“Grasping on a spider web of hope”: Psychological challenges and impact of waiting to access UK gender dysphoria Clinics on young adults

Abstract

Background

Young transgender adults report higher levels of mental health difficulties compared to the general population. These difficulties reportedly improve following gender-affirming care and transition. However, gender-dysphoric people wait up to 5+ years in the UK to access gender-affirming treatment.

Aims

The study aimed to qualitatively explore the psychological challenges and impact of waiting to access UK Gender Dysphoria Clinics (GDCs) for young trans adults.

Methods

Recruitment via two GDCs resulted in a sample of 10 participants (aged 17–26) who had been waiting at least 12 months for assessment. Qualitative semi-structured interviews were conducted online or by phone with four men, four women, and two gender nonconforming people. Data were analyzed through Interpretive Phenomenological Analysis (IPA).

Results

Challenges and impact of waiting were represented within eight themes. Five psychosocial challenges included "Grasping on a spider web of hope that’s about to snap,” “People are uneducated and they don’t understand,” “Society or whatever made me second guess myself,” “I’m too autistic for that shit’, and “It sounded like the phone was just being left all day every day.” Mental health impacts of waiting were captured in the themes “(Gender) Dysphoria attacks” and “If it doesn’t go well by 30, I’m gonna kill myself.” A final theme, “I’m going to just go on with me life,” focused on healthy and less-adaptive coping strategies.

Conclusion

Waiting to access GDCs is a fragile and vulnerable time; experiences of discrimination, stigma, transphobia, and uncertainty during the waiting period appear to increase feelings of hopelessness and diminish mental health. Focusing on social transitioning was reported by most participants as a coping strategy for waiting. Findings highlight the importance of reducing waiting times for GDCs and offering psychosocial support during the wait.

Introduction

Approximately 262,000 transgender and gender nonconforming (trans) people live in the UK according to UK Census data (Office for National Statistics, 2023). Trans people have been reported to associate their identity with positive wellbeing and self-esteem (e.g. McNeil et al., 2012). However, a systematic review (Valentine & Shipherd, 2018) found a high prevalence of mental health difficulties among trans people including anxiety, depression, substance use, and suicidality. Various personal and socio-contextual factors may influence these experiences. For example, factors associated with positive psychological outcomes and resilience include community connectedness and social support (Fuller & Riggs, 2018; Puckett et al., 2020; Valentine & Shipherd, 2018; Watson et al., 2017) and healthy coping behaviors (Valentine & Shipherd, 2018) whereas factors associated with poorer psychological outcomes include loneliness (Fernández-Rouco et al., 2019), low social support (Puckett et al., 2020; Witcomb et al., 2018), low self-esteem and poor interpersonal function (Witcomb et al., 2018), social stress (e.g. abuse, discrimination, stigma, transphobia, and violence; Kota et al., 2020; Truszczynski et al., 2020; Valentine & Shipherd, 2018; Watson et al., 2017), and unhealthy coping behaviors (Fernández-Rouco et al., 2019; Truszczynski et al., 2020). The difficulties living as a transgender person in the current socio-political climate have often drawn comment (e.g. increases in anti-trans media and the recent murder of teenager, Brianna Ghey; John, 2021; BBC News, 2023, respectively).

Mental health experiences of young trans people

Young trans people experience more anxiety, body image issues, depression, eating disorders, self-harm and suicidality compared to their cisgender peers (Agana et al., 2019; Becker et al., 2016; Connolly et al., 2016; Dhejne et al., 2016). Given reports of social avoidance among trans people (Ellis et al., 2014), many younger trans people turn to social media to connect with others and to establish and express their “authentic self” (Cannon et al., 2017). Navigating social media however brings challenges as it opens trans people up to cyberbullying and discrimination (Cannon et al., 2017) and facilitates negative social comparison more generally (Vogel et al., 2015). It is important to consider what influence these experiences may have on trans mental health particularly for those yet to access specialist healthcare services and support.

Trans people’s experiences of general healthcare

Good clinical practice guidelines (e.g. British Psychological Society, 2019; Coleman et al., 2012) for practitioners working with trans people encourage shared decision making, using preferred language/pronouns, being mindful and sensitive to trans issues (e.g. stigma, discrimination) and providing supportive therapy for trans people and their families. Such recommendations for trans-inclusive healthcare are also endorsed by trans-participatory action research groups (Újhadbor et al., 2022) with additional suggestions including demonstrating proactive allyship, initiating institutional change, and involving trans people in research and service design/delivery. However, there is limited research looking at the healthcare experiences of trans people. It has been suggested that some trans people avoid services (including mental health services) through fear of harassment by others, fear of being misunderstood by clinicians, and past negative experiences with clinicians or treatment (A. Brown et al., 2016; Hord & Medcalf, 2022). This is perhaps evident in the lack of trans visibility within the NHS for example, an absence of trans options on demographic forms and an inability to record gender accurately on NHS systems (London Assembly Health Committee, 2022). Heng et al. (2018) conducted a review of trans experiences of healthcare services and found that many report negative experiences such as being misgendered, a lack of confidentiality for young trans people by discussing trans issues with parents present and diagnostic overshadowing (misattributing experiences and symptoms to being trans). The review also summarized a lack of HCP knowledge and education, poor communication (such as denial, over- and under-valuation of trans identity), HCP-patient power imbalance and barriers to healthcare services such as waiting times.

Hord and Medcalf (2022) found similar trans experiences within healthcare services across England ranging from primary care, to fertility and mental health services. Access to healthcare was also recognized as difficult, particularly for those with intersecting needs such as trans people of color, autistic people, older adults, and those living in rural areas. These challenges also applied to gender-specialist services.

Gender dysphoria and access to gender-specialist care

Trans people in the UK who experience dysphoria (i.e. significant mental distress caused by the incongruence of their gender identity and sex assigned at birth) may wish to access gender-specialist care pathways (including medical transition and therapies). The authors are mindful not to pathologize trans people, however, a diagnosis of gender incongruence (World Health Organization, 2019) is currently required to access such care and support at UK Gender Dysphoria Clinics (GDCs).

Services provided by GDCs

GDCs across England operate in two ways: seven longstanding services accept nationwide referrals whereas five recently established “pilot” services serve a defined local catchment area. The plan set out by NHS England was for localized GDCs to retrieve appropriate people from existing waiting lists before taking on their own referrals. GDCs provide assessment and support for people experiencing gender dysphoria. This is defined as being “where a person experiences discomfort or distress due to a mismatch between their biological sex and gender identity.”

