Trans Ageing: Future Research Directions

Yesterday Jess Bradley from Action for Trans Health attended “The future of LGBT ageing: Rethinking research directions” at The University of Manchester, and helped run a session on trans ageing. This article briefly discusses some of the issues that older trans people face and suggests some area for future research which has been identified by Action for Trans Health alongside suggestions which arose from discussion at the event.

Trans people face discrimination across all areas of life, which means that when compared to our cis peers, we often have less robust support networks, higher instances of mental and physical health problems, and may experience loneliness.  This is particularly a problem for older people, who may feel excluded from youth orientated LGBT spaces as well excluded from cisnormative older people’s groups . Beyond these more general issues, we have identified three main areas of interest; being trans in a care environment, healthcare issues in later life, and transition whilst being older.

Accessing care:

  • Trans people often delay seeking care due to a general distrust of the medical establishment and a perception of the institutional environment as being transphobic. This is compounded when considering that trans people in general have less financial access to high-quality care due to discrimination in employment and the costs of transition related care (when not NHS funded). However, delaying accessing care can have a negative impact on mental and physical health as well as a strain on social relations.
  • Few care providers have the necessary training to be able to cater to trans specific needs in a non-discriminatory environment. As such, trans people are often forced to educate care providers or clinicians themselves on basic trans etiquette such as not asking intrusive/irrelevant questions, not getting flustered when peoples’ bodies don’t necessarily match with gendered assumptions, and keeping patients confidentiality.
  • Trans people face higher level of domestic and personal abuse than their cis peers. This abuse can come from family, friends, or from staff in a care / clinical environment. Care workers may need to navigate very complex social situations where abusive situations may appear.

Healthcare in later life:

  •  It is now possible for trans people to change their gender markers on their NHS records when they get legal recognition of their gender. However, this means that trans people are often not automatically invited to attend some screenings (eg. prostate, cervical, and breast cancer screens) in later life which may be medically relevant to them.
  • Very little is known about the long term effect of hormone therapy on trans patients. Particular areas of concern include how hormone therapy might alter bone density or may result in blood problems later in life.
  • Very little research has been done into how hormone doses should change as patients get older, and how hormone treatments interact with various other drugs (which may be increasingly important as a person ages as they are likely to take more medications).
  • Trans people have an increased likelihood of experiencing particular health complaints depending on what medical interventions they have had. A trans-feminine person who has had bottom surgery is at increased risk of rectovaginal fistula and urinary tract infections, and a trans-masculine person on hormone therapy has increased risk of liver problems and diabetes.

Transitioning in later life

  • Many trans people may choose to wait until later in life, after family and work commitments are less pressing, to undergo any transition related healthcare. However, often older people often have more entrenched social roles and so making these changes can sometimes be more complex at this time.
  • Older people may have increased health issues, ie. heart disease or high blood pressure, which can make transition related medical interventions riskier.

Research Directions

Key areas for action may include:

  •  Longitudinal / cohort studies on the long term effects of hormone treatment on trans patients.
  • Research into the interaction between hormone therapy treatments and other medications.
  • Studies to identify effective training on the needs of trans patients for carers and clinicians.
  • Research into the effect of dementia and similar conditions on gender identity.
  • Studies on how best clinicians can best support lay carers of older trans people
  • Investigating the inclusion of a question of trans identity on large surveys conducted by the Office of National Statistics so that researchers are better placed to utilise large studies to in their work. How would this question(s) be worded, and how can people encourage accurate self-reporting?

#transdocfail: moving forward with a new non-binary protocol

Action for Trans Health trustee Loz Webb talks about #transdocfail and how we are helping GIRES with developing a non-binary protocol for GICs. The first step for this is collecting data on non-binary experiences. You can help us out by completing this short survey.

I wish I could tell you that my initial feeling upon reading the transdocfail hashtag was surprise. But I can’t. As a young trans person, a non-binary trans person, as a trans person who has accessed (or sometimes tried and failed to access) mental health services, I can’t lie to you; I was not surprised. I think what I felt most overwhelmingly, was relief.

