 1 year • 32% waited for 1 to 3 years • 8% waited over 3 years • 58% felt their wait harmed their mental health • “Waiting for access to the GIC had a devastating effect on my mental health. By the time I came forward for help, I needed it urgently. Such a delay caused me serious mental distress. Moreover, my long-term relationship suffered because of the uncertainty about my transition going forward. Words cannot express the harm done.”

6. Gender Identity Clinic Assessment Process • Once seen at a GIC, 46% of respondents felt they had experienced difficulties obtaining treatment needed: • “As my gender issue has created its own problems after being ignored and left untreated… to then go through such a narrow diagnostic procedure at the clinic with no degree of autonomy in the treatment of individual cases, I feel is… unrealistic…with regards to tackling this condition, for me and potentially others.” • “One of the clinicians initially refused to start my hormone treatment due to HIS perspective on a personal situation within my close family. On my last appointment (where I was accompanied by one of my family to help explain the situation) another of the clinicians reviewed this matter and accepted that it should NOT have impacted on my treatment.”

7. “I experience the NHS GIC service as largely a paternalistic gatekeeping exercise where psychiatrists exercise inappropriate levels of control over the lives and choices of patients. They ensure compliance by withholding or threatening to withhold access to treatment (hormones, surgery). Their primary purpose seems to be to make it as difficult as possible for people to access the hormones/surgery they need in order to save the NHS money. There is no transparency about the treatment pathway or clinical protocols… Having to negotiate the GIC system seriously hindered my transition. At many times, it has left me feeling angry, disappointed, manipulated, controlled and despairing. The system is deeply flawed.” • “Questions were overly irrelevant, prying and sexual… 2 years RLE is arbitrary, stressful, not supported by the WPATH SOC7… Overall, I feel utterly powerless and infantilised in my dealings with them, entirely at the mercy of their restrictive, unpredictable, arrogant and incompetent service.”

8. “The GIC also seemed to have very rigid ideas of masculinity and femininity and seemed to be adhering to a now outmoded medical model. The outcome was the GIC failing to provide any form of support whatsoever (some emotional support, and advice on speaking to my family would have been helpful), and instead focused their time on interrogating me about my gender and sexuality, with one of my assessors asking me about sex positions, and how this ‘differed from heterosexual sex’.” • “Refused to treat me because I have a non-binary gender.” • “The doctor had a very traditional, narrow view of transgender, and felt that he could decide what gender I was after talking to me personally for five minutes, and reading the results of the questionnaire I had filled out with his assistant… At the end, he explained that people didn’t have more than one gender identity, so I must have something cross-dressing related and should be taken off hormones for a while to see how I settle down.”

9. Discussing Concerns at Gender Identity Clinics • Of respondents who had attended a GIC: • 34% had felt uncertain about their gender whilst attending GIC • Of those who had felt uncertain about their gender, 52% had felt unable to discuss this at GIC • 62% had felt emotionally distressed or worried about their mental health whilst attending GIC • Of those who had concerns about mental wellbeing, 53% had felt unable to discuss this at GIC

10. Levels of Distress • Centre for Epidemiology Studies Depression Scale scores: • 46% Non-Depressed (0-15 score) • 18% Mild Depression (16-26 score) • 36% Major Depression (27-60 score) • 88% felt they had experienced depression (55% diagnosed) • 75% felt they had experienced anxiety (38% diagnosed) • 23% felt they had experienced addition (5% diagnosed) • 24% had used drugs in last year (11% cannabis, 4% ecstasy) • 62% engaging in alcohol abuse (score above 3 on AUDIT-C) • 19% current smokers

11. Self Harm & Suicide • 53% of respondents had self-harmed • 11% currently self-harming • 84% of respondents had thought about ending their lives at some point • Of those, 27% had suicidal ideation within the last week and 63% had had suicidal ideation with the last year • 35% had attempted suicide at least once and 25% had attempted suicide more than once