The limited number of services and the increasing numbers of people being referred to GDCs each year across the UK are resulting in extensive waiting lists (see Appendix A). The delay from referral to hormone treatment can range from approximately 3–8 years. It should be noted that these waiting times, which were already very concerning beforehand (Henderson et al., 2022) were significantly affected by the COVID-19 pandemic, like many other services within the NHS (The King’s Fund, 2021; see Appendix A).

Assessments of gender, mental, physical, and social health are conducted across time. Following an individual’s final assessment where medical opinion and a diagnosis can be given, they can then begin accessing their individual care plan. This may or may not include medical interventions such as hormone treatment. Other treatment available along the care pathway following diagnosis includes voice and communication therapy, psychological therapy, hair removal, and surgeries (National Health Service, 2013).

Trans people are less likely to report mental health difficulties on completion of their individual care plan (Bailey et al., 2014). In comparison, a large study of trans people (n = 913) found that those not on hormone treatment were four times more likely to experience depression compared to those on hormone treatment (Witcomb et al., 2018). In addition, some studies have shown that following gender-affirming surgery, psychological functioning and wellbeing of young trans adults is similar to, or better than, same-age general population (de Vries et al., 2014). It is perhaps important to note that a proportion of people presenting at GDCs have a diagnosis of autism spectrum disorders, which may contribute to elevated levels of anxiety (Glidden et al., 2016).

It has been suggested that higher levels of anxiety, agitation, and uncertainty are exacerbated by waiting to access services (Henderson et al., 2022; Lawlis et al., 2017). In the latter survey study, young trans adults reported concerns about gaining access to gender-affirming hormones, the goals or steps required for transition, surgery, and legal issues, whereas parents were more concerned with safety and family acceptance. To help alleviate these stresses, two GDCs employ gender outreach workers to provide one-to-one appointments, drop-in sessions, social and support groups for people across their catchment area. It is likely that other trans people are accessing other services during that time such as clinical services (for example, CAMHS, Eating Disorder, Intellectual Disability services), social services, third-sector charities, and organizations; Ellis et al., 2015).

Trans people’s experiences of GDCs

Trans people have reported mixed experiences of GDCs for example, trans people have praised healthcare professionals on their understanding and support of trans issues, particularly around co-morbid mental health difficulties that trans people may face (Bockting et al., 2004; Guss et al., 2019). Trans people have also emphasized the importance of the therapeutic process of self-discovery and self-actualization (Bockting et al., 2004; Yilmazer, 2022). Despite clinicians demonstrating positive attitudes toward caring for trans people (Melin et al., 2019), some difficulties remain in providing excellent care. For example, trans people report high dissatisfaction with GDCs, particularly in relation to the lack of control regarding the clinical decision as to accessing medical interventions and the extensive waiting list (Hord & Medcalf, 2022). There have been suggestions that these relate to high lifetime prevalence of suicidal ideation (84%) and suicide attempts (48%) among trans people (Bailey et al., 2014).

Based on the literature, it is generally understood that gender-affirming care, environments, treatments, and social support are associated with positive psychological functioning (Bailey et al., 2014; Connolly et al., 2016; Dhejne et al., 2016; Valentine & Shipherd, 2018; Witcomb et al., 2018). This is particularly concerning given the current climate in which many young people are waiting to access trans-specialist services. For example, during the study period, access to gender-affirming treatment (i.e. puberty blockers, cross sex hormones) was restricted (and then reinstated) for trans people under 16. This attracted intense media coverage and debate around trans people and their rights, which continues currently following Cass’ review of young people’s gender services (Cass, 2024), which has also come under scrutiny (e.g. Noone et al., 2024). Although there is an emerging body of work exploring transgender children’s experiences of gender identity services (Horton, 2022) and more widely (Horton, 2023) the current study focuses on the GDC experiences of young adults (17–26).

Whilst there is evidence suggesting the social and emotional vulnerability of young trans people (Agana et al., 2019; Becker et al., 2016; Connolly et al., 2016; Dhejne et al., 2016), the impact of waiting for service access is under-researched. The current research seeks to explore the psychological challenges of young trans people waiting to access a UK Gender Dysphoria Service.

Objectives

The current study aims to explore the perceived psychological challenges and impact of waiting to access UK Gender Dysphoria Clinics on young trans people.

Methods

Design

A qualitative approach was undertaken with ten semi-structured interviews conducted online.

Participants

A consultant clinical psychologist from each participant site identified 50 people on their GDC waiting list based on the inclusion/exclusion criteria (see Table 1). To capture the “waiting experience,” people were identified in chronological order from 12 months of waiting. Potential participants were sent study invitations to briefly inform them of the study aims and process, and the lead researcher’s contact details. On receipt of the study invitations, 16 people contacted the lead researcher for more information about the study (=16% response rate). Interviews were granted on a “first come, first served” basis. Smith et al. (2009) suggest between 4–10 participants are appropriate for an IPA completed as part of a professional doctorate, as for this study. As such, 10 people (3 (trans) men, 4 (trans) women, and 2 gender nonconforming people) were interviewed. One participant identified as male at the time of interview but was on the waiting list to transition to female (see Table 2 for further information).

Table 1.

Study inclusion and exclusion criteria.

Inclusion criteria	Exclusion criteria
Self-identified as trans	Self-identified as unable to read, speak or understand English
Aged 17–26	Self-identified severe communication difficulties
Waited ≥12 months for an initial assessment at a UK GDC

Table 2.

Participant demographic information.

Name	Gender identity	Age	Reported physical or mental health difficulties	Religion	Sexuality	Waiting time	Service
Blake	Female	17	None	None	Straight	2+ years	C
Emma	Trans Female	–	Mental health difficulties	None	Lesbian	3+ years	C
Ghibli	Non-Binary	23	ADHD, Anxiety, Depression	Wiccan	Bisexual	1+ year	L
Kes	Female	23	Autism, Anxiety, Depression	Atheist	Demisexual	2+ years	C
Lydia	Trans Female	21	Depression	Agnostic	Pansexual	1+ year	L
Moss	Male	19	Mental health difficulties	Atheist	Bisexual	1+ year	L
Nova	Genderfluid	19	None	Atheist	Bisexual	1+ year	L
Oliver	Male	22	CFS/M.E.	None	Bisexual	1+ year	C
Sam	Male	18	None	Christian	Straight	2+ years	L
Wade	Male	–	None	–	Asexual	3+ years	C

Abbreviations: ADHD – Attention Deficit Hyperactivity Disorder; CFS/ME – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Ethics

The research protocol was peer-reviewed by the Doctorate of Clinical Psychology programme at the University of Liverpool. Sponsorship was provided by the University of Liverpool. Ethical approvals were granted by the NHS Research Ethics Committees and Health Research Authority (Ref: 20/ES/0105). Confirmation of Capacity and Capability was obtained from each NHS site.

