Improving the integration of care for trans adults: ICTA a mixed-methods study

Experiences of trans health care

There is a limited body of existing literature that directly concerns the organisation and delivery of trans health care, with some UK-based studies. Some strands within this are relevant to the research reported here. These concern the dynamics underlying inadequate and poorly integrated care for trans people, which need to be overcome.

A first strand of literature concerns trans people’s experiences of health care in general, and the common negative experiences that lead people to delay or avoid accessing health care when they need to. A large-scale five-country survey of healthcare experiences revealed that more than half of the trans people surveyed delayed accessing health care in general, because of previous experiences of being misgendered or treated disrespectfully by clinicians, administrative staff or receptionists. 16 A qualitative study of trans individuals in Canada brings out some of the dynamics behind and consequences of such patterns. It concluded that trans adults often feel either explicitly or subtly discriminated against by health services, yet are expected to educate clinicians about transition-related matters and remain positive despite lack of recognition of their needs and everyday experiences of exclusion. 17 This was seen as linked to poorer overall health outcomes for trans people.

A second strand concerns experiences of transition-related health care. In the UK, as in many countries, trans people must go through a process of psychological evaluation, leading to a diagnosis of gender dysphoria or gender incongruence, before they can access gender-affirming treatment, such as hormone therapy or surgeries. One relatively small study of patient satisfaction ratings within an English GIC indicated high rates of satisfaction. 18 This satisfaction rating was, however, focused on the experience of the GIC itself, rather than the overall experience of transition-related care from different sources over time. A rather different picture emerges from a range of qualitative studies which bring out the difficulties and stresses that trans people face in their healthcare encounters.

In an analysis of qualitative survey data of trans users of mental health services and GICs, Ellis et al. 19 concluded that practitioners tend to be poorly informed about trans issues and the realities of trans people’s lives and that intrusive questioning and restrictive treatment pathways all contributed to actually having a negative impact on mental health and well-being, particularly in the context of the minority stress trans people experience in everyday life. A focus-group-based study of the experiences and transition-related needs of non-binary people attending a GIC concluded it was necessary to adapt GIC clinical assessment approaches to affirm rather than question a person’s gender identity and provide space for a non-binary person to explore and articulate their goals for treatment, taking account of the person’s likely pervasive experiences of transphobia and social isolation. 20

An in-depth study of the experiences of 14 trans people in Sweden concluded that they found the process of clinical evaluation needed to access gender-affirming medical treatment problematic. This was because of the length of time they had to wait and the lack of support while doing so, and clinicians appearing not to be familiar with important aspects of trans experience. Some trans people experienced themselves as paradoxically expected to take some elements of initiative with their medical transition – for example, through ordering hormones from abroad, in order to be judged by clinicians as sufficiently committed to transitioning to receive medical support. 21

A third important strand of literature concerns trans people’s experience of mental health care. A review of evidence suggests that the trans population carries a higher than average prevalence of common mental health conditions as well as suicidality. 22 Other studies indicate that the experience of receiving mainstream psychological therapies can be a difficult, unsatisfactory and even a fearful one for many trans people, often because clinicians can appear reluctant to engage with, or even recognise, a trans identity. 23,24 Therapists may imply that a trans identity is problematic, rather than focusing on the mental health difficulties that result from the transphobia to which trans people are subjected. In reaction to this, some clinicians in the UK and USA have advanced models for meeting the needs of trans clients more effectively,25–27 within a framework of affirming trans identities, while recognising the impact of minority stigma.

A further strand of literature relevant to this study critiques established models for accessing gender-affirming treatment through a process of psychological diagnosis. Several authors describe the emergence of clinical practice based on an informed consent model (ICM). 28,29 Ashley et al. 28 identify a variety of ICMs. The common element is that the focus of assessment shifts from diagnosis of gender dysphoria to that of clarifying treatment goals and ensuring the trans person concerned has a full understanding of the likely benefits and the medical risks, as well as the capacity to give their informed consent.

We did not study an example of an ICM in the research reported here. However, as reported in Chapter 4, the future desirability of ICMs emerged frequently during the interviews with trans people. In later chapters, we will explore the relevance of literature on ICMs to our findings on improving the integration of care for trans adults.

Wider literature on person-centred, co-ordinated care

The research reported here also builds on wider health policy and organisational studies literature to enable critical evaluation and learning from attempts to improve the integration of care for trans adults.

A first area concerns co-ordinated or integrated care. These closely related concepts have many different definitions referring to a wide variety of initiatives in designing and delivering health and social care (HSC) services. 30 However, most commentators agree on some core principles, which reflect the different perspectives of policy-makers, commissioners, service managers, clinicians and service users or patients. In any particular initiative to provide integrated care, based on the work of Lloyd and Wait,31 the following concerns are reflected to a greater or lesser extent:

• Service users requiring several distinct branches of medical or social care benefit from experiencing seamless or ‘person-centred’ care, rather than a fragmented experience of separate attendances at different services, each lacking a full understanding of what others are doing.

• Clinicians and other service professionals often want to improve their interdisciplinary co-ordination around cases, improving outcomes and preventing errors.

• Managers want to improve the efficiency of services, removing duplication – for example, in the form of similar clinical or administrative work being carried out with the same person in different places.

• Commissioners or policy-makers aspire to align the incentives of different services focusing on the needs of the same group of people, provide a more holistic system of care and improve clarity as to who is accountable for achieving health outcomes.

What these principles mean in practice, however, and the processes, methods and tools suitable for achieving them, depend greatly on context. 30,32

Second, there are strong connections between co-ordinated or integrated care and innovations in ‘person-centred’ approaches to health care, as well as user involvement in the shaping and delivery of care. 33 A large body of evidence indicates that improved patient satisfaction and clinical outcomes are strongly related to a person-centred and co-ordinated approach to health care. 34 Clear and full communication of clinical options to service users or patients, their involvement in decisions about their care and continuity in the clinical and support personnel working with them all have positive effects. A related body of work elaborates the social, clinical and resource effectiveness of users being involved, either as individuals or collectively, in the design and delivery of the services they need. 35 Ideas of user-led approaches to service design are relevant to understanding innovations in health services for trans people, given the role of third-sector organisations in advocating for and involving members of trans communities in shaping services.

Overall, we take from the literature on healthcare innovation the notion of person-centred, co-ordinated care as a useful conceptual guide for assessing the acceptability of current services for trans adults. These ideas are equally relevant for assessing progress resulting from initiatives to improve integration of care.

Research team assumptions and standpoints

Team members shared a recognition that the most important interests to be served by the project were those of trans people and trans communities. They also held a commitment to advancing the rights of trans people in society and within healthcare systems, given that most health care internationally has historically failed to see trans identities as part of normal human diversity. For most of the last century trans identities were either ignored, regarded as deviant or treated as a form of mental illness. 38 In the current century, medical frameworks no longer classify being trans as a mental health condition,9 but most institutions in society enact cisnormativity in terms of expecting people to be cisgender, and are often harmfully transphobic as a result. 39 This may take a less overt form, such as treating trans people as outside of social norms and not deserving of recognition or welcome. Frequently, however, transphobia takes the form of overt and harmful aggression, including outright denial that a trans person’s gender identity is different to that assigned at birth.

A related shared perspective was that trans people carry unique experience and knowledge of how they are marginalised in a variety of ways within current UK society, and how this affects their lives, including their encounters with health services. The accounts of trans people are thus a vital source of insight and analysis into how health services function and affect them, rather than mere sources of data. Hence our approach to interviewing trans people sought to bring out not only their experiences of health care, but also their views on what had given rise to these experiences and how care could be improved in the future.

The active and effective involvement of trans people in roles other than informants was also a central element in seeking integrity in the research process. Early meetings of the research team acknowledged that its senior positions were all filled by cis academics with permanent university posts, with trans researchers and PPI group members on various kinds of fixed-term contract. The involvement of trans people in the PPI group, Steering group and Advisory Group in the analysis and interpretation of data was intended to give voice to a variety of trans perspectives on the interpretation of research data, while keeping in sight the overall goal of understanding how to improve health services for trans people and communities. We attempted to address the structural imbalance in terms of the roles of cis and trans team members by maintaining a culture of circulating drafts of outputs and responding to all comments made. In the final chapter of this report, we reflect on the difficulties that emerged, however, in achieving meaningful trans participation – trans colleagues were often placed in the position of commenting on work done rather than collaboratively shaping it from an earlier stage.

A final perspective central to the research process concerned researchers being reflexively aware of their assumptions and experiences of trans health care so that they were both open to and critically aware of what was emerging from data being collected or analysed. While the harmful impact of cisnormativity and transphobia is likely to be found in trans people’s accounts of their experience of health services, researchers needed to be open to identifying care practices that break with previous norms and understand how these have improved service-user experience. At the same time, researchers considered critically ways in which cisnormative assumptions remained present and could still have harmful consequences. They considered how far trans people’s more positive accounts of services may have been shaped by their awareness and stoical acceptance of poor care provided by many NHS services, as concluded by the House of Commons report already referred to. Trans people may be understood as sometimes ‘settling’ for questionable aspects of care.

While it is possible to set out perspectives shared across the team, there were also recurrent interpretative tensions. These arose in particular from gaps in the understanding of cis members of the team as to the wider history and context of trans health care. Such tensions were often about the extent to which a new service model should be seen as beneficial, because alongside a helpful aspect it preserved practices that compromised the dignity or rights of trans people. To an extent, such tensions were resolved through productive debate. While we have taken a clear stance on many conclusions and recommendations in this report, our interpretations of data in some areas remain unresolved, as is apparent from the PPI lead statement included in this report. We do not seek to gloss over such unresolved issues and also do not see them as undermining the scientific quality of our work. They are an inevitable aspect of researching a contested and politicised field such as trans health care.

Prevalence of mental health difficulties

The original ICTA research plan did not call for a case study focused on mental health. The decision to conduct one came about as a result of the researchers noticing the high levels of mental health disclosures among the participants. This suggested the value of a focus on trans adults’ experiences of mental health and mental health treatment.

The responses to the survey used to recruit interviewees showed that, from a total sample of 2055:

• 23% (481) had accessed/were currently accessing transition-related psychotherapeutic support, of which:

  • 262 or 54% accessed private psychotherapy

  • 158 or 33% accessed NHS psychological therapies

  • 61 or 13% accessed both NHS and private psychotherapy

• 11% (232) reported being on a waiting list for such support

• 21% (431) would have liked to be able to access such support.

In other words, half the survey respondents had accessed or wanted to access psychotherapy support for their transition journey.

From the same sample, in the 2 years prior to completing the survey:

• 26% (535) had accessed/were currently accessing NHS psychotherapeutic services for non-transition-related reasons.

• 28% (585) had accessed/were currently accessing third-sector/private psychotherapy for non-transition-related reasons.

• 18% (376) have been under the care of Community Mental Health Teams in the previous 2 years.

These data suggest a high level of felt need for psychotherapeutic support in this population (over one in four participants) but also a high level of engagement with community mental health services, given estimates of population average caseloads for adult community care of 100,000 people of 1632 (1.6%) according to an NHS report for 2019–20. 50 The finding of high levels of mental health felt need and service usage in this population corresponds with prior research. 19,51

The interview data analysed below resulted from 74 interviews with trans people, all included because they talked about experiencing mental health difficulties which included commonly reported experiences of anxiety and/or depression as well as reports of having been suicidal in the past. Additionally, participants reported mental health difficulties including personality disorders, obsessive compulsive disorder, bipolar depression, and trauma-related mental health concerns. A number of participants reported neurodiversity (e.g. autism, dyslexia and dyspraxia).

Non-healthcare-related contributors to mental health

An initial analysis was conducted to examine what the interview data suggest participants understand or perceive as non-healthcare-related contributors (positive or negative) to their mental health. The key finding was that a variety of contextual factors create significant mental health burden for trans people, including loss of relationships and negative work experiences as a result of transitioning, threat of anti-trans violence and experience of microaggressions, and the inter/intrapersonal impacts of living in a trans-hostile society. One participant commented, ‘I mean like in the 80s your white hetero males used to throw stones at me, threw bottles at me, call me a poof all that sort of thing. I got beaten up a couple of times.’ There were also accounts of violence that were more recent, such as an experience of being physically attacked in a workspace. One participant talked about experiencing ‘stones (thrown) through the window’ of their house and being harassed by a group of teenagers on the street outside it.

This analysis also explored how participants attributed their mental health difficulties. Some attributed these to gender incongruence, but it was more common that they talked about mental health difficulties as linked to not transitioning and mental health improvements to transitioning:

My mental health is the bit that I’ve struggled with, and it’s been a definite benefit to that … for me transition has been only beneficial from a health perspective. Because if we’re talking about it, is ill health limiting then the thing that was limiting me was my mental health, which has improved.

Overall, the findings accord with a contextual or social understanding of the higher rates of mental health difficulties within trans populations. This understanding aligns with the ‘minority stress model’,52 a theoretical and explanatory framework that suggests that mental health disparities for trans people are largely explained by the stressors caused by living in a transphobic social context, such as harassment, discrimination and targeted violence. 11

Experiences of general health care

A second analysis focused on how participants understood relationships between their mental health and their experiences of general (neither transition-related nor mental health-related) health care. ICTA participants’ accounts suggested that positive experiences of health care were associated with encounters that were free of transphobic microaggressions, and supportive of trans patients’ medical transition. Conversely, negative experiences of health care were associated with experience of transphobic microaggressions, which are known to damage well-being. 44,53,54 Examples of microaggressions included being misgendered, deadnamed, subject to cisnormative or transphobic assumptions (e.g. about sexual history), health professionals being overly curious/questioning about trans status/experience when transness is not medically relevant, and medical staff making presumptions about trans health/identity that effectively dismiss a trans person’s knowledge of themselves. To exemplify this, one participant talked about their distress at being deadnamed:

I know walking into A&E that they’ve looked at my name, they’ve looked at my records, they’ve got me down as male and Mr [name] on the system and yet the staff have turned around and said to a nurse, oh this lady over here. And I’m like you have Mr [name] in front of you on the screen, you literally have it in front of you on the screen with a male marker, I’d already confirmed that that’s me, and yet you’ve still misgendered me and that’s [sigh] – I find those sort of situations difficult.

Participants also talked about their experiences of not receiving appropriate or (in the patient’s view) satisfactory health care, which contributed to stress and hence negative mental health. Often this was due to healthcare professionals’ lack of understanding of trans healthcare needs – for example, in one account a GP making a medically inappropriate and (for the patient) very damaging decision to stop a participant’s HRT. There were also accounts of non-transition specialist health services simply not providing health care to trans patients on the basis that they did not have a protocol for them. One participant described having urgent surgery cancelled because:

The surgeon said that they had no policy on how to treat transgender patients and then after time I was then informed that he would no longer be dealing with me and he would be passing me on to another hospital.

This person was subsequently treated without issue by another service.

The impact of repeated negative experiences of health care was a wary or anxious attitude towards seeking medical care, which is likely to contribute to health inequalities for this population, and might lead to self-exclusion from healthcare settings. Overall, there was evidence of iatrogenic harm in general healthcare settings that was trans-specific, that is beyond the level of iatrogenic harm experienced in the general population. Prominent issues concerned healthcare professionals’ apparent lack of training or cultural competence in working with trans patients, and transphobia in the form of doubting and undermining trans identity.

Experiences of transition-related health care

The third analysis examined how participants understood relationships between their mental health and their experiences of transition-related (GIC) health care. The accounts of waiting to access medical transition health care clearly suggest that a multiyear waiting list has a significant and detrimental impact on trans people’s mental health. As one participant said: ‘Waiting with gender dysphoria that long can be crippling. As I’m sure you’ve heard from others, it’s crippling.’ Another participant stated:

[The waiting list]’s so absolutely soul destroying for everybody going through it. It takes so long and everyone is so emotionally fed up of it and exhausted by the whole thing. That even if you consider yourself to be pretty resilient and if you think of yourself as a resilient person and that your mental health is strong it still gets exhausting and the wait is just interminable.

This finding is in line with other research on the negative impact of waiting to access health care. 55,56

Participants’ accounts of the experience of diagnosis within GICs suggest that for some the experience is positive and validating. For others, however, the experience is intrusive, uncomfortable/distressing and potentially destabilising or even re-traumatising, where patients were made to go over historic trauma without a trauma-informed support structure in place to manage potential risk. To exemplify, one participant described the questions they were asked as invasive and the experience as ‘deeply humiliating’:

At the beginning, they want to know everything. They want to know all about your masturbatory history and all that kind of stuff. That was deeply humiliating. That happened in the first two sessions that I had there before they put me onto the doctor to start me on hormones and stuff. I mean I don’t have a problem talking about this kind of stuff now, but it felt very invasive at the time.

Another participant talked about the impact of questions that were experienced as transphobic:

The psychiatrist just bluntly asked something like, ‘do you think you’re trans because you were abused as a child?’ I was just looking at him like completely baffled. You’re supposed to be a doctor and you’re saying those words? You’re just repeating what the TERFs are saying? I just couldn’t grasp it.

The data also at times point to the possibility of intersectional issues such as age, race, class, weight, mental health, disability, neurodiversity and gender factors (for trans women and non-binary people) within the diagnostic process being implicated in worse patient outcomes/satisfaction with treatment (c.f. Riggs et al. ). 38

The accounts also suggest that the rationale for diagnosis of gender dysphoria or the diagnostic processes involved in sign-off for surgery is rejected by many trans people and that GIC appointments are experienced as contexts in which trans patients have to ‘prove’ trans identity, and in which there is inconsistency from clinician to clinician. Exemplar quotes include:

If I was being less kind I’d say [the screening appointment is about] making sure you were trans enough to be on the waiting list … They just want to make sure that you’re – in heavy air quotes – ‘really trans’.

I’m having to prove this [gender identity] to higher-grade people and continually do that where the one thing that has been firm and fixed in my life has been my gender identity.

The accounts suggest that trans people who feel like they have to ‘prove’ their trans identity experience GIC health care as subjecting them to a stream of microaggressions since these assessment processes are intrinsically questioning/doubting of trans people’s knowledge of themselves and undermining of their identities. In this way, the diagnostic assessment processes that are central to GIC pathways are, as evidenced by the accounts of ICTA participants, clearly contributing to the mental health burden of some trans people. This is iatrogenic harm, and ties into the broader transphobic context of a climate of doubt over the validity of trans identities, Bettcher’s ‘denial of authenticity’ and undermining of ‘first-person authority’. 53 From the accounts, it appears there is a lack of understanding and acknowledgement of the harm caused to trans people by waiting for and being denied trans-related health care. The accounts also suggest a lack of awareness of the power imbalance of predominantly cis clinicians gatekeeping access to trans health care.

It should be noted that the accounts of negative experience of diagnosis prototypically involved depiction of an assessment process that is adversarial, aggressive or hostile, involving a sharp power differential between patient and doctor and an understanding of the trans patient as untrustworthy and/or lacking in credibility. Conversely, positive experiences of diagnosis involve encounters described as caring, nurturing, collaborative and affirming, where the power differential is not remarked on and where the trans patient experiences themself as respected and listened to. The contrast appears to be of a climate of power-with, seeing the trans patient as the expert on themself to be collaborated with, and power-over, with the trans person seen in an infantalising way, to be treated adversarially, doubted and caught out.

Many participants expressed doubt about the legitimacy of the gender dysphoria diagnosis; this is important given the core finding that a diagnostic stance that involves doubting that trans people are the experts on their own gender identity is detrimental to the mental health of trans people.

Experiences of mental health services

The fourth analysis examined how participants understood relationships between their mental health and their experiences of mental health services including counselling. Many of the participants talked about how access to counselling/mental health support during transition was or would be very helpful; participants also talked about how hard it was to access transition-related counselling support.

The data on participants’ experiences of mental health systems and professionals (such as psychiatrists and psychiatric nurses) included accounts of positive experiences. However, there were also some notable accounts of transphobic treatment. The transphobia was sometimes systemic – for example, gendered wards created significant issues in some accounts – but the accounts also contained quite shocking examples of transphobia that were expressed interpersonally by mental health professionals. For example:

When I was showering or using the bathroom, because I was on constant observations when I first got there, they would watch me shower and they didn’t close the door. And because I was listed as male, I had male nurses watching me. They did not know that I was trans, and this was before I had my top surgery. So they were basically just watching me shower and looking me up and down, really confused, giving me dirty looks while I was showering, whilst I was being through it. I remember one time I had a shower and sat on the floor of my room. I had a pair of nurses outside my room arguing over whether I was a boy or a girl. And then eventually they were just, ‘What is it? What?’

These experiences of having trans identity dismissed, challenged and not believed, and having the views and preferences of trans patients ignored or dismissed, are echoed in other accounts. Yet the starkness of the accounts perhaps illustrates the intersectional impact of being a person who is both trans and understood within a system as having mental illness – being seen as even less credible or trustworthy than a person who is either trans or mentally ill.

In terms of accounts of therapeutic treatment, there were both positive and negative experiences. As illustrated in Table 4, these were broadly complementary:

Summary of mental health experiences

The analysis of ICTA survey responses from participants who reported experience of mental health difficulties echoes prior research. This is a population that experiences a high mental health burden. Further, the analysis of the interviews indicates that this burden is directly related to trans people’s experiences of trans-related stigma and microaggressions. Participants’ reports of experiences of health care shows that trans people are quite regularly experiencing in healthcare settings the same transphobia and microaggressions as in other social contexts, and that when this happens the outcome is poorer experience of health care and consequent mistrust of healthcare providers. Both of these contribute to poorer mental health, and, probably, health inequalities for this population. Research attributing poorer maternal and infant health outcomes for non-white patient groups to racism within maternity services57–60 provides a related example of the significant negative health outcomes of societal prejudice enacted systemically or interpersonally in healthcare settings.

Analysis of participant reports of GIC healthcare experiences strongly suggests that prejudice against trans people is also experienced by some participants in the very healthcare setting dedicated to providing specialised health care for this population, with reported negative impacts on the mental health of patients. By participant accounts, when undergoing a gender dysphoria diagnosis is experienced as a process of having to prove trans identity, diagnosis is experienced as enacting trans microaggressions, something which, in participant accounts, creates negative mental health impact. The multiyear waiting times to access GIC services was experienced as another systemic expression of transphobia which participants reported as creating significant mental health burden.

Analysis of experiences of mental health treatment by participants suggest that trans people are also experiencing significant transphobia in mental health settings (e.g. psychiatric hospitals and community mental health clinics) and within counselling/psychological services, those in the NHS, in third-sector (charity) and educational settings, and within paid/private counselling and psychotherapy. The accounts of good experiences of mental health and counselling treatment indicate that service satisfaction is linked with services being (broadly) trans accepting, trans knowledgeable and avoiding enacting transphobia and microaggressions.

Across all services, but in particular GIC services, participant accounts suggest that for a significant number of trans people NHS health care is creating iatrogenic harm – by exposing them to trans prejudice and trans microaggressions and consequently further increasing the mental health burden of this population.

Accessing services

Outpatient services

Surgery later in life

As with HRT, there are additional risks for older people undergoing surgery, risks which factored into participant’s decision-making processes. In addition to surgical risks, some participants discussed not wanting to bother with certain surgeries, such as lower surgery, because of their age (rationales included both worry about medical complications related to age and, for some, a sense that their age meant that more medically complex forms of lower surgery were not ‘worth it’). While surgery is not right for all older people, it is important that older trans people have access to good information in order to make decisions about their care and that they are able to access the care options that are best for them as individuals.

Historic transition

Historic transitioners, people who accessed medical transition many years ago, will have faced an additional barrier to accessing transition-related health care. The previous model for GIC referrals was for a GP to refer an individual to a psychologist who would complete an assessment and then decide whether or not to refer the person to the GIC. Participants reported that this added an additional delay as well as a possible roadblock if the psychologist decided not to refer.