Now, that might sound like a strange thing to feel. But in the transdocfail hashtag, I saw more than a legacy of failure and of brutal injustice. I saw a glimmer of hope. Finally, this conversation was happening. And it wasn’t happening in a dimly lit bedroom, or in someone’s living room after dark, when we could be sure that the prying ears of the medical institution and the cis people who support it were far away while we were locked in safe. For so long, these conversations have happened in secret because we are afraid. Because we rely on these doctors for the lifesaving treatment that we need, and we rely on them because in a world where we are stuck between the rock of pathologising, fetishizing and sometimes outright violent doctors, and the hard place of mass unemployment, family estrangement and structural poverty, we have no other option. And crucially, they know it.

This means that it becomes incredibly difficult to be an active participant in your own treatment, as suggestions, queries or criticisms are often met with the removal of treatment as punishment:  

  • Charing Cross GIC told my psych that I was suicidal as revenge, after they discovered a negative blog post I wrote about them.#TransDocFail 
  • I am terrified of talking about my experiences because I am afraid of having treatment withdrawn by the GIC.#TransDocFail

Despite the fact that it is clear that the majority of psychiatrists understand very little about trans people and gender dysphoria:

  • My psychiatrist initially refused to refer me cos “most people regret transitioning” #TransDocFail

Or perhaps they simply enjoy torturing us, safe in the knowledge that they can bully us as much as they like, because we still need them on-side:

  •  NHS Psych told me I wanted to transition to male cos I was too ugly to live as a woman. Also told me I’d never pass as male #TransDocFail
  • Psych invented name to call me because I wouldn’t tell him my birth assigned name #TransDocFail

Most GPs have no idea what to do when presented with a trans patient, and instead of listening to the patient or spending time researching, they decide to make things up based on their own values and moral judgements:

  • The first GP I told later told me he could no longer treat me because I was trans; he later shredded my notes #TransDocFail       
  •  GP thought depression was ‘normal’ given my being trans & thus ADs pointless. Even though they alleviate the depression.#TransDocFail

GPs also have a history of deciding simply not to refer their patients to a GIC for no apparent reason:

  •  My GP repeatedly told me she’d referred me when she hadn’t. Took 11 months from asking to be referred to being referred.#TransDocFail 
  • First GIC appointment next week, first went to GP for help 44 months ago.#TransDocFail

Emergency services seem to regard trans people’s lives as lives not worth saving:

  •  Denied care for a heart condition because “I have all this gender stuff going on so it was probably in my head”#TransDocFail
  •  I rang NHS Direct to get help for partner. NHS Direct doctor spoke to them and told them to leave me as I was an “abomination” #TransDocFail

And trans people have a history of being refused treatment by experts in the field simply for not conforming to outdated, sexist stereotypes:

  •  Was refused transition treatment for being lesbian, riding motorcycles, and not wearing skirts and heels to appointments.#TransDocFail

 I will not detail any examples here, but it is important to make mention of the fact that many people reported sexual assault, including non-consensual and unnecessary genital examinations and groping of the chest or breasts, at the hands of GPs and GIC doctors.

Not surprising then, that we are incredibly reticent to make complaint when we receive any kind of medical care at all; the consequences are all too clear and incredibly frightening.

But #TransDocFail gave us the opportunity to have this conversation in public. Suddenly all these stories were being told, and more importantly, being heard. After one came another and another, no power on this earth could have stopped the flood. Years of frustration at mistreatment, assault and administrative violence came pouring out and as time passed it became clear that these stories were not ‘one offs’ which could be shrugged off as an individual doctors ignorance or misinformation. What was being revealed was a legacy of structural violence.

As a non-binary trans person, I’ve had to make the decision between getting the lifesaving treatment that I need and being open about the person I am. That is a conflict in me that has not settled, and perhaps will never settle, because I spent 24 years trying to be someone I wasn’t and running away from the person I am, and it is difficult now to sit down in a room and lie, and omit, and tell the story I know that I’m meant to tell when I can’t help but feel in my soul that I’m not being fair to myself, that I’m selling myself out, that I’ve gone through so much to know myself better than this. I have to remind myself over and over that I don’t owe authenticity to those who would weaponise it, and that I don’t need a panel of people to meet in order to know what to do with my own body. But it’s hard, because in the last few years I’ve grown accustomed to being honest with myself and it’s not something that I relish giving up. I feel like I’m sacrificing my history to buy myself a future, and I don’t think that’s right. I don’t think that’s good enough.