Service user involvement

Gay Youth “R” Out (GYRO), a local LGBTQ+ group, supported the study and co-produced the research question. Transgender and gender non-conforming group members reviewed and co-produced the research materials (study invitation, participant information sheet, interview topic guide: see Appendix B) to ensure they were appropriate and sensitive to transgender issues. A former GYRO member participated in a pilot interview. Service user involvement was reimbursed with £250 of Amazon vouchers.

Procedure

Following contact from potential participants, the lead researcher sent an electronic copy of the study information sheet and consent form (hard copies were also provided if necessary). This allowed potential participants to make an informed decision as to whether they wished to take part or not. The information sheet and consent form reminded potential participants of their right to withdraw (themselves and their interview data) from the study without having to provide a reason. The removal of interview data was time-limited to the start of data analysis due to the nature of qualitative research and dissemination of pseudonymized quotes. All participants chose their own pseudonyms.

Prior to the interview, informed consent was obtained from all individual participants included in the study (including consent to being video-recorded) and they completed a short demographic questionnaire. Semi-structured interviews were conducted to establish and explore themes around the psychological challenges and impact of waiting to access a UK GDC. Interviews were conducted during COVID-19 restrictions, and so the lead researcher conducted all interviews via Zoom/Skype (Deakin & Wakefield, 2014). Interviews lasted approximately 60 min. Participants were debriefed and thanked for their time and contribution. Participants were not remunerated.

Analysis

Interviews were analyzed using Interpretative Phenomenological Analysis (IPA: Smith et al., 2009). IPA focuses on how people perceive, understand, and make sense of their lived experiences and of how the detail of individual experiences might be shared with other participants. Given the research aims to explore lived experiences of waiting to access GDCs and how people make sense of this experience, in relation to their mental health, IPA was considered the most appropriate method (Brocki & Wearden, 2006). The emphasis in IPA on a “double hermeneutic” (Smith et al., 2009) process of working with both how participants make sense of their experiences and the researcher’s interpretation and understanding felt particularly important given the cisgendered identities and professional roles of the research team. Using MS Office and nVivo, analysis consisted of the steps outlined in Pietkiewicz and Smith (2014). Interview data was prepared, identifying information removed, pseudonyms substituted, and transcribed verbatim by the lead researcher and an external transcriber (adhering to confidentiality agreement). Pseudonyms were created by participants when obtaining consent to participate (or by the lead researcher where one was not provided).

Following transcription and familiarization of each interview, the lead author made initial notes of descriptive comments on lived worlds and meanings, linguistic comments on what and how language is used, and conceptual comments from researcher’s perspective. Emergent themes were developed while searching for connections across them. Superordinate themes were then created with emergent themes nested within.

Positionality

The research team consisted of one trainee clinical psychologist and three qualified clinical psychologists, three of whom work within GDCs. All authors are cisgender, including a bisexual man, gay man, lesbian and heterosexual woman. All of the researchers have a belief in the right of trans and gender nonconforming people to access timely and equitable healthcare. The lead researcher adopted a critical realist (Bhaskar, 2010) position with the belief that “critical realism emphasizes the need to explore both the observable experiences of transgender individuals and the deeper social, cultural, and psychological factors that influence their gender identities and experiences” (Tyni et al., 2024). As knowledge is socially influenced, the “truth” can only be partially understood (Madill et al., 2000). The research team drew on their previous qualitative research experience (e.g. providing supervision) during these reflexive processes and when finalizing themes before analytic assurance was completed.

To enhance the credibility and rigor of the findings, data checking and theme confirmation were conducted with all members of the supervisory team (Spencer et al., 2003).

Results

Nine themes were identified (see Table 3). Five themes summarized the psychosocial challenges that trans people face during their waiting experience. A further two themes captured the individual mental health impact of waiting to access gender services, which seemed linked to the aforementioned psychosocial challenges. For example, Wade described daily instances of “transphobia” while waiting, leading to experiences of “dysphoria attacks.” A final theme focused on ways in which participants coped with the experience of waiting. Themes were multifaceted, very rich in data and while distinct, some data interweaved between them.

Table 3.

Study themes.

	Themes
Psychosocial challenges	"Grasping on a spider web of hope that’s about to snap” “People are uneducated and they don’t understand” “Society or whatever made me second guess myself” “I’m too autistic for that shit” “It sounded like the phone was just being left all day every day”
Mental Health Impacts	“(Gender) dysphoria attacks” “If it doesn’t go well by 30, I’m gonna kill myself”
Coping Strategies	“I’m going to just go on with me life”

Psychosocial challenges: “grasping on a spider web of hope that’s about to snap”

All participants described euphoria upon receiving the confirmation of their referral, which was shortly followed by a “devastating” realization that they had years to wait before their first appointment. Moss’ sense of “finally getting somewhere … not gotten anywhere” captured an illusion of progress echoed by half of the participants, for whom the “boring” (Blake) and “confusing” (Kes) uncertainty of waiting made it feel like life was “on hold” (Emma). For two participants, waiting was tainted by the regret of not seeking a referral sooner, a stark reminder that the waiting journey to access services begins long before the referral.

Several participants’ accounts emphasized their despair through a contrast with metaphors for a distant or fragile hope.

err it’s felt like being at the bottom of a mountain, and looking at the top, and seeing all that distance you’ve gotta go, all that way you’ve gotta climb, it’s a bit daunting I guess, erm, the expected wait times are still another year or two out for me (Lydia)

Wade also hinted at his vulnerability along his waiting journey.