Some such ICTA participants highlighted the issues having been discharged from their GIC created in accessing ongoing hormone prescriptions. Barriers to ongoing health care and the risks attached to its removal – for example, of osteoporosis – point to the lack of integration of trans health care in mainstream medicine and the health inequalities this creates.

Transitioning later in life

Transitioning later in life has its own unique set of challenges. Older trans people face difficulties accessing transition-related health care, as discussed above, but participants who transitioned later in life described additional social barriers. Many of these participants did not know about transness earlier in their life and by the time they did typically had family and work pressures which kept them in the closet. Several participants described having some understanding of their gender at a younger age but not feeling able to come out due to prevailing societal stigma, lack of information and family and career pressures, among other reasons.

While not everyone did express regret or negative feelings about transitioning later, some wished they had been younger and therefore at lower risk for various medical interventions. Some also felt that the changes they experienced on hormones had been limited by their age, such as the 68-year-old participant who stated, ‘If I’d done this when I was a lot younger then my facial features would have changed, they would have softened more. Given my age, the hormones they’ve got an uphill task.’ Other participants expressed concern that not transitioning earlier meant they were not ‘really trans’ or were not ‘trans enough’; as one 51-year-old explained:

I felt, one of the things I was worried about is transitioning being old. I got all tied up in this ‘am I trans enough, if I’d have been really bothered, I should have done this when I was 18’, but when I was 18 trans men didn’t exist.

Of course, it was possible to transition in the early to mid-twentieth century and indeed people did, but many participants lacked access to critical information and the safety and support to do so until later in life, which may relate to prevailing attitudes at the time.

Participants sometimes cited upsides or silver linings to later transitions. Even those who had some regret around not transitioning earlier discussed feeling better prepared and more sure of themselves during the process as a result of their age. Having support systems in place and knowing where to get information helped many older participants in their transition. Those older participants who were retired when they transitioned explained how that was beneficial; they talked about how they did not have to worry about coming out at work or taking time off for medical appointments or surgical recovery (although that needs to be understood in the context of participants’ perception that coming out at work and taking time off would have been treated as a problem). Having children grown up and out of the house and other similar family pressures being removed were also cited as catalysts for transitioning later in life. While it is impossible to know what different choices participants might have made were there no transphobia in society or barriers to coming out as trans, the importance of people being able to transition at any age and at their own pace is a key finding from this subsample analysis.

Frequency of healthcare experiences

In general, disabled and chronically ill participants had frequent interactions with medical professionals for transition-related care, care related to their condition(s), and general health care. While there were certainly positive experiences, this report will largely discuss the challenges as that is what most participants focused on in describing their experiences. Frequent encounters with medical professionals, common for disabled and chronically ill people, put them in more situations where they might experience poor health care as a result of medical transphobia (and its intersection with other forms of discrimination including ableism, racism and fatphobia).

Experiences of general health care

Accessing health care that is gendered in any way is one of the challenges of this group. Many hospitals have gender-segregated wards so being put on the appropriate ward or there not being any appropriate ward were concerns for participants. For example, one woman described being put in a side room instead of on the women’s ward, where she felt ‘like a naughty child being put out of the way’. Even though this individual was eventually moved to the women’s ward, she continued to be misgendered by hospital staff.

The disabled and chronically ill participants’ experiences of general health care were further shaped, in many cases, by medical trauma. Participants typically reported a history of numerous and sometimes traumatic encounters with medical professionals which in some cases, they said, left them reluctant to seek care. When encountering poor care, many participants discussed filing complaints. However, it is important to note that going through complaints procedures is time- and energy-intensive and can be emotionally challenging for what participants said often amounted to little or no results.

Experiences of trans-specific health care

Hormone regimes can be impacted by various physical health conditions. Different hormone levels may be required depending on individual need; however, knowing what those needs are depends upon the patient’s GP or GIC having an understanding of their condition(s) and/or their specialist doctors having an understanding of HRT. Different types of hormones may also be indicated – for example, some participants in this group discussed going on oestrogen patches instead of pills, or testosterone gel instead of injections, due to their medical conditions. Hormone regimes can also have a positive impact on a person’s general health, such as one participant who experienced relief from their chronic migraines after starting oestrogen.

While across the ICTA sample people talked about difficulties with their GPs refusing or being reluctant to refer to a GIC, this seemed to be a particular issue for this group, with participants describing being referred to other services instead. One participant, who had their GIC referral initially refused because their doctor was insistent that they only needed trauma therapy, had another roadblock put up when they sought out another doctor, this time with the doctor only referring them to the GIC on the condition that they also attend the weight clinic. The poor treatment from the doctor in this case was offset by the positive experience this participant had at the weight clinic, but the example still illustrates the additional healthcare barriers experienced by some trans patients as a result of weight stigma. Consultations with trans service users involved in the ICTA project revealed further experiences of facing extra barriers to a necessary healthcare referral due to weight, and of persistent fatphobia that trans (and particularly disabled/chronically ill) people face.

Another source of delays for this group happened once people reached the GIC. There are typically long waits between the two or more appointments involved in a GIC assessment process. For this group, often seen as more medically complex, clinicians can decide that additional appointments are required before an individual can access hormones or surgical referrals. Once those referrals are given, they are only valid for 1 year, even though many surgeons have a waiting list that is more than 1 year. One participant, who had his lower surgery delayed due to a chronic medical condition, described his experience of trying to get his referral renewed on a phone appointment. The clinician made him revisit old trauma that was not relevant to renewing his referral, sent the details of these disclosures to clinicians in other organisations who did not need this information (including some who were no longer providing this individual with care), and after all of that failed to renew the surgical referral. Not only was this ICTA participant not able to access the care he required in this instance, but he was retraumatised and there was an unethical breach of patient privacy.

Service-user agency in management of care

While not exclusive to this group, disabled and chronically ill participants commonly showed a high level of (necessary) agency in the management of their health care as well as a great deal of expertise and medical literacy. As one participant said:

So I literally went to my GP with a list of information for them, so I actually did their job for them, slammed it on their desk and said ‘Right refer me now unless you want a dead body in 48 hours.’ So I was really, so yeah at this point I then got referred, it took me about I think eight months to get that referral through. I then got, I did a few trips up to the joyous [city] and got sat in front of stuffy, uptight, inappropriate men asking me stupid questions that weren’t really relevant about how do I masturbate for example.

Another participant, who was seeing an endocrinologist to investigate the basis of her intersex traits, had a different and more problematic experience of agency. She recounted how her doctor warned her that pursuing an investigation into her intersex traits would delay her access to transition-related health care. While this participant was given choices around managing her own care, she had to sacrifice accessing one type of care for another. Yet another participant took control of her care by ensuring she was not discharged from the gender clinic after she had finished accessing interventions from them. Her diabetes means that her hormone monitoring is slightly more complex, which is one reason she was more comfortable staying under the care of the GIC.

While this was (again) not exclusive to disabled and/or chronically ill participants, the high number of medical interactions experienced by this group highlights the common experience of lack of communication between various medical services. Primary care, specialist care and gender care are all interacting for many of these participants, and it was clear from participant reports that the lack of integration between them acts to exacerbate their health issues. Even when service users are able to take up agency and influence their own care, addressing some of the fragmented decision-making they encountered, this is not always an empowering experience. Some participants expressed that they wished they had more support while navigating health care, particularly with exploring their gender and what, if any, transition steps they may wish to take before entering gender services.

Absence of care

As we have indicated, there were instances of complete failure to provide care. For many disabled and/or chronically ill participants, this was directly linked to their condition(s). For example, one participant described her decision-making process around vaginoplasty as someone with inflammatory bowel disease. There is a type of procedure that does not use a colon graft which would be ideal for her; however, that procedure is not currently available on the NHS. This greatly limits her access to health care, due to the inflexibility of what is available. Other participants failed to even get referred to the GIC, as one person said, ‘Well, if I hadn’t have backed down, if I hadn’t have got ill, then maybe I would have pushed further about GIC.’ This participant was denied care but was too ill to pursue it further.

Another barrier for disabled/chronically ill trans people was navigating multiple doctors and specialist services. In addition to not being able to access a GIC and avoiding the GIC because of the admin burden, others, like this participant, avoided the GIC out of fear: ‘Yeah I would say I’ve probably avoided the gender clinics. Like because I don’t want to deal with it. Not because I think it’ll be bad necessarily but just out of fear.’

Another participant described his experience of a failure of care in great detail. He was under the care of an anal surgery team for complications from an assault and at the same time also seeking out lower surgery. However, the anal surgeon’s lack of knowledge of transition-related health care had become a barrier in accessing both surgeries. A complete lack of communication between the GIC, the lower surgery team, and this patient’s other surgical team meant his care had ground to a halt. This participant told his medical teams he was ready to go ahead with the lower surgery and accept the possible health ramifications, but he still ran into delays, including several referrals expiring and having to be renewed with further invasive appointments at the GIC. At the time of his interview this participant was still stuck in the cycle of managing the stringent requirements of various services and had not yet been able to access any of the required care. His experience appears to have shown him that he can be only one thing to the NHS, either trans or chronically ill, and that he certainly cannot be trans and chronically ill in more than one way.

This patient’s experience of a healthcare system that has an apparent inability to treat him as a whole person with various complex healthcare needs exemplifies the lack of person-centred and co-ordinated care predominantly experienced within this subsample. This patient’s experience also speaks to the ways in which being trans can be a barrier to receiving other necessary care, and being disabled and/or chronically ill can be a barrier to receiving trans health care, in this case leaving the patient with no care at all, with all the potential consequences to his physical and mental well-being. Finally, this example also points to a lack of cultural competence around trans people, a theme that particularly impacts this subsample, although reiterated many times elsewhere in this research, speaking to a structural problem of transphobia within healthcare systems.

Background and sample

Studies have shown enduring links between education level, socioeconomic status and health,45,71–73 with adults with higher educational attainment and higher socioeconomic status having better health and longevity. 74 A number of explanatory theories have been investigated to explain this. First, such health inequalities have been attributed to lack of social and financial capital. 75,76 Second, areas of deprivation may have lower coverage of clinical health services and less availability of health-promoting/supporting services. 77–79 Third, forms of social and cultural support associated with working-class sociality and community are rarely promoted or utilised at an institutional level. 80 Thus, health inequality associated with education and socioeconomic status are supposed to emanate from lack of social cohesion and ingrained intergenerational deprivation. Although these are complex and intersectional relationships, there is no reason to suppose that education and socioeconomic status do not similarly influence the health of sexual and gender minorities. 81,82

Accordingly, for this subsample, we set out to recruit interview respondents who reported low educational qualifications, low income and/or the experience of struggling significantly on their income. This section is based on an analysis of interviews with 23 people who reported education that stopped after the age of 16 (15 participants) and/or reported that they were ‘really struggling on present income’ (9 people). A further six people in this group reported that they were ‘struggling on their present income’ (e.g. experiencing difficulty but not ‘really struggling’).

Barriers to accessing general identity clinic care

Income, employment and housing precarity and benefit dependency interacted with people’s domestic and intimate contexts to present barriers to accessing gender-related care. For many, limited employment opportunities, lifelong income precarity or being employed in gendered occupations meant that the life changes associated with transitioning (such as dissolution of relationships or changes in job) were not as feasible as they may have been for others. The following respondent reported how a work context that she experienced as sexist and assumed would be transphobic coincided with a lack of employment opportunities elsewhere to inhibit her in exploring her gender experience.

I worked for the Navy and I worked on submarines and I was in an environment that needed, well it was a very macho environment, but there were women there and things. Because we had a couple of women that were the first apprentices, that were the first female apprentices that were in our area as well, so they were, it was starting to change, the environment; however, the work that I was doing needed security clearance and bits and pieces. And effectively I started getting involved into a bubble that there was no way that I could afford, if I wanted to keep my career, to be found out. So things had to be pushed and kept really secret.

Precarity also made it difficult to leave relationships that inhibited the pursual of gender-related care, even when those relationships were characterised by anti-trans violence. The following respondent had to move in with their biological family after leaving their spouse.

… a huge stressor was being left economically completely vulnerable. Going from having good regular income from [former partner] to having nothing and then being dependent on my parents. I didn’t have the wherewithal to access the benefit system, which I’m finally accessing now. But yeah, I was dependent on my parents for money and they used that as a quid pro quo to basically endure a weekly transphobic rant that looked like the comment section on Mumsnet […] And so I then went through all the hoops and got on T with [clinical provider] but unfortunately, there’s been a lot of stuff going on in my life outside health care. […] In the end I sought out the help from a domestic violence charity and they said look, you know, we’ve done this assessment, the statistics say that if you stay there you’ll be dead in six months, so you’ll have to go. […] and so I was put into homeless hostels and this was week one or week two on T because the abuse at home got worse when I started T.

In the context of financial precarity, the need to combine paid work with care of others is common. The following respondent described how they could not attend to their gender-transition needs until the person they cared for had died.

I had to work night shifts and then I had to care for [mother] during the day and so that’s why I was in that position. Now, eventually of course I lost my mum and that was the only thing, because I’d retired from work […] so in the end I decided, ‘well, I’ve done everything for everybody else, I think it’s time I did something for me now’ …

Paying for care

This study collected many instances of people accessing aspects of care privately (private hormone prescriptions, mental health treatments, hair removal, etc.). However, the widespread experience that clinical gender transition will inevitably entail personal financial expenditure makes what should be standard care, free at the point of need, more aspiration than reality for those on the lowest incomes.

[Any form of self-funded care] is completely out of the question for me unfortunately. I’ve been, I’ve never had a real job […] so, I wouldn’t be able to get loans and stuff. I wouldn’t be able to, I’m on PIP, I’m on Personal Independence Payments and on ESA. And I’ve always been on one form or another. Before I was on my own DLA and stuff.

Moreover, the experience of care is profoundly affected by income precarity and low income. After waiting several years for their initial appointment, the following respondent found they could not afford to travel.

… but I couldn’t get [to my first appointment] because while they do give you fuel money for your visits if you live out of a certain amount of area, I had to have fuel in the first place to get there, to then get a refund and I didn’t have it. So I wrote to them by e-mail and said, look I’m really sorry but I just don’t have the fuel to get there and while I appreciate you do give me fuel money I still have to have fuel in the first place, so can I rearrange the appointment? I didn’t even get a reply …

Others, particularly disabled participants, described having to depend on friends or charity for transport to their appointments. The geographic distance between gender clinics is relevant to this discussion, illustrating one consequence of trans health care being centralised into specialist services rather than integrated into local healthcare services.

Where standard NHS provision is absent or inadequate to meet an individual’s health needs or where waiting lists means that needs go unmet, those on low incomes simply cannot afford to make up even modest shortfalls.

… you can’t get NHS funding to get facial hair removal until you’ve got a diagnosis. Now if you’re looking at the gender clinics at the moment with the waiting list and then the wait to see the doctor, to get a diagnosis […] It’s only at that point when the NHS may give you a limited budget to do facial hair removal. You’ve had to struggle for five years walking around with a beard – I’ve still got a beard, mine’s never going to go because I’m a pensioner and I cannot afford to get rid of it […] The electrolysis for example, I’ve got £1,500 at about £60 an hour [provided by the NHS]. So what’s that work out? … About 25 hours’ worth of treatment. I was quoted by a friend who was an electrologist that it was 300 to 400 hours I would need to do my face […] And the fact is, I’d have to pay for it. I can’t afford as a pensioner to pay for more than that.

For those who could periodically afford private care, loss of care associated with income precarity could have serious consequences to health and care.

And [private provider] got really nasty with me and they were like ‘well if you don’t pay we’re going to kick you out of the clinic’, and I was like well ‘OK like I guess that’s that then’. So yeah they kicked me out the clinic. They knew I was homeless as well, they didn’t give a crap.

This was also the case with accessing hormones. For many people, starting hormone therapy had an immensely helpful impact on their mental health, often relieving serious symptoms of dysphoria related to gender incongruence (as already noted earlier in this chapter under People with mental health concerns or conditions). Within this context the need to commence hormone treatments becomes urgent, not only because it often commences a clinical transition journey, but as a mental health intervention in its own right. The following respondent was buying their hormones, but had to discontinue this due to money issues:

… the way that the gender identity services decide whether or not you should have hormones is so very long and so very protracted that I was forced to buy [hormones] because they made me feel both physically and mentally better. So my mental health is also deteriorating because I haven’t had any oestrogen or antiandrogens or anything since about March. I’m holding on literally by the skin of my fingernails to my sanity. My skin and my features are returning back to how they were pre-hormones.

Finally, people on low income were disproportionately affected when NHS Trusts made changes to what they would pay for or when coverage differed from each other. Thus, some respondents reported going without care that others in nearby areas were receiving while others reported that cutbacks meant that treatments they relied on to alleviate the side effects of their gender-transition treatments were no longer available.

Gender identity clinics’ processes

Although strong concerns were expressed across the entire sample around inflexible bureaucratic procedures in many GIC clinics, respondents in this group reported particular concerns. We have seen already how financial precarity can place significant barriers to being able to attend GIC appointments promptly. Moreover, those on low income or in precarious employment do not have the same capacity as others to take time off work to attend appointments or to be flexible when appointments are rescheduled. A particular fear among many in this group was that of missing appointments. This fear was based on a well-founded assumption that a missed appointment might put treatment back significantly.

If you miss an appointment for whatever reason, there could be a million reasons why you miss an appointment. Your bus might be late, your taxi might not turn up, or you might physically not be able to get out because you’re poorly that day, whatever, etc. If you miss an appointment, it’s considered to be some kind of a black stain against your name […] that could potentially send you right back for years on the merry-go-round all again. Now to a trans woman or trans person that’s like, it’s the most horrific thing that can happen to them, apart from being refused treatment. It is the second most horrific thing that a trans person can go through, to be put back on the wait list again as a form of punishment. And I do think, I suspect as well that it is used as a form of, not only punishment but a form of culling of the wait list.

Many respondents reported experiencing a particular burden of responsibility to spot and act on potential administrative errors by GICs that could have a catastrophic impact on their care and health.

So they sent me a letter welcoming me to the waiting list of [GIC]. And they said your referral date was October 2019. What? Well I was on the phone. I’m having none of that. I said no, I was, my referral date is when I was referred to GIC and that was October 2018. […] and the current waiting time is something like 24 months. I’m thinking you’re not putting me back another bloody two years. Sod that for a game of monkeys. And when I rang up and voiced my opinion, the very nice lady at the other end of the phone said, ‘oh I’m ever so sorry about that’ she says, ‘we don’t know when anyone was done so we’ve just had to do it from when we opened the clinic and hopefully people like yourself will get in touch and tell us.’ And I had another letter back saying they’d amended it and I was, my referral’s now 2018 not ’19 … If I wasn’t savvy enough to pick up the phone and sort it, it wouldn’t have got done. There you go.

Travelling for care

Travelling for gender identity-related medical services is different from travel for many other types of health care because GIC clinics typically operate under a national (vs. regional) referral system which means that patients may end up travelling a significant distance. For those in more rural locations, or in lower population areas, accessing other types of specialist healthcare services may also involve significant travel – for example, one participant talked about travelling ‘100 miles each way’ for electrolysis and over 60 miles to access a sexual health screening. Participants talked about travelling for health care involving crossing locality and funding boundaries (e.g. clinical commission group, local authority) as well as national borders (e.g. Wales to England), and in some cases international borders (e.g. a patient who accessed medication from Thailand). For example, as reported in the case study in Chapter 4, in Northern Ireland, all services providing gender-affirming care are located within the Belfast area, creating significant disparities in accessibility of care between those close to the capital and trans people at the furthest edges of the region.

Rural participants talked about how travel to access health care was associated with difficulties relating to financial cost and in terms of time and stress. For example, this participant talked about how stressful, difficult and expensive it was for them to get to their GIC appointment:

So, for me to be able to get to [City 1] with all my accessibility stuff that I need and everything. The easiest way is train. Train from here to [City 1] with needing first class and a seat for my carer and everything is easily 50 quid one way. So then that’s 100 quid both ways, plus taxi from the train station to the thing. And the thing is my wheelchair’s bigger than the average wheelchair because I’m fat. So it’s wider. So, I need a van or accessible thing to be able to fit it in the boot. Even though it folds down and everything I need a bigger, like 16-seater or 12-seater or one of the bigger ones which they price gouge you for. So typically, a taxi in [City 1] from town centre to anywhere is at least 20 quid. We’ll conservatively say 30. One way. So that’s 60 quid for taxis, 100 quid for train and that’s just the bare essentials. That’s not including, because it’ll be an all-day trip, food or what have you.

This quotation provides an example of how ICTA participant accounts evidenced the way in which different marginalisations have a cumulative effect on increasing barriers to health care, evidencing how intersectionality works in creating extra barriers (see next section).

Other participants talked about the stress of travel, having to negotiate how to take a bus in a strange city and ‘find accommodation and stay overnight and that sort of thing – which was stressful enough on its own let alone the fact that I was going into this [GIC] appointment not entirely sure how it was going to work’.

Rural participants talked about how their access to health care was shaped by the distance to healthcare services. For example, one person recounted how losing access to their car led to them having to rely on a third-sector organisation to pick up their prescriptions and to think twice about whether they needed to go to the doctor: ‘I can only afford a limited number of taxis, like one a month. I had two last month, because I had to go and have my [COVID] vaccination.’ Other participants talked about choosing GICs on the basis of distance from home, rather than other factors that might be more important: ‘Afterwards I did think that maybe I should have done some more research and found out where the shortest waiting list was and just got the train or whatever when an appointment came up.’ Other participants talked about how the difficulties of travel to appointments led to them avoiding health care.

Participants also talked about how being in a rural area meant reduced choice of healthcare services, leaving them stuck even if they felt their local services were unhelpful. One talked about how their GP would not give them a bridging prescription:

You have no choice on GP practices here. It isn’t the case that, I can’t just move. If I live within a 20-mile radius of that clinic that is the clinic I have to go to. I knew of other people who are trans who were going to another clinic, another GP practitioner say and they were getting support and they were getting bridging prescriptions. And it was only what, 12 miles away.

Another participant talked about how they felt that being rural meant that they were stuck with a local NHS Trust which is ‘not as forward thinking’ as urban trusts. These accounts evidence how transphobia and lack of cultural competence from healthcare providers represent an extra risk for rural patients who lack patient choice. This may lead people to be denied or delayed in accessing health care. The possible profound impacts on their physical and mental well-being have already been referred to.

Being rural for some participants meant being in a healthcare context where they feared the potential for gossip or felt that local healthcare providers were not trustworthy, leading them to avoid local services. One participant talked about seeking sexual health screening outside of their area:

I decided that I needed to do an HIV test and I decided to do the full HIV STI one. And I looked, because I didn’t want to go, because we’re such a small practice, if I’d gone into the practice and asked for, a screen for this you can never guarantee, although they’re meant to be discrete you can never guarantee that somebody’s not going to say something and that’s going to be, you know. And of course then that sort of tars you with a brush doesn’t it because you’re going in for that sort of screening. And I went to [organisation 2]. The online one and I did […] I think they’re called third generation tests.

The logistical difficulties associated with travelling to clinic for appointments meant that some people welcomed virtual (online) appointments as providing a better way to access services. The lack of availability of this approach prior to the pandemic is noteworthy, because clearly for many the access issue was already present. For example, one participant mentioned how happy they were when they were able to get a virtual GIC assessment after years of difficulty in getting access:

I had an online assessment, surgical assessment in the autumn and then in December I had my second referral appointment. Again that was an online appointment, both of these with medical specialists by the way at the clinic and I was very happy.

