An Exploration of the Lived Experiences of Adults in the Trans Community Who Have Accessed Transition-Related Healthcare in England

Pollie Simpson

BSc (Hons) Health & Social Care

Abstract

The trans community often face stigmatisation, prejudice, and discrimination in all areas of their lives, and this can be encountered when accessing gender affirming healthcare through the NHS. There is minimal research on the lived experience of trans adults undergoing gender affirming healthcare in the UK.

This research project explored the lived experience of trans adults accessing transitional healthcare in England. A qualitative study was conducted utilising a phenomenological design. A qualitative online survey, using a series of open-ended questions, gathered the data for the study. The survey responses, analysed using thematic analysis, revealed three core themes: ‘inconsistencies in general practice’, ‘hormones – the desire for change’, and ‘waiting times- the challenges of referral and treatment’.

The study found that trans adults face significant barriers in accessing transition related healthcare. The results indicate the need for greater funding and capacity in all areas of trans healthcare. Whilst some good practice was noted, it was clear that improving healthcare professionals’ knowledge on trans identities, trans healthcare and treatment pathways was essential for ensuring high-quality holistic care to all trans patients. The study also revealed the need for further investigation around access to bridging prescriptions for gender affirming hormones.

Introduction

There is growing evidence that the number of adults who identify as transgender (or trans) is an increasing demographic (Miller, 2015; Nolan et al., 2019; Zhang et al., 2021). Accurate information on this community is difficult to ascertain, due to multiple factors. These include the wide range of terms used to describe trans identities, people concealing their identity out of fear of transphobia and minimal data collection in censuses or population-based surveys (Nolan et al., 2019).

Globally, transgender identities are estimated to make up between 0.3% and 0.5% of the adult population, which equates to over 25 million people (Winter et al., 2016; Zhang et al., 2020). Within the United Kingdom, the number of adults who identify as trans is unknown, but it is estimated to be around 1% of the population, which equates to more than half a million people (Stonewall, 2022). Trans is an umbrella term referring to individuals whose internal experience and sense of gender is different to the gender associated with their sex assigned to them at birth (Government Equalities Office, 2018). The term transgender refers to a person’s gender expression and gender identity but does not relate to their sexual orientation (World Health Organisation, 2022a).

The trans community often encounters stigmatisation, prejudice, and discrimination within many aspects of their lives, including 2025

education, the workplace, and in both social and medical environments (Bachmann & Gooch, 2019; Byne et al., 2018; Hibbert et al., 2018). Research has shown that enduring social stigma can negatively impact a person’s wellbeing and cause psychological distress (Bockting et al, 2013).

Additionally, trans adults experience a disproportionately high burden of disease (World Health Organisation, 2022b) and experience poorer health outcomes than the cisgender population (Winter et al., 2016).

Transition, also known as gender affirmation, is a process that aligns the trans person with their perceived gender identity. Transition can be social, medical, and legal, and the trans person may choose all, some, or none of these options (Lane, 2021). In England, trans adults can access transitional related healthcare through the National Health Service (NHS) or through private General Practitioners (GP). Private GP’s consultations can be in person or online, but the costs involved can be prohibitive (Wright et al., 2021). It is unclear how many people consult a private practitioner due to the lack of data (Hudson-Sharp & Metcalf, 2016). For many people, their transition begins when they consult their NHS registered GP, who can make a referral to a specialist service known as a gender dysphoria clinic (GDC), previously known as a gender identity clinic (GIC). The GDC is a multi-disciplinary team which includes registrars, psychiatrists, psychologists, endocrinologists, nurses, and speech and language therapists, all of whom aim to provide ‘holistic gender care’ (NHS, 2022a).

There is empirical evidence that trans individuals may face barriers to accessing transitional healthcare (Puckett et al., 2018; Warner & Mehta, 2021). To date there is only minimal research that focuses on the understanding of the lived experience of adults accessing transitional healthcare in England. As this is a growing community, this study will be beneficial to health and social care practice, as it will add to the research literature in this area. Whilst the study will primarily highlight areas where there are opportunities to improve the service in the future, it will also give credit to good practice where it arises.

Aim and Objectives

The aim of this project is to identify any common negative aspects of the lived experience of trans adults when accessing transitional health care in England. The information gathered can be used to inform future practice and improve healthcare outcomes for this growing community.

Objectives

• Explore common themes in the survey results.
• To identify barriers and concerns relating to transitional healthcare in England.
• To identify key messages for improving transition healthcare from the perspectives of trans adults.

Research Question

What are the lived experiences of adults in the trans community who choose to access transition-related healthcare within England?

Literature Review

The purpose of a literature review is to gain an overview of the relevant research undertaken on a chosen topic (Sarantakos, 2013, pp.151-152). This review process gathers and evaluates the existing published research before synthesizing the information into a cohesive summary of existing knowledge in the field (Denscombe, 2021, p. 46). An initial literature search was undertaken in November 2022, before being renewed in January 2023, to ascertain if any new research had become available. As no new information was found, the original search findings have been included in this study.

The research question, ‘what is the lived experience of adults in the trans community who choose to access transition-related healthcare within England?’ was the starting point for this literature review. By undertaking a literature review, the researcher can study and interpret the literature relating to the topic and seek answers to the research question by systematically searching, appraising, and analysing relevant literature (Aveyard, 2019, p. 2).

Whilst the intention of the study is to examine the experiences of the trans community in England, the literature review has been undertaken on an international basis due to limited research in the target location. The search terms used, comprised of single or multiple keywords, were ‘transgender’, ‘trans’, ‘trans-related health care’, ‘transition’, ‘healthcare’, ‘gender affirming’, and ‘gender dysphoria’.