I kinda got a noise complaint off the neighbours because I literally screamed in excitement ((laughs)) … being given this hope that you will eventually get to live the life the way you want to, but constantly having it in front of ya but just out of grasp … Kinda like grasping on a spider web of hope that’s about to snap ((laughs)) I mean I technically have given up hope that I’ll ever be able to transition anytime soon (Wade)

Both Lydia and Wade’s change of preposition creates a sense of the resignation experienced. This sense of hopelessness was understood by seven participants to create an unpredictable “usual cycle of moods” (Oliver), again suggesting resignation and linking to deteriorations in participant mental health and wellbeing.

Psychosocial challenges: “people are uneducated and they don’t understand”

Each participant expressed critical views about the media, public and socio-political landscape, and the stigma they perceived to emerge from this. For example, JK Rowling’s public essay on gender evoked strong emotional reactions particularly with our female participants. However, Sam and three participants felt times have “come a long way” in terms of social acceptance and recognition (including trans-affirming places of education and employment). Two participants (Lydia, Wade) suggested a “generational divide,” however others (Blake, Sam), felt more supported by their older relatives. Overall, it was felt that more work was needed.

A common challenge for participants was how the public learn about trans people –from “the next person” or the “corrupt” and “depressing” media (Sam, Oliver, Kes respectively). Half the participants felt unrepresented in the media and felt like they were fighting for recognition.

I’ve never felt represented. Never in a single thing I’ve read have I felt represented. Never have I ever read something in British media or otherwise that’s even mentioned trans people in it. It’s like they’ll write articles and articles and articles and articles and not a single word will be from a trans person. It will all be about trans people but never involve them. (Emma)

Others explained that celebrity role models had a positive influence on them while waiting to access services.

With Elliott Page, err, I felt very supported, so to say, to have like another celebrity icon that, well, myself and a lot of other people can now relate to, in terms of, we’re not the only ones going through these changes (Nova)

A well-publicized case of “de-transitioning” during the study period led to Lydia’s concerns of a “precedent being set” for trans healthcare (following a judicial ruling removing puberty blocker access for young people under 18) and concerns that “they do make us look bad” (Sam). While some participants expressed concern for those that de-transition, for most, the stigma arising from “sensationalized” stories of de-transitioning left them feeling frustrated, invalidated, and powerless:

It brings up some annoyance because my aunty supports the long wait period because of suicidal rates and de-transition after transition, and I’m sitting there like ‘well it’s a lot higher before transition’ (Wade)

Psychosocial challenges: “society or whatever made me second guess myself”

Nine participants spoke about their challenging experiences of transphobia, with seven people describing experiences of transphobia from others and five describing possible internalized transphobia. There was a shared sense that transphobia was to be expected for example, Kes reported to “carry pepper spray” following two “targeted” attacks. For Blake, transphobia was online with “hundreds of people” sending death threats leaving her angry, anxious and ultimately avoiding social media. Surprisingly, transphobia from family and friends was as commonly reported by participants as that by strangers (n = 6,7 respectively).

if they’re going to say things like that then I don’t want them to be my mates anyway but obviously you don’t expect your mates to do that and call you derogatory terms and stuff…my Mum’s boyfriend [would] always be like ‘Oh, I’ll never call you Sam…I don’t know how you can let your kid do that’ (Sam)

Sam’s experience can be interpreted as the ultimate rejection, which resulted in him living with his grandparents due to an unsupportive relationship with Mum and her partner who dismisses Sam’s gender identity. Such rejection (including microaggressions and misgendering) experienced by participants “invalidates [their] identity” (Ghibli).

Five participants described elements that may be understood as internalized transphobia, ranging from their own gendered expectations to references of “proper” transition (such as surgical intervention) despite LGBTQ+ community efforts to educate people that every trans person will have a different experience and surgical intervention does not equate trans identity.

“Society or whatever made me second guess myself. It made me think like ‘what if I am, just being a freak right now?’…it did- it did make me feel kind of disgusting so, but uhh, yeah *tuts* (Emma)

Emma shared how her experiences of transphobia led to feelings of disgust toward herself, her body and trans identity before conveying her disappointment in a society that does not ‘see’ her - or perhaps disappointment at herself for letting them make her feel this way about herself.

Psychosocial challenges: “I’m too autistic for that shit”

Concepts of identity were a significant feature of participant accounts. Seven participants described how specific aspects of their identities (e.g. neurodiversity, physical health conditions, sexuality and spiritual beliefs) impacted their experience of waiting. Waiting was also linked to self-doubt in relation to gender identity.

Kes had been self-medicating with hormones online and described the struggles when she reached out to her GP due to ASD difficulties.

Kes: He just said like ‘yeah, that’s really dangerous’ and like he was like being firm with me ya know, setting an example in front of these Uni students and um, it just led to me being like ‘okay so there’s nothing you can do for me then?’ … and I basically didn’t go back ((pause)) to ask after that point.

Interviewer: So you’ve not been able to go back and talk about possibly getting an endocrinologist referral since?

Kes: Yeah. I mean I could have. I’m too autistic for that shit.

Interviewer: Like you find that too difficult?

Kes: Yeah ((nodding))

She described difficulties with “finishing sentences,” “expressing meself in any way,” and “losing questions because I diverge so much.” This, and other healthcare interactions, may potentially shape expectations of accessing gender services (see theme: “It sounded like the phone was just being left all day every day”) whereas neurodiversity, for Ghibli, has somewhat helped their waiting experience:

I just keep forgetting about it because like, so I have ADHD anyway so when things are kind of out of sight they’re very much out of mind but … I just keep forgetting about it because it just feels like it is taking so long to hear anything(Ghibli)

The waiting experience for five participants brought in moments of self-doubt about gender identity.

The main worry will be like if I go, if I start getting somewhere and then realise, I was wrong, that’s like my main worry but at the same time it’s like I’ve felt this way since I can remember so I can’t be wrong (Moss)

Moss’ repetition of his “main worry” may represent the repetitive intrusive thoughts he has while waiting to access gender services that would allow him to explore these concerns without professional support.

Oliver differed to other participants in being “locked in the house for the past five, six, hell maybe even seven years” with M.E.

I’d like to be able to just sit and focus thinking about myself, but there’s always this other stuff going on, unfortunately…I need to get in shape. I need to lose this weight. I need to tone up the sort of things like stereotypically women do, like tone up my thighs and all that but er, then you’ve got the issue of I just don’t have the energy to do that so it’s a constant cycle of … that makes me sad and making me sad makes me have less energy (Oliver)

Additionally, Oliver described many life events that have had to take precedent over his transition such as moving home, abusive family relationships, revelations of family traumas, and a parent battling physical health conditions. These drain time, effort, and motivation for identity development, perhaps evident in Oliver being the only participant on the waiting list who had yet to proceed with social transitioning (e.g. name, pronouns to match the gender identity).