Social repression of trans identity and isolation from trans communities

Rural participants talked about experiencing isolation related to their trans identity, and how the sense that everyone knows everyone in smaller rural communities can make the process of coming out as trans more challenging or sometimes impossible, due to transphobia. One participant had a prominent position within their community, having been the headteacher of the small village primary school for over two decades. This position of trust and care within the community meant that they were ‘terrified’ to come out because they feared how the village would react.

Not because it’s illegal as well you know but in a situation like that you just need a few people in a community go against you and life becomes intolerable. I’ve seen it happen to other people.

Another participant recalled how before they came out, they would be themself only when away from the rural community they lived in – for example, when they went on holiday or to cities far from home.

And on all those occasions when we were away from home I was [respondent’s name]. But back to who I used to be when we got home again … I was [respondent’s name] and we were about to go shopping and I live at the end of a cul-de-sac, a long cul-de-sac and I was looking to see if anyone would see me before I scuttled into the car to [City 1] or [City 2] or wherever it was we were going to go shopping. And I thought this is ridiculous, why am I still hiding? By this time I was working at the university and I was beyond teacher retirement age of 62, 63 I suppose, and I thought well, what’s the worst that could happen?

Coming out as trans only on retirement was something that other rural-living participants reported.

Socially ingrained transphobia was perceived by participants as being more prevalent in rural areas compared to towns and cities, with one participant describing how their community was ‘pretty much still stuck in the 80s, probably 90s, but they’re so far behind with everything, socially, medically …’. This participant compared their rural community with one of their nearest cities which has its own LGBTQI+ café and a much more visible trans and LGBTQI+ community. This individual felt geographically isolated from the local trans community to the extent that they felt they were effectively living in a different time:

Sociologically we’re sort of, compared to [city 1] or [city 3], we’re sort of, well Neanderthal really … When I’ve visited [city 2] I’ve seen trans women and trans men wandering around the streets and living their lives. So I know that there is a community for want of a better word in [city 2], but it’s not, I can’t just jump on a bus or drive up there because it’s 20-odd miles.

For rural participants who feel unable to present as trans due to the way that trans identities are stigmatised in their local community, there are health consequences. One participant explained that the reason they used illegal drugs and abused alcohol was because where they lived they didn’t feel that they could be themself.

When I get depressed I treat myself badly, I start drinking a lot of wine, I start smoking more cigarettes, I might have a joint, I might even contemplate the idea of having a line or two of something stronger because I feel bad and the reason I feel bad is because I can’t present myself to the world as I feel I am.

Social isolation from trans communities is thus associated with negative mental health impacts for rural-dwelling trans people. Negative impacts of social isolation are also relational. For example, being isolated from other trans people impacted participants’ sex life, one reporting that they had not had an intimate or sexual experience since 1995: ‘I don’t really miss it so much as I miss being in a relationship.’ Other rural trans participants talked about finding it difficult to even open up to friends for hugs and tactile comfort; while they attributed this in part to sexual abuse they experienced as a child, they also related this to their trans identity and being historically fearful of developing connections with people.

Social isolation is additionally a health risk for trans people in rural communities, in the sense that, if someone becomes unwell and they are cut off from their local community because they are trans, they have fewer people to rely on for help.

… living alone, when I have felt unwell, and it’s only, it can get scary, let’s put it that way. I can get scared when I’m, if I’m unwell feeling very vulnerable I can get, I can get scared.

Another participant similarly talked about their fear of becoming ill, because they live on their own and have little to no help available if they were to become bed/house bound. This would make them extremely vulnerable, which might have worrying implications for people considering trans-related surgeries.

Living in a small rural setting also makes healthcare encounters potentially more difficult. For example, one participant spoke about how the rural setting they live in has a very strong religious community where most of the village – including one of the GPs – is part of the church. This made them very anxious about going to the doctor:

So you don’t know who you’re going to get if you go to the doctor, unless you know them already … I don’t think it holds me back from seeking help when I need it. But it maybe delays me seeking help because I have to go through that process of thinking or mentally preparing myself of what’s going to happen here and just preparing myself for the possibilities.

While some participants reported very supportive GPs/healthcare providers in their rural context, other participants talked about how they left their location due to very poor experiences with health services: ‘So I move here and I’m so absolutely, I’m so panicked by the idea of talking to medical services again, making contact with a GP. And then I did, and they were wonderful. They set my mind at rest.’

Accessing mental health services

Many of the TBPoC group findings echo the general findings set out earlier in this chapter, of how trans health care and being trans impact mental health. However, some findings are specific to this group.

Participants reported discrimination on multiple fronts in terms of the mental health support that they had either accessed or attempted to access. Discrimination based on being trans was discussed as a common occurrence, something which seemed to be a product both of transphobia and of a lack of substantial training to provide adequate support to trans people. One participant expressed their difficulty in accessing a counselling service that was safe for all aspects of their marginalised identity:

I wasn’t given the correct support for what I needed … it was counselling through local services but I wasn’t allowed to speak about my transness or any other issues, so I just had to talk about the surface anxiety and depression and not go into anything deeper …

This participant described how they had already struggled with the emotional labour required to seek help for their deteriorating mental health; they were hoping that their efforts would result in transformative support, but described how they were instead met with discrimination on the basis that they were trans. This meant that they were not afforded the safety and care that is expected in all therapeutic settings and instead were further traumatised.

The knowledge that reaching out for support did not guarantee a positive outcome was prominent among the participants in this group and several said that this had deterred them from seeking out further help, instead turning to their communities for support. Many of the participants said that they did not feel safe enough to disclose that they were trans in mental health/counselling spaces, for fear of being refused help or pathologised.

Another issue shared by the majority of participants was the lack of cultural competence within counselling and therapy services. It was quite rare for participants to be able to speak to therapists and counsellors who shared their whole lived experience. Participants said that if they were able to access a therapist who was Black or a PoC, it was not guaranteed that they were not transphobic. Similarly, if they were able to access a LGBTQI+ or trans therapist, or one that was supposedly knowledgeable about trans issues, racism and cultural insensitivity were often prevalent. People in this group also commonly experienced therapists as lacking knowledge about trans experiences.

These participants’ experiences of racism and transphobia result directly from the fact that they live at an intersection of identity that has been continuously overlooked by the decision-makers who provide these services. When asked about any alternatives, participants noted that very few mental health services exist that acknowledge and tailor to the intersections of their identities and those that do often lack the resources needed to support their service users. Many were aware of community organisations such as the Black Trans Foundation and the Black LGBTQIA+ Therapy Fund. However, these organisations are oversubscribed and underfunded to manage the demand for tailored mental health support. One participant remarked that the lack of appropriate provision left them feeling hopeless about getting help with their mental health. While counselling can be accessed privately, the significant costs of this mean that many TBPoC were unable to access support with the cultural competence to understand their struggles and effectively support improved mental health outcomes.

Cultural transphobia and cultural insensitivity

Family relations in some Black and PoC communities can differ from those of white communities. One reason for this is the higher presence of strong faith backgrounds in some communities. 87 Faith is often not separate from culture and instead intricately linked with how people from certain communities form their identities. Religiously based bias in multiple cultural contexts has resulted in trans and queer identities being ostracised and invalidated. 88 Many of the participants of this TBPoC group talked about the struggle to come out to family because of the risk of being cut off entirely due to the homophobia and transphobia that they would face. Participants talked about how the risk does not just include immediate family but extended family too. Not only does coming out thus jeopardise their safety and stability, but it can also sever their ties with their heritage and therefore potentially destabilise their sense of self. Participants talked about how, in certain cultural contexts, it is often a choice between maintaining their safety and stability by hiding their identity from their family or choosing to be themselves and facing family rejection. It is important to note that family rejection in this case is not just judgement and disapproval; participants talked about instances of coming out that resulted in houselessness, disownment and, in extreme cases, violence. The high potential risks of coming out to family are at odds with some GIC clinicians’ insistence that individuals must come out to their family before being given access to care; this GIC stance evidences a potentially dangerous failure of cultural understanding. It is also noted that this issue is neither exclusive to nor ubiquitous in BPoC communities and suggests the need for clinicians to be able to apply a person-centred, culturally aware approach, understanding diverse ideas of family and community beyond the idea of nuclear family.

Familial or community understandings may also shape the experiences of TBPoC with mental health difficulties. Participants talked about how the attitudes towards mental health in some Black and PoC communities can differ greatly depending on generation, with older generations tending to see discussion of mental health issues as taboo and something negative. Participants noted that emergence of mental health difficulties can be interpreted as evidence that a parent/carer or family has failed their child in some way. Opinions of the extended family and community can also influence how a parent/carer or family reacts to mental health issues displayed by their child. Participants talked about how the dismissal of mental health discussions in the homes of TBPoC suppresses the possibility of mental health solutions. This, said participants, can lead to TBPoC feeling the need to become hyper-independent, especially when it comes to their mental health care, as a result of not having safe and protective channels to express these health concerns in the home. In turn, this hyper-independence can take a toll on their mental health as it precludes building a robust support system.

Race, citizenship and class

Some participants talked about how citizenship status had had an effect on their access to trans-related health care. GICs expect trans people to change their names, a straightforward process in the UK. However, people not born in the UK may face significant barriers to changing their name, and it may even be impossible if their country of origin does not recognise trans people. Another issue discussed by participants was the expectation that patients seeking trans-related health care would want or need to change their name, a finding explored in-depth in Treatment of non-binary identities in trans-related care. For some TBPoC, their name holds cultural meaning and heritage rather than being gendered. Some participants did not see name change as an essential part of their transition and so this expectation from GICs was a barrier to them accessing care.

Participants also talked about feeling that racism in healthcare services provided a further barrier to accessing health care. Many participants believed they were not taken seriously at their GP practices due to the way they spoke and the way they looked. Participants talked about their experiences of linguistic profiling (racist discrimination based on language use),89 one participant noting how they seemed to be treated differently due to their accent and their ethnicity: ‘I would sometimes [pre-COVID] take my white friends to my doctor’s appointments, so they can call out when the doctor isn’t taking me seriously.’ Due to the 4-year-plus waiting lists for GICs, many trans people resort to going private for their medical transition health care. Black people and some PoC communities, however, fall into the lowest income bands in the UK and have less access to generational wealth and savings. 90,91 Thus, for TBPoC it is often impossible to afford the considerable costs of private health care, which leaves them disproportionally impacted by the multiyear waiting lists for transition-related health care.

Black participants of different genders made reference to misogynoir, the term for misogyny that is specifically levelled at Black women, femmes and those perceived as women. 92 Within the healthcare setting, misogynoir generally presents as assuming that patients can handle more pain than their white counterparts, as reports of pain not being listened to (often until it’s too late and sometimes irreversible damage has taken place), and as when a patient’s well-being is placed below that of patients of other racial groups. 19 The severity of misogynoir is often linked with the shade of the Black person – darker people are treated worse than those with lighter skin.

One trans Black person when asked if they thought healthcare professionals did not take them seriously because of their trans status, their race or their disabilities said: ‘It’s definitely all three, they seem to hate it when I know a lot about my own conditions because it suggests that I’m completely fine, if I’m able to speak about it in detail.’

One trans Black person cited issues with the limited pool of gender surgeons on offer for trans people in the UK, saying that people of colour or Black people specifically have to weigh up their willingness to receive care from those who have inflicted harm on themselves or others due to their race, or explore costly private health care (in the UK or abroad) to limit racist interactions that occur when seeking to access trans-affirming surgery.

Another trans Black person also referred to the public humiliation they experienced from GP reception staff and GP managers after they handed in their deed poll for a name change on NHS systems, and to how their deadname was continuously used subsequently:

And he came out and he called me this name that was all jumbled up and I just broke down in tears in the surgery and started crying. And the man literally said to me, ‘You need to calm down, you’re causing a scene. We have an anti-abuse policy’ and all of this. And I was thinking, you wouldn’t say this if I was a cis white female crying about my health and stuff like that. You’re saying I’m causing a scene, is that because I’m a PoC?

This quote exemplifies the kinds of racism that trans Black people may experience at the hands of healthcare professionals, and how Black patients, particularly those subject to misogynoir, are often mislabelled as angry or aggressive. 93 Mismanagement of care by staff (here deadnaming) translates to poor outcomes for patients. This participant reported significant distress and a long-term distrust of healthcare services.

Treatment of non-binary identities in trans-related care

Non-binary identities are still a point of contention in many trans-related healthcare settings. In the accounts of TBPoC people in this study, non-binary identities within GIC settings are still not seen as valid by clinicians, with many participants reporting being refused care on the basis that they did not seem ‘binary’ enough.

If anyone mentions a GIC I immediately roll my eyes … the way the NHS GICs are completely backward, completely outdated. If you don’t fit this binary version of what you think trans is, we’re not going to give you care.

One participant remarked that their Black non-binary friend wanted to use a name that was meaningful to them and their heritage but was refused by the GIC on the grounds that it was insufficiently gendered. This highly problematic resistance to non-binary identities, reported by many non-binary ICTA participants, can also be understood in the context of Eurocentrism and colonisation; historical scholarship documents that many pre-colonial cultures did not have a binary approach to gender. 94–96 In this way, bias against non-binary genders intersects with a lack of cultural awareness and racism to create additional marginalisation.

While a recent legal ruling suggests that, in the UK, non-binary people are now legally recognised under equality legislation,97 TBPoC who are non-binary remain in a vulnerable position when their identity is not recognised or is challenged in trans-related healthcare settings.

Weight bias

The relationship between racism and both weight stigma and body mass index (BMI) as a measure of ‘healthy’ weight is increasingly acknowledged, as is the role of racism in assumptions that for some populations fatness is a cause of health problems, compared to a broader understanding of health determinants. 98,99 Many ICTA participants talked about how their body weight became implicated in healthcare encounters. However, this was particularly expressed by this subsample, with many TBPoC participants reporting being refused health care on the sole basis of their weight. One participant was told that in order to access health care they would need to be within a ‘healthy’ weight as defined by BMI scale, something which they said frightened them as they had not been that weight since puberty.

Other participants were told to lose weight to access health care despite having a history with anorexia which made dieting a potential trigger for relapse. Research on weight bias (discrimination against higher-weight individuals) evidences both the negative impact on experiences and outcomes of health care100 as well as the relationships between body weight and socioeconomic status and ethnicity, with poverty and being a non-majority ethnicity both associated with higher rates of obesity. 101,102 This research literature suggests that TBPoC people may be particularly vulnerable to experiencing weight bias in their medical encounters as well as experiencing the negative impacts of internalisation of weight bias. Indeed, participants noted how constant images and centralisation of thin white bodies in movies, TV shows and other consumable media had impacted their mental health. 103 Relatedly, participants talked about the negative impacts of not seeing representations of Black and Brown trans people in images of transition-related post-surgery results, another example of the absence of representation or inclusion of TBPoC bodies in trans health care.

Reception staff

Almost all of the focus-group participants explicitly mentioned the role that reception staff play in allowing transphobia to take place within the healthcare service. As one participant said, ‘The true gatekeepers are the admin people.’ When there were positive experiences with reception staff, they made the participant’s whole experience with health care more positive. When looking to how health care can be improved for trans users in the UK, training of reception staff needs to be included as a point of urgency to ensure that a trans person’s first human touchpoint with health care is positive.

Integrated and disintegrated care

Participants who noted smooth communication between different healthcare departments, both related to their trans health care and general care, were the exceptions. Most participants noted problems with referrals being bounced between departments, leaving them unaware of when their necessary specialised care would begin. For non-trans related health care, the accounts of lack of communication between GPs and referral services were sometimes shocking, with participants talking about how the lack of communication forced them to have to advocate for themselves, often without warning. Participants in this subsample wondered if the patient labour forced on them (to bridge lack of communication between services) was related to their ethnicity and while this issue (lack of co-ordinated health care) was widely reported by ICTA participants in general, the accounts of TBPoC participants suggest that this issue may be particularly stark for this population. The accounts already discussed have shown that TBPoC have to deal with healthcare professionals who enact racist microaggressions, which act to dissuade people from accessing health care. The impact of the lack of co-ordinated health care compounds this.

Rationale and implementation

Discussions took place between Trust A hosting the GIC and NHSE about ‘how to manage waiting’. There was a shared concern about the number of people now on the GIC waiting list, due to increasing demand, and the length of waiting for first clinical appointments. Discussions also took place with third-sector Organisation B, about a new gender-outreach worker role, with lived experience of being trans. Funding was agreed for this new role, employed by the GIC, and offering information, advice and peer support, targeted at people on the waiting list. Two part-time trans outreach workers were recruited by the GIC, working with staff from Organisation B. Outreach workers were based primarily on Organisation B premises, but had the opportunity to be involved in meetings and aspects of care provision at the main GIC site.

At the time of interviewing, from late 2019 through 2020, GIC A had over 1000 people on its waiting list. Its mode of operating followed the NHSE Service Specification for Gender Identity Services for Adults (Non-surgical Interventions). 15 Waiting times were typically 2 years for the first clinical appointment, and a further 2 years for the second. Following diagnosis, some service users who needed hormone therapy waited further, for around 12 months, for an appointment with an endocrinology team, typically 5 years after referral.

Achievements of gender outreach

• Service users valued a variety of support groups set up by the outreach workers and how they were run.

I also started going to … plus 25 group. She always redirected towards positivity and she was good at setting boundaries in a way that made the environment feel very safe. And yeah, I would talk about things that were very difficult and then she would reframe it … that’s a huge positive.

Service user C1

• In particular, a trans swimming group was widely appreciated, providing access to activity that otherwise poses significant barriers.

… we’ve got people who’ve not been swimming since they were a kid because of the fears that they have around changing facilities or doing swimming, because it’s a vulnerable activity putting on a swimming costume and doing these things …

GIC staff 1

• Outreach workers provided emotional and practical support one-to-one for people on the waiting list.

… sat down for an hour and just had a chat … that’s one of the biggest things that I discovered was when you speak to other trans people, there are a lot of things that happened in your life which they recognise … that’s where you’re thinking, oh well, it’s not just me. Everyone’s gone through this.

Service user C2

GIC clinicians also began to refer people for support at a later stage in their journey, including on diagnosis.

• Outreach workers were seen by GIC staff as deeply committed to their clients and ‘always fighting somebody’s corner’ across a range of arenas concerning health care and other aspects of their life.

• Outreach workers improved clinic–community communications in both directions. They drew on personal and third-sector digital and other communication skills to reach members of the trans communities.

… they’re more expert than us at posters. It’s something simple but it’s something that will bring in 100 people. If we did one it would look, we’d only bring in 10.

GIC staff 2

1. They arranged meetings where trans community members could meet and talk with GIC clinicians and arranged for the GIC to be represented at trans community events.

2. Outreach workers were seen by GIC staff as not only representing the concerns of service users and potential service users, but also stimulating a constructive GIC response. Outreach workers instigated direct dialogue with non-binary people over their concerns about how they were received by GIC clinicians.

3. An outreach worker led on establishing a monthly trans sexual and reproductive health clinic, based in third-sector premises, through developing a working relationship with another NHS Trust.

4. Gender-outreach workers referred people from out of the area they covered to trans support groups in their area.

5. Outreach workers established collaboration with the local police in reporting hate crime.

Issues and challenges experienced

• There was widespread and often painful awareness that the length of the waiting list was the most pressing concern for service users. Both staff and service users saw the gender-outreach workers themselves as unable to address this issue.

We had great discussions but again she couldn’t really do anything. For me it just felt that you could go there and vent your frustrations a little bit and then that was it. But it has absolutely no influence by the sounds of things.

Service user C3

• Many saw outreach workers as uncomfortably ‘caught in the middle’ of allegiances to the trans community and the NHS GIC. Gender-outreach workers were seen in a compromised position, representing the requirements of the established NHS GIC system, and its long waits, to trans communities. Working with the tensions inherent in their ‘dual belonging’ was often stressful and involved considerable skill in relating.

• Outreach workers felt they were left supporting service users with the high levels of distress. GIC staff also appreciated that outreach workers shouldered the responsibility of responding to service-user distress at anti-trans media coverage.

• Some service users were of the view that the association of the gender-outreach workers with the GIC was problematic because things said to the outreach workers might reach clinicians involved in their assessment.

• Some users felt that gender-outreach workers should be more explicit in advocating ways of moving forward with transition through routes for obtaining hormone prescriptions other than through GICs:

They should get a list together of endocrinologists who are willing to take responsibility for trans patients and prescribing them hormones … they should give you that list on the helpful resources while you wait, not things that I knew already.

Service user C4

• Staff from both the GIC and Organisation B felt that the gender-outreach workers were overstretched relative to the demands on them, and this was borne out by the experience of some service users, much as they appreciated the support offered.

• Several staff spoke of the challenge of reaching people on the GIC waiting list who lacked the confidence to participate in trans events and networks, or who perhaps lived in a rural area without nearby trans contacts.

• A related challenge concerned the management of group events so that they provided an opportunity for interaction and mutual support, without pressuring those attending to interact or participate more than they wanted to.

• The gender-outreach workers and staff involved in their supervision were clear about the difference between providing emotional and practical support to service users and providing mental health support. There was confidence that the supervision of the gender-outreach workers meant that they knew when to refer people on to other services, usually provided by third-sector organisations. There remained, however, the issue of the capacity of such services to meet the demand placed on them.

Background

For the GIC studied, the length of time from referral to first assessment appointment was around 2.5 years and grew significantly over the course of the COVID-19 pandemic. Service users interviewed reported waits of between one and nearly 3 years, depending on when they had been referred. All found the wait very stressful, with some deciding to ‘go private’ for assessment and access to hormone therapy before being seen by the GIC.

Consistent with the NHSE Gender Identity Services (Adults) specification,15 there were two clinical assessment appointments by a senior gender clinician for each person, with additional ones in between if clinicians considered this necessary. There was also a physical examination for detecting issues that might complicate hormone therapy.

Gender identity clinics’ interfaces with primary care

Service users reported widely divergent experiences of being referred to the GIC by their GP. For some, their GP referred them quickly and competently. For others, their GP appeared both reluctant to refer and lacked knowledge about how to do so.

They genuinely made me feel like I was being an annoyance to them by asking to be looked after, for them to a do a thing that only they can.

Service user C5

On receipt, referrals are processed by the GIC nurses, who request any missing information from the GP. Acceptance of the referral involves the GP signing a memorandum of understanding (MoU) which sets out the detailed arrangements for shared care between the GIC and a GP practice, above all with respect to hormone therapy. The GP is expected to prescribe, following GIC advice, and arrange regular blood tests, which the GIC interprets and discusses with the person concerned, leading to revised prescribing advice as necessary. The GIC introduced the MoU at the referral acceptance stage in response to uneven responses from referring GPs across the country to shared care.

GIC staff have developed template letters to make sure that GPs are fully informed about service users’ progress, and the implications for prescribing. Liaison between GPs and the GIC over blood tests and prescription change issues is well established, using a shared digital patient record system. Service users and GIC clinicians, however, reported persistent problems with blood test information not being provided in time to be of use at scheduled GIC review sessions. Service users found they had to intervene frequently.

Both gamete storage and hysterectomy commonly require a person’s GP to complete an individual funding request (IFR) to the local CCG. The GIC has developed ways of supporting GPs with this, making them aware of recent NHSE guidance which indicates that gamete storage should not be withheld.

Psychology services within the gender identity clinic

Staff were aware of people entering the service with a mental health burden from the stress of daily experiences of transphobic interactions, as well as the impact of the extended waiting period and experiences of having little control over their access to gender-affirming care through the GIC system.

… causing a weight or a drain on my mental health.

Service user

The GIC provides psychological support separately from the main assessment pathway, through a small psychology team. Group-based models introduce an element of peer support as well as being cost-effective in utilising staff, including clinical psychology trainees. A mix of groups, workshops, individual sessions and some family and couples work has evolved to meet perceived needs. These can be accessed ‘at any point’ once service users are being seen by the GIC. Staff estimated that around 20% of the people seen by the GIC are seen by the psychology team in one of these ways.