12. Mental Health Services • 66% of respondents had used mental health services for reasons other than access to gender reassignment • 72% of those accessing mental health services were open about their trans status at least some of the time while 28% were rarely or never open about their trans status • 29% felt their gender identity was treated as a symptom of mental health issues rather than as their genuine identity • 17% were told their mental health issues were because they were trans, while they disagreed

13. Trans-related Poor Service

14. NHS Triggers of Self Harm • 20% of respondents had wanted to harm themselves in relation to, or because of, involvement with a GIC or health service: • Frustrations with long waiting times and treatment delays • Appointment cancellations • Inaccurate assessments • Being denied access to GIC / hormone therapy / surgery • After undergoing a physical examination • Given wrong information and advice • Frustration with negative or inappropriate attitudes of psychiatrists • Being discharged from GIC (for example, due to a missed appointment)

15. Control Over Own Life • 72% of respondents felt being trans had an impact on the amount of control they had over their lives: • 28% felt entirely negative impact • “My life is basically in the hands of the people at the GIC… I do not feel like my body is my own.” • 9% felt entirely positive impact • “It frees me from the expectations put on me by society or by my family.” • 25% felt both negative and positive impacts • “I can do little things, such as dress a certain way, but as a whole things just are not set up to accommodate non-binary genders.” • “I’m more in control of my life, but attitudes can sometimes mean you don’t have opportunities open to others.” • “It is my choice to transition but the pace and how that happens is set by the NHS.”

16. Lost or Missed Out • Asked if they had lost or missed out on anything due to either being trans, transitioning, or expressing their gender identity: • 30% felt they had not lost or missed out on anything • 39% felt they had lost something • 50% felt they had missed out in some way • Included: jobs and careers, money, reproduction, home, childhood and youth, sports and leisure opportunities, equality and respect, family life, relationships and dating, happiness, friendships, intimacy, social life, personal development, education and qualifications

17. Transition Regrets • Social changes they had made: • 53% no regrets • 34% minimal regrets • 9% significant regrets • Physical changes they had made: • 86% no regrets • 10% minor regrets • 2% significant regrets • Regrets included: losing friends and family, the impact of transition on others, not transitioning sooner/earlier, not having the body they wanted from birth, surgery complications (especially loss of sensitivity) and choice of surgeon

18. “Regrets over loss of relationships are minimal because, in general, I think there is little alternative [to] being trans – there is little room for regretting what has been done, because transition was essential.” • Sometimes I regret ever being out, sometime I regret the extent that I’m ‘stealth’. I walk a bit of a tightrope with it and it’s hard to know which way is best. I regret both at intermittent times.” • “I have no regrets for transition, it is the best thing I can do under the circumstances. I have regrets that I’m trans and wasn’t just born male but that isn’t something I’m able to change.” • “I do not regret transitioning, but I do wish that society was more understanding of trans people. I wish that the physical outcomes were better and that I had not lost so much (relationship, job, physical and mental health, home).” • “I regret the loss of the priviledge I had as someone perceived as cisgendered.”

19. Gains • 81% felt they had gained something as a result of being trans, transitioning, or expressing their gender identity: • Included: confidence, new friends, improved/better quality relationships, community and a sense of belonging, resilience, self-expression and acceptance, knowledge and insight, happiness and contentment, and a future • Transition was related to improved life satisfaction • Satisfaction with Life Scale scores were statistically significant when separated by stage of/desire to transition; F=18.506, df=5, p<0.005 • Transition was related to reduced depression • Center for Epidemiologic Studies Depression Scale scores were statistically significant when separated by stage of/desire to transition; F=2.205, df=5, p=0.05

20. Reducing Harm & Increasing Help • How can the complexity of gender be better appreciated and supported? • Why do GICs seem to encourage expressions of simplistic gender rigidity rather than a detailed and flexible gender exploration? • How can non-binary gender identities be better included and respected? • Why is expressing a non-binary gender identity assumed to increase the risk of regretting hormones or surgery?

21. How can exploration of gender identity and emotional distress be supported without fear of harming future access to hormones and surgery? • How can mental health services become more understanding and inclusive of trans people? • How can trans people be supported better to explore and process personal losses, gains and regrets related to being trans, transitioning and expressing gender identity?