Psychosocial challenges: “it sounded like the phone was just being left all day every day”

All participants discussed the challenges of accessing gender services that develop during the waiting time including (in)accessibility, a perceived lack of funding, no service updates, and power imbalance.

Well they have the only phone I’ve ever rang that just rings forever, um, and like ((laughs)) I don’t really have a very high opinion of them but um, I don’t know what their budget is (Kes)

These challenges shaped expectations and steered some toward private healthcare services.

There was no answer for like three days to try and book, to talk to them … Just disheartening. I thought I was finally getting somewhere and then, it sounded like the phone was just being left all day every day … just made me feel a bit lonely… I’ve been looking at going private instead just ‘cause, it seems like the better option now (Moss)

This highlights a challenge for services as clients enter the service deflated, disgruntled, and mistrusting of the service.

It’s more like I need to convince [doctors] that I’m not lying, and a lot of people I’ve talked to feel the same way and that shouldn’t be something you need to do to a doctor. You shouldn’t need to be convincing them of anything … there’s always that kind of worry that they’re going to try and convince me otherwise or they won’t believe that I’m trans, and it’s like ((pause)) if they don’t want to give me hormones they won’t (Emma)

Six participants shared Emma’s anticipatory worries of the “power imbalance” within gender services with clinicians being seen as the ‘gatekeepers’ to accessing gender-affirming support and treatment. As such, trans people feel that they have to “adjust” themselves in the hope to be seen as “trans enough” and “qualify” for gender services.

Positive expectations were held by some participants (“I’m expecting them to help in some way”—Ghibli) and three participants did “credit” the services for being reassuring and responsive during the referral process.

Mental health impacts: “(gender) dysphoria attacks”

All participants spoke of the dysphoria that “permeates” their lives whilst being denied healthcare, with some using language evocative of mental health diagnoses (‘panic attacks’) to convey the force of the experience. Blake described the insidious nature of dysphoria, comparing it to a “snowball to a point of an avalanche,” evoking an image of emotional pain growing uncontrollably and overwhelmingly during the waiting time. Lydia described the sense of a “dark presence” which was felt throughout each interview. For nine participants, dysphoria focused on their body image. For Oliver, the more time passed, the more his disgust at his body found a new and varied focus:

It’s a new thing every day: I hate my high hairline. I hate my face. I hate how tall I am. I hate how wide my shoulders are. Eurgh, that’s just actually vile. Oh, my chest’s too wide. I’ll just look at myself in the mirror and go, ‘I hate that’. Not really associating the things you see in the mirror with yourself but knowing they’re there. That’s you unfortunately (Oliver)

For five participants, being denied treatment exposed them to increased experiences of dysphoria about their voices. These could literally be silencing and were linked to risk appraisals of threat and harm:

Me and me friends have been in situations where it’s just like loads of men and I’ll just let them talk and I’ll not talk cuz if I talk, I didn’t know what they would do. Erm, so a lot of anxiety comes with being scared that I’ll be figured out (Blake)

These examples hint at the shared sense of betrayal; the betrayal of their bodies not fitting with how they see themselves and for “removing the veil” (Lydia) and exposing them to other people. Waiting was felt to expose participants to accruing more experiences of their own dysphoria and of risks from other people’s transphobia.

Mental health Impacts: “if it doesn’t go well by 30, I’m gonna kill myself”

Most participants reported anxious, angry and suicidal thoughts and all shared a deterioration in their mental health while waiting to access gender services. This was attributed directly to the experience of the delay:

If you don’t suffer with a lot of mental health at the beginning when you receive that letter, know by the end that there may be a high chance that you will suffer from some mental health and psychological issues…before I began on the waiting list, I didn’t have the thoughts or the feelings that I do now and it kinda developed over the time of waiting and losing the hope slowly (Wade)

Five other participants shared Moss’ anger and frustration. These were understood to be in response to the challenges that young trans people face from other people (e.g. transphobia), within themselves (e.g. motivation) and the lack of mental health support while waiting to access services.

As demonstrated, anxious thoughts were shared throughout interviews by all participants relating to the waiting time, transphobia, media, and expectations of the service. Ruminating with worry about healthcare access was prominent for six participants, for example, Nova shared that “all the time I don’t know if I’ll be accepted or not.” For Nova, repeatedly thinking about invalidation and rejection may deepen their depression however it can be used to motivate them into action (i.e. setting up an online community for less common gender identities and sexualities, such as genderfluid, asexuality).

All participants shared their experiences of depression. Five of whom reported having suicidal thoughts during their waiting time.

The thoughts of cutting or, obviously if you’re really really bad, maybe the fleeting thought of suicide or something, but er, most of the time I bring myself out of that because very much my appearance is imperative to how happy I am in the future so that’s very much stopping me from doing that (Oliver)

Despite Oliver’s reassurances that he does not self-harm, he later stated that in those “fleeting moments of high depression, if nothing- if it doesn’t go well by 30, I’m gonna kill myself” before laughing to mask the pain (see “I’m going to just go on with me life” theme). Also, Sam disclosed previous suicide attempts prior to joining the waiting list highlighting the vulnerability of our participants.

Learning to cope with the wait: “I’m going to just go on with me life”

These impacts focus on how participants learned to cope with waiting times through using what might be regarded as both healthy and unhealthy coping strategies.

The coping strategies employed by some participants, whilst adaptive in the short-term, may have less positive long-term consequences. These less-healthy coping strategies included minimizing pain through using humor (e.g. ((laughs)) I’ve suffered from dysphoria for a while”—Wade), managing by themselves (“they didn’t know cause I just put on a happy face”—Blake), limiting their expectations (“I didn’t let myself be hopeful”—Emma), dissociating through substances (“I used to be a stoner”—Kes) or dissociating psychologically (“I’d like separate the idea of like my head and neck from the rest of my body”—Ghibli). Nine participants avoided activities or situations that would trigger dysphoria. Distraction was a common coping strategy for difficult but transient experiences, for example, accidentally catching reflections in the mirror.