A systematic search was undertaken in Google Scholar, and the databases CINAHL (Cumulative Index to Nursing and Allied Health Literature), MEDLINE (PubMed) and Wiley Online Library, using the same keywords. These databases were chosen as they are recognised as sources of high-quality health and social care research (McGill University, 2013). Boolean logic was utilised to focus the search and differentiate or narrow the results (Aveyard, 2019, p.85). As the study topic relates to transgender healthcare in England, the words chosen as keywords reflect the language of transgender health in the UK (Shepherd & Hanckel, 2020).

Inclusion and exclusion criteria were constructed and applied to both strengthen the research reliability and to ensure replicability (Snyder, 2019).

The searches identified 312 potential papers, and these were examined by reading the title, the abstract (where applicable) and applying the inclusion/exclusion criteria. This narrowed the list of candidate papers considerably. After duplicates were removed, 37 papers remained that were suitable for inclusion. The full text of each paper was read, resulting in a further 26 papers being excluded. The remaining 11 papers were re-read, checked against the inclusion/exclusion criteria, and considered for both currency and relevance to the research question (Blakeslee, 2004). This final reduction, further excluded another three papers, leaving eight to be critically evaluated. This process is visually represented in Figure 1.

The papers accepted for the review were critically evaluated using the Joanna Briggs Institute (JBI) critical appraisal checklist for qualitative research (Joanna Briggs Institute, 2017).

By following the questions within the JBI checklist, it allows the researcher to assess the validity of the research, understand if the research methodology is congruent with the research objectives, ensure the methodology is adhered to, and minimise potential bias and ensure the research is applicable to the review topic (Munn et al., 2020). In moving through the questions on the checklist, the researcher follows a structured approach which ensures that the papers are critiqued consistently and with equal discipline (Aveyard, 2019, pp. 108-109). A summary of the studies included in the literature review can be found in Appendix A.

Analysis of the papers was conducted utilising an integrative review style (Whittemore & Knafl, 2005). This approach was chosen as it allows the researcher to include a wide range of literature, including non-experimental research, such as healthcare practice guidelines and quality approaches (Souza et al., 2010). This type of review is useful to analyse empirical research in healthcare, including the importance of understanding a patient’s experience, which directly links to the research question.

Three main themes emerged from the literature: discrimination in the healthcare environment, waiting times to access services and lack of medical providers’ knowledge on transgender healthcare. These are illustrated in Table 3.

Discrimination within the healthcare environment

The transgender community is a highly marginalised group, which can often face discrimination, stigmatisation, and prejudice in every aspect of their lives, (Bell & Purkey, 2019; Harrison et al., 2020; Joseph et al., 2017; Puckett et al, 2018; Willis et al., 2020; Wright et al., 2021).

In qualitative transgender healthcare research from within the UK, examples of discrimination in a healthcare environment can be found in Willis et al. (2020) and Harrison et al., (2020) study’s findings. In a research article with 19 participants, Willis et al. (2020) describes trans patients being deliberately misgendered, being asked to pay for a private prescription for gender affirming hormones and receiving hostile responses after revealing their gender identity. In Harrison et al.’s (2020) study, ‘understanding the lived experiences of transitioning adults with gender dysphoria’, they found a third of the study’s participants had faced ‘discrimination in healthcare’ services.

Additionally, studies from the USA and Canada also found discriminatory practice within the healthcare environment. In Puckett et al.’s (2018) study of 256 transgender or gender non-conforming adults, they found transphobia and discriminatory practice within multiple healthcare organisations. Participants in this study described being ‘denied treatment’ and receiving ‘verbal harassment and abuse’ (Puckett et al., 2018). In Bell & Purkey’s (2019) study, all 11 participants had experienced discrimination in seeking health care.

Waiting times to access services

In transgender healthcare literature, it is acknowledged that adults who access transition healthcare can face many challenges and may face barriers in accessing specialist care (Harrison et al., 2020; Puckett et al, 2018; Shepherd & Hanckel, 2020; Willis et al., 2020; Wright et al., 2021).

Within the UK, studies have found that the long waiting times to access specialist services have a detrimental effect on a person’s wellbeing (Harrison et al., 2020; Shepherd & Hanckel, 2020; Willis et al., 2020; Wright et al., 2021). The length of time a person had to wait to attend an NHS gender identity clinic (GIC) varied in the studies, with one study reporting that referrals to a GIC were the longest of any specialist service in the UK (Willis et al., 2020). The average wait time was found to be 136 weeks in 2017 (Harrison et al., 2020), and is now up to 260 weeks (Parsons, 2021). A trans service improvement project based in a Southwest England GP Surgery (Boyd et al.,2022), found the average wait time for an initial appointment at a GIC, following referral, was 26 months. Long waiting times were not raised as a barrier in the studies undertaken by Bell & Purkey (2019) and Puckett et al. (2018). As Bell & Purkey’s study was based in Canada, it is relatable to the UK, as both countries have a healthcare system that is free at the point of access and funded through taxation (Martin et al., 2018). However, since 2016, Canadian trans healthcare services were devolved to a patient’s primary care practitioners from a centralised specialist service, which has greatly reduced the waiting time in accessing care (Lusiak, 2020). As Puckett et al.’s, (2018) study was based in the USA, it is not directly comparable, as trans adults in the UK can choose to access free NHS transitional healthcare, where access in the USA will be provided by healthcare insurance or will have to be privately funded.

Lack of medical providers knowledge on transgender healthcare.

The existing literature highlighted many medical providers such as GPs, lack knowledge on transgender healthcare (Bell & Purkey, 2019; Boyd et al., 2022; Joseph et al., 2017; Puckett et al, 2018; Willis et al., 2020; Wright et al., 2021).

In UK research papers that employed qualitive interview methods, the experiences of trans adults’ interactions with their GPs were varied. Willis et al. (2020) reported a ‘wide variation’ in GP’s knowledge on trans healthcare and found that trans patients often had to change GPs to gain a referral to a GIC. Wright et al. (2021) noted mixed experiences, ranging from positive supportive relationships with their GP to negative experiences of feeling discriminated against after disclosing their gender.