Pre-pandemic, there were face-to-face weekly groups and longer workshops for those not able to travel to weekly groups. More recently, the service has developed online groups for trans-affirmative CBT and compassion-based therapy.

The clinic nurses were seen by staff and service users as the key link by which people could access the psychology services, as well as providing informal counselling to people on the pathway.

Experiences of benefits and achievements

Several service users reported that group work provided experiences of both receiving help from peers and of helping others. For example, one user felt that the ‘improving confidence group’ provided a structure for effective peer support:

So, I came away from that group with some sheets that I still keep around to this day, because I got a lot of help from the other people in that group, saying, these are our experiences … It was that sort of thing, where it allowed for much more freedom of conversation, rather than a minute-by-minute, this is our topic …

Service user C6

Another experienced an online compassion therapy group as similarly providing ‘space for us to bounce ideas and talk about experiences’ while also providing a helpful framework:

… the general attitude of, stop being so hard on yourself. Again, it’s one thing to have a drive and a motivation. It’s another thing to be lashing the whip at yourself, to be like, no, go faster, go faster, you’re a failure for not having done more …

Service user C7

Staff reported that online delivery of the various groups has been successful, with therapeutic work happening in a slightly different way from a face-to-face model, but equally effectively. Online models made weekly attendance and a more intensive way of working more viable, and supported peer engagement, particularly for geographically dispersed participants.

In an experience of individual counselling, a trans person felt the psychologist had helped them focus appropriately on the difficulties of navigating various aspects of their transition, while affirming their underlying identity.

Experiences of issues and challenges

• GIC psychologists recognised that they had limited capacity to address the considerable mental health burden of many trans people entering the service, with the group provisions addressing the milder end of the spectrum of severity. GIC psychologists were aware that many service users had mental health conditions, such as anxiety, depression, or obsessive compulsive disorder, which in their view were not directly related to their gender and which therefore should be treated by mainstream local NHS mental health services. Local mental health services, however, often refused to treat such cases, referring them back to the GIC.

If I detailed every single instance of when basic mental health support was, not necessarily denied, but refused to me, because I’ve got gender issues and they’re not trained to deal with that …

Service user C8

• GIC staff saw their role in addressing this serious gap in access to provision, arguably affecting those with the highest need, in terms of acting as explicit advocates for people to get treatment. Some GIC staff expressed concern that the local services taking on these clients might not take a sufficiently holistic approach to mental health, applying only a limited range of techniques for addressing specific common mental health conditions, and lack skills in helping people affected by minority stigma.

• Some staff were concerned at the contradictions between taking up a therapist role and working within a setting that assesses people as to whether they are appropriate for trans health care. The same GIC clinic both sets out to provide an open and exploratory space for people to consider what they want from treatment, and determines within an assessment process whether they fulfil diagnostic criteria. Staff also acknowledged that pressure to reduce the waiting list and maximise utilisation of diagnostic capacity can lead to issues of ‘sidelining’ people who are perceived to be ‘unsure’ about their treatment goals.

• Further evidence of tension between receiving psychological help and GIC assessment came from staff perceptions that some service users learnt not to disclose mental health difficulties to gender clinicians. This could lead to mental health conditions going unsupported, and only emerging when people came for psychological assessment separate from the gender assessment.

• Overall, the psychology team had limited capacity to offer psychological interventions, particularly individual counselling. This meant that programmes of treatment were more limited in length than was desirable for some individuals, to keep waiting times down. It was also difficult for staff to keep in mind all the individuals on their caseloads, which were considerably larger than in most psychology services, with more people seen less often, sometimes with several months between sessions. The groups or workshops meant, however, that it was possible to offer follow-on interventions after seeing someone individually.

Rationale and implementation

This case study concerns an NHS primary care training and accreditation scheme (TAS) focusing on meeting the healthcare needs of LGBTQIA+ communities. It focuses on the ‘trans-inclusive’ elements of TAS intended to improve the health care received by trans people, introduced in 2016 within MetroCity by the local NHS in collaboration with Alpha, a third-sector organisation providing support and advocacy for LGBTQIA+ populations.

TAS was launched, initially for GP practices, in MetroCity in 2013. In 2016, TAS was relaunched and rebranded as a trans-inclusive scheme. The motivation to make the scheme trans-inclusive appears to have been strongly shared between Alpha and MetroCity Commissioning (MC). Prior to 2016, they became aware that primary care and other branches of health care in MetroCity were often not meeting the needs of trans people. The new version of TAS is funded so that Alpha provides training and accreditation services to primary care practices without charging them a fee.

On the basis of local research into the barriers faced by trans people in accessing services, TAS staff at Alpha developed standards for primary care of trans people, as well as a framework for accrediting competence at the level of a GP practice.

General practitioner motivation to work with trans-inclusion aspects followed from their commitment to the earlier versions of TAS that focused on improving the experience of lesbian, gay and bisexual (LGB) patients. One GP cited the strong motivating effect of TAS staff with lived experience of trans health care coming to their practice to explain the barriers that trans people face.

The TAS philosophy is that trans community membership and needs are fluid and changing, and that training and accreditation need to be co-produced to reflect this. The TAS steering group includes people with lived experience of receiving trans health care, as well as GPs, dentists, pharmacists, optometrists and commissioners.

How training and accreditation work

Training sessions for GP practices typically last 1 hour, intended to involve all practice staff. These sessions may be several months or even 1 or 2 years apart, depending on how rapidly the practice is able to progress with its development in the trans healthcare standards.

Training covers: LGBT basics, including the differences between concepts of sex, gender identity and sexuality; ideas of cis and trans, including non-binary, people; health inequalities experienced by LGBT people, the additional inequalities faced by trans people; the importance of recognising protected characteristics and addressing inequalities; and best practice in terms of inclusive primary health care. Clinical and non-clinical staff alike commented on the importance of having the training delivered by a trans person.

Assessment for accreditation typically takes place on the same day as training, in a separate session with a smaller group of practice staff. This includes discussion of policies and questioning of staff about how they have dealt with or would deal with various scenarios involving trans patients.

Assessments also explore the questions typically asked by clinicians in their consultations with patients, whether patients are given the opportunity to give information appropriately about trans identities and whether there is exploration of related health issues such as relevant screenings.

The assessment result is fed back in terms of a bronze, silver or gold TAS award, with recommendations for areas of improvement. Typical feedback at bronze level might concern ensuring a well-intentioned policy is better understood and acted on by practice staff.

Features of trans-inclusive healthcare resulting

The picture emerging from the perceptions of service users and TAS staff is that some accredited practices have developed competence in many aspects of trans health care and have acquired a substantial trans clientele. However, the experiences of service users suggest that trans healthcare expertise was not consistently held by all staff in a practice, or consistently supported by administrative systems. Commissioners were also concerned that trans healthcare understanding and competence was limited to a relatively few more advanced practices. In these:

• Patient registration forms allow people to indicate their gender in an inclusive way, as well as trans status, pronouns and anatomical details relevant to screenings. Practices have also developed expertise in how to change gender markers on medical records and how to transfer appropriate information from an old record to a new one.

… their registration form was really good, I think it had multiple gender options. It asked a question about whether or not you have a cervix rather than just assuming that women have a cervix and men don’t.

Service user C9

• Practice receptionists showed awareness of some key aspects of trans inclusion.

I went in to book an appointment and that stresses the hell out of me, and I went in in person, because I thought they were less likely to think I was joking. Because I don’t look like the kind of thing they would be expecting … And the receptionist was just, yes, how about Tuesday? She didn’t even blink …

Service user C10

• Two trans men commented on the respectful and sensitive way that cervical smear testing was carried out.

Some service users, however, reported significant problems, indicating inconsistencies within practices:

• One person had difficulty achieving a change in their name and gender marker on the patient record. The surgery staff consistently referred to the participant by their correct name, but documents printed out from the record contained their deadname.

• Another participant attended for a minor procedure. They were deadnamed in the waiting room, and then found the treating clinicians were surprised by their gender. They experienced having to deal with the clinicians’ embarrassment, rather than receiving support for their own reactions.

• Another participant pointed out that even seemingly minor failings in respectful behaviour towards them were all the more painful because of their past experiences of healthcare settings.

… it’s the fact that I have repeatedly had bad experiences. I’ve had more negative experiences than positive experiences. So, even though I have a relative assumption that my GP practice probably is fairly culturally competent as far as a bunch of cis people go, that past experience isn’t going to magically disappear either […].

Service user C11

Developments in transition-related care

Training and accreditation scheme staff reported that it was increasingly rare for a practice not to know how to refer someone to a GIC, or to avoid doing so when asked to. Following repeated difficulties in getting a referral to a GIC from their GP in a different part of England, one service user reported that their new TAS-accredited GP proactively asked if they had as yet been referred. The GP then completed the referral within a week.

Higher levels of TAS award are tied to practices demonstrating competence in prescribing hormone therapy for trans people, and TAS staff described how they could connect less capable practices with other GPs already skilled in this. Some GPs indicated that they were already experienced and confident in prescribing and monitoring hormones under shared care with a GIC, as well as prescribing hormones for harm reduction to people on a GIC waiting list.

However:

• Some service users reported that their TAS GPs lacked knowledge about how to work with the GIC system. In one case, at a gold-accredited practice, a service user had to overcome several barriers to receiving care via a GIC.

• Someone who had already transitioned when registering with their practice was referred by their TAS-accredited GP to a local endocrinologist for hormone prescriptions. This person questioned why this was necessary:

… I’m just on hormones for the rest of my life, why on earth can a GP not manage that?

Service user C12

Rationale

This case study concerns delivery of the WGS since 2019. Prior to this, access to specialist gender services was via funded access to a specified GIC in England. Welsh patients, however, first had to be screened by local mental health services. This created significant inequities to accessing gender-affirming care for Welsh patients. The entire trans population of Wales was placed on to the waiting list of a single English clinic.

The instigators of the WGS were a small network of people from different settings, who shared a moral commitment to establishing a new kind of service for trans communities. The network included a GP who had established a working relationship with Welsh government health policy-makers in another clinical area. Others involved in the design included individuals from trans communities and a third-sector LGBTQI+ leader with a history of working with communities to deliver innovative services. Staff and community representatives consulted widely within local trans communities, gathering views as to how the new services should run.

The Welsh Gender Service in practice

Benefits experienced

• Service users had positive experiences of the integrated service provision:

… my three years with the [WGS] and with the local gender teams has just been so relaxed. It basically comes down to what do you want from your transition? What effects do you want, what is bothering you?

Service user C13

• Gender clinicians experienced the fact that initiation and management of hormone prescribing was taken over by LGTs as a welcome release of their time from the kind of follow-up appointments that occur in other GICs.

• LGT prescribers welcomed their integrated responsibility for carrying out blood tests, monitoring and optimising hormone therapy, as well as taking overall charge of the relationship with the patient. They emphasised the benefits of integrating hormone therapy with other aspects of primary care, also appreciated by service users:

The doctor that I see for trans healthcare stuff […] I go in about one thing, she asks about my history and sorts me out for 10 things I didn’t even know I was able to get help with, I love her.

Service user C14

• Both service users and WGS staff value the social and emotional support offered by the support service:

… They didn’t seem to be trans people, but they just didn’t put a foot wrong. They were so open and empathetic and would never accidentally misgender anyone […] I haven’t really had that experience in any medical setting before.

Service user C15

Challenges experienced

• There were widespread concerns at the level of resourcing of the system as a whole, given the size of the waiting list, even though the situation for all other GICs was recognised as being considerably worse. While service users were appreciative of the support service, some spoke of long delays in getting a response.

• Some staff raised concerns that, even within the gender-affirming values of the WGS, there could be unwarranted additional assessment appointments for some groups, because clinicians ‘maybe sometimes still having a slightly narrower view of transness than they should or they could to support those people’. The danger was that certain groups of people might be seen as ‘unsure’ when in their own minds this was not the case. This was a concern particularly for autistic people and also for non-binary people.

• Several service users and clinicians were very concerned that there is no funding for hair removal under the WGS, seeing this as an integral part of providing psychological well-being for transfeminine people, as well as essential in preparation for any lower surgery, and an unreasonable financial burden to place on service users.

… we don’t get the advantages of English patients … We don’t get electrolysis.

Service user C16

• While the WGS has taken steps to streamline the process for surgical referrals, several service users pointed out the impact of being dependent on providers elsewhere in the UK, the lack of capacity and waiting times involved, and the need to travel a considerable distance and usually recover away from home.

• There were also some operational issues. Prescribing clinicians within LGTs reported having to take on the somewhat improvised creation of patient record systems for their WGS work, because there were no existing systems that linked effectively between the assessment clinic, the LGTs and GP practices that they might subsequently discharge people to.

• LGT clinicians indicated that they were either near their planned capacity or else would be at it within a few months. At that point, unless sufficient service users had been discharged on to other GPs, bottlenecks would appear at the LGTs.

• Creation of a direct enhanced service (DES) agreement, by which GP practices could have additional payments for managing HRT for trans patients, was widely welcomed by clinicians as a mechanism for overcoming GP resistance to taking on seemingly unfamiliar work. However, progress has been slow in persuading practices throughout Wales to engage. Possible reasons for reluctance included the general pressure on GP workloads and many GPs being wary of engaging with HRT for cis women following concerns with risks of cancer and thromboembolism with earlier generations of treatments in the 1990s.

• Data protection rules have so far prevented a service-user data-sharing agreement being put in place between Umbrella Cymru and WGS. WGS has to send people information about the support service with a consent form for Umbrella Cymru to be able to contact them. It could be problematic to send out a letter from the gender service, using an appropriate current name and title, to people referred prior to the new service opening in 2019. There was a danger that the person concerned had changed their name since the referral and that the name on the letter might ‘out’ them to people they were living with.

Background: ‘a case study of nothing’

This case study looks at existing services available for the assessment and provision of care for trans adults in Northern Ireland, where there are widespread perceptions of a ‘trans healthcare crisis’. A specialist gender clinic in Belfast has seen patients 18 and older for assessment and provision of care related to gender incongruence. The clinic is not a GIC in the same sense as GICs in England; it primarily functions as a psychosexual service. Crucially, it has a very small clinical staff and did not see any new trans patients between January 2018 and June 2020. New patients are now being seen from existing referrals. New referrals are still not being accepted.

In 2019, the NI HSC Board was tasked by the Department of Health with reviewing GISs in Northern Ireland. A review group, with some trans community participation, was established with ‘listening events’ taking place in November and December 2019.

Third-sector support for trans people

Third-sector organisations are not involved in the delivery of commissioned healthcare services but attempt to manage the high demand for support from trans people who have no NHS gender service available to them. In late 2018, a number of trans people set up a trans-led campaigning and human rights organisation to improve health care. This led to a position paper on ‘what we want to see from gender-affirming healthcare in the region’. They also pushed for progress with the review of the specialist clinic, securing limited trans representation.

Alongside its policy and training work, this trans-led organisation provides healthcare support and advocacy for individuals. Other third-sector LGBTQ+ organisations also provide counselling and advocacy for trans individuals engaging with health care.

Several service users reported receiving counselling or informal advice from LGBT+ or trans community organisations, as well as from trans friends. This had helped them decide how to move forward with private care or self-medication. One interviewee reported that they had benefited hugely from attending a week-long ‘trans training’ residential. This had included a variety of workshops, including on how to manage a name change.

One third-sector interviewee called Northern Ireland an ‘ethno-nationalist state’ where society is heavily divided into two groups with antagonistic views of national identity. This is linked to rigid gender roles, which has implications for making transition experiences ‘extremely difficult’, even compared to those in other parts of the UK.

Experiences of the gender identity clinic

Of the three interviewees who had been seen by the GIC, one found the overall experience acceptable. Another described the initial appointment with two clinicians feeling like ‘interrogation to see if I was trans’, and experienced questioning concerning their sexuality as ‘weird and not really related’.

Another found the GIC process adversarial and unsupportive:

… the service right now is designed so that a cisgender person doesn’t accidentally transition … It’s not made for trans people or to support trans people […] And I think overall it’s so infantalising …

Service user C17

Third-sector interviewees also recounted reports from trans people of a stringent policy regarding mental health within the GIC. People who disclosed any mental health condition were likely to have their assessment suspended.

There was a variety of experiences of care following assessment at the GIC. Some reported that the system for regular prescribing of hormones through their GP, with periodic blood tests and reviews by the endocrinologist, had worked well. Others felt there appeared to be ‘no formal strategy, care package, intention for looking after trans people long term’.

Experiences of private gender services and self-medication

In response to long or indefinite GIC waiting times, both third-sector workers and service users interviewed indicated widespread use of private services for accessing assessment, hormones, hair removal, voice coaching and gender-related surgery. Many people resorted to crowd funding. GPs were widely cited as refusing to enter into shared care arrangements with private gender services, for prescribing hormones or carrying out blood tests for monitoring, leading to people having to pay additional fees to the private gender service.

Several interviewees referred to an emerging pattern where trans men with sufficient funds obtained a referral from a private gender service and then paid for private top surgery in Poland.

Several interviewees described their experiences of private gender services as accepting of their own views on being trans and taking a pragmatic approach to finding out what they needed:

[an] informed consent approach … Trusting the patient I think was the biggest thing for me. The fact that they trusted what I said. And trusted that this is what I needed, rather than being interrogated for it all.

Service user C18

Other interviewees recounted how they had decided to self-medicate with hormones because they could not afford a private gender service. GPs were widely experienced as refusing to provide blood tests or monitoring in such cases, or to prescribe as a harm-reduction measure, usually giving as a reason that they could not ‘take on liability’ for a person’s health if they were self-medicating. The choice to self-medicate meant bearing the associated health risks oneself:

… it was very much I balanced the risk and the reward and on the whole, it has been a positive thing for me.

Service user C19

Experiences of general health care within general practitioner practices

One interviewee reported positive experiences of staying with a small-town GP practice they had grown up with, where the GP was willing to engage positively when they came out as trans. This person had worked with the staff to improve their understanding of trans health care, and the use of appropriate pronouns.

Many more of the experiences were negative: name changes and requests to change pronouns were not being followed through on medical records, and in one example, reception staff apparently deliberately and repeatedly misgendered someone so they felt compelled to move to a different practice.

A number of interviewees relayed accounts that GPs had attempted to refer trans people to the GIC for health issues that were not connected with a medical transition; with the GIC not functioning, some GPs had taken to referring people to third-sector LGBTQI+ or trans organisations, sometimes with physical health problems. Third-sector staff felt placed in an impossible position by such referrals.

Several interviewees reported that GPs did not know about the health conditions different trans people might be at risk of:

… what are things you can watch out for for a trans person? What are they more at risk for? Because the onus is very much on the trans person to know that … Because they absolutely know less than I know.

Service user C20

Interviewees reported there were a small number of trans-affirming and trans-inclusive practices in Belfast. However, trans people experienced huge variability between different practice staff. This created stress and disparities in the health care available to different trans individuals.

Experiences of other health services

Two interviewees reported distressing experiences of NHS sexual health clinics, contrasting this with the respect shown when they attended sexual health screening clinics run by a LGBTQI+ organisation. They were, for example, asked for their pronouns as they registered at the latter.

Others reported avoiding NHS health care in general, because they expected to encounter either or both of an insensitive and inappropriate curiosity about their history as a trans person, or else a lack of cultural understanding of:

what trans means, knowing what kind of people and bodies and physiology is covered by the term woman and man … constantly using terms like male and female and referring to body parts.

Service user C21

Some of our interviewees had found NHS counselling for anxiety or depression helpful, although limited in what it could achieve given the short programmes on offer.

Community action to improve services

Many interviewees shared a view that ‘the mainstream doesn’t want to know’, meaning that addressing the deficiencies in trans health care appeared not to be a consistent priority for the devolved administration or for the HSC service, in spite of the costs of not providing adequate care. These included above all the mental health burden carried by those unable to access any treatment, often leading to chronic suicidality as well as actual instances of suicide. There was also the increased burden placed on other NHS and third-sector services:

… it actually costs more to not fund the service because we’re seeing the impact on voluntary community sectors like ourselves or other healthcare providers or back into the NHS in primary mental health teams where people are self-harming …

Third-sector worker

Dynamics underlying poor experiences

While we heard about some GP practices that were knowledgeable, supportive, sensitive and effective in referring people to a specialist gender service, the following deficiencies were repeatedly reported by service users, in both Chapters 3 and 4.

We heard about GPs who admitted to their patients that they did not know how to refer them to a GIC, or claimed erroneously that the person needed first to have a psychological or psychiatric assessment. This process has long been superseded in England, Scotland and Northern Ireland, more recently in Wales.

A related dynamic occurs where a GP simply refuses to refer someone, sometimes explaining this in terms of the trans person not knowing their own mind, appearing to believe that referral to the GIC commits the person concerned to a medical transition. In a few cases, GPs appear to have taken their authority to base a refusal to refer on their own anti-trans beliefs. We also found cases where trans people were told they could not be referred immediately because their BMI was too high, because they had a history of mental health concerns, or because the GP saw both of these as linked. Some TBPoC we spoke to experienced their ethnicity as making it more difficult to get a GP referral, within a general picture of having to persuade their GP to take their requests and experiences seriously. They were also likely to have been told that their BMI was a barrier to accessing health care, sometimes because clinicians seemed additionally concerned about a Black person’s BMI, or because clinicians were apparently unaware of how erroneous assumptions about the universal applicability of BMI can exclude Black people.

Another pattern we heard about frequently is where a GP apparently agrees to make a referral, but repeated follow-up by the person concerned reveals that the GP has not in fact made the referral or waited weeks or even months before doing so. Still another way in which trans people have experienced their GP as departing from putting the patient’s needs first is in writing a referral statement that undermines the integrity or identity of the person concerned. An example of this was a referral letter depicting someone ‘thinking about becoming a different gender’, when the person concerned was quite clear about their gender identity.

The idea of person-centredness is often used to consider the experiences of an individual passing through a health clinic or service. Our findings show that the experience of waiting between referral to a GIC and the beginning of an assessment process has possibly the most profound negative impact on the extent to which trans people perceive themselves as recognised and considered by the NHS.

We noted in Chapter 3 that the length of waiting as experienced by service users is not merely the time elapsed since a referral is acknowledged by a GIC, or even the time elapsed since a referral was made by the GP. Many people delay asking for referral via their GP for a significant amount of time, often years, for a variety of reasons. They may have in their own minds already been in a state of waiting long beforehand. For example, an individual may wait until they are certain which medical interventions they require before seeking a referral, meaning that for them they may have been waiting many years outside of the medical system. A feeling of being in suspense can be deepened by uncertainties already referred to as to whether the referral has actually been made by the GP or received by the GIC. We heard of several cases where, after an extended period of silence from the GIC, sometimes over a year, a waiting person has managed to contact the GIC and found out that the GP did not actually make the referral, or did so months later than originally indicated.

We saw in Chapter 3 that people on GIC waiting lists experienced anxious uncertainty, often severely. Waiting was deeply difficult due to living with untreated gender incongruence, the many ways in which this put life ‘on hold’, and awareness that the outcome of their GIC assessment was not ultimately under their control. This was all the more difficult for people living in family or community contexts which were unaccepting of or hostile towards their trans identities. Many trans people found that GICs, until quite recently, failed to provide updates on the likely waiting times, and are difficult to contact to get current information about when one is likely to be seen. This uncertainty leads to fears of losing one’s place in the waiting list, through missing a letter or an e-mail, or through the clinic making a mistake and not sending a communication, resulting in a missed appointment. Many of our respondents reported feeling unable to bear the continued wait, and so taking a decision to self-medicate with hormones or go to a private gender service if they could afford that. This option was, of course, more open to those in employment with reasonable incomes, and less open to the economically marginalised, above all TBPoC.

