Reluctant educators and self‐advocates: Older trans adults’ experiences of health‐care services and practitioners in seeking gender‐affirming services

Abstract Background Trans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers’ experiences of contemporary health‐care services when seeking to transition medically in later life. Objectives Qualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life. Design Trans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach. Setting and participants This paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life. Results Findings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life. Discussion and conclusions Messages from this study speak to the importance of improving professionals’ knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity.


| INTRODUC TI ON
The views and experiences of health-care consumers are paramount to improving the quality and provision of health-care services, with growing awareness of the importance of co-creation with consumer groups in delivering good services. [1][2][3] This paper focuses on a consumer group whose unique life accounts have received little recognition in healthcare research-the experiences of older trans-identifying 1 adults accessing trans-related health-care services. We present qualitative findings from a study of trans ageing and care needs in Wales  and examine trans adults' (50-74 years of age) accounts of their interactions with health-care professionals as part of their journey of gender transitioning. 'Transitioning' refers to the processes trans individuals undertake in changing their presentation and expression to align with their gender identity. This may involve social transitions (eg dressing and self-presentation) and/or medical transitions through accessing gender-affirming treatments (eg prescribed hormones or surgical treatments). 4 For many, this is a life-long journey. In the United Kingdom (UK), a 2016 Parliamentary Committee noted that the National Health Service (NHS) was letting down trans individuals, and there was considerable evidence of discriminatory practice 'in breach of the Equality Act' (p. 35). 5 In England and Wales, the Equality Act 2010 promotes non-discriminatory services, inclusive of health-care services. Trans-identifying individuals are protected under the characteristic of 'gender reassignment' (s. 7(1)).
UK and European survey findings indicate hostile climates towards trans citizens as they experience victimization, hate crime and hostility because of their gender identity. [6][7][8] Living in a hostile environment impacts on the confidence of trans citizens in being visible and 'out' to others. From the 2018 UK Government survey of 100 000 + LGBT respondents, more than half of trans respondents (59% trans women; 56% trans men) reported they avoided expressing their gender identity. 9 Epidemiological data show that as a minority group, they are substantially affected by adverse health outcomes, including mental health and substance misuse. 10 For adults 50 + years of age, a US survey of LGB (and trans) adults found that trans respondents were at significantly higher risk of poor physical health, disability, depressive symptomatology and perceived stress compared with cisgender peers (ie individuals whose gender identity configures with the sex assigned to them at birth). 11 Health-care services are not immune from the hostile environments in which they are located. Reported structural and interpersonal barriers in health-care settings include being placed in inappropriate hospital wards and not having access to suitable bathrooms, 12 encountering abusive treatment from medical staff, improper use of gender pronouns, binary gender language recorded on documents 13,14 and patients not receiving the care required as they do not fit into a binary gender model, that is male/female. 15 Anti-trans attitudes can lead to more severe outcomes such as the denial of trans-specific treatments. 16 Negative experiences of services in earlier life will impact detrimentally on current perceptions of providers and diminish older trans patients' trust and confidence. 15 In the UK, over a third (38%) of trans-identifying respondents in the National LGBT Survey reported negative experiences of general health-care services. 9 Amongst respondents accessing gender identity clinics (GICs), 80% reported accessing had not been easy with 68% indicating waiting lists were too long. Other UK surveys of trans respondents tell a more nuanced story with reports of insulting language from health-care professionals, including general practitioners (GPs), and GPs being unwilling to support with trans-related health care. 12,17,18 Anecdotal accounts suggest recurring problems with GPs as gatekeepers to GICs and a wider lack of knowledge about referral pathways and treatments 5 alongside reluctance from GPs and practice managers to take part in trans-related research. 5 There is a gap in current research conveying clinicians', including GPs', views on current treatment pathways and options for older adults.
For trans individuals seeking to transition medically, GICs are tertiary services that provide access to gender-affirming treatments and surgeries in the UK. 4 Access to these services hinges on the receipt of a diagnosis of 'gender dysphoria', as listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). 16,19 To obtain treatments, trans individuals are required to conform to medical expectations of appropriate binary gendered behaviour and presentation; to present in a gender-ambiguous way risks denial of treatment. 20 Within biomedical discourse, this diagnostic label positions 'trans' as a condition to be 'fixed or resolved' (p. 9). 16 More recently, the World Health Organization has reclassified the term 'dysphoria' as 'gender incongruence' and removed this diagnosis from being listed as a mental disorder. 21 It remains to be seen whether this attempt to de-pathologize trans identities trickles down to inform clinicians' understanding.
The knowledge gaps of gatekeepers and long waiting lists are two major obstacles to accessing GICs. Waiting times for GICs are reportedly the longest of any specialist service in the UK. 4 A UK study of 74 trans individuals (50 + years) accessing a GIC over a 30-month period found that the majority of service users were trans women, 50% had sourced hormone treatments via the Internet, and 28% had obtained this treatment without medical advice. 22 At the same time, patients taking cross-sex hormones were significantly less anxious and reported higher levels of self-esteem than those who did not. This supports other tentative conclusions that the receipt of hormone treatment can reduce some indicators of psycho-social distress and anxiety disorders. 23,24 In this paper, our objectives are (1) to examine supportive and obstructive points of interaction with health-care professionals, and (2) to identify key learning messages for improving trans-related health care from the perspectives of trans-identifying adults in later life. Our research question is, 'What are the experiences of trans-identifying older adults in accessing and receiving health-care services on their journey of transitioning medically?'