The international research studies by Bell & Purkey (2019) in Canada and Puckett et al. (2018) in the USA, found medical professionals and physicians often lack knowledge on trans identities and transition-related care. Additionally, Bell and Purkey’s (2019) study noted that family physicians only had a limited understanding of the initiation, dosage and monitoring protocols for gender-affirming hormone therapy.

Whilst it is a non-systematic review, Joseph et al. (2017) compiled a research paper reviewing the management of transgender patients by non-specialist clinicians in the UK. The study discussed issues raised by GPs concerning their perceived lack of competence in the prescribing and monitoring of gender-affirming hormone therapy.

Furthermore, the care of transgender patients study by Boyd et al. (2022), reported that trans adults feel GPs can lack relevant skills and can appear unsupportive or dismissive to their healthcare needs. Boyd et al. (2022) also found that no UK-wide evidence-based treatment or monitoring guidelines for gender dysphoria exist within primary care. Additionally, Harrison et al. (2020) reported most participants in their study had negative experiences in primary care, with GPs only providing minimal support or guidance.

To date, there is minimal research undertaken to understand the lived experiences of adults who access gender affirming healthcare services within England. The current literature highlights specific barriers to care, such as long waiting times and inadequate physician knowledge, however, the barriers are likely to be multifactorial. To gain a real understanding of both the barriers and the positive aspects of care, more research is needed into the lived experience of trans adults who have accessed gender-affirming healthcare (Joseph et al., 2017; Shepherd & Hanckel, 2020; Willis et al., 2020; Wright et al., 2021). Only by understanding their lived experience can future healthcare guidance, training and practice be improved.

Ethical Issues

All research undertaken with human participants carries an aspect of risk (Sikweyiya, & Jewkes, 2013). The application of ethical principles in any research study is important (Orb et al., 2001). In qualitative studies, due to their in-depth nature, ethical considerations are salient to both govern how the researcher conducts the research and to minimise any risk of harm to the studies’ participants (Arifin, 2018).

Prior to conducting this research, ethical approval was sought and granted, in compliance with Bishop Grosseteste University’s ethical policies and procedures (Bishop Grosseteste University, 2019). The approved ‘Research Ethics Clearance Form’ can be found in Appendix B.

When undertaking a research study, the researcher must ensure that the four ethical principles of (1) respect for autonomy, (2) justice, (3) beneficence, and (4) non-maleficence are upheld (Beauchamp & Childress, 2001).

To respect autonomy, the researcher gave potential participants clear information about the study, including the type of question asked, to ensure they were fully informed (Sarantakos, 2013, p. 17). Potential participants had to read and acknowledge the research information sheet (which can be found in Appendix C) and give full consent before being able to access the research questionnaire to take part in the study (Bryman & Bell, 2007). Furthermore, participants who volunteered to take part in the research survey were made aware that they could exit the questionnaire at any time before submission, and any information already entered would not be saved. Additionally, the questionnaire allowed all data to be gathered anonymously, and no identifying details were requested. To comply with justice, participants were selected for the study based on the eligibility criteria and by no other means (Ross, 2012).

Beneficence is shown by ensuring the research is appropriate to the target population. The knowledge gained in the study will add to the limited research literature on trans healthcare in England, and could be used to both inform and improve trans healthcare practice in the future (Wiles, 2012).

Non-maleficence is considering the potential risks to the research participants and preventing or mitigating any foreseeable harm (Bowling, 2014, p. 183). As it was impossible to foresee all potential harm, signposting to organisations that specialise in trans support was provided, both in the participation sheet and on the final page of the questionnaire. As the researcher is cisgender, advice from close friends in the transgender community was sought, to ensure that the signposting organisations were pertinent to potential study participants (Henrickson, et al., 2020).

Methodology

The paradigms of quantitative and qualitative research were considered for this study. Quantitative research was excluded, as this type of research does not allow the researcher to gather, describe or interpret the lived experiences of people. Instead, it allows a researcher to rigorously test a theory about a social phenomenon or human problem by gathering numerical data which is then explained by analysing the statistics (Yilmaz, 2013).

The approach undertaken will be qualitative in design, as this paradigm is best suited to describe, gain insight and understand a person’s unique lived experience (Bell & Waters, 2018). This type of research design is particularly useful in understanding how people experience the world and enables the researcher to focus on preserving rich meaning when examining the data from participant responses (Bhandari, 2022). Qualitative researchers believe that there are many versions of reality, and they focus on the understanding of people’s ‘beliefs, experiences, attitudes, behaviour, and interactions’ (Pathak, et al., 2013).

Qualitative research is guided by the philosophical principles of a constructivist ontology and an interpretivist epistemology (Sarantakos, 2013). Constructionism is based on the belief that there is no objective reality and there can be no objective truth. Instead, they believe that reality is built and that meaning only emerges from people’s interactions with the world (Ponterotto, 2002). An interpretivist epistemology is subjective and believes that the researcher relationship with participants is an essential part of the research process, which means they cannot be fully objective (Gray, 2021). Instead, the researcher interprets the data and is interested in how environments are contextualised and how cultural and social structures guide and explain opinions and personal views (Sarantakos, 2013).

The theoretical approaches of inductive and deductive reasoning were both considered. Inductive reasoning was felt to be the most appropriate for the study. This approach is concerned with understanding an experience by looking for patterns and then developing a theory. This is opposed to deductive reasoning which aims to test and explain a theory that already exists (Soiferman, 2010). Since there is minimal existing literature on the study topic, there are no theories to test, instead the study aims to develop and understand the lived experience of people in the study group. By understanding their lived experiences, patterns may emerge which could allow the researcher to develop a theory or make preliminary conclusions (Streefkerk, 2019).