A further, often distressing, aspect of waiting was that associated with the minimum of two or more assessment appointments required in most GIC assessment processes. While diagnostic guidelines (e.g. DSM-5)7 refer to the need for stability of gender identity over a 6-month period, the capacity issues faced by GICs and the approach adopted to managing queues has led in some GICs to much larger gaps between diagnostic appointments, with still further extended waits for subsequent surgical assessments and other treatments. We therefore heard from people who had prepared in great anticipation for an initial assessment, received a positive signal about the likelihood of a diagnosis, and then realised there was yet further waiting before they could receive treatment. The experience of many was that they had already been waiting months or years prior to their first appointment, in a state of clarity and stability about their gender identity. The additional wait seemed to be ‘for the doctors’.

Many clinicians we spoke to were deeply concerned about the waits experienced by their clients. They were, however, relatively shielded from direct encounters with the anxiety and distress of those waiting. Some distanced themselves from feeling responsible, because there was apparently little they could do to improve the situation. Others were outspoken in their criticism of the NHS commissioners of their service, for completely failing to acknowledge that demand for services – in terms of numbers of referrals received – has grown by several hundred per cent in recent years. Commissioners were seen as expecting increased demand to be met within existing levels of resources or marginal increases.

This raises troubling questions about how the NHS and those who control its funding can tolerate waits of several years for trans people to receive treatment. Following the COVID-19 pandemic, there are widespread concerns when some physical health outpatient services have perhaps 8% of people on their waiting lists waiting a year or more for consultant-led treatment. 117 In mental health services, the proportion of people in 2020 waiting more than 6 months for assessment and treatment was 11%. 118 The only waits that approximate those for gender-affirming treatment were those for treatment for severe mental illness, commonly up to 4 years. All trans adults currently being referred for GIC appointments can expect to wait at least 4 years. We return in the final chapter to the societal dynamics that may underlie this.

The severity of the extent of waiting for GIC care is borne out by some ICTA modelling (reported separately) on a number of realistic GIC staffing models, based on typical current rates of referrals and referral backlogs. With some loosening of current assumptions that all people require two assessments before they can be prescribed hormones or receive other gender-affirming treatments, it appears that even with staffing at around 1.5 times that needed to meet current demand, the queues of people waiting will not be drained for between 3 and 4 years. The acceptability of such waits is widely challenged within trans and LGBTQI+ communities. This has also been taken up in a legal case by social justice campaigners,119 arguing that NHSE should honour the 18-week target time from referral to treatment for trans health care. The basis of the case is that failure to do so stems from an ideology that trans needs for health care are less urgent than others, linked to a belief that trans people should have plenty of time to achieve certainty. Our data from service users do not bear this belief out. Across our sample of over 100 service users from the various subpopulations reported in Chapter 3 and the case studies in Chapter 4, few appeared to arrive at their GIC assessments without a clear sense of their direction. Our interviews and consultations with trans people involved in the project also strongly suggest that those who do wish to take some time to explore their gender identity want to do so on a timescale much shorter than the waiting times currently typical of GIC pathways. Service-user interviews and focus groups provide ample evidence of the distress and indeed harm caused by waiting.

Learning from initiatives to improve access to more integrated transition-related care

Case Studies 3 and 4 in Chapter 4 both indicate that trans-informed training can result in GPs understanding how to respond helpfully and straightforwardly to requests from trans adults to be referred to a specialist gender service. However, even when some GPs in a practice have received training and shown they are able to make referrals, some of our service-user interviewees encountered other GPs in the same practice who were not well informed and made the process of referral unnecessarily difficult and stressful. The implication is that training needs to be readily available to all practice staff, both clinical and administrative, with an expectation that everyone will undertake training at least in the essentials of trans health care and referral pathways. Case Study 3 provides some evidence of the benefits of an accreditation system for badging competence in trans health care. It also suggests that periodic reviews of consistency in competence and knowledge across staff in a primary care practice are needed to ensure that trans people get the specialist referrals they are entitled to according to General Medical Council (GMC) ethical guidance. 120

Case Study 4 illustrates the value of having a framework for working relationships between a regional GIC and primary care practices, based on a network of practices that act as local centres of expertise. This network can be used to deliver advice to primary care practices experiencing uncertainty as to how to refer. In other contexts, we heard of primary care practices experiencing English GICs as unresponsive to requests for advice concerning referrals or the management of people waiting for GIC assessment. This was probably in part because English GICs all take referrals from any GP practice across the country, and, at least at the time of fieldwork, only a few areas had developed local networks of primary care expertise in trans health care for GPs to draw on.

The widespread experiences of people having difficulty gaining access to transition-related care reported in both Chapters 3 and 4 highlight the importance of third-sector services, employing mainly trans staff to provide support and advocacy for gaining access to care. Case Studies 3 and 4 in Chapter 4 illustrate the role of such services for people who simply want information on how to get a referral to a gender service, or who are experiencing barriers in getting access to care they have a right to, in particular bridging prescriptions. 121

In Case Study 4, third-sector workers brokered arrangements by which NHS LGTs prescribed hormone therapy for people who had been assessed by a private gender service, and provided blood tests to be monitored by the private service, under a shared care arrangement. This was crucial when the person’s usual GP had refused to participate in shared care. Similarly, in this same case, third-sector workers put people in touch with their LGT to provide a bridging prescription when they were self-medicating. There is a strong indication that the integrated way of working of the WGS, with regular meetings between staff from the specialist gender clinic, the LGTs and the third-sector support organisation, plays a key role in maintaining the standing and influence of the support staff within the system. It also allows the system to bring expertise to bear rapidly in assessing whether medical issues might complicate giving an individual a bridging prescription. This allows third-sector staff to be effective advocates in helping people access care. An implication is that support service staff, and in particular trans peer-support staff, need to be fully included as fellow professionals in the operational decision-making and development of a gender service.

A further useful mechanism at the point of referral to a GIC, emerging from Case Study 2, is a detailed MoU, issued by the receiving GIC, setting out GP and GIC responsibilities in the initiation and management of HRT. This is thus a tool for integrating care across the primary care–GIC boundary. Case Study 2 suggests this can be effective in dealing with GP resistance to hormone prescribing, through GIC staff intervening with the GP at a relatively early stage. However, in at least one case it led to the service user concerned being held in suspense while their GP practice took several weeks to agree to sign the MoU. This suggests the MoU on its own may have limited effectiveness and could create additional barriers to care, if not reinforced by education of GP practices on their responsibilities for supporting trans patients.

The challenges of being referred to a GIC and having the framework for shared care agreed between a GP and a GIC are, of course, only part of the picture emerging from our research about the difficulties trans people face in accessing care. It is important to note that the GMC ethical guidance for GPs in trans health care120 indicates that it’s a GP’s responsibility to support people while waiting for GIC assessment, referring them to a mental health service if they have concerns on that front. Our research did not uncover any examples of GP practices able to put such supports in place. And across our interviews there is strong evidence that many local mental health services are not well equipped to support trans people in general, including when experiencing distress during the extraordinary wait involved.

Our case studies indicate some learning about how third-sector trans peer-support workers can deliver support during waits. However, support appears more difficult to deliver with integrity when all concerned are aware that it does not deal with service users’ main concern, the months and years they have to wait.

Case Studies 2 and 4 show how peer-support workers have delivered a number of forms of support: practical support, with issues such as using a deed poll to change one’s name; emotional support for people experiencing isolation, distress, or having difficulties with family relationships or housing; social support, for people who want access to trans-led events, activities or groups; and information about the GIC assessment process, including where people are in the waiting list and what to expect in clinical assessment appointments. Peer workers have achieved this through one-on-one support meetings, often by phone, and through facilitating trans groups and activities. The positive experiences of the trans swimming group described in Case Study 2 suggest that such trans-led group activities can deliver important contributions to well-being. Funded trans peer workers have a vital role in understanding community needs and then brokering the funding and delivery of activities that meet them. This, however, needs to be set in the context of the need for much better access to both transition-related medical care and adequate mental health services. Peer support is not a substitute for either, and needs to avoid transferring unreasonable responsibility for providing care to lower-paid trans community members.

The case studies also indicate issues involved in providing peer support to people waiting for assessment. First, staffing needs to be adequate. The level of demand for this kind of support is indicated in Case Study 4, where we heard that around 700 out of 1000 people on the waiting list indicated that they wanted to talk to a support worker, whereas a single full-time-equivalent peer-worker post was actually able to engage with around 300 people over roughly a 12-month period. The consequence, seen in both cases of peer-support services, was that response times were considerably longer than the workers considered desirable.

Second, we saw that it may be difficult for peer workers to contact people on waiting lists, particularly if people have been waiting for months or years and their contact details are held by the NHS GIC. Data protection requirements mean that an NHS organisation has to seek consent before passing any details to a third-sector support organisation. Third-sector LGBTQI+ organisations may have highly developed skills in soliciting contact through social media and attending existing trans events and forums. However, there remains the challenge of contacting more isolated trans people who do not attend events or use social media. These may be the people who are most in need of support.

Third, we saw evidence that the role of peer workers involves considerable social skill in navigating a kind of ‘dual belonging’, to trans communities and to an NHS-based system of care. Peer workers may be called on both to explain what is involved in an NHS assessment, and to hear the distress of people who have been waiting an unreasonable amount of time and do not feel their ‘transness’ requires extended assessment. Peer workers can experience themselves as deeply compromised in their ability to advocate for people, when employed by a GIC with power over the timescales by which people can be recognised as trans, and ultimately over whether this recognition is bestowed. This situation is made less stressful when peer workers have some agency and influence within the GIC system. This may take the form of having ready access to information on how to access bridging prescriptions and to the clinicians involved, or access to the NHS administration of waiting lists. The latter allows them to respond with clarity to someone anxious about their position on the waiting list.

A final area of challenge that remains to be addressed concerns the common lack of local mental health services adequate to support a trans person on a GIC waiting list who is experiencing mental health difficulties. Peer workers may be trained in how to identify someone who needs more than the kind of emotional or social support they themselves can provide. However, the lack of effective mental health services that someone can be referred to places peer workers – and their clients – in a very difficult position. We return shortly to the implications for how mental health services need to develop.

Dynamics underlying negative experiences of assessment

In Chapter 3, we summarised the characteristics of trans people’s negative experiences of GIC diagnostic assessments. A significant number of service-user interviewees found that their experience of GIC diagnostic sessions strayed, to varying degrees, beyond the bounds of what could be interpreted as ‘person-centred’, becoming adversarial and even hostile. A common aspect was being asked the same questions on multiple occasions about childhood, family background and a person’s sense of their gender at different points in their life. Some experienced this as being under suspicion, that clinicians were trying to catch them ‘in a lie’ or find a flaw in their ‘story’ of being trans. This kind of repeated questioning can amount to a microaggression44 because it belittles a trans person’s account of themselves through asking for it repeatedly, rather than joining with their first-person authority. 53 It also serves to undermine the development of a collaborative relationship between trans person and clinician, rather leading to one where the trans person chooses to offer or withhold information strategically, based on what they believe the clinician will respond positively to, leading to a desired result.

A more serious failure of person-centredness occurs in some of the accounts we heard. In these, people experienced themselves as questioned in-depth about a history of childhood sexual abuse, and then confronted directly with the proposition that their trans identity is the result of this. In Chapter 3, we discussed the lack of evidence to support the link between childhood abuse and trans identity, and the danger of further stigmatising trans people through implying it. Interviewees experienced this as unrelated to the issues they were currently facing in moving forward as a trans person, and distressing and destabilising in restimulating earlier traumas, often without appropriate support. Similarly, intense questioning about their difficulties in being accepted in family, school or other social contexts could leave people feeling vulnerable and unsupported.

It is possible to relate the potential for harmful interactions of this nature to the frameworks of guidance and institutional frameworks within which GICs are expected to operate. These were summarised in Chapter 1.

These can be seen as placing contradictory pulls on clinicians’ roles and accountabilities.

First, clinicians are charged within the NHS service specification with diagnosing whether someone has gender dysphoria, in the face of evolving guidance and standards that have moved away from the idea that being trans is a mental health condition or any kind of disorder. Davy and Toze122 point out that the diagnostic criteria for gender dysphoria set out in DSM-5 do not clearly separate out the diagnosis of distress from the identification of a trans identity when distress is not present. They further argue that the evidence for the reliability of the symptoms listed as indicating gender dysphoria is at best weak. Since no underlying research evidence has ever been made available by the APA working group responsible for DSM-5, the published criteria are ‘primarily reliant upon clinical consensus’, which is considered by the APA as a relatively weak form of scientific evidence. 122

Second, clinicians are expected to challenge a person’s sense of their gender identity. They should consider whether there are ‘alternative mental health diagnoses’ that might apply. The Royal College of Psychiatry Good Practice Guidelines12 seem to recommend lines of investigation that suggest looking for the cause of a trans identity in childhood trauma or some form of sexual repression. We have already referred to scholarly critique of the latter idea and in Chapter 3 to critique of there being a link from childhood trauma to a trans identity. Further, we note the lack of reference to evidence of mental health conditions that might explain a trans identity in any of the four guidance documents summarised in Chapter 1. Clinicians we spoke to were all clear that when people decide to detransition, not only is this extremely rare, but in most cases this is because of family or community hostility to their trans identity.

Some clinicians we spoke to were very aware of possible legal challenges to their diagnostic decision-making. Such concerns may be reinforced by NHS Trust management anxious to avoid future litigation when someone may claim they should not have been deemed by an adult GIC as able to give informed consent to gender-affirming treatment. While this led some clinicians to emphasise their responsibility as diagnosticians, it did not appear to alter their view that misdiagnosis was very unlikely.

A further layer of explanation of the distressing nature of many of the assessment experiences we heard from trans people may lie in clashes of understanding about what it is to know that one is trans. Riggs et al. 38 analyse the history of the development of gender services and the very limited role of trans people in the shaping of frameworks, standards and services. They argue that trans people have gained access to gender-affirming treatment through a shifting series of compliances with norms of what it means to be trans, referred to as transnormativity. For example, the notion of the ‘transsexual’ and the transition from a ‘male sexed body’ and gender role to a ‘female sexed body’ and gender role, underpinned the services offered by the early GICs in the USA and UK from the 1960s onwards. Riggs et al. trace this to the influential work of Harry Benjamin,123 a white, male and cis psychiatrist. While the role of trans people as activists in creating the social environment needed to recognise these services was significant, and there were a few prominent trans supporters, including funders, there was little or no trans professional input. The understandings of trans identities in the diagnostic guides described in Chapter 1 are arguably mainly those of cis professionals. Riggs et al. identify as central the underlying assumption that trans identities needed to be diagnosed by a professional from the ‘psy establishment’. 123 They further argue, drawing on Pearce,124 that ‘to obtain the treatment they sought, patients needed to first articulate their experiences in a manner that would be taken seriously by the predominantly middle-class, White, cisgender male psychiatrists and clinical psychologists who oversaw these institutions’. 123 We found very similar perceptions among many of our interviewees.

As we discussed in Chapter 3, Bettcher53 argues for a more radical break with the idea that professionals have the authority to pronounce on whether someone is trans. She proposes that trans identities should move beyond transnormative ideas rooted in the societal norm or ‘natural attitude’, where one’s male or female gender identity and role signify which kind of genitalia one possesses. Rather, identities stem from the first-person authority of a trans person’s account of their gender identity and the bodily, social and medical actions they want to take to express it.

This perspective suggests how we can understand the distressing experiences of GIC assessments within our sample. Trans people may encounter clinicians who, in pursuing a line of inquiry that seeks to find an ‘alternative diagnosis’, seem unable to take in what the trans person is saying about themselves. Further, clinicians may ask questions that trans people experience as an unwarranted invasion of confidential matters concerning their sexuality. Such assessment experiences stifle rather than enhance exploration and development of trans identities, sometimes becoming mired in an enactment of transnormativity, as service users try and second guess what clinicians are looking for, to enable their treatment. There seems to be a fundamental clash between some forms of psychiatric or psychological practice, based on the idea of expert diagnosis of a disorder, and the kinds of knowledge about self and its expression through the body that trans people develop. This can be seen as underlying the distress that many of our interviewees expressed at having to account for themselves to cis clinicians who have the right to pronounce on whether they are actually trans. Where this clash comes to the fore, any notion of ‘person-centredness’ goes by the board. As Bettcher53 puts it, the trans person experiences a denial of authenticity, of their own account of themselves as trans.

Learning from an initiative with collaborative assessment

A central aspect of Case Study 4 in Chapter 4 concerns the approach to assessing people for access to gender-affirming care, including hormone therapy, which differs significantly from the negative elements of psychiatric diagnostic assessment described above. It has clear advantages in setting a person-centred approach, and is also consistent with the more positive and collaborative experiences of assessment summarised at the end of Chapter 3. We return shortly to the links between this approach to assessment and a more person-centred and co-ordinated way of managing the initiation and stabilisation of HRT in primary care.

There are three main respects in which this approach to assessment emerges as beneficially patient-centred. The first is that, for many people, the assessment can be considerably shorter than we heard was common experience with other GICs. In the GIC in Case Study 4, assessments can be based on a single assessment appointment with a single gender clinician. We heard that around half of the people entering assessment had a treatment plan after a single assessment, because their treatment goals were clarified, and there were no complicating medical issues. The fact that blood tests were easily arranged through local primary care practices integrated with the gender service made it straightforward to clarify if there were endocrinal issues. We return shortly to the issues raised by clinical decisions to extend an assessment with one or more further appointments.

The second and perhaps most important aspect concerns the collaborative and gender-affirming approach used by clinicians in interacting with the person being assessed. Clinicians emphasised their respect for trans identities, their focus on jointly clarifying treatment goals based on sharing information about options, potential benefits and medical risks. They recognised they needed to screen people for mental capacity to understand treatment options and consent to them, but did not, for example, foreground exploration of past trauma as a possible ‘alternative explanation’ of a trans identity. They also recognised and sought to minimise the inherently traumatic nature of any kind of medical assessment for a trans person, who will almost certainly have suffered repeated microaggressions in past healthcare encounters.

Clinicians also sought to relate to service users in ways that de-emphasised differences in power, rather than directly asserting their medical authority and knowledge. Shuster (p. 195)125 draws attention to the importance of clinicians working collaboratively with trans people’s own knowledge and experience on issues such as the effects of hormone therapies, avoiding claiming spurious authority and maintaining humility about the extent or reliability of medical knowledge on many aspects of trans health care, including, for example, the long-term effects of HRT.

The third beneficial aspect of the assessment process concerns the use of videoconferencing for the assessment appointments themselves, combined with basic physical data and blood work collected from the person during a separate trip either to their own GP or gender-specialised primary care clinic within their locality. This way of working emerged in part in response to the restrictions of the COVID-19 pandemic, but places much less of a time and travel burden on the person being assessed. This contrasts with some of the experiences reported in Chapter 3, of people having to travel long distances at considerable expense to attend a GIC assessment, often worrying that transport difficulties will result in missing their appointment and losing their place on the waiting list.

Overall, this assessment approach appears to have been experienced as low in stress for the limited number of service users experiencing it we were able to interview. The emphasis on collaborative decision-making, fostering of mutual trust and exchange of knowledge in the clinician–service user encounter, and joint exploration of desired effects and risks of treatment, are markedly similar to the assessment approaches documented by clinics in the USA126 and Australia127 which espouse an ICM. As we saw in Paradigm 3 for the future of trans health care in the last chapter, under an ICM no formal diagnosis of gender dysphoria is required in order to access gender-affirming treatment. In these examples of ICMs, assessment by a clinician still takes place but its focus is on sharing relevant information and establishing that the person concerned has mental capacity to consent. 28

Clinicians in Case Study 4 recognised that they were practising a gender-affirming approach to assessment within a formal NHS context that required them to give a diagnosis of gender dysphoria. They were not working formally within an ICM. Yet, in a variety of ways, they distanced themselves from the idea that they were working according to a psychiatric diagnostic model. They variously described the diagnosis itself as ‘tokenistic’, ‘something that surgeons like to see’, or an indication of ‘governance for the decisions we make with patients’. They can be seen as conforming with ambivalence, even reluctance, to some of the requirements of the institutional field they were operating within. 47 At the same time they can be seen as holding themselves accountable to other emerging institutional pressures, in the sense of socially held bodies of knowledge as to what are acceptable ways of practising. 128 While we did not collect data directly on the content of the regular consultations between the gender service in this case and representatives of trans communities, these can be seen as a way of institutionalising how trans voices and trans community knowledge can be involved in the articulation of a respectful and productive approach to assessment. And the collaborative approach to assessment can also be seen as drawing on parts of institutional guidelines such as the ‘Good practice guidelines for the assessment and treatment of adults with gender dysphoria’12 and the international WPATH Standards of Care Version 7. 13 This selective use of existing institutional supports and engagement with new networks and norms can be understood as part of a process of innovation and moving towards new norms of trans health care, as has often happened in other areas of health care. 48 We may speculate that future institutional guidance for trans health care will continue to move to a much clearer espousal of collaborative and non-pathologising processes of assessment, that recognise the authenticity of trans identities and experience. The emerging evidence of the benefits of the assessment approach in Case Study 4 supports such developments.

This case study also revealed learning as to substantial issues that need to be addressed in developing this kind of model. Above all, it raises ethical concerns about how to avoid collaboration being on offer to the more privileged and medically articulate, but overridden by medical authority for trans people who are seen as in some way less trustworthy or less able to explain themselves.

One set of issues concerns the basis upon which decisions are made that someone will need a more extended assessment, including at least one further appointment with a gender clinician. It was not possible in our interviews with clinicians to explore in-depth how far such decisions to extend assessment could always be collaborative, as opposed to in effect required by the clinician. The prerogative of an assessing clinician to require a second appointment raises concerns in the light of experiences reported in Chapter 3 of extended assessments over which trans people felt they had little control, and for which there did not seem to be valid reasons. Some older trans people reported how they were required to attend a series of assessment appointments, apparently because they had not transitioned at an earlier age; some chronically ill people were also given additional GIC assessment appointments. TBPoC reported their assessments at GICs becoming complicated over issues because their chosen, culturally meaningful, name apparently did not convey a sufficiently binary gender identity. In Chapter 4, the NI case study also reported how some people avoided disclosing mental health concerns because they judged it would lead to a more extended assessment. There was also evidence of this in Case Study 2.

In discussing and interpreting findings from across the ICTA project, members of the PPI group and other trans people involved in the research or as advisers have raised strong concerns, based on trans community experiences, about the way clinician prerogative to extend assessments can be used. The concerns are twofold: first, distorted clinician perceptions of the risk involved in gender-affirming treatment; and second, a tendency for some clinicians to fall into a kind of ableism that sees certain groups of trans people, regrettably often those most stigmatised, as not able to know their own minds or best interests. We briefly explore both these areas of concern below.

In terms of perceptions of risk, some cis clinicians emphasise the need to take time over an assessment to be sure that a person will not regret their transition, or to establish whether there could be an ‘alternative explanation’ of gender incongruence stemming from a mental health condition. The rationale is that it is necessary to protect an individual against the risk of undergoing gender-affirming treatment that they might later regret. However, medical practice takes a more accommodating stance on the risks of possible regret taken by cis people who are keen to undergo plastic surgery or fertility enhancement, for example. Psychological evaluation is not required for either treatment. Further, many cisgender clinicians do not appear to take similar account of the risks of delaying gender-affirming treatment in terms of mental health deterioration. These risks are apparent in some of the service-user experiences reported in Chapter 3.