I said trying not to think about it as a bit of a joke ((laughs)) it really kind of is the solution…talking with supportive people, playing music, the thing I love most in the world err, and experiences like movies, video games erm, board games, things like that…removes myself from myself if that makes sense. I can sort of forget about those particulars that I can’t change. I can just be in the moment and that. I can sort of ride that out (Lydia)

Participants shared the desperate and painful measures they took with gender expression. One participant sought out “black market” hormones with no access to medical monitoring or supervision. More commonly, participants reported their own experiences of breathing difficulties, bruised muscles, and ripped skin from using binders, KT tape, or tights for a flatter chest. With no apparent guidance on safe binding practices, one participant reported “cracked ribs” from their attempts at flattening their chest.

All participants also reported positive ways of coping such as optimism (“I’m going to just go on with me life and be who I am even if I haven’t got things like hormones and surgery or whatever”—Blake), seeking information (Sam used Google and YouTube to research hormones, packers, private costs, surgeries), social support and the “trial and error” of social transitioning (affirming pronouns, gender expression).

This shift in focus to social transition was a key coping strategy for all but one participant. Participant experiences of waiting were overwhelmingly distressing and negative. When (and only when) directly asked about any potential ‘positive challenges’ while waiting, all participants described ways in which they had tried to regain some control, often through a shift in focus to social transition. Due to the emotional turmoil and lack of control over the unknown waiting time, a dilemma often emerged: “sit here being sad” or “learn to love yourself.” Blake, an exemplar for six participants, shared:

Because it’s been such a long time, it’s forced me to become comfortable with meself now. Without hormones and surgeries…I was like ‘I need surgery there, surgery there, I need that’ but a lot of things I’ve became more comfortable with…So I think it’s got good and bad of it being long (Blake)

In spite of the distressing impact of the wait, eight participants recognized validation from others as a protective factor in preventing further deterioration in their mental health, allowing brief moments of what Ghibli described as “gender euphoria.” In the context of social transition, gender-affirming experiences with others appeared to help participants cope with the wait through developing autonomy and self-acceptance (for seven participants), confidence (for four), and empathy for others (for three). Finally, Lydia perhaps summarizes how most participants felt about waiting: “while I say it has got a positive aspect, I’d say the negative aspect is quite a bit stronger.”

For most participants, including Ghibli, connecting with the trans community such as local or University social groups was “amazing” as they provided safe-spaces for people to meet, learn, and find belonging, connection, similarity, social support and validation for participants. However, connection came with its own complications (i.e. shared pain, critical community, compare and despair) as referred to by half of the sample, perhaps linked to misinformation and underlying feelings of envy or jealousy.

This [non-binary] student made like these comments ‘Oh how can they be non-binary if they’re wearing makeup and a dress’ and they’ve made like several comments you know trying to invalidate my gender identity…being discounted by another member of the trans community when we should be supporting each other (Ghibli)

I’ve got a few friends that are like starting hormones and they’ve got surgeries booked in…they’ve been waiting a lot less than me…it feels like they’re being prioritised ‘cause the services aren’t accessible for everyone to get to…there’s like that little bit of jealousy and stuff (Moss)

Discussion

Although there are published studies about the waiting experiences of children and families (e.g. McKay et al., 2022), this is the first known study to explore the psychological challenges and impact of waiting to access UK gender services for young trans adults specifically. In addition to an uncertain wait, trans people faced service challenges, stigma, and transphobia often without professional support. This appeared to heighten experiences of dysphoria and mental health difficulties (such as anxiety, depression, suicidal ideation) while diminishing hope and wellbeing. Where participants had socially transitioned, gender-affirming experiences with others seemed to mitigate the distress created by the waiting period. Others engaged in unhealthy coping responses (e.g. avoidance, drug use). Findings indicated more psychological support is needed.

In the context of significant delays to treatment and societal transphobia, mental health difficulties were reported by all participants (e.g. anxiety, depression, body image, self-harm, and suicidality). The two themes regarding mental health support previous findings of distress among (young) trans people (Agana et al., 2019; Becker et al., 2016; Connolly et al., 2016; Dhejne et al., 2016). Mental health was felt to deteriorate during the waiting process, as in studies of waiting to access physical and mental health services (Gagliardi et al., 2021; Reichert and Jacobs, 2018). Suicidality was the most severe mental health struggle reported, by a participant who had yet to transition socially. In comparison, those who had begun transition (particularly hormone therapy) shared experiences of gender euphoria. This may support existing research that suggests gender-affirming transition improves mental health (Bailey et al., 2014; de Vries et al., 2014; Witcomb et al., 2018). This perhaps begins to explain the particular psychological challenges of waiting to access gender-affirming and life-changing treatment yet there is a 3+ year wait to receive support and treatment.

The waiting experience oscillated between hope and despair, particularly at the beginning. Tapping into the psychology of waiting, perception and expectations are crucial in determining the effects of waiting (Maister, 1984). This may explain the particular difficulties experienced in the current study following the realization of a significant wait time. For example, expectations are not met, thus the psychological impact is more challenging. Also, those who were aware of the wait times prior to their referral did not express the same joy on receipt of their letter compared to those who were unaware. Maister (1984) also states that waiting with uncertainty, unoccupied time, and with little or no explanation is experienced as feeling longer and more difficult to manage. The waiting time allowed young trans adults to provide their own reasons for not being seen for example, thinking people are seen quicker based on proximity to GDC. This may suggest better communication is needed between services and people waiting. The uncertainty of when they will access services was also attributed to further distress by our young trans people, which meant leaving them to occupy their own time and learn to cope.

A major theme focused on coping strategies. Avoiding, minimizing, and dissociating from emotional pain were viewed as unhealthy coping strategies (Puckett et al., 2020; Truszczynski et al., 2020), whereas seeking information, social support, and social transitioning were seen as more positive. “Unhealthy” coping strategies were understood by the authors to involve additional risk (e.g. accessing hormones without clinical guidance or supervision [Metastasio et al., 2018], cyberbullying, physical harm from binders). Similarly, connecting with the trans community brought benefits and challenges (e.g. practical advice, tendency to compare and despair, criticism within community; Cannon et al., 2017; Hendricks & Testa, 2012). This suggests that young trans people require additional trans-specific emotional, social, and practical support during long periods of waiting to access healthcare. Furthermore, the current study suggests that in the absence of professional and accountable support, young trans adults may seek information online through sources which may, or may not, be current, validated, or reliable (i.e. Google, YouTube, trans communities), highlighting the importance of promoting and working with organizations that offer accurate and safe guidance (e.g. LGBTQ+ youth social groups).