The qualitative methodologies of ethnography, grounded theory, and phenomenology were again all considered for this research. Ethnography was excluded as it seeks to understand a culturally defined population and focuses on patterns discovered within that given population, rather than exploring a person’s individual experience (Dodgson, 2017). Grounded theory was also excluded as it aims to clarify a concept, discover a new theory, or provide new insights on a given topic (Denscombe. 2021, p. 52). It does not explore individual experiences but looks at patterns until a core concept is identified as having implications applying to all in the study area (Cutcliffe, 2000). Phenomenology aims to understand the lived experiences of individuals and explore what an experience means to a specific group of people (Grossoehme, 2014).

The study will be undertaken utilising a phenomenological design, this was chosen as it allows the researcher to describe personal experiences and understand things through the eyes of someone who has lived through the experience (Denscombe, 2021, p. 51).

German philosopher Edmund Husserl is considered to be the founder of phenomenology (Groenewald, 2004). In his approach, experiences are described from the perspective of the research participant and the researcher must ‘bracket’ their own opinions, and remove any presuppositions (Crotty, 1996). His student, Martin Heidegger, later developed Husserl’s works using hermeneutics, rejecting ‘bracketing’ as he argued that it was impossible for a researcher to remain impartial due to becoming entangled in the experience (Reiners, 2012).

For this study, a phenomenological strategy, with its foundations in Heidegger’s hermeneutic method, will be used. This strategy was considered most appropriate for this study as the researcher cannot be totally detached from their own presuppositions and beliefs due to having close associations with the transgender community.

The researcher’s epistemological position for this study is based on subjectivism, as the study data is held within the lived experiences and perceptions of the research participants and the researcher engages with the participants in collecting the data (Ratner, 2002). The ontological position is based on relativism, which believes the truth is not constant, but varies in consonance with circumstances (Rassokha, 2021).

Methods

This study was conducted using an exploratory sample which allowed the researcher to generate insights and gather information from the transgender community. This type of sample has been selected as it is best suited towards small scale qualitative data (Denscombe, 2021, p. 71). The non-probability sampling technique of purposive sampling, also known as judgemental sampling, was applied (Kumar, 2019, p. 307). Purposive sampling was deemed the most appropriate approach as it allows the researcher to ‘hand pick’ participants based on their relevance to the topic area and because they have lived experience in  the phenomenon of interest (Palinkas et al., 2015). Additionally, this type of sampling is suitable for creating an exploratory sample (Denscombe, 2021, p. 79).

Data gathering in phenomenological research often consists of focus groups, interviews, and observations (Errasti‐Ibarrondo et al., 2018). All these methods were considered for this research study. However, focus groups and observations were quickly ruled out, due to the sensitive nature of the research question. Furthermore, as the target community is marginalised, the participants may have felt uncomfortable discussing their personal life experiences in the company of others.

Initially, the methods of gathering data through one-to-one, semi-structured interviews, was considered be the most appropriate option for the research participants. This was due to the participants being able to gain assurances of privacy and confidentiality from the interviewer, before disclosing any personal information (Wellings et al., 2010). Additionally, the literature review revealed that interviews are the most dominant method in phenomenological research, which instilled confidence in the research method (Bevan, 2014).

However, after consulting friends from the trans community, this approach was re-considered and found to be unsuitable. The reasons for this are multifactorial. Firstly, the subject matter of a person’s transition is sensitive, meaning the person may feel uncomfortable discussing this face-to-face with an unfamiliar person. As the researcher is cisgender, this may also act as a barrier to some trans adults in the sharing of their experiences. Finally, whilst many people from the trans community may choose to share their experiences to help others who wish to transition, they often prefer to share these details anonymously and in the safe environment of their own home (S. Williams & A Williams, personal communication, November 18, 2022).

After considering and researching alternative methods for gathering qualitative data, a qualitative online survey was chosen to collect data via a series of open-ended questions (Braun et al., 2021; Terry & Braun, 2017). All questions were based around the lived experiences of accessing transition healthcare in England.

An example of the type of question posed was ‘please tell me about your experiences of seeking gender-affirming healthcare at your doctors/GPs surgery?’. This question and others included in the survey, were carefully designed to allow the participant to respond in a way they felt comfortable with. As participants could express themselves in their own words and decide on the length of their answers, the rich information gathered will reflect their lived experiences (Denscombe, 2021).

The survey allowed the participants to remain anonymous, as no identifying details were requested. This protection of their privacy may have given participants the confidence to share sensitive experiences (Eyssel et al., 2017). Although the qualitative survey is not often used in research that utilises a phenomenological design, it still offers a researcher a way to capture the diversity of perspectives and to gain a broad understanding of the lived experiences of the research participants (Braun et al., 2021). Additionally, the online qualitative survey has been found to be an appropriate method when gathering data from diverse or marginalised communities (Boulton, 2020; Braun et al., 2021; Neville et al., 2016).

To ensure participants had a clear understanding of the research, a participant information sheet (see Appendix C) was added to the first page of the online survey. It contained all the relevant information to ensure the participant was fully informed on the nature of the survey. Details included the area of research, the types of questions asked, how their confidentiality would be protected and how the data would be stored. The participant needed to acknowledge as read this sheet and give consent before being able to progress onto the survey questions.

The survey was piloted to two people from the local trans community. This ensured the questions were appropriately worded and the used language and tone that was respectful and both applicable and acceptable to the trans community. This early-stage feedback was fully incorporated into the survey questions. This feedback included two main points. The first was asking where they first sought help or support and to whom did they first speak about the start of their journey as a trans person. The second was to clarify the question on experiences in the GIC or GDC to allow a more developed response to be gained.

For inclusion in the research population, the participant must: (1) be 18 years or older, (2) self-identify as transgender, (3) be a resident or have previously resided in England, and (4) have accessed gender-affirming healthcare. The criterion was designed to ensure the study participants have experience in the phenomenon being researched and could provide the best information on the study topic (Dawson et al., 1993).