Possible explanations of this particular way of evaluating the risks associated with hormone therapy lie with the social stigma still widely attached to being trans, the lack of value attached to trans identities in a cis-normed society28 and indeed the possibility of clinicians being subject to hostility in the media or in a legal context, from anti-trans individuals or groups. However well-intended, cis clinicians can experience themselves as held accountable for validating someone’s trans identity in the face of anti-trans currents in society, which view being trans as something best avoided and likely to carry a risk of regret in the future. This view is not supported by reviews of outcomes of gender-affirming treatment. These have repeatedly demonstrated the widespread benefits to mental health, the very low incidence of regret, and that this is most often linked to poor surgical outcomes or experiences of social stigma or rejection. 129

Second, there is concern that cis clinicians can make decisions about delaying or even denying access to gender-affirming care based on what has been called ‘subtle ableism’. Shuster125 found that even within US clinics that espoused informed consent for accessing trans health care, clinicians could fall into reasserting their medical authority because they distrusted the rationality of their trans clients:

Justifying their rationale was the subtle ableism that providers brought into the clinical encounter with trans people. In asking their patients to resolve mental health issues first, or referring to mental health issues as a ‘co-occurring’ conditions, [they] revert back to paternalistic medicine where ‘doctor knows best’. 125

Related concerns have been expressed by trans people within our extensive sample of interviews and reinforced in consultations with members of trans communities. These include that clinicians can misinterpret someone’s uncertainty about treatment goals, or uncertainty as to whether they have a binary or non-binary identity while still being sure that they want hormone therapy, as an indication that a diagnosis should be delayed. Further, such situations may arise for autistic people, people with learning difficulties, people with mental health conditions or who use substances, and people who live in trans-hostile family settings or communities. This can lead to these most vulnerable groups being subject to additional scrutiny or even denied transition-related care.

Further research is urgently needed to clarify what forms of assessment are appropriate for these groups of trans people who clinicians may see as having an impaired ability to understand and consent to specific treatments. These are groups who typically experience multiple forms of stigma across many settings, including health care. Addressing these inequalities requires developing forms of assessment which do not discriminate unfairly against them in accessing gender-affirming treatment. Such forms of assessment need to balance giving access to treatment with thorough and collaborative exploration of intended goals, likelihood of benefits as well as the medical and social risks. Assessments also need to identify needs for additional social and psychological support to accompany gender-affirming medical care. The integrity of such forms of assessment will depend on the availability of these additional forms of support, in contrast to the stories of limited support reported in Chapter 3.

It is worth noting that these issues in assessment for trans people in groups subject to multiple forms of stigma may be just as pressing for gender clinics working explicitly within some versions of an ICM. 28 Such clinics have been functioning in the USA for many years29,115 and more recently in Australia, and operate within published protocols, which are compatible with the WPATH Version 7 Standards of Care. 13 While emphasising collaborative and patient-centred decision-making, these protocols also require the assessing clinician (usually a GP) to screen for mental health conditions and recommend referral as needed to a psychologist before prescribing hormones. 126,127 In recent research in an Australian clinic working within this framework, levels of user satisfaction with care were high, but slightly lower among the 8% of service users asked to undergo assessment with a psychologist before receiving gender treatment. 116 The grounds given for most of these extended assessments concerned a recent history of post-traumatic stress disorder or schizophrenia. The Callen-Lorde protocol126 similarly allows for extended assessment in cases where the clinician judges that the person is not yet able to give informed consent.

Dynamics underlying poor experiences

Across our case studies and interviews with the national sample of service users, we heard many examples of GPs who refused to prescribe hormones recommended by private gender services, or to prescribe bridging hormones for people waiting for assessments, on a harm-reduction basis, despite guidance on how to do so from GIC websites and national bodies. 12 This refusal affected people who were self-medicating and others who had been receiving hormones via a private gender service that proved no longer viable.

We also heard some examples of people whose GPs refused to sign a shared care arrangement with a GIC, with GIC clinicians monitoring blood hormone levels and recommending what should actually be prescribed. Sometimes initial refusal to be involved in shared care led to delays in hormone prescribing. All of these can be seen as GPs refusing to take up a role in a nationally specified model of co-ordinated care for trans people, leaving the person concerned anxious and unsure how their care is to be carried forward. The cause in all of these circumstances appears to be GPs feeling that any involvement in prescribing hormones for trans adults is beyond their competence and an unreasonable responsibility for them to shoulder – even if specialists are also involved. This is borne out by several of our interviews with more enlightened GPs, who expressed frustration that many of their colleagues appear swayed by spurious fears about links between hormones and cancer or thromboembolism, based on problems with earlier forms of HRT prescribed to cis women.

More generally, both service users and GIC clinicians reported breakdowns in the process of administration of hormones. GPs or practice nurses might fail to recognise specific hormones being prescribed or to understand their role in administration or monitoring. Even going to the retail pharmacy to pick up what had been prescribed could be a fraught experience for a trans person. There was the possibility – and in some cases the actuality – that the pharmacist would require an explanation, in earshot of whoever was listening, as to why a hormone was being prescribed to someone who did not appear to fit with the licensed use.

A separate but related issue occurs where someone who has been discharged from GIC care and has been receiving prescription hormones for an extended period, then relocates and signs up with a new GP practice. They may encounter a GP who simply refuses to continue a long-established repeat prescription.

A related breakdown in care co-ordination concerns flows of information needed to review and manage hormone therapy under a shared care arrangement between a GP and a GIC. We heard both from service users and GIC clinicians about repeated difficulties in GIC clinicians obtaining in good time the results from blood tests carried out within a GP surgery, prior to consultations intended to review dosages. Service users reported that changes to dosages that were important to their continued transition and well-being were being postponed until the next scheduled appointment usually months ahead. GIC clinicians felt that a significant amount of their time was spent chasing blood test results to get them in time for an appointment.

We also heard about a reciprocal dynamic, with problems about information flows from GICs to GP practices. Service users were also often uncertain and anxious about when or indeed if their GP practice would hear about a recommendation from the GIC to change a hormone prescription or dose. Several reported resorting to carrying documented details of the change physically into their surgery and making sure they were passed to their GP.

Learning from initiatives to improve hormone therapy initiation and management

Case Study 4 in Chapter 4 reports on the establishment and initial development of regional primary care clinics, spread across Wales, which take responsibility for prescribing and monitoring HRT for trans adults following assessment at the specialist gender clinic. This is the most significant initiative we studied to address lack of integration between an assessing gender service and arrangements for prescribing and monitoring HRT. The key features are as follows. Their effectiveness and efficiency would appear to be of wider relevance to other gender services and NHS primary care commissioners.

The regional clinics were largely staffed by GPs, located within established GP practices and funded by the local NHS. They took responsibility for prescribing hormones, monitoring blood tests and titrating doses immediately following assessment, aiming to pass service users on to their usual practice after around 12 months, on the basis that their doses and prescriptions would by then be stable. This arrangement avoids the costly and damaging difficulties in communication between GICs and primary care practices over blood tests and dosage changes, experienced by many people attending other GICs. It also frees up gender specialists to devote more time to assessments, rather than review appointments for people already on hormones. Local clinicians, however, worked in an integrated way with their specialist colleagues, attending joint training on trans health care, and holding regular joint clinical consultations.

Further advantages emerging from this arrangement include the regional clinics rapidly becoming established as having GPs confident in prescribing under shared care with a GIC, whether based on a full GIC assessment or on the basis of a ‘harm reduction’ bridging prescription. These more knowledgeable GPs can then advise and educate colleagues in their own and neighbouring practices. Above all, both service users and GPs involved in these regional clinics were enthusiastic about how they brought HRT for trans people into the mainstream of primary care. Doctors in the regional clinics helped service users deal with a range of health issues, and hormone therapy came to be experienced as part of primary care, rather than something specialised, difficult, or in any way stigmatised.

The development of these regional clinics at the time of fieldwork raised some issues that remain to be resolved. Significantly, a DES arrangement was created, to provide a contractual basis for local GP practices to take on service users with stable hormone prescriptions once they were discharged from the regional clinic. However, there appeared to be low take-up of the DES in some regions, possibly because GP practices experienced a combination of the national staff shortages and increasing workload as other clinical areas have responded to NHS-wide policies of transferring more care for chronic conditions from secondary services to primary care. Lack of widespread primary care education about the relatively straightforward realities of much trans health care also appears to have played a role. While the arrangements in Case Study 4 were not at the stage where there were many service users as yet ready for transfer from the regional hormone management clinics, the need to increase the capability of the wider GP system to manage hormone prescribing remains a pressing issue for the near future. The idea of GP practices nominated to provide trans healthcare expertise for a locality, acting as a kind of hub for a cluster of other practices, emerged in both Case Studies 4 and 5 as an interim step. This would ensure that, if a trans person found their existing GP practice unable to support them, they would not have to travel far to find one that could. The increased use of videoconferencing and telephone appointments in health care generally during the pandemic can also be a means for increasing the accessibility of trans-inclusive health care across localities.

The trans-led primary care TAS reported in Chapter 4, Case Study 3, indicates how wider GP capability in trans health care can be strengthened. In particular, the linking of higher levels of accreditation to competence in hormone prescribing for trans people, including bridging prescriptions, appears to have been effective in motivating GP practices to increase their capability. Case Studies 3 and 4 both suggest that GP motivation to engage with trans health care is often linked to a general commitment to be inclusive and overcome health inequalities. This suggests directions for promoting trans healthcare training and competence development. A further enabling factor appears to be the ready availability of backup expertise in areas such as HRT. While the conurbation GP practices in Case Study 3 were frustrated at their difficulties in communicating with GICs, they were able to tap into local networks of GPs who had taken a lead in trans health care, as well as an emerging regional primary care-based specialist gender service. This suggests that primary care TASs need to be linked to local sources of specialist expertise.

Finally, a consistent theme of difficulty across a range of attempts to improve the integration of hormone therapy with GIC assessment concerns lack of integration of electronic patient records. In Case Study 2 in Chapter 4, a GIC achieved limited success by adopting one of the most-used digital systems that allows primary care practices to share patient records and notes with a secondary or specialist clinic. This facilitated ready communication of test results, revised prescribing recommendations and the answering of queries between GPs and gender specialists. The coverage of primary care practices using this ‘shareable’ system nationally was not, however, extensive enough to avoid common situations where test results had to be chased by clinicians, or service users had to lean on their GPs to catch up with changed prescribing recommendations. Even in Case Study 4, where there was some organisational integration between the regional prescribers and the central specialist service, the primary care patient record system could not fully support the level of clinical collaboration taking place. Much of this had to be carried out and documented by e-mail. Problems of lack of digital support for integrated working are not peculiar to transition-related care for trans people. It will be important for gender services and their primary care collaborators to learn from solutions emerging in other branches of health care.

Trans healthcare dynamics with negative impacts on mental health

In Chapter 3, we reported data from the ICTA national survey of over 2000 trans adults as to the disproportionate mental health burden commonly experienced by trans people. We saw, for example, that the occurrence of people within the sample who had received treatment for severe mental health conditions from community mental health teams was over ten times the prevalence in the general population.

We also presented evidence from our data as to the causes of this amount of mental illness. Interviews and focus groups with trans people revealed the impact of pervasive transphobic interactions in society and the unfortunate role of health services in adding to this to the extent of causing harm, sometimes manifestly damaging mental health and sense of well-being. Interviewees described experiencing in healthcare settings the same transphobia and microaggressions as in other social contexts, and how this led them to mistrust healthcare providers, leading in some cases to a spiral of deteriorating mental and physical health. Microaggressions included being misgendered, deadnamed or subjected to transphobic assumptions (e.g. about sexual history). More subtle undermining could take the form of health professionals being overly curious or questioning about trans status when transness was not medically relevant, or making presumptions about trans health or identity that effectively dismissed a trans person’s knowledge of themself.

We have already in this chapter reviewed the mental health burden placed on trans people by their multiyear wait for specialist care, and by further waits during the process of assessment. We have also discussed how the process of making a gender dysphoria diagnosis, carried out in non-collaborative mode, can itself be a microaggression, because people experience having to prove their trans identity. In Chapter 3, we argued that this creates negative mental health impacts.

Chapter 3 further brought out the kinds of affective and interpretative labour that trans people commonly have to engage in, in order to get the care they need from both transition-related and other branches of health care. The demanding nature of this labour places people under further stress, particularly for the most marginalised who may find the barriers to accessing care are more pronounced and the dangers of not getting the care they need more distressing.

Across the service-user interviews and focus groups reported on in Chapters 3 and 4, we found a significant number of trans people articulating a further unmet need in terms of the kind of mental health support available to them from health services. This concerned the need for ‘gender counselling’, a place to explore their gender identity and/or feelings about how to express it more fully, bodily and socially. This crucial unmet need stemmed from widespread assumptions that this kind of open, person-centred exploration would not be possible with a professional who was also carrying out a diagnostic assessment, or even with one who was not actually responsible for diagnosis but still worked for a gender assessment organisation, such as a GIC. Some people were aware that they might receive some helpful independent counselling from a third-sector LGBTQI+ or trans organisation, but that they would otherwise struggle to find or afford the kind of counselling help they sought.

Learning from initiatives to improve and integrate mental health support

One of our ICTA case studies concerned the provision of psychological support within a GIC. It reveals learning as to what is possible in terms of improving mental health and well-being support during the process of assessment and beginning gender-affirming treatment. It also indicates unresolved issues and unfilled gaps in mental health support.

In Chapter 4, Case Study 2, we saw that groups, both face-to-face and online, can be devised using trans-affirmative enhancements to established group therapy techniques such as CBT. Such groups can help emphasise a sense of connectedness between participants, who are likely to be experiencing a degree of social isolation in their day-to-day lives. They can also facilitate the sharing of knowledge and expertise about how to tackle everyday challenges of trans lives, and encourage people to experience compassion for themselves and others about progress with such struggles. Groups of this kind have been designed and delivered by cis clinicians, but informed by consultations with a panel of trans service users.

The achievements of such groups, however, need to be set in the context of the breadth and depth of mental health need within the trans population. Groups of this kind are targeted at trans people experiencing relatively mild forms of anxiety and depression. The extent of more severe mental ill health within the trans population indicated by our survey indicates significant need that this kind of group work does not claim to address.

Psychologists working with the GIC concerned were clear that more severe mental health conditions needed to be met by other, general NHS mental health services, such as Increasing Access to Psychological Therapies and Community Mental Health Teams. There were, however, significant problems of co-ordination of care. We saw that people often came to the GIC having had very negative experiences of general mental health and psychotherapy services – for example, being told that their trans identity meant they could not be treated by a mainstream mental health service. In response, GIC psychologists formulated referrals for trans people to their local mental health services, asserting their needs and that the local mental health service was the appropriate place to address these needs. GIC psychologists claimed to have been successful with this approach. However, they also expressed concern that many clinicians in mental health services lacked understanding of how to work with people who experienced minority stress and transphobia in particular. This suggests that lack of availability of NHS mental health services appropriate for trans people who most need them continues to be a major concern.

We also heard about the availability of individual counselling within a GIC, to help people explore unresolved issues concerning their transition – for example, how to work with difficult family or other relationships. Based on the limited number of service users we interviewed who had experienced this, this kind of support helped trans people address the social and psychological aspects of their transition. As with the psychology groups, people who participated in receiving support after receiving diagnosis were able to do so with little apparent anxiety that whatever they disclosed to staff would affect their continued access to gender-affirming care. However, there was evidence across our service-user interviewees, and also from some clinicians, that service users do not feel safe disclosing or discussing complex facets of their identity to anyone involved in their diagnostic assessment, or to anyone who might be involved in team discussions about them. Further, some clinicians are painfully aware of the difference between being in an assessor role and in a therapist role. The implication is that effective psychological support for trans people needs to be clearly separated from the system for accessing gender-affirming care.

Experiences of general practitioner practices

Throughout our service-user data, as reported in Chapters 3 and 4, while we heard some examples of highly effective care received from GP practices, we heard many more examples of trans people experiencing various ordeals. This could lead them then to avoid health services in general, with potentially highly damaging impacts. We have already discussed the common difficulties in obtaining a referral to a GIC. Beyond this, many people experienced being misgendered by receptionists and clinicians, having difficulties in changing their name and pronouns in their patient record, and not being referred for cancer screenings that were appropriate for them because the practice had not taken account of their trans status. Above all, in Chapter 3, we noted the cumulative impact of repeated microaggressions of this nature on trans people’s mental health. These microaggressions are likely to be compounded and particularly severe for TBPoC and also particularly significant for trans people living in rural contexts, who may effectively have no choice about the GP practice to attend.

Case Study 3 in Chapter 4 described a trans-led approach to training and accrediting GP practices to address these deficiencies. We interviewed some clinicians and receptionists who had begun to work with a new understanding of health inequalities faced by trans people and the pressing need to ensure that trans people are welcomed and included by their primary care practice. This led to administrative systems that readily reflect trans identities and clinical practices that ensure that people are asked appropriate and respectful questions about their general health concerns, without making assumptions about links between gender identity and anatomy. We also heard examples of the benefits of this kind of intervention for trans people, who experienced inclusive patient registration systems, the use of a trans status marker on their record to make sure that they were invited to appropriate screenings, practice staff using correct pronouns at all times, and respectful conduct of screenings that might otherwise lead to dysphoric experiences.

In both this case study and in the experiences of local primary care practices specialising in trans health care in Case Study 4, some service users have also begun to experience trans health care as appropriately integrated into the everyday life of a GP practice. Some clinicians saw this as reflecting what is possible when delivering trans health care in a primary care setting, as one aspect of person-centred care. This contrasts strongly with the idea that trans health care is something that is specialised and particularly difficult, to be separated out from the mainstream of health care within a GIC.

While Case Studies 3 and 4 illustrate the potential for improving how GP practices support trans people, they also indicate how much remains to be done. Within the small sample of service users we interviewed in each case, we heard experiences of inconsistent practices and standards of care. Some people experienced difficulties in getting their names changed on patient records, or were deadnamed or misgendered, depending on which members of the practice they were dealing with. We also heard about the damaging impact of these inconsistent experiences given the history of microaggressions that trans people typically experience – emerging trust in a GP practice can be easily undermined.

Experiencing secondary services

In our service-user interviews, we heard some examples of trans people experiencing respectful care from a specialist medical or surgical discipline, on a matter not directly related to their transition. We also heard examples of an apparent complete breakdown in communication between a specialist medical or surgical team and surgical team responsible for lower surgery, with issues unresolved or both transition-related and non-transition-related surgeries held up seemingly indefinitely because neither team was willing to take any initiative. None of our case studies, however, addressed initiatives to improve the experiences of trans people with secondary medical and surgical services. This area too requires further research.

The unaddressed issues: waiting times and access to surgery

Such developments and their incremental contribution to delivering person-centred co-ordinated care, however, need to be set in the context of the enormous waits for treatment trans people have experienced. We have seen repeatedly in our data the distress and often deep despair this causes. Many trans people feel compelled to ‘go private’ for assessment and prescription of hormone therapy, and/or upper and lower surgery, often when they can scarcely afford to. Others have resorted to self-medicating with hormones bought from internet pharmacies or shared with them through trans communities. Our interviews with service users, even in the initiatives to improve care, indicated how common it was for people to feel they had no option but to find a way of accessing hormones privately before they even got to their first GIC assessment. As one put it, it was apparent at their welcome workshop at the GIC that:

… half the people here are already three-quarters of the way down the line […] already transitioned and living full-time and probably on HRT … and you’re saying that you do this assessment … and it’s like ‘the horse has bolted’.

Many professionals working with trans people have told us they feel profoundly compromised by this state of affairs.

Based on the experience of the WGS reported in Chapter 4, an approach to assessment for hormone therapy based on the possibility of a single clinical opinion and assessment appointment would help clear waiting lists and reduce waiting times. However, the thousands of people already waiting in the system across the UK mean that, even if this practice were adopted widely, it would still take several years for waiting times to reduce.

Our research suggests that the dynamics giving rise to such waiting times are complex. The rising numbers of referrals and a relatively static level of resourcing for specialist services play a role, but need to be looked at in the context of a wider debate as to what exactly should be invested in. Many of the initiatives summarised in Appendix 10, Table 11 have implications for making assessment and treatment less costly to deliver, as well as more person-centred to receive. And the frameworks for delivering transition-related care described below, under Paradigms 2 and 3, also have significant potential for simpler, more flexible assessment processes with less reliance on particular groups of senior staff. Increasing the financial resourcing of trans health care cannot therefore be separated from consideration of the models that would allow people quicker access to care.

Above all, there is an underlying question of the relative priority of trans health care within NHS budgets, set against many other pressures, in the post-pandemic context. There are growing backlogs of elective care in many areas and huge demand pressures on acute services. Even in this context, as we noted in the previous chapter, the duration of waiting experienced by trans people is extraordinary. In Chapter 4, we saw that in Northern Ireland a complete absence of referral opportunities has been regarded as tolerable by the NHS for several years. As one service user put it, with heavy irony, there is a common misperception that being trans is a choice, and therefore not a priority: ‘… it’s not just a delay because there don’t happen to be enough surgeons. It’s a delay because it’s us, and we’re no one’s priority because we’ve chosen to be in this situation’. Some clinicians too suggested that current anti-trans currents in society were affecting NHS priority-setting, leading to reluctance to increase funding for GICs.

All of this suggests the need for commissioners and health service policy-makers to reflect on the value – or lack of it – that is being placed on meeting healthcare needs of trans people when allocating resources. The current backlogs imply a perspective that trans identities are in some way undesirable, marginal or optional for the people involved – society should not place meeting the needs of trans people at the same level as other mental or physical needs. Ashley et al. 28 contrast this with a perspective that sees trans identities as part of normal human diversity, to be supported out of commitment to social justice for a stigmatised minority, and indeed to be treasured. Such a perspective prompts re-evaluating how healthcare resources are allocated, however strong the competing pressures.

An area for further exploration in justifying greater expenditure on gender services is that of the costs to other services – particularly mental health services – of having thousands of people waiting several years for treatment. Exploring these costs and the potential for reducing them was beyond the scope of this project. However, as reported in Chapter 3, a high proportion of the 2000 trans people who participated in the ICTA survey were using, or wanting to use, mental health services. In Chapter 3, we argued that the experience of waiting has in many cases intensified this mental health burden. The costs of investing more in trans health care should therefore be set against the benefits of freeing up the capacity of overstretched mental health services, with potential impact on reducing waiting for these services, leading both to human and economic benefits as more people receive treatment more quickly. There are additional considerations of the costs of waiting emerging from our interviews in terms of the likelihood of GIC administrative errors and rework needed when people on the waiting list change their address, or when their medical records are misplaced as time passes.

The initiatives we studied did not include making inroads into the additional long waits most trans people experience for upper and lower surgery. These were, however, mentioned frequently by service users, many of whom paid large amounts of money for private surgery, often overseas. For many trans people, surgery is an essential healthcare need, and part of the picture of co-ordinated care that needs to be addressed. While the ICTA project can claim to have contributed to distilling knowledge about how to improve access to assessment and the initial stages of hormone therapy, it can only claim to have revealed the need for further initiatives in the provision of upper and lower surgery. The planning and development of the clinical workforce needed appears to be one important element, given the shortage of providers. A better regional distribution of the surgical facilities appears to be another, reducing the distance that many people currently travel for major surgery.

Trans participation in shaping and providing services

In Chapter 4, we reported widespread views from interviewees that there should be more trans people working in GIC staff roles, whether as gender clinicians, nurses or support workers. Most of the service users we interviewed perceived that the great majority of GIC staff they met were cis. Many indicated that they did not trust cis GIC clinicians to understand the experiences, perceptions and needs of trans people. A stronger trans staff profile, still more evidence of trans people in senior clinical positions, would be an effective intervention in this dynamic.