Many participant’s attempts to cope with waiting seemed to center on exploring and defining their gender identity with a reduced focus on a medical transition. Social transition while waiting was linked by participants to confidence, empathy, and self-acceptance when this was also accompanied by gender-affirming validation from others. While this self-questioning process can be confusing and distressing, it has been shown that self-discovery and self-actualization can be therapeutic (Bockting et al., 2004). Good clinical practice guidelines for mental health practitioners working with trans people suggest offering a confidential and safe space at any life stage to explore their gender with a gender specialist (British Psychological Society, 2019; Coleman et al., 2012)—rather than doing so alone during a distressing waiting period.

Challenges for young trans people during this time include navigating discrimination, stigma, transphobia (including from family and friends), and violence. This is particularly worrying given the growing rise in reported hate crime in the UK (GOV.UK, 2023) and consistent findings that such negative experiences are linked to poorer psychosocial outcomes for example, anxiety and depression (Puckett et al., 2020; Truszczynski et al., 2020). These experiences may leave people vulnerable to social isolation and developing unhealthy coping responses as they reinforce beliefs (as seen in our study) that people do not care about trans people (Truszczynski et al., 2020).

For some young trans adults, these beliefs transferred to services themselves as they began to expect an inaccessible and unresponsive service (due to their perceived lack of resource) or to mistrust the service (due to a perceived power imbalance or fear of being misunderstood). This appeared to encourage people to consider private healthcare services, which can be a financial burden on service users. In the context of primary care, Guss et al. (2019) recommend that to support adolescent service user’s privacy, “providers should discuss gender identity with patients without caregivers in the room.” In contrast, and whilst the default in adult services would be to respect service user confidentiality, some young adult participants in the current study expressed that they would want family members to join them for their assessment appointment. This highlights the importance of centering service user’s healthcare preferences and providing holistic, person-centred assessments and support as every young trans adult’s expectations and wishes will differ. As seen in our study, without making assumptions about ability, for inclusive practice it may be particularly important for inclusive practice to establish the preferences and needs of neurodiverse trans young adults with respect to their wishes for key, chosen, supporters to be present to facilitate effective communication during healthcare appointments.

Strengths and limitations

Based on an IPA approach, and service provision differing across UK GDCs, generalizations cannot be made about other gender services within the UK. However, many experiences relating to challenges and impact of waiting were shared by all participants across both recruitment sites in the current study.

The authors are pleased with the diverse representation this study provides, particularly for our neurodiverse and gender non-conforming service users, and being able to highlight some of the particular challenges they may face. While IPA is typically used with a homogenous sample, the study allowed a convincing demonstration of patterns across a dataset as well as scope to explore individual experiences (Smith et al., 2009; see Appendix C for cross-comparison). However, all participants were white British and so the study lacks representation of ethnic minority trans people.

Clinical implications

Given the waiting time, services do not currently meet demand and it appears that consistent institutional neglect and structural underfunding of trans healthcare services have greatly contributed to such inaccessible services (Hord & Medcalf, 2022; Újhadbor et al., 2022). This highlights the importance of service development with service user involvement, and improving the quality of current services to ensure timely, person-centred care can be provided.

Following the study period, the UK Government announced additional funding for healthcare services in an attempt to reduce NHS waiting times to 18 weeks in line with pre-COVID times (NHS England, 2021). The authors strongly recommend that attention is given to services (such as GDCs) that were beyond the 18-week point before the pandemic. Waiting for services appears to be a risk factor that conveys a high degree of vulnerability where little else may prompt self-harm or suicide. Also, five pilot GDCs were set up to help reduce waiting times by taking local people from other GDC waiting lists. This will undoubtedly help reduce the waiting times of accessing some services (and diagnosis) however some services have raised concerns that they cannot currently accommodate a quicker referral rate (i.e. surgical services; Bellringer, 2022) and therefore would be crucial for further funding and resources in these areas. For those services where waiting times are reduced, the authors envisage attention may turn to service user satisfaction. The authors hope that this paper indicates areas for service development and improvement across all services involved in gender-affirming support and care.

However, there are considerations for gender services to help with the waiting experience particularly to dispel the beliefs that services do not care about trans people (e.g. more effective communication with people on the waiting list by a variety of methods). There have been successful movements toward “active waiting” lists (S. A. Brown et al., 2002). At a very basic level, this would include informing people of how long they can expect to wait, routinely updating them of any progress or delays, and signposting to local support services if necessary (Chu et al., 2019; Snape et al., 2003). Gaining information of any psychological difficulties at point of referral (i.e. screening) could help with highlighting those who may be more susceptible to mental health struggles through the waiting and navigating the gender care pathway. To counter the psychological difficulties of waiting and potential mental health deterioration, psycho-educational groups could be offered on what to expect from the service with expertise from trans people who have completed the care pathway. This could provide opportunities for young trans people to share their concerns and address them by developing positive coping strategies as demonstrated in this study. Austin and Craig (2019) would also ­suggest improving resilience and wellbeing by focusing on increasing autonomy, community connection, hope, and self-compassion. Also, by involving service users and fostering healthcare staff-patient relationships at this early stage, services users will potentially encourage engagement with services later (and thus reducing costs of missed appointments; Chu et al., 2019). The authors wish to highlight that such approaches have been implemented into clinical practice at the participating recruitment sites since the study end.

Careful considerations should be taken to reduce sharing of misinformation, unsafe coping strategies, “compare and despair,” and criticism within the community (see also Hendricks & Testa, 2012; Parmenter et al., 2020). This could be addressed by having a peer support worker co-facilitating with a gender-specialist healthcare professional to provide some basic education around gender identities, internalized transphobia, and ideas of “not being trans enough,” which has since been demonstrated in select GDCs. Alternatively, providing consultation and/or training to other facilities (e.g. youth/University groups, third-sector) on how to provide gender-affirming environment/services and practical advice on expressing gender safely will help tackle stigma within the community. It could also help reduce the expectations (and burnout) that minority communities face when having to constantly educate others (as seen in the current study and other minority groups e.g. Gorski & Erakat, 2019).