To make potential participants aware of the study, advertisements were circulated online via both public and private trans community groups and forums (after receiving permission from group admins) on social network sites such as Facebook and Twitter. Additionally, the researcher promoted the survey by word of mouth. This was helped by the researcher being a member of local and national lesbian, gay, bisexual, and transgender (LGBT) support groups, and an elected member of a trade union’s equalities forum.

The sample size was planned to be between ten and fifteen participants. This figure was selected following the recommendations of Sandelowski (1995) who advocates that the sample size should be big enough to allow the development of ‘new and richly textured understanding’ of the phenomenon of interest, ‘but small enough to allow the deep, case-oriented analyses of qualitative data (p. 183). Additionally, Larkin et al. (2021), suggests that a sample size of between three and eight participants is sufficient, when undertaking phenomenological research.

Data was analysed by utilising inductive thematic analysis. This qualitative method, allows the researcher to closely examine sets of text to identify, explore and interpret patterns of meaning or themes (Sarantakos, 2013, p. 379). Braun & Clarke’s (2006) six- step framework was followed to ensure the data was analysed systematically (Maguire & Delehunt, 2017).

Results and Findings

Twelve participants completed the online survey, all of whom met the inclusion criteria outlined in the study’s methods. There were four participants, however, who had included identifying details into the survey results, which revealed they were personally known to the researcher. These results were removed to prevent the possibility of any researcher bias, which may have subsequently distorted the results of the study (Polit & Beck, 2020). The remaining eight survey results were reviewed and analysed by utilising Braun and Clarke’s (2006) six-step process.

Whilst the answers from these eight participants were broad ranging in both style, brevity, and content, three main themes emerged across the responses. These have been given the titles: ‘inconsistencies in general practice’, ‘hormones – the desire for change’, and ‘waiting times- the challenges of referral and treatment’. Reviewing the responses revealed that all three themes are interlinked, however, for reasons of clarity, they will be discussed separately. It should also be noted that the quotes used to reinforce the themes reported in the results often come from a subset (often participants 5, 6 and 7) of the eight participants who provided more verbose answers than the others.

Inconsistencies in general practice.

Participants described differing experiences of seeking gender-affirming healthcare at their own general practice (GP) surgeries. Some had positive experiences and felt supported, whilst others experienced overt discrimination, minimal support, and lack of care. Accounts of positive experiences generally centred on the trans person feeling heard, being accepted, and receiving support from their GP.

‘I had a very good relationship with my doctor, they were always so caring’ (Participant 3).

‘I always felt supported and listened to. I was pleased I had gone to her, she made me feel ok to be me’ (Participant 7)

‘My GP was awesome. They immediately referred me to the GIC.’ (Participant 1)

Negative experiences often focused on a GP’s perceived lack of knowledge on trans identities and their associated health care needs. This was reflected in many comments about participants feeling not understood or listened to. Barriers preventing referral to a specialist gender service and the conflation of their trans identities were also frequently mentioned, often in the context of a participant’s poor mental health.

‘… when I explained my true gender, he didn’t seem shocked but made it clear to me that he could not help me, I felt I was being judged and found to be lacking’ (Participant 6).

‘… he listened but felt unable to offer me any advice, he suggested I talked things through with my family and think about things for a few months and if I felt the same to come back’ (Participant 2).

‘… he seemed to think that I was maybe depressed and that was affecting how I was feeling. I was advised to go home … and continue to take my anti depression tablets … and see if my feelings changed. I went back 3 months later … this time he referred me to have some CBT. I asked to be referred to a gender clinic but was told I’d need counselling first …

I didn’t feel he understood me, and it felt like my feelings of being in the wrong gender were just dismissed as part of my poor mental health. (Participant 4).

‘I was generally made to feel irrelevant and invisible and a headache they could do without. I felt insulted that I was offered antidepressant meds after being told this was just a phase’ (Participant 5).

Five of the eight participants recounted how their negative experiences of seeking care, GP. This time I was treated well, I felt supported and listened to’ (Participant 6).

‘I did end up swapping GPs as I felt my old GP really didn’t understand what I was going through. Finally, I did make some headway with getting referred to a GIC’ (Participant 5).

‘I had to change doctors more than once. I even had to change GP surgeries … until I finally found a doctor who would listen to me’ (Participant 8).

Six participants described instances of discrimination, when attending GP practices. The most common experience was being misgendered by both medical and support staff. Other examples were: hearing others make derogatory comments about them, being asked inappropriate questions or having people move away from them in waiting rooms.

… when I got to speak to a GP who would take me seriously, they often addressed me as Mr when I am a woman. … people at my GPs surgery deliberately refer to me as he, when its clear I’m a she, just to upset me. (Participant 5)

‘I hated it when I was misgendered by several members of staff who always referred to me as Miss instead of just using my given name.’ (Participant 6)

‘I have heard people refer to me as a tranny, often felt stared at and had patients changed seats to move further away from me. I hated being asked personal questions about my sex life and why I had not changed my name (my name was suitable for the real me).’ (Participant 7)

There are two other items of interest in the survey results that are additional contributary factors to the concept of inconsistencies in general practice. Firstly, participant 3’s GP admitted they had no knowledge of trans healthcare but explained they would undertake research to understand what options were available. This comment can be regarded as both positive and negative and will be explored further in the discussion. Secondly, Participant 1 disliked that errors were often made during blood tests leading to essential information being delayed or lost. These points, although referred to by single participants, still hold merit and are worthy of inclusion.

Hormones – the desire for change.

All the survey participants expressed their desire to access gender affirming hormones through their GP practice. Each respondent revealed how they had requested hormones from their GP to enable them to begin a medical transition, but none were successful. Often, the reason given for the refusal was the need to be assessed at the gender clinic first. This was so the correct prescription advice and monitoring requirements could be passed to the GP practice.

‘Neither GP offered hormone therapy, even though I repeatedly asked for it, stating that I had to go to the GIC first’ (Participant 5).

‘I asked if I could be prescribed hormones by the practice but was told this was not possible until the gender clinic recommended them and gave the practice the correct advice to prescribe them for me’ (Participant 6).