The GICs participating in Case Studies 1, 2 and 4 in Chapter 4, and the primary care training and accreditation initiative in Case Study 3, have all in different ways sought to involve people from trans communities in shaping their provision. These provide indications for others to build on as to how to make sure trans perspectives are reflected in clinical and administrative practices. In Case Study 3, a coproduction group of GIC staff and service users examined proposals for new service offerings. In Case Studies 3 and 4, trans communities were represented on overall steering boards, to which staff involved in taking initiatives forward reported progress and were held accountable. In Case Study 4, attempts at community accountability were made by having a trans community member on all staff appointment boards, and also present at all training sessions for GPs. These were seen as steps toward staff operating within a framework of supporting trans rights and understanding trans perspectives and cultures.

In Case Study 4, we saw how the new gender service in Wales has been developed by an expanding and innovating network, which brings together representatives of trans communities, clinical and third-sector leaders and health service policy-makers. This network shares a moral commitment to trans rights and overcoming health inequalities experienced by trans people, as the basis for improving trans health care. Its members also appear to hold in common some central cognitive frameworks and operational concepts. These include the ideas of affirmative practice, and of a network of regional primary care clinics and third-sector support agencies working together with a hub specialist gender clinic. The well-articulated moral justification and trans participation in creating it are arguably key features that other services can learn from. This may well provide the basis for progressive recruitment of a higher proportion of trans staff.

Summary of survey respondent demographics

Demographic characteristics

Across the 2055 respondents, many people selected more than one option offered as a description of their gender. There were 3293 options selected in all, by 2055 people, summarised in Figure 3. Responses indicating a non-binary gender identity were more common overall, although in many cases people indicated both a binary and a non-binary identity.

FIGURE 3.

Gender reported by survey respondents.

Similarly, many respondents selected more than one of the options offered as a description of their sexuality. A total of 3297 terms were selected across the 2055 respondents, summarised in Figure 4. Being lesbian, gay or heterosexual accounted for only 24% of responses.

FIGURE 4.

Sexual orientation reported by survey respondents.

Figure 5 shows that the age distribution of participants was significantly skewed towards the younger adult range, with 56% of respondents under 30. Attempts were made in all the subsamples of interviewees to make sure that the fuller range of ages were more equally represented. The only exception was the subsample of older trans people. Given the relative lack of survey respondents and interview offers from people over 70, this subsample was made up of people aged 50 upwards.

FIGURE 5.

Age distribution of survey respondents.

Eighty-nine per cent of respondents entered that they were born in the UK, rather than elsewhere. Figure 6 shows the distribution of responses on ethnicity, grouping responses into four main categories. Respondents were predominantly white (93%). Efforts were made to recruit global majority interviewees to all subsamples – place of birth was not a criterion for selection.

FIGURE 6.

Ethnicity of survey respondents.

Figure 7 shows that survey respondents included a wide range of religions. However, 67% selected the ‘no religion’ response option.

FIGURE 7.

Religion of survey respondents.

Figure 8 shows that the majority of participants had received post-18 education, with 40% leaving after 3 years of higher or further education, and a further 39% studying longer. Only 6% had left education at 16, and a further 15% at 18. Again, wherever possible, subsamples were constructed to represent a variety of educational attainment.

FIGURE 8.

Education since age 16.

Figure 9 summarises responses on employment status. Full-time employment and student status were the commonest responses, with just over half of respondents (53%) overall indicating that they were either employed or self-employed. Thirty-five per cent of respondents said that they undertook volunteer activities, and 11% considered themselves to be carers.

FIGURE 9.

Employment status of survey respondents.

Figure 10 summarises respondents’ perceptions as to the adequacy of their income. This shows fairly balanced distribution around a median response of ‘neither comfortable nor struggling’, with 28% saying they were either ‘struggling’ or ‘really struggling’.

FIGURE 10.

Income adequacy of survey respondents.

Figure 11 shows that the majority of people in the population of respondents considered themselves to be disabled in one or many ways, or to have a chronic health condition. This preponderance may of course reflect selection bias, in that people were responding to a survey about health care. Whether or not this is the case does not of course compromise the validity of the criteria used to select people for the purposive subsamples.

FIGURE 11.

Health conditions of survey respondents.

Interviewer guide for ‘service-user’ interviews

Prior to interview:

• Introduce yourself.

• Describe the overall project.

• Describe the purpose of this interview.

• Check that they have consented.

• State that the interview will be recorded, what will happen to this recording, how it will be stored, transcribed, anonymised and when/how it will be destroyed.

• Check that they are OK for you to turn the recorder on.

Before we start, I just want to walk you through the interview so you know what to expect. The interview will be in four parts. We will start with some general information about you. I’ll just ask you a few questions about who you are, and about your health in general. We are interested in all health experiences, not just transition-related health care. In the second part, I’ll be asking you about your experience of using GIC services and hopefully we will be able to talk in more detail about some of those experiences. In the third part, I’d like to broaden this out to think about the different general health services you might have used in the past or are using now. This could include your GP, hospital services or even social support or social care services. Finally, we’ll spend a little time talking about your views on Trans, including GNB, health generally and how health services could be improved.

Service-user interview guide

The same interview guide was used for service-user interviews in the case studies as in the national sample. This appears above in Appendix 3. In Part 2 of the interview, the guide indicates that the interviewer should add additional questions exploring the interviewee’s experience of using the service that is the subject of the case study.

Introduction

Case Study 1 examines a partnership between GIC A and a third-sector LGBTQI+ organisation, Organisation B, to provide trans peer-support workers for people on the GIC waiting list. Sixteen staff involved in this initiative were interviewed from across GIC A, the NHS Trust that hosted it and Organisation B. Fifteen service users were interviewed, recruited from those who had responded to the ICTA national screening survey, and indicated they had engaged with the gender-outreach workers. Of these, nine were in the process of or had completed their assessment with GIC A. Others were either waiting for assessment or had been assessed elsewhere. Some proved to have only passing experience of the gender-outreach workers. In what follows, as a consequence, there is a rather fuller depiction of staff views on gender outreach, with service-user views included when available.

The gender identity clinic context

At the time of interviewing, from late 2019 through 2020, GIC A had over 1000 people on its waiting list. Its mode of operating followed the NHSE Service Specification for Gender Identity Services for Adults (Non-Surgical Interventions). 15 As people entered the service from the waiting list, they had two assessment appointments, with additional ones in between if clinicians considered them necessary. The first appointment was typically with a gender clinician with a nursing background. The second was with the same person, together with a consultant psychiatrist or psychologist who was also a member of the MoJ list of gender specialists. At the time of interviewing, waiting times were typically 2 years for the first clinical appointment, and a further 2 years for the second. Following diagnosis, service users waited further, for around 12 months, for an appointment with an endocrinology team to prescribe hormones, typically 5 years after referral.

Objectives and nature of the gender-outreach initiative

In late 2014 and early 2015, discussions took place between Trust A, hosting GIC A, and NHSE about ‘how to manage waiting’. There was a shared concern about increasing demand, and the length of waiting for first appointments. Discussions took place with Organisation B about a new gender-outreach worker role, with lived experience of being trans. Funding was agreed for this new role as a member of GIC staff, offering information, advice and peer support, for people waiting. Two part-time outreach workers, both trans, were recruited by the Trust, in collaboration with Organisation B. They were based primarily on Organisation B premises but were involved in meetings and aspects of care provision at the main GIC site.

Gender-outreach practices and achievements

Challenges of gender outreach

Further development of gender outreach

At the time of interviewing, the provision of gender outreach was already being expanded to other geographical areas. Some of these were being covered by an additional worker employed by Organisation B. Others were being covered or planned to be covered through new collaborations between the GIC and other third-sector organisations in different localities. There was a related initiative for GIC nurses to run first assessment sessions at one of the new regional locations.

Several staff felt that the amount of outreach worker time needed to be increased to deal with the demand and also that more time for discussion between outreach workers and GIC nurses would improve understanding of what outreach workers could offer. Even before the COVID-19 pandemic, thought was being given to how remote video calling could be used to extend the ability of outreach workers to support people at a distance.

A further initiative concerned outreach workers raising awareness at GP practices as to how they could support people on the GIC waiting list. Beyond this, the outreach workers were influential in supporting the development of policies for treating trans patients appropriately elsewhere in the mental health Trust hosting the GIC, including making sure that inpatients were allocated and welcomed within wards according to their correct gender.

Introduction

This case concerns attempts to improve the integration of care within a GIC on two fronts: liaison with the primary care practices and mental health support for service users. Between mid-2020 and mid-2021, we interviewed nine members of GIC staff, including gender clinicians, psychologists providing support services and nursing staff. We interviewed seven service users, recruited through the national screening survey on the basis that they had engaged to some extent with the psychological support at this GIC. Their ages ranged from 22 to 70, and they included one man, four women and two non-binary people. All reported on experiences of the interface between GIC and primary care, while four had experiences of receiving GIC psychological services. Of these, one was offered psychological support but didn’t feel the need to accept. Three attended group programmes over several weeks, with two of these also receiving individual counselling at some point.

In describing the services below, we bring out the service-user experience where we have data on it, alongside views of clinicians. We first summarise the main features of the GIC assessment and treatment pathway, as context.

The gender identity clinic context

At the time of interviewing, the GIC had around 1000 service users at various points of assessment or treatment, with around 1200 people on its waiting list. The length of time from referral to first assessment appointment was around 2.5 years and grew significantly over the course of the COVID-19 pandemic. Service users interviewed reported waits of between 1 and nearly 3 years, depending on when they had been referred. All found the wait very stressful, with three of the seven deciding to ‘go private’ for assessment and access to hormone therapy before being seen by the GIC.

… the wait became harder than I had expected, or the mental reserves I’d had, that I thought would be able to get me through the wait, ran out, and I was like, I need to starting doing something now …

Service user

Consistent with the NHSE Gender Identity Services (Adults) specification,15 there were two clinical assessment appointments by a senior gender clinician for each person, with additional ones in between if clinicians considered this necessary. The service users we interviewed in fact all received a diagnosis after two appointments. There was also a physical examination, covering height, weight and blood pressure, combined with an endocrinal consultation, for detecting issues that might complicate hormone therapy.

At the time of interviewing, the second appointment usually followed the first within 6 months. Service users reported waiting between 4 and 6 months, apart from one who had waited 10. With the pandemic, most first assessment appointments were held via video. Given the need for the physical examination, many second appointments have continued to be face-to-face, with the two sessions on the same day or sometimes combined.

According to clinicians, diagnoses were formalised in a MDT meeting shortly after the second assessment. The service users we spoke to all reported that they were actually told of their diagnosis during their second appointment. This included explanation of the nature and impacts of gender-affirming treatments – including some or all of hormone therapy, voice coaching, hair removal, fertility preservation and gender surgery. Service users reported that hormone treatment, if desired, was also initiated at the second appointment, with a recommendation to their GP to prescribe under shared care.

Service users’ commentaries on their experiences of the assessment appointments varied. Of the six who had first assessments, three found the clinician supportive and well informed. One of these found the approach to questioning ‘a little invasive […] not in a negative or particularly uncomfortable way’. The other three had problematic experiences, finding the clinician unsympathetic either because they asked intrusive questions without making it clear why, appeared oppositional or challenging, or failed to convey recognition of ways of thinking about gender that were important to the person:

Why are you asking me about my childhood? What relevance does that have? I don’t think it’s relevant at all … I’m bending, twisting the narrative to be the right narrative … It was like they were trying to catch me out …

Service user

Experiences of second appointments, with completion of assessment and treatment planning, were more positive. Clinicians were experienced as ‘positive and optimistic’ or:

… generally putting me at ease about pretty much everything. Answering all the questions I had, relating them to me as a person, rather than just a checklist to tick off […] listening to what was bothering me and giving actual examples, from his experience …

Service user

One person drew attention to the impact on them of having two independent assessments – they were asked the same set of questions at each, which felt like going over what the service already knew about them:

… it was just a rehashing of the first, totally identical to the first appointment. But it got me my second signature and then I’m officially diagnosed.

Service user

Two further clinician signatures are required to refer someone for top and/or lower surgery, as per the service specification. One user was disturbed and baffled by being further probed for a consistent story about their gender identity, as if their trans status was still in doubt, as well as by what seemed irrelevant questioning about their relationship status. Another person was appreciative of a flexible approach by clinicians, leaving them to decide about surgery in their own time:

The gender clinic’s pretty much the one thing that I haven’t had trust destroyed in, at this point, that I trust them to ask, when it comes, okay, time for referral for surgery, let’s go over some points again.

Service user

Gender identity clinic interfaces with primary care

Service users reported widely divergent experiences of being referred to the GIC by their GP. For some, their GP referred them quickly and competently. For others, their GP appeared both reluctant to refer and lacked knowledge about how to do so. In one case, a GP incorrectly referred them to a mental health service rather than the GIC – the referral was refused with a request to redirect. In another case, a GP said they first required a letter from a counsellor the person had been seeing.

On receipt, referrals are processed by the GIC nurses, who request any missing information from the GP. Acceptance of the referral involves the GP signing a MoU which sets out the detailed arrangements for shared care between the GIC and a GP practice, above all with respect to hormone therapy. The GP is expected to prescribe, following GIC advice, and arrange regular blood tests, which the GIC interprets and discusses with the person concerned, leading to revised prescribing advice as necessary.

The GIC introduced the MoU at the referral acceptance stage in response to uneven responses from referring GPs across the country to shared care. While GMC guidelines emphasise the risks to patients of not prescribing cross-gender hormones important to their well-being, GPs in different commissioning areas encounter different policies as to whether HRT prescriptions for trans people are funded or require an IFR. GIC staff reported that some Local Medical Committees were also taking a stance that GPs should not prescribe or administer hormones for trans people unless their practice received an enhanced payment from the CCG for handling this.

The GIC experience was that some practices refused to take part in shared care even when commissioned to do so, usually claiming that they were not competent to provide hormone therapy for a trans person. This could emerge even after a service user has received a diagnosis and recommendation for hormone prescribing from the GIC, with ‘devastating impact’ on the person concerned. The MoU attempts to address funding issues and any other source of GP resistance early, well before it has such consequences. However, one service user reported that their referral had been delayed because their GP practice took several weeks to consider signing the MoU:

They genuinely made me feel like I was being an annoyance to them by asking to be looked after, for them to a do a thing that only they can.

Service user

In such cases, the GIC nurses follow up with a GP practice in the first instance. If necessary, GIC gender clinicians speak directly to the GP to help them understand that HRT for trans people is usually straightforward medically, emphasising that most GPs already have experience of prescribing testosterone and oestrogens to cis people, and that the GIC will take responsibility for monitoring blood work.

Another service user found their GP was initially resistant to shared care. Once an appointment was made with the nurse, however, things went much better:

… then they said, well, it’s just an intramuscular injection, so that’s easy.

Service user

The GIC has attempted to address further difficulties that typically arise in liaising with GPs once someone has begun their GIC assessment. Staff have developed template letters to keep GPs informed following each assessment appointment. These cover whether there is a provisional or final diagnosis, implications for prescribing and other treatments, and any further aspects of medical transition currently being considered. Once a treatment plan is agreed, usually at the second appointment, the letter contains full information on the possible risks of treatment, short-term and long-term, so that these are clear to the GP as well as to the service user.

Following initiation of hormone therapy, the GIC uses SystmOne, a leading shared online patient record system, but still only used in around 25% of UK GP practices, as a platform for communicating over blood tests and dosages. Clinic nurses mediate the interchange of queries and answers within the system. This allows GPs and GIC clinicians to resolve issues without having to arrange phone calls – for example, over a request from a service user for a change in dosage, or a GP enquiry about GIC perceptions of the general well-being of a service user.

Given the limited use of SystmOne in primary care, service users and GIC clinicians reported persistent problems with blood test information not being provided in time to be of use at scheduled GIC review sessions. Service users found they had to intervene frequently:

… sometimes if they send information from one to the other, it will get a bit lost. Like something on my GIC system, wouldn’t work on the GP system. And he wouldn’t realise for a while until I say, hey why hasn’t this happened?

Service user

One gender clinician gave their e-mail address and mobile number to service users so that problems with getting tests done could be sorted out prior to review appointments.

A further area of liaison with primary care likely to arise on or before the initiation of hormone therapy was arranging for fertility preservation or hysterectomy, if desired by an individual. Both gamete storage and hysterectomy commonly require a person’s GP to complete an IFR to the local CCG. The GIC has developed ways of supporting GPs with this, making them aware of recent NHSE guidance which indicates that gamete storage should not be withheld. The GIC also advises on which CCGs now have a policy of funding gamete storage for trans people, making an IFR unnecessary.

Psychological support

In 2017, the GIC reviewed the need to provide psychological support for service users. Staff were aware of people entering the service with a mental health burden from the stress of daily experiences of transphobic interactions:

… issues about social anxiety and the knock-on effect of depression and self-esteem disturbance … of course the difference for trans people is actually they’ve got good reason to feel anxious and afraid and socially isolated.

GIC staff

There was also awareness of the impact of the extended waiting period and experiences of having little control over their access to gender-affirming care through the GIC system. As one service user put it, this was:

… causing a weight or a drain on my mental health.

Service user

The direction the GIC set was to provide psychological support separately from the main assessment pathway, through a small psychology team, consisting of a principal clinical psychologist, one other clinical psychologist and an assistant psychologist. There are also usually two clinical psychology trainees assigned to the service each year, working with service users under supervision.

The psychology team has run group-based therapy programmes, and also provided some individual and family or couples counselling. The last-mentioned were typically one-off consultations to help a service user and others close to them work through issues related to their transition. All of these interventions are in principle available to service users ‘at any point in the pathway’, once someone has had their first assessment. With the pandemic, staff reported increasing referrals to the psychology team on first assessment due to people experiencing social isolation. Sometimes people were also signposted to local trans groups.

The psychology team has led on establishing a coproduction group for the GIC. The latter consists of four or five members of staff, from nursing and psychology, and an equal number of service users and has been considering how to improve services. Its initiatives have included improving information and support for those on the waiting list. A trans ‘expert by experience’ has been recruited to the GIC staff team, to offer support to people on the waiting list as well as take part in the delivery of workshops and coproduction activities.

Staff estimated that around 20% of the people seen by the GIC are seen by the psychology team in one of the above ways. There are typically 100 people receiving psychological intervention at any one time. The clinic nurses were seen by both staff and service users as central in making sure that service users are aware of what the psychology team offers:

As I approached every appointment I think, it was, oh and if you ever need, if you need to reach out to things like workshops and groups, we can, they always made sure that I knew there was an option on the table for me.

Service user

One service user also experienced the nurses as offering a kind of informal counselling at regular check-in sessions:

I guess, the therapy-esque sessions, they were just short little half an hour, an hour-sessions, where you can just talk about whatever.

Service user

Issues with psychological support

Gender identity clinic psychologists recognised that they had limited capacity to address the considerable mental health burden of many trans people entering the service. As already indicated, the group provisions can be seen as only addressing the milder end of the spectrum of severity. GIC psychologists were aware that many service users had mental health conditions, such as anxiety, depression or obsessive–compulsive disorder, which in their view were not directly related to their gender and which therefore should be treated by mainstream local NHS mental health services. Local mental health services, however, often refused to treat such cases, referring them back to the GIC. GIC staff saw their role in addressing this serious gap in access to provision, arguably affecting those with the highest need, in terms of acting as explicit advocates for people to get treatment:

I can assess and formulate people and write a really thorough letter based on their needs and what they’re presenting with. I’ve had a fairly good success rate, touch wood, with GPs and services who’ve refused people because they’re trans essentially. Not for any rhyme or reason.

GIC staff member

Some GIC staff expressed concern that the local services taking on these clients might not take a sufficiently holistic approach to mental health, applying only a limited range of techniques for addressing specific common mental health conditions. They were also concerned that clinicians in local NHS services lacked understanding of how to work with people experiencing transphobia in their everyday lives and the interaction this has with mental health conditions. The implication was that local mental health services need to gain competence to provide appropriate therapy for trans people with mental health needs, rather than exclude trans people by referring them back to the GIC.

We were unable to explore with any service users who received counselling prior to diagnosis whether they felt inhibited about exploring psychological material in counselling because they were also still under assessment. Experiences reported with other GICs in Chapter 3 indicate this has been an issue elsewhere. We were also unable to explore the kinds of circumstances under which people might be asked to suspend their assessment while they received counselling, and how people experienced this. As already mentioned, in Chapters 5 and 6, we raise more generally the difficulties and ethical issues associated with a clinical judgement that a person is ‘unsure’ and so should have their assessment delayed.

The importance of such issues is borne out by the concerns expressed by some staff at the contradictions between taking up a therapist role and working within a setting that assesses people as to whether or not they are trans and can therefore receive treatment. As they put it, the same GIC clinic both sets out to provide an open and exploratory space for people to consider what they want from treatment and determines within an assessment process whether they fulfil diagnostic criteria for gender dysphoria. They also acknowledged that pressure to reduce the waiting list and maximise utilisation of diagnostic capacity can lead to considerations of ‘sidelining’ people who are perceived to be unsure about their treatment goals. Even though different clinicians are involved in the two different kinds of clinical encounter, the tensions between them can emerge in team discussions, and can have profound implications for service users. One staff member described these dynamics:

… a couple of times where the team might have been pushing back if somebody has been unsure what they want with regards to medical treatment for a while, and I’m just doing open-ended kind of exploration and hand-holding […] But the team might be saying ‘Discharge them. They can come back whenever, without waiting. But if they don’t want treatment, then we should close them. And they can just let us know when they’re ready’ … And then that being understandably very frustrating, confusing, and difficult for people.

GIC staff member

Further evidence of tension between receiving psychological help and GIC assessment came from staff perceptions that some service users learnt not to disclose mental health difficulties to gender clinicians, instead telling them:

… what they think you need to hear … having a sense of the boxes that need to be ticked […] I guess that mirrors the minority stress thing of feeling they need to hide part of themselves in order to get by in the world.

GIC staff member

This could lead to mental health conditions remaining hidden, and only emerging when people came for psychological assessment separate from the gender assessment.

Staff reported that an overall major issue the GIC faced was lack of capacity to offer psychological interventions, particularly individual counselling. Programmes of treatment had to be more limited in length than was desirable for some individuals, to keep waiting times down. It was also difficult for staff to keep in mind all the individuals on their caseloads, which were considerably larger than in most psychology services, with more people seen less often, sometimes with several months between sessions. The groups or workshops meant, however, that it was possible to offer follow-on interventions after seeing someone individually.

Developments under consideration

Staff and service users held a variety of views as to how transition-related care in general should develop in the future. The final section of Chapter 4 summarises this range of views, along with those of interviewees in the other case studies. Here we present the views relevant to the further development of primary care liaison and psychological support within this GIC.

Many staff and service users emphasised the importance of improving training for GP practices in trans health care, in particular in their responsibilities for prescribing hormone therapy. Some staff members felt that the GIC itself should also develop the capacity to prescribe, take bloods, dispense and administer hormones and hormone blockers, for service users who do not have a GP willing to enter into shared care.

A related suggestion was the development of a comprehensive coding system for patient records, that could be shared with primary care, which would reflect what it is medically important for services to know about trans service users – for example, which organs they have that require cancer screenings.

In terms of psychology provision, staff were of the view that online groups will continue to be an important mode of delivery for the foreseeable future, in combination with face-to-face. Staff saw continued development of compassion-focused and trans-affirmative approaches within individual and group therapies. Staff wanted to explore development of more inclusive group-support models that recognise the variety of medical and social transition that people engage with. The need for this is suggested by the experience of a non-binary service user we interviewed. They wondered why they had not been offered any groups, and whether this might be because the groups were designed for people with binary identities.

This would require the adoption of instruments for measuring the extent (and intended reduction) of minority stress in a more inclusive way than is possible using existing measurement instruments, which tend to assume a binary gender identity.