| K E Y CON CEP TS
There are several key concepts underpinning this study. The term 'transphobia' signifies expressions and attitudes of aversion and hostility towards trans individuals and people who are gender non-conforming, 25 manifesting in the form of microaggressions, such as the intentional misgendering of another person, to overtly hostile acts such as physical violence. 4 Transphobic beliefs are underpinned by cisgenderist ideology. Cisgenderism is the dominant cultural belief that individuals who self-define their gender are perceived to be socially inferior or lacking validity compared to those whose sex assigned at birth matches their gender identity. 26,27 The distinction drawn between cisgender people (or non-transgender) and trans individuals is a form of cisgenderism that excludes people who identify with more than one gender or identify outside the binary divide between male and female. 27 Everyday examples of cisgenderism at a service level include refusal to recognize a patient's gender identity or, at an institutional level, imposing medical or legal requirements that trans citizens must meet to be recognized fully.
To counterbalance the problem-saturated health narrative at-

| ME THODS
Twenty-two (22) trans-identifying individuals participated in two interviews each, leading to a total of 43 interviews (one person participated in one interview only). A purposive sampling approach was adopted for interview recruitment. Advertisements for participation were circulated through trans community groups, online forums and social networks, identified through the project's Critical Reference Group. The project team also participated in local trans and LGBT pride-related events over a 12-month period to advertise the study. Participants were self-selecting. Criteria for participation were as follows: (i) identifying as trans or gender non-conforming; (ii) residing in Wales; and (iii) 50 + years of age.
Two men resided in England at the time of interview; they were included as the majority of interviews were with women (15) and the accounts of men who had transitioned were missing. The minimum age of participation reflected the policy approach in Wales in which citizens are deemed to be eligible for accessing some services for older adults from 50 + years.
Ethical approval was obtained through the Host University-the College of Human and Health Sciences Research Ethics Committee.
Potential interviewees received an information sheet, and informed consent was obtained prior to the first interview. Recalling experiences of living in cisnormative environments can evoke a range of emotional responses, including distress, and ways of supporting participants were carefully considered. Participants were debriefed after each interview and received a follow-up phone call from the research officer between the two interviews. At the end of the first interview, participants were provided with a debrief sheet listing local support services and helplines for additional support. If needed, participants could be referred to a BACP-registered counsellor (who identified as trans) for additional support. To enhance participant autonomy, participants were sent electronic copies of their transcripts and given a set time period to review and edit details if they wished prior to analysis.
In this paper, we concentrate on the accounts of 19 participants who were transitioning through medical means-the other three participants identified as genderqueer or crossdressers and were not seeking to transition. We selected these 19 participants because of their first-hand experience of accessing trans-related health care, including local GPs, mental health professionals and GICs. The first interview was unstructured and followed a life-history format. During these interviews, participants shared their life story, which included key turning points of seeking professional support and making first contact with primary services, including GPs. The second interview was semi-structured and included questions on topics identified in the literature including social network membership; experiences (recent and past) and expectations of health and social care services and professionals; and three wishes for change. Participants expanded on their current or most recent experiences of accessing trans-related health care and associated issues and concerns. Interviews ran between 1.5 and 3 hours each, and most occurred in participants' homes, at their invitation.
Interviews were audio-recorded, transcribed and analysed using the framework approach. This approach is one method of qualitative data management and analysis applied in social policy and health-care research. 28 We followed the step-by-step guidance produced by NatCEN. 29 The first stage is building a thematic framework: four team members conducted an independent coding exercise on six participants' transcripts to identify manifest themes. Team members met to share and compare initial codes and agree the thematic categories and sub-categories to be applied to all data. The thirteen categories are listed in Table 1. The agreed framework was created in NVivo (qualitative software program), and participants' transcripts were assigned a case number and key attributes. The next stage was coding data: transcripts were coded by two team members using the framework categories. This was followed by summarizing data within NVivo: codes (or 'nodes' in NVivo) were charted across the framework by summarizing the relevant, coded data per category and indicating illustrative quotes. The final stage was interpreting the data: we TA B L E 1 Categories and sub-categories created for the framework of data analysis

| RE SULTS
We report three core themes. Some of the findings reflect identi-

| General practitioners as inconsistent allies
The most prominent theme was the wide variation in knowledge levels amongst GPs about trans people's needs, available treatments and referral pathways to the GIC. Unsurprisingly, increasing transrelated knowledge of GPs was the most frequently expressed 'wish' when identifying recommendations for change to services.