‘I was disappointed that my GP was unable to give me oestrogen, as this would have greatly help me be myself much quicker’ (Participant 7).

Six of the eight participants were taking gender affirming hormones at the time of completing the survey. All six were prescribed these hormones through their own respective GP practices. This was only after being assessed to start hormone treatment at a GDC and dosing recommendations had been sent to their practice.

The remaining two participants were both unable to start hormone treatment as they were still waiting for either a first or second appointment at the GDC; both had been waiting for more than three years. Finally, participant six revealed they had bought hormones online and had taken them for over a year, whilst waiting for their appointment at the GDC.

‘After a very long time and two appointments at the GIC, my GP was finally able to prescribe oestrogen for me’ (Participant 7).

‘My GP… administered my testosterone injections after receiving advice from my gender clinic’ (Participant 3).

Many of the respondents expressed feelings of low mood and poor mental health, whilst waiting to start gender affirming hormones. They often describe ‘feeling stuck’ or being ‘unable to move on’. Over half voiced a wish for their own GP to be better trained in trans healthcare. This would then facilitate the GP being able to start a patient’s hormone treatment, without the need for that patient to be assessed at the gender clinic.

‘Make the process of getting hormones quicker, waiting for such a long time made my mental health drop and left me feeling that I wasn’t important’ (Participant 2).

‘… most doctors do not understand how to treat trans people … they have no idea of the treatments available or even how to offer the correct care’ (Participant 8).

‘If I could change one thing, I would make hormone treatment available through every GP… not being able to medically transition left me in limbo and made me feel like the NHS really doesn’t care about me, I feel like an inconvenience’ (Participant 6).

Participant one additionally comments on not being able to receive a prescription for the hormone progesterone through the NHS. They felt this was unfair and mentions many other countries who offer gender-affirming healthcare, all of whom prescribe it.

Waiting times – the challenges of referral and treatment.

Every survey participant raised concerns over the length of time they had to wait to access gender-affirming healthcare. All felt the wait for their initial appointment at a GDC was excessive. The shortest time a participant waited, following referral, was 14 months, but this was unusual as over 75 percent of respondents waited over three years.

‘It took me 14 months to access a GIC … which felt like a long time’ (Participant 1).

‘I hated the three years wait for my first appointment’ (Participant 2).

‘…lack of support from anyone (other than my friends) in the 3 years I’ve so far had to wait’ (Participant 4).

‘The waiting times MUST be improved so that people like me do not have to wait forever just to get an appointment … 3 plus years is far too long’ (Participant 8).

For some, this long waiting time was also impacted by difficulties accessing a referral to a GDC through their GP practice. Participant 8 described being unable to secure a referral to a GDC for many months and expressed the need to move to a new location to gain a referral. Others were told to go home and think about things and make another appointment if their feeling did not change. This delay in referral added significantly to the prolonged time they waited to have an initial appointment at a GDC.

All respondents spoke about their frustration at not being able to start to medically transition by accessing gender-affirming hormones through their own GP practice. The inability to start treatment alongside the extremely long wait to receive an appointment at a GDC, was often described as ‘challenging’, and led to participants feeling invisible and experiencing poor mental health. 75 percent of the respondents described feeling low, helpless, and depressed. For participant 7, the impact was so severe that suicide was considered.

‘I felt lost as I waited, I just wanted to feel whole again’ (Participant 4).

‘I was very depressed … I was left feeling very helpless’ (Participant 8).

‘… waiting for such a long time made my mental health drop and left me feeling that I wasn’t important’ (Participant 2).

‘I waited over 3 years to be offered a first appointment at the clinic, during this time I felt low and forgotten’ (Participant 6).

… I feel the waiting time was far too long, there were some very low times during my 3 years wait, …I was so low that without having my Mum, I might not still be here’ (Participant 7).

Several participants described receiving positive, supportive, and person-centred care at a GDC. However, they also felt the wait between clinic appointments was too long, with one participant waiting over seven months to receive a date for their second appointment.

‘I have not yet received any support from the GIC as it took ages to get my first appointment (three years) and now I am still waiting for them to get back to me for my second appointment’ (Participant 8).

‘Five months later … I am yet to have a date for my second appointment, I have rung the clinic to be told that someone will be dealing with it and if I haven’t heard from them in another 2 months to ring again!’ (Participant 6).

The prolonged period of waiting to begin medical transition was of huge concern to every respondent. All participants stated they hoped trans healthcare would improve in the future, both in greatly reduced waiting times and mandatory training for GP’s on trans healthcare.

Critical Discussion

The aim of this research was to explore the lived experiences of trans adults when accessing transitional health care in England. By identifying any common negative aspects or barriers in accessing care, key messages for improving transitional healthcare, from the perspective of trans adults, can be established. Analysis of the survey data revealed three core themes. These were named ‘inconsistencies in general practice’, ‘hormones – the desire for change’ and ‘waiting times – the challenges of referral and treatment’.

Theme one ‘inconsistences in general practice’ reviews the differences in care trans adults experienced at their GP surgeries. The second theme ‘hormones – the desire for change’ explores the wishes of many trans adults to medically transition, using hormone therapy and discusses the barriers found in accessing this treatment. Lastly, the third theme ‘waiting times – the challenges of referral and treatment’ considers the consistently long waiting time to access a specialist gender service, and the impact of this wait.

Theme one ‘inconsistences in general practice’

All the survey respondents described seeking advice from their GP, when they first felt comfortable to reveal their gender identity and when requesting access to gender-affirming healthcare. Participants described differing experiences. Some experienced positive, supportive relationships with their GP, whilst others described the negative experiences of a perceived lack of care, insufficient GP knowledge, overt discrimination, and refusal to refer to a gender specialist service. This corresponds with the findings from other trans healthcare studies that were based in the United Kingdom (Harrison et al., 2020; Willis et al., 2020; Wright et al., 2021).