Staff were strongly aware of the need for psychological support among the 1200 people on the waiting list. They explored a partial but low-resource solution, using the Recovery College model to develop peer-led well-being workshops. Although this proved not to attract take-up, a range of shorter peer-led courses and online resources, on topics such as physical health and harm prevention when self-medicating, were being developed.

Introduction

This case study concerns an NHS primary care TAS focusing on meeting the healthcare needs of LGBTQIA+ communities. This study focuses on the ‘trans-inclusive’ elements of TAS intended to improve the health care received by trans people, introduced in 2016 within MetroCity by the local NHS in collaboration with Alpha, a third-sector organisation providing support and advocacy for LGBTQI+ populations.

It is based on interviews with four primary care staff – GPs and receptionists – drawn from three different GP practices. These practices were selected because of the length of time they had been involved with the scheme and were drawn from urban areas with a range of social and economic characteristics. Seven trans service users were interviewed, on the basis they had completed the ICTA national screening survey on healthcare experiences of trans adults and indicated that they had used a TAS-accredited GP practice within MetroCity. One was a woman, two were men and four non-binary. All were aged between 20 and 30.

Three senior staff working for the NHS in MetroCity and involved in the commissioning of the scheme were also interviewed, as were two Alpha staff running the scheme. The study also draws on published TAS documents.

Below, we summarise what prompted the trans-inclusive elements of TAS, and how GP practices were engaged. We summarise the nature of the training and accreditation, how trans-inclusive health care has been stimulated by it, and how staff and service users experienced this. We were able to gather experiences from services users relevant to some, but not all, aspects of trans health care which TAS was attempting to influence. We summarise what has been achieved by the scheme, the concerns and issues that have arisen, and plans for developing the scheme.

Why were the trans-inclusion elements of training and accreditation scheme put in place?

Training and accreditation scheme was launched, initially for GP practices, in MetroCity in 2013, with the intention of improving care for LGB people. The scheme was run by Alpha and commissioned by MetroCity NHS. In 2016, TAS was relaunched and rebranded as a trans-inclusive scheme. The motivation to make the scheme trans-inclusive appears to have been strongly shared between Alpha and MetroCity Commissioning (MC). MC has two senior officers responsible for inclusion and equality, as well as a Head of Engagement, with a remit of establishing relationships with marginalised communities. Prior to 2016, they became aware that primary care and other branches of health care in MetroCity were often not meeting the needs of trans people. This contributed to the disadvantage trans populations face in terms of physical and mental health outcomes, and the barriers that many trans people face in accessing health services. At the same time, Alpha strengthened its focus on improving trans health care, increasing its recruitment of trans staff, including a new TAS co-ordinator:

… among LGBT community members, the greatest need, the poorest outcomes, the most difficult barriers to overcome, are experienced by trans and non-binary people, so let’s focus on that.

TAS staff member

The new version of TAS was commissioned by the MetroCity region administration, with additional financial backing from NHSE. From 2017, there has been a trans member of the TAS team employed by Alpha with specific responsibility for trans inclusion, as well as three staff roles working with primary care practices on training and accreditation, each focusing on a different section of the city. The funding allows Alpha to provide training and accreditation services to primary care practices without charging them a fee. The scheme was also expanded to cover a wider range of primary care practices beyond GP surgeries.

How training and accreditation work

At the time of fieldwork, 49 GP practices in MetroCity, around 75% of the total, had signed up for TAS training and achieved at least bronze accreditation.

Training sessions for GP practices typically last 1 hour, intended to involve all practice staff. These sessions may be several months or even 1 or 2 years apart, depending on how rapidly the practice is able to progress with its development in the trans healthcare standards. This reflects the limited time that practice staff can set aside for in-service training.

Training covers: LGBT basics, including the differences between concepts of sex, gender identity and sexuality; ideas of cis and trans, including non-binary, people; health inequalities experienced by LGBT people, the additional inequalities faced by trans people; the importance of recognising protected characteristics and addressing inequalities; and best practice in terms of inclusive primary health care.

Training sessions are designed so that there is space for practice staff to raise questions or talk about encounters with trans patients which they experienced as not going well, so that there can then be discussion of what can be learnt.

… they just really embraced that as a learning opportunity rather than being scared of it as a mistake […] I think people carry a lot of shame around the topics of discrimination and marginalisation. And wanting to be an ally but not necessarily being in a marginalised group … they know that things are kind of bad for trans people, and they know that they haven’t personally really done anything to make it better …

TAS staff member

The volume of training has increased markedly during recent years. At the time of interviewing, virtual sessions were being delivered in several different practices each day.

Clinical and non-clinical staff alike commented on the importance of having the training delivered by a trans person. GPs indicated the value they attached to having clear information about the health inequalities and problems accessing services typically experienced by trans people, and that this freed them up from hesitancy about admitting what they didn’t know.

Assessment for accreditation typically takes place on the same day as training, in a separate session with a smaller group of practice staff. This includes discussion of policies and questioning of staff about how they have dealt with or would deal with various scenarios involving trans patients. One example is what the response would be if a receptionist overheard a patient in the waiting room making a transphobic joke about another patient. According to TAS staff, the aim is to ‘create the conditions for services to tell us things’, rather than a more formal process of assessment.

… do they feel confident to intervene if they witness transphobia, and is there a general culture that … is their manager going to back them up on intervening?

TAS staff member

Assessments also explore the questions typically asked by clinicians in their consultations with patients, whether patients are given the opportunity to give information appropriately about trans identities and whether there is exploration of related health issues such as relevant screenings.

TAS staff subsequently review practice documentation and policies on topics such as equality and inclusion, and the extent to which the handling of patient records conforms with privacy and confidentiality rights for trans people enshrined in the GRA. They also form a view on the extent to which understanding of these issues is shared across practice staff.

The assessment result is fed back in terms of a bronze, silver or gold TAS award, with recommendations for areas of improvement. TAS staff felt that the different levels of award were effective in recognising progressive achievement in delivery of care. Typical feedback at bronze level might concern the need to ensure that a well-intentioned policy is better understood and acted on by practice staff. Another example of a developmental direction could be that of learning about the particular issues faced by LGBT and trans people from a particular ethnic or religious group prominent in a practice’s catchment area.

TAS staff each act as account managers for practices in particular areas of the city. The intention is that this continuing relationship provides the basis for learning within an atmosphere of openness. Training and accreditation materials are reviewed and updated annually, in consultation with focus groups of trans community members, as well as a TAS Steering Group, overseen by the TAS trans co-ordinator at Alpha. The TAS philosophy is that trans community membership and needs are fluid and changing, and that training and accreditation need to be co-produced to reflect this. The TAS Steering group includes people with lived experience of receiving trans health care, as well as GPs, dentists, pharmacists, optometrists and commissioners.

Features of trans-inclusive care resulting

Overall achievements and issues

The picture emerging from the perceptions of service users and TAS staff is that some accredited practices have developed competence in many aspects of trans health care and have acquired a substantial trans clientele. However, the experiences of service users suggest that trans healthcare expertise was not consistently held by all staff or consistently supported by administrative systems.

These kinds of failings were also reported by TAS staff, who have been contacted by trans people following negative experiences with an accredited practice. TAS staff follow up these reports with the practice identified, as an opportunity to bring about improvement.

Commissioners and GPs we spoke to also expressed concerns about continuing resistance to TAS from a minority of GP practices within the city.

… we do still have a few transphobe comments and feedback come through from our GPs who don’t understand why we should be focusing our services or any support around specific groups, especially trans people. […] And it’s a constant reminder to practices around what their duty of care is that we share […] get our medical director to step in …

Commissioner

Future developments

Commissioners and TAS staff described a number of fronts for expanding TAS. These included a further level of award for practices demonstrating consistent achievement in trans health care beyond the gold award level. TAS and its trans-inclusive requirements were also being expanded to other kinds of primary care, such as retail pharmacy, optometry and dentistry. TAS has been expanded to other areas within England.

Several members of staff interviewed were involved in designing and winning funding for a new pilot primary care-based gender service in the same city. They held that the experience of trans community stakeholders and GPs working together to create TAS had provided the basis for further conversations and joint shaping of the new service:

… we wouldn’t have been able to have a collaborative conversation with trans communities and GPs if there hadn’t have been [TAS] … What it would mean to think about trans health as a normal part of normal everyday life. Because that’s what general practice is.

TAS staff member

A number of staff described the new service as intended to provide holistic care for trans people, including mental health support. They emphasised the importance of understanding the intersectional nature of needs, that people can be disabled, non-white and/or refugees as well as trans, indicating how TAS has promoted ideas of person-centred or patient-centred care:

… the principles we’re talking about are about patient-centred care. They’re about not making assumptions. […] They’re about recognising multiple marginalised communities and the barriers people have.

TAS staff member

Introduction

This case study looks at the setup and delivery of the WGS. This comprises:

• a specialist Gender Identity Clinic (GIC) based at a hospital site in Cardiff

• local gender teams (LGTs), practitioners based in each of the local health boards (LHBs) across Wales, who provide and manage care after people have been assessed by the GIC

• Umbrella Cymru, a third-sector organisation that provides a Gender Information and Support Team.

This case study is based on semistructured interviews conducted with 8 staff and 10 service users of the WGS.

NHS Wales is comprised of seven LHBs, each of which has its own LGT, shown in Figure 14.

FIGURE 14.

Map of Welsh LHBs. Source: www.rcgp.org.uk/getmedia/8de53cd2-93b5-4d5e-88eb-5d1700aacbef/RCGP-NHS-in-wales-oct-2017.pdf

Pathway

The WGS is commissioned by the Welsh Health Specialised Services Committee (WHSSC). Prior to its commissioning in 2019, access to specialist gender services was via funded access to a specified GIC in England. Welsh patients, however, first had to be screened by local mental health services. Figure 15 summarises the differences between the new and old pathways.

FIGURE 15.

Map of former and current pathways for gender-affirming care for Welsh patients. Original figure, derived from data collected for this case study.

Rationale and implementation

Staff explained how, historically, the earlier pathway created significant inequities to accessing gender-affirming care for Welsh patients. Some local psychiatrists would believe they had found ‘some psychological issues’ that they ‘needed to explore’ and would correspondingly not refer those patients on to the English GIC. The staff member highlighted that ‘obviously’ gender dysphoria was the source of mental distress being experienced by these patients. Others highlighted that there ‘wasn’t a great deal of clinical use’ to the local psychiatric appointments.

A related point was that ‘our patients were not getting a Welsh service in the slightest’, highlighting that the entire trans population of Wales was placed on to the waiting list of a single English clinic, ‘without extra provision for that, really’. Service users needed to travel for multiple assessment meetings – a significant burden of cost and time.

A key factor identified by staff as contributing to the rationale for the implementation of LGTs as part of the service model was that, even when assessment was successfully accessed via the English GIC, patients were dependent on their local GP being willing to enter a shared care arrangement. In rural areas with very limited GP provision, should the only available practitioner(s) refuse, patients could be left without care. Access to care was therefore a ‘postcode lottery’.

The creation of the WGS/LGT system ‘was remodelling the whole service to focus on local care’. This was rendered possible by political support. Interviewees explained how in 2017 the devolved Welsh government was aware of service inequalities, and recognised political as well as practical benefits to reform:

It was at the behest of the Health Minister, Cabinet Secretary who wanted to see this work and had an eye for it being successful in order that he could make an announcement ahead of one of the Pride events.

WGS staff member

The instigators were a small network of people from different settings, who shared a moral commitment to establishing a new kind of service. The network included a GP who had established a working relationship with Welsh government health policy-makers in another clinical area and had also become concerned about the difficulties experienced by their own trans patients. This GP engaged with the WHSSC priority of establishing a WGS and was funded to gain experience of gender assessments and prescribing elsewhere in the UK, alongside being appointed as adviser to WHSSC on gender services. They worked with a WHSSC project manager to design the new service.

Others involved in the design included individuals from trans communities and a third-sector LGBTQIA+ leader with a history of working with communities to deliver innovative services. People involved in service design and implementation expressed personal connections with trans communities through being part of the wider LGBTQIA+ umbrella, which functioned not only to motivate but also informed network integration:

And so, from the very beginning I have felt really connected to the community and I belong to the LGBT community as an out lesbian. So, for me these were my siblings, there is a personal sense of connection as well as a duty of care as a clinician.

WGS staff member

The design of the new service was overseen by a wider group of senior health board representatives and trans community stakeholders. Staff and community representatives consulted widely within local trans communities, gathering views as to how services should run, while also recognising that for many:

The relationship between themselves and general practice was completely broken.

WGS staff member

The instigators accepted that the existing waiting lists would immediately place significant pressure on the new service in Wales. Referrals were backdated in accordance with the original GP referral on the old pathway. Support for people while they waited was identified as vital because of distress and harm that long waits had caused, including concerns that there had been a number of suicides as a result. The service designers considered an existing model of trans peer-support workers attached to an English GIC, and also drew on the support for gender and sexual diversity that Umbrella Cymru had been delivering since 2015. The group establishing the WGS successfully put a support service specification to WHSSC and Umbrella Cymru bid successfully to deliver this.

Alongside establishing the new specialist clinic, the instigating group developed the concept of LGTs – identified primary care practices managing care for people for an initial period of around 12 months after assessment. About a year in advance of the formal launch of the WGS, with funding from WHSSC, the GP leading on gender services began to run a primary care prescribing clinic a day a week, initiating hormone therapy for trans people living within the LHB area who had been assessed by the English GIC, but then found their local Welsh GP or endocrinologist unwilling to prescribe. This provided the model for a LGT. The instigating GP welcomed a number of colleagues from other parts of Wales to sit in on clinics as a means for them to develop the skills needed to run a similar service.

The setup of the WGS with LGTs was formally implemented between the planning function within each LHB and WHSSC. Each LHB appointed a senior gender lead, responsible for funding and appointing LGT clinicians to deliver hormone prescribing and monitoring, and speech and language therapy. The gender lead also oversaw funding for hormone prescriptions.

Local gender team prescribers across the health boards had a range of medical backgrounds. Most were GPs, but some were medical specialists – for example, in sexual and reproductive health. Taking up the role did not depend on having any prior experience with trans patients, but most had prior experience with hormone management in some clinical context. Some staff or practices came to be involved because of educational work being done by staff working to create the WGS, which stimulated commitment to address the health inequalities faced by trans people. Decisions on where to site LGTs sometimes took into account the strategic benefit of specific (accessible) locations, and the level of support that interested clinicians had from practice partners.

A further element in the initial design of the system was negotiation, between NHS Wales and the General Practitioners Committee Wales of the BMA, of a DES for providing HRT. The DES provides GP practices with additional payment for taking over prescribing and monitoring of hormones for people who are endocrinologically stable after around 12 months with a LGT, thus freeing up LGT capacity. Members of the WGS instigating network made the case to commissioners as to how important the DES was to the functioning of the new WGS system, as well as specifying the clinical content. The funding for the LGTs and the DES payments to GPs was ring-fenced legislatively.

The Welsh Gender Service in practice

Here we summarise the data reported as to what happens within the WGS specialist clinic, the LGTs and the peer support. Several interviewees highlight the close collaboration between organisations, disciplines and perspectives that shaped practices across the different areas. Umbrella Cymru staff saw acting as a ‘critical friend’, challenging established NHS practices, as an important part of their role.

Umbrella Cymru leads on engaging the trans community and other stakeholders with the development of the WGS. In addition to 6-monthly stakeholder meetings involving NHS managers and clinicians from across the service, there are monthly online meetings open to trans groups to review the service and disseminate information. Engagement is further sustained through having a trans community member on all staff appointment panels, including for clinical posts, and a community observer at GP training sessions.

All staff across the specialist clinic, Umbrella Cymru, and the LGTs are invited to monthly online professional development sessions, with inputs by external experts on different aspects of trans experience. These are seen as reinforcing staff cohesion across the system.

Benefits experienced

Welsh Gender Service staff saw the simpler assessment process, usually based on a single opinion, as an important achievement in terms of service-user experience and allowing more rapid progress through the inherited waiting list. One view was that most people who have been waiting for 2–3 years have already sufficiently demonstrated their determination to medically transition. Another was:

I think it’s well-received. I think people obviously understand having to see one clinician, they don’t understand having to see two, for two opinions. So yes, I think it’s made it more streamlined, and it’s also made it more palatable.

WGS staff member

Service users also had positive experiences of the integrated service provision:

… my three years with the [WGS] and with the local gender teams has just been so relaxed. It basically comes down to what do you want from your transition? What effects do you want, what is bothering you? […] And then sorting out a way to do it, it has just been so easy and so laid back in the best way… they know what they’re doing, and you feel very safe in their hands.

Service user

I think honestly the local gender teams service needs to just be adopted everywhere because it’s so much more efficient in every way. Because you get to know the local gender team which are local to you, it’s less pressure on the gender clinic itself. It encourages more GPs to know more about hormones so then maybe even further down the line, if someone only wants hormones and not surgery they could just be with their GP and not go to the Gender Service.

Service user

Gender clinicians experienced the fact that initiation and management of hormone prescribing was taken over by LGTs as a welcome release of their time from the kind of follow-up appointments that occur in other GICs. Some, who had worked or continued to work part-time in other GICs, contrasted the integrated way that LGTs took responsibility for blood testing and hormone management with the difficulties involved in typical GIC shared care arrangements. A great deal of time and effort in the latter typically went into getting hold of blood results from dispersed GP practices.

Within LGTs, prescribers welcomed their integrated responsibility for carrying out blood tests, monitoring and optimising hormone therapy, as well as taking overall charge of the relationship with the patient, including consent forms, and making sure that all contact details were up to date and included the correct name and title. Some emphasised the benefits of integrating hormone therapy with other aspects of primary care:

This is everyday life, this is everyday patients … one of my patients, not my gender clinic, came to an appointment with myself I believe for a bad toe or something like that, but it was on the day that my gender clinic was running. And then a week later she rung and said that she had feelings that, she was trans, she was a trans lady, and the following week, the first time ever, she had dressed more feminine and came to surgery to talk about her gender … There’s an element of the more you single out and create a specific route, we’re reinforcing prejudices without realising it. There’s no reason why someone should be going to a hospital for this treatment. That’s not right.

LGT prescriber

The benefits of this integration were reflected in the experiences of some of the service users. One described their relationship with their LGT doctor, who was also their long-term GP:

… she’s brilliant. So, I see obviously her every nine weeks for my testosterone injection. So generally we catch up then and if there’s been anything I bring it to her then.

Service user

Another spoke about how their LGT clinician was able to integrate hormone prescribing with the treatment of a chronic condition, within a collaborative way of working:

The doctor that I see for trans healthcare stuff, it’s phenomenal and she’s actually the one that has been helping me to get stuff seen for [chronic condition] and also, I go in about one thing, she asks about my history and sorts me out for 10 things I didn’t even know I was able to get help with, I love her … she showed me the results. Like she doesn’t just sit as this omniscient doctor, so she showed me what was going on, talked me through everything.

Service user

The use of telemedicine and digital messaging by clinicians, particularly within the specialist clinic, has improved the accessibility of services, regarded favourably in terms of both provision and information access:

And some of them I spoke to on Facebook, which is very cool … a lot of them are on Facebook and in the group on Facebook, so if I have a problem I can just post, and within a few hours, [doctor 1] and [doctor 5] are replying on the post, which is hugely helpful … if you just have a quick two-minute question, you can go directly to [doctor 5] and ask her. She was having an MDT meeting about me about my bottom surgery and she was asking me questions over Facebook about it. And she told me then and there what happened in the meeting where she was – it was a very weird experience.

Service user

Both service users and the range of WGS staff placed high value on the social and emotional support offered by the support service – several staff emphasised that this support was not simply needed because of the length of waiting times. A service user described the ethos of the support service:

… They didn’t seem to be trans people, but they just didn’t put a foot wrong. They were so open and empathetic and would never accidentally misgender anyone. They’re just really, really great, but they’re all quite Mumsie in a way, so you feel like they really care about you, which is really nice. I haven’t really had that experience in any medical setting before.

Service user

Challenges experienced

A number of system-level challenges were raised by both service users and clinicians. There were widespread concerns at the level of resourcing of the system as whole, given the size of the waiting list, even though the situation for all other GICs was recognised as being considerably worse. While service users were appreciative of the work done with them by the support service, some spoke of long delays in getting a response:

I still don’t know how they exist … Anyway, they were really brilliant and really, really nice to me, but their response times, it took an incredibly long time for me to get to speak to someone.

Service user

Some service users experienced their GPs as lacking understanding about current referral pathways – one was told by their GP practice that there were no gender identity referrals possible during the pandemic. On the other hand, some staff argued that there was a vanguard of younger GPs, often women, who were leading engagement with HRT for trans people. Once they demonstrated how straightforward hormone therapy management was for most patients, others in their practices would follow.

Some staff raised concerns that, even within the gender-affirming values of the WGS, there could be unwarranted additional assessment for some groups, because of clinicians ‘maybe sometimes still having a slightly narrower view of transness than they should, or they could, to support those people’. The danger was that certain groups of people might be seen as ‘unsure’ when, in their own minds, this was not the case. This was seen as a concern particularly for autistic people and also to an extent for non-binary people. As already mentioned, in Chapter 5, we discuss more generally the need for further consideration of how to avoid a two-tier system of assessment, with additional barriers or delays in obtaining care arising for some groups, such as autistic people, people with mental health conditions and those with learning difficulties. Such groups carry stigma and clinicians may be less experienced and skilled in understanding and working with them. We also discuss how similar dynamics may affect TBPoC, as well as non-binary people.

Several service users and clinicians were very concerned that there is no funding for hair removal under the WGS, seeing this as an integral part of providing psychological well-being for transfeminine people, as well as essential in preparation for any lower surgery, and an unreasonable financial burden to place on service users.

… we don’t get the advantages of English patients … We don’t get electrolysis.

Service user

While the WGS has taken steps to streamline the process for surgical referrals, several service users pointed out the impact of being dependent on providers elsewhere in the UK, the lack of capacity and waiting times involved, and the need to travel a considerable distance and usually recover away from home. Some were also concerned that the relatively new NHS hub system for surgical referrals was opaque in the way it worked and difficult to get information on progress from. Many of our interviewees had decided to raise money to pay for private surgery in the UK or in Poland.

A number of service users and staff also drew attention to the perceived inequities of waiting times for people still on the old pathway, working through a set of appointments with the English GIC, compared to those on the new Welsh pathway. Some had been denied requests to transfer, even when they required a sign-off for surgery rather than an initial assessment, and it was not clear what arrangements were in place for someone who had been through most of the pathway on the old system. There appeared to be unresolved issues of continuity of care for people who had first accessed transition-related care under the old pathway.

There were also some operational issues. Prescribing clinicians within LGTs reported having to take on the somewhat improvised creation of patient record systems for their WGS work, because there were no existing systems that linked effectively between the assessment clinic, the LGTs and GP practices that they might subsequently discharge people to under the DES. One LGT, for example, registers its service users as ‘temporary residents’ at the GP practice hosting the LGT, and then uses the practice’s electronic patient record system. This is, however, not accessible by the assessment clinic, which communicates patient details and treatment plans via e-mail. Any further communication about a particular case between the LGT and the specialist clinic tends also to be via e-mail. Consequently, the LGT prescribers have created a parallel paper file for each WGS service user, containing print-outs of e-mail exchanges with the specialist service and also with the service user themself. At the point of discharge to the person’s GP, a LGT clinician needs to craft a further letter, summarising the care plan, again sent by e-mail. As one LGT GP pointed out, there is no online NHS system for one GP practice to refer a patient to another GP.

At the time of interviewing, LGT clinicians indicated that they were either near their planned capacity or else would be at it within a few months. At that point, unless sufficient service users had been discharged on to other