Hord and Medcalf (2022) encourage the creation and development of trans-specific clinics so people can get their healthcare needs met within the community, whether that be related to their social/medical transition, sexual and/or general health. Training could be implemented at primary care level to develop trans-specialist GPs/HCPs located within the community and serve as the first point of call for the trans community. With appropriate gender-specialist training, these clinicians could provide an initial assessment and help reduce waiting times and improve access to specialist care and support.

Future research

Given the lack of racial diversity within the current study, waiting experiences could be further explored with black, Asian, and ethnic minority trans people. This is particularly important given the well-documented challenges of accessing healthcare services and racism within the LGBTQ+ community for ethnic minority people, and the additional vulnerabilities conferred by intersectional marginalized identities (e.g. Memon et al., 2016; Parmenter et al., 2020).

The current study offers an explorative snapshot of the trans experience of waiting to access gender services in the UK. While references were made to changes over time, it would be worthy to investigate further longitudinally to provide insight as to when best to offer coping skills or therapeutic support as a preventative measure.

Conclusion

In summary, waiting to access gender services is a fragile and vulnerable time for trans people. Hope for the future, physical and psychological wellbeing can dwindle over time as they are tested by stigma, transphobia, and inaccessible specialist healthcare. The uncertainty of waiting heightens their experience of dysphoria and mental health difficulties such as anxiety, depression and suicidality. Some trans people are forced to learn to cope and navigate transition during this time without professional or social support. This means they may engage in unsafe practices (e.g. drug use, unsupervised hormone use) highlighting the urgency for more resource and revision in service delivery to ensure accessible, holistic, person-centred trans-specialist healthcare can be provided within a timely manner.

Appendix A. Gender dysphoria clinic waiting times

	Prior to study period Data obtained March-August 2019		Following study period Data obtained December 2023
NHS Foundation Trust	First appointment	Second appointment (Diagnosis)	To be seen	To get hormones
Devon Partnership	“unable to estimate due to high demand”	30 months*	87 months	12 months
Leeds and York Partnership	30 months	18 months	57 months	10 months
Northamptonshire Healthcare	“unable to estimate due to high demand”	–	53 months	9 months
Northumberland, Tyne and Wear	26 months**	18 months	No longer accepting new patients
Nottinghamshire Healthcare	30 months	–	23 months	11 months
Sheffield Health and Social Care	19 months	–	62 months	16 months
The Tavistock and Portman	“unable to estimate due to demand”	12 months	60 months	10 months
Average Waiting Time	26.3 months	19.5 months	57 months	11.3 months

Data obtained from the named NHS Trust website (dated Mar–August 2019) and genderkit.org.uk (dated 01/12/2023).

*If referred before June 2016, otherwise unable to estimate due to high demand.

**4 months if transferred from another gender dysphoria clinic

Appendix B. Interview topic guide

Interview topic guide (as co-created with GYRO)

Thanks and introductions…preferred pronouns?

Trigger warning - You’ve had a chance to preview the questions before today. Were there any questions that you felt you wouldn’t want to discuss today? Do you have any questions before we start?

Obtain verbal consent to continue and record.

Background information

• In a nutshell, how would you define gender identity?

• Do you currently define your gender identity?

  • If so, how?

  • Have you defined it differently in the past?

• How and when did you get your referral to NHS Gender Service?

  • How did you find that experience?

    • Prompt: Was it easy or difficult? How so?

• What was life like before getting your referral?

  • Mental health?

  • Support systems?

    • Family? Friends? Other trans people? Support groups?

  • Healthcare services?

  • Child/adolescent services?

Now focusing on the period of time while on the waiting list (last 12 months)…

• What’s your experience been since being on the waiting list?

  • How do you deal with the waiting?

  • What have you tried to help you manage in the meantime?

  • It’s been suggested that trans people may take risks or engage in unhealthy ways of expressing their gender. Is this something you have considered? Done in the past or continue to do?

    • Prompt: e.g. making own binders, accessing hormones online, drug/substance use?

  • What advice would you give other trans people about to start waiting?

• How did you initially feel when you joined the waiting list?

  • Tell me more about that…

• How do you feel currently about waiting to access NHS Gender service?

• What expectations do you have of accessing NHS Gender Services?

  • Do you have any worries or concerns about accessing the service?

  • Prompts: e.g. meeting requirements; gender expression, being ‘not trans enough’; sexuality; gender non-conforming and non-binary experiences specifically

• What psychological difficulties have you faced while waiting to access an NHS Gender Service?

  • Any difficulties relating to intersectionality (e.g. race, religion, disability, sexuality)?

  • What other difficulties have you faced?

    • Have there been any financial implications for you?

• Have you considered going private?

  • What are the attitudes from other people toward you (seeking treatment)?

    • Prompt: supportive, objection, confusion?

    • Prompt: cyberbullying?

  • What effect did that have for you?

  • What are the attitudes from other people toward your family(‘s response)?

• How have you coped with or managed such difficulties?

  • Could you tell me more about those experiences…

• What supports or outlets have you found while waiting the past 12 months?

  • Prompt: support systems (family, friends, support groups, online communities, social media)

  • Have you used any of that support or outlets?

  • Have you connected with or received advice from other trans people?

• During your time on the waiting list, what have you noticed in terms of public trans recognition and awareness in the past 12 months?

  • Prompt: have you noticed any changes in how trans identities are understood?

  • Have these related to you in anyway?

    • e.g. Mermaids, TERF/J.K. Rowling, sports debates, Piers Morgan

    • Representation prompts: Laverne Cox, Chaz Bono, Caitlyn Jenner, NikkieTutorials, Sam Smith

    • It’s been suggested that the media focus on stories of de-transitioning. What’s your experience of the media while you’ve been waiting?

• What are your thoughts/feelings on this?

• Have they affected your mental health in any way?

• Have you noticed any positive challenges along the way?

  • Has the media had any positive effects on your mental health?

• What is currently important to you and your mental health?

• What do you think is important for other young people waiting to access GDC?

Anything that you felt you wanted to talk about that hasn’t been covered today, or anything that you would have liked more time to talk about?

Appendix C. Cross-case comparison of themes

- explicitly denied this experience

Funding Statement

This research was funded by the Doctorate of Clinical Psychology programme at the University of Liverpool as part of the lead researcher’s doctoral research submission.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Disclosure statement

No potential conflict of interest was reported by the author(s).