Positive experiences centred around the trans person feeling accepted, listened to, and supported by a GP, alongside being given a referral to a gender specialist service. Negative experiences included incidents of discriminatory behaviour, such as misgendering, incorrect use of pronouns or refusal to treat or refer a trans individual onto specialist services. Respondents who had experienced negative interactions with their GP, also described how these interactions impacted their wellbeing and often meant they avoided medical care for a significant period. This avoidance of healthcare, due to their previous negative encounter, could have contributed to the individual experiencing poor physical and mental health outcomes (Kcomt et al.,2020).

More than sixty percent of the participants had experienced negative interactions with their GP, which led to them registering with a different GP surgery. Many participants described their GPs as having poor knowledge on trans identities, trans healthcare, and pathways to access gender-affirming care. GPs lack of knowledge on trans healthcare was also found in previous studies, both in the UK and internationally (Bell & Purkey, 2019; Boyd et al., 2022; Joseph et al., 2017; Puckett et al, 2018; Willis et al., 2020; Wright et al., 2021). Three participants described positive relationships with their GP, who admitted they had no knowledge on trans healthcare, but were happy to search for current information to enable them to offer support. Although this was described as a positive experience, the time needed to research current guidance on trans healthcare and treatment pathways would have added to the time waiting to access a specialist service. This lack of knowledge in primary care could be, in part, due to the lack of clinical guidance available. The National Institute for Health and Care Excellence (NICE) and the British Association of Gender Identity Specialists have not produced any agreed evidence-based guidelines for assessment or treatment of gender dysphoria (Boyd et al., 2022). However, there are best practice articles available from organisations such as the Royal College of General Practitioners (2019), Care Quality Commission (2022), and the British Medical Association (2022).

Theme Two: ‘Hormones – the desire for change’

Hormone therapy helps a trans person achieve physical changes that align them to their trans identity. It relieves their feelings of gender dysphoria and makes the person feel more comfortable with themselves (Holden, & Shrewsbury, 2021).

All eight of the survey participants expressed a strong desire to begin taking gender affirming hormones. All respondents had discussed this desire with their own GP and had requested hormones be prescribed for them, but all eight had been unsuccessful in securing a prescription. This was an unexpected result, as previous studies had revealed people accessing gender-affirming hormones through their GP surgeries (Cundill, 2020; Willis et al., 2020; Wright et al., 2021). Furthermore, Boyd et al. (2022) had described ‘high levels of GP-initiated prescribing’ of gender affirming hormones.

The survey participants all described how their GPs had informed them they could only prescribe gender-affirming hormones, after they had been assessed at the GDC. This meant they had no option but to wait. As most participants reported initial appointments at the gender clinic were taking more than three years, many expressed ‘feeling invisible’, ‘not being cared for’ and ‘feeling stuck’. These negative feelings often led respondents to experience poor mental health, consider self-harm or possibly have suicidal ideation. Additionally, it made them more likely to undertake in risky behaviour, such as procuring gender-affirming hormones from unregulated sources online (O’Sullivan, 2020).

One participant admitted to buying gender-affirming hormones online, as they felt it was the only way available to progress. This was also seen in Shepherd & Hanckel’s (2020) study, which found 80 percent of its contributors had accessed gender-affirming hormones through a private source, whilst waiting for their first NHS gender clinic appointment.

Sourcing and buying medication online is fraught with risk as the product you receive could be counterfeit, and could therefore, contain compounds that are hazardous to one’s health or potentially be toxic (Metastasio, 2018). Additionally, many gender-affirming hormones have known side effects, which include the increased risk of cardiovascular disease, deep vein thrombosis and hormone-dependant cancers (Delgado-Ruiz, 2019). Because of these known side effects, it is recommended that trans adults are monitored by their GP, at six monthly intervals (Royal College of Psychiatrists, 2013). The NHS (2020) explicitly advise against buying medication online, stating it is ‘potentially unsafe’.

It is not clear why some GPs feel comfortable and competent to prescribe their trans patients gender-affirming hormones and some do not. Currently, there is no evidence-based treatment or monitoring guidance for gender dysphoria in primary care within the United Kingdom (Boyd et al., 2022). However, The General Medical Council (GMC) and Royal College of General Practitioners advise that a primary care GP should, in certain circumstances, provide gender-affirming hormone therapy as a ‘bridging treatment’ until the patient can be seen at a gender specialist clinic (Joseph et al., 2017). The GMC (2023) states that the following three criteria for a bridging prescription should be met:

The patient is already self-prescribing or seems highly likely to self-prescribe with hormones from an unregulated source.

The bridging prescription is intended to mitigate a risk of self-harm or suicide

The doctor has sought the advice of an experienced gender specialist and prescribes the lowest acceptable dose in the circumstances.

At least one survey participant would have met this criteria, but a bridging prescription was not offered, and the survey response gave no indication as to why this was the case. In contrast, Wright et al. (2021) describes how a person was successful in accessing a bridging prescription from their GP, whilst waiting for their first appointment at the GDC.

The criteria for GPs to offer trans adults a bridging prescription seems contradictory as a harm prevention measure, as it is only available once a person has or is likely to self-prescribe hormones from an unregulated source. By making this part of the criteria, it is possible that a person may choose to put themselves at greater risk by procuring hormones online, just to fulfil the criteria to enable them to access a bridging prescription (McCall, 2019). It is ironic that the harm prevention measure only applies when a trans person is so low they may self harm or have suicidal thoughts. Evidence has shown the risk of poor mental health and therefore self-harm is greatly increased by the excessive waiting times for a gender specialist appointment (Henderson et al., 2022; Wright et al., 2021).

Theme three ‘waiting times – the challenges of referral and treatment’

This theme highlighted the excessive waiting times a trans adult may face to access an initial appointment at an NHS specialist gender service. All the study’s participants reported waiting for long periods of time, with 75 percent waiting more than three years. This corresponds with the findings from other trans healthcare studies that were based in the United Kingdom (Boyd et al, 2022; Harrison et al., 2020; Parsons, 2021; Pucket el al., 2018; Shepherd & Hanckel, 2020; Willis et al., 2020; Wright et al., 2021). These long waiting times are at odds with the NHS constitution, which states ‘you have the right to start your consultant-led treatment within a maximum of 18 weeks from referral for non-urgent conditions’ (Department of Health and Social Care, 2022). Additionally, waiting times are impacted by the lack of specialist gender services. Currently there are only seven clinics within England which have approximately 26,000 people waiting for an initial appointment (Dyer, 2023).

Whilst these results build on existing evidence of excessive wait times to access a first appointment at a specialist gender service, they also offer insight into additional periods of waiting. Some respondents discussed substantial difficulties accessing a referral to a GDC, which negatively impacted on the time they had to wait for their first appointment, whilst others described their frustration with the length of time they had to wait between appointments at the gender clinic.

The long waiting times described by the study’s participants, coincide with findings from previous trans healthcare studies. All describe the long waiting times to be a substantial barrier in accessing gender-affirming healthcare (Davies et al., 2013; Harrison et al., 2020; Puckett et al, 2018; Shepherd & Hanckel, 2020; Willis et al., 2020; Wright et al., 2021). Furthermore, the long waiting times can significantly impact a trans person’s wellbeing (Harrison et al., 2020; Shepherd & Hanckel, 2020; Willis et al., 2020; Wright et al., 2021). All the study’s respondents expressed feelings of low mood whilst enduring the long wait for the initial gender clinic appointment. During this period of waiting, more than 75 percent of the respondents had experienced poor mental health, which included clinical depression and suicidal ideation. This aligns with previous studies from the United Kingdom, which found the long waiting times to access gender specialist services had a detrimental effect on a person’s wellbeing (Harrison et al., 2020; Henderson et al., 2022; Willis et al., 2020; Wright et al., 2021).

As the trans community often encounter stigmatisation, prejudice, and discrimination (Bachmann & Gooch, 2019; Byne et al., 2018; Hibbert et al., 2018) they are more likely than the general population to experience mental health problems, including: depression, anxiety, self-harm, and suicidal ideation (Bailey et al., 2014; NHS, 2022; Scandurra, 2017). This can only be exacerbated by the long waiting times they can endure to access a gender specialist service provided by the NHS.

Limitations

This qualitative exploration into the lived experiences of trans adults, provides unique insights into the standards of gender-affirming healthcare within the NHS in England. However, some limitations must be noted. As the data is only representative of the lived experiences of eight participants, the study’s findings might not be considered generalisable to the whole trans community within England. The terms ‘transgender’ and ‘trans’ were used for advertising for research survey participants. Upon reflection, it may have been more appropriate and inclusive to have added the term ‘gender nonconforming’, as this would acknowledge the diversity of all gender identities who sit beneath the trans umbrella. As no identifying details were requested in the research survey, it is impossible to understand whether the voices of trans adults from ethnic minority groups or across the age spectrum have been included in the research findings.

Implications for practice

The findings make it clear that the waiting times to access an initial appointment at a specialist gender clinic is far too long and this extended period of waiting negatively impacts the trans individuals’ wellbeing. The NHS needs to invest in the expansion of capacity in all gender services to ensure access is greatly improved. Additionally, training on trans identities, trans healthcare and treatment pathways must be given to all general practitioners and non-specialist physicians, to ensure they are able to provide high-quality holistic care to all patients.

Recommendations

This study adds to a small body of qualitative literature that aims to understand the lived experiences of trans individuals who choose to access gender affirming healthcare within England. Additional research should be undertaken in the other countries of the United Kingdom to better understand both positive practice and opportunities for improvements in trans healthcare nationally. Likewise, more research is needed to better understand the lived experiences of gender non-conforming adults, who were not included in the study.

Additionally, the experiences of trans adults from ethnic minority groups and across the entirety of the age spectrum was not captured in the current study and merits further investigation to ensure the voices of all trans adults can be heard.

The research findings revealed none of the participants were able to access gender-affirming hormones through their own GP practice. As these findings conflict with previous literature, more research is required to understand this anomaly.

The research also showed that there are many inconsistencies in the care that a trans individual receives within primary care. On this basis, recommendations that trans identities, trans healthcare and treatment pathways should be included in the NHS mandatory curriculum for GPs, nurses, and all associated professionals. This will ensure that all healthcare professionals are able to provide high-quality holistic care to all trans patients.

Based on the findings from both the research and the literature review, it is clear the waiting times to access a gender specialist service in England is extremely long and this period of extended waiting negatively impacts the trans individuals’ wellbeing. On this basis, the NHS should invest in the expansion of capacity in all gender services to ensure access is greatly improved, alongside implementing a strategy to support those who are currently waiting.

Conclusion

This study aimed to explore the lived experiences of adults in the trans community who choose to access transition related healthcare within England. Based on the qualitative thematic analysis conducted, it was found that trans adults often face significant barriers in accessing transition-related healthcare, which may negatively impact their wellbeing. The accounts revealed differing experiences within general practice, with descriptions of both good practice and practice that requires improvement. It highlighted the importance of improving healthcare professionals’ knowledge on trans identities, trans healthcare and treatment pathways to ensure they can provide high-quality holistic care to all trans patients.

It is clear that long waiting times when accessing a gender specialist service are of great concern. This finding is also corroborated through all the UK-based studies in the literature review. Whilst this is a complex issue, this study indicates the need for greater funding to expand the capacity in all areas of trans healthcare

Whilst this study was relatively small, it contributes knowledge to the limited but growing field of trans healthcare research within England. It also provides a basis for the further investigation around access to bridging prescriptions for gender-affirming hormones, as this study could provide no explanation why its participants could not access this form of treatment. This anomaly was contrary to other UK-based studies, where access was gained via a general practitioner.

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