| Uncertainty and delay in the healthcare system
Collective concern was expressed about the Welsh system for re-

| Delays and difficulties at the local level
There were variations in how quickly participants progressed through assessments and referrals via their local health board, indicating inconsistent procedures and timelines across boards.
Some participants viewed themselves as 'lucky' as progression had been relatively smooth, while others described it as a 'test' they had to pass in order to be referred to a GIC or as a constant 'fight for everything' with clinicians. One repeated frustration was the reliance on local mental health gatekeepers to be able to progress to the GIC and the lengthy delays that ensued, varying between six and 18 months. Rebecca (53) experienced significant hurdles in convincing a mental health clinician she was a) transgender and b) not suicidal: And I know what the criteria is to be accepted for surgery and everything, but he [practitioner] did turn around to say to me, 'Well, you don't look like you're suicidal or anything like that' and I said, 'You're an educated guy, I'm an educated person, why do I need to be suicidal to want to transition?' Rebecca's account illustrates the power struggle present between the patient and practitioner where Rebecca is struggling to fit in the correct clinical boxes to be able to proceed with a GIC referral (according to the practitioner's current understanding). When appointments were cancelled repeatedly or referrals did not progress, some participants had 'to make a fuss' to ensure these problems were resolved. It was a common view that it was up to the individual to keep pushing against the system in order to receive referrals and access treatments and to know how to ask the 'right questions' to be able to move forward. In many instances, this meant relying on the knowledge of trans peers. Peer knowledge was invaluable whether it be through contact with other trans individuals in the local community or through information accessed via Internet-based communities.

| Challenges and pressures when accessing GICs
Once referred to the GIC, participants described long waiting periods for appointments and frequent cancellations, further delaying treatment progression. For participants residing in Wales, having to deal with only one GIC results in a backlog, which led to increased waiting times to gain access. Frustrations with the system backlog led to a small number of participants with the financial means to consider private treatment. However, not everyone could afford this, as voiced by two participants who lived on low incomes generated from part-time employment and social security.  31 Valderas argues that 'recognising the importance of communities' (p. 10) and the social groupings patients belong to is an integral strategy to enhancing patient engagement in the delivery of primary health care. 32 A key recommendation from our study is the need for increased resourcing and support of local Within the third theme, there is promise that the current system will improve at a local level in terms of specialist health-care services for trans citizens in Wales. There is a different kind of anticipation in participants' accounts for a much-improved service for future generations of trans individuals accessing these services. This aligns with current changes to NHS Wales services, following the recently launched Welsh Gender Team where individual patients will be able to access some specialist services. 30 Alongside this, the Royal College of General Practitioners has called for a whole-system approach to improving services for UK trans patients 35

| Limitations to the study
Our findings are generated from a small non-representative sample, and participants were self-selecting. This may have attracted a higher proportion of participants with negative experiences. Missing from the sample are the voices of trans individuals from black and minority ethnic (BAME) backgrounds; the findings do not account for inequalities compounded by the social intersections between old age, ethnicity and gender identity. For example, findings from the recent UK Government survey of LGBT people show older trans respondents (65 + years) were more likely to have experienced or been offered conversion therapy (20%) than younger respondents, with a higher number of BAME respondents (28%) reporting this. 9 In this paper, we focused on those seeking to transition socially and medically and we cannot speak to the experiences of older individuals who are gender non-conforming (eg identify as non-binary).
Separate research is warranted into their experiences of healthcare services that are heavily gendered. Likewise, more research is needed into trans experiences of high-quality integrated care and the key differences between those who self-fund and those who rely on public services.

| CON CLUS ION
Messages from this study speak to the importance of improving

ACK N OWLED G EM ENTS
The authors gratefully acknowledge all the individuals who took part in this study and shared their experiences. The study was hosted by the Centre for Innovative Ageing at Swansea University, UK.

CO N FLI C T O F I NTE R E S T
All authors have no conflicts of interest to declare.

DATA AVA I L A B I L I T Y S TAT E M E N T
Research data are not shared.

Paul Willis
https://orcid.org/0000-0002-9774-0130 Christine Dobbs http://orcid.org/0000-0002-4320-6709 1 For the purpose of this paper, we follow the definition of trans provided by Burns 37 in her historical account of 'Trans Britain': an adjective 'to describe anyone whose gender identity and/or presentation does not align stereotypically with the gender assigned them at birth'. (p. xvii) 'Trans' is a broad umbrella term 'which encompasses all more specific words for gender non-conformity including (but not limited to) transsexual people, non-binary or genderqueer people and those who cross-dress' (p. xvii).