The Equality Network in Scotland commissioned research into how the process of transitioning impacts on the mental health and wellbeing of trans people, in which they found (I would suggest unsurprisingly) that 70% of respondents were more satisfied with their lives after transitioning, while 2% were less satisfied. Somewhat at odds with the claim that ‘most people regret transitioning’. NUS LGBT recently commissioned research into the experiences of LGBT university students, and found that 1 in 3 trans students have experienced bullying or harassment on campus, and that half of trans students have seriously considered dropping out of university. Of those who had considered dropping out, around two thirds mentioned health problems and ‘not fitting in’. The report discusses the psychological consequences of harassment, indicating that trans and homophobic bullying and harassment have long-term consequences for LGBT people. In other words, trans students are more likely to need to access mental health services as a result of the harassment they face in academic institutions. But paradoxically, these services are clearly shown to replicate the exact same bullying and harassment that trans students face at university.

The fact of the matter is, trans healthcare is in crisis, and it has been for a long time. The intervention of banks exorcising their morality in the recent furore around inhousepharmacy, seven year NHS waiting lists, mistreatment by doctors, and the refusal to treat non-binary people is forcing trans people to go private and to choose medical treatment over the weekly shop. I want to rephrase that. Trans people are being forced to choose between their right to medical care and their right to eat.

This is not acceptable.

Action for Trans Health have teamed up with GIRES to research the experiences of non-binary people who have tried to access transition related healthcare. This research will be used to develop a non-binary protocol that will be used by gender identity clinics to enable them to provide life saving treatment to non-binary trans people. The more responses we get, the more we can improve transitioning for non-binary people, and the closer we get to putting trans healthcare back where it belongs: in the hands of trans people.

So please, help us share this survey far and wide, because medical care is our right and non-binary people need you to fight alongside us right now.

National Action: Action for Trans Health supports health sector strikes

An overworked, underpaid, and demoralised health sector cannot work best for all patients, including trans patients. The Coalition Government’s attacks on NHS workers are just one part of a wider plan to weaken and sell off parts of this service which, although not perfect, is an essential service. And as the recent film Pride has shown, it is through common struggle that the bonds of solidarity are forged; when doctors, nurses and other NHS workers see trans and queer people supporting their cause, they are going to be more amenable to supporting ours. For those reasons, Action for Trans Health are calling on trans and queer activists to support the public health sector strikes that are happening week commencing 13th October.

The strike: 

Nine unions representing NHS workers are out on strike for the first time in 32 years in protest over pay and conditions. For some unions, like the Royal College of Midwives, it will be their first strike in their 132 year history. There will be a 4 hour strike from 7am – 11am on Monday 13th October, followed by 4 days of action where NHS workers actually take the breaks that are legally entitled to them. The week of action will be rounded off with a TUC organised rally in London on the 18th October.

What you can do: 

Pop down to your local picket on Monday 13th 7am – 11am to join striking workers in solidarity. Bring baked goods and hot coffee, maybe signs saying something like “Trans people support the strike” or similar. Chat to striking workers and use this opportunity to talk about health sector pay and conditions, and to talk to them about Action for Trans Health or other trans healthcare activism. More information about where local pickets will be will be posted as that information becomes available.

Join the TUC rally in London on the 18th October. The TUC are arranging travel from all areas of the country, see their website tuc.org.uk and search for your local area for more details.

Change your profile pictures, avatars, etc. to a selfie of yourself with a sign saying “trans people support the strike” / or similar. Tweet, tumblr, and use facebook to raise awareness of the strike.

If you do show your support for striking NHS workers, please let us know how. Send us your photos of you on pickets, with signs, or at the rally to info@actionfortranshealth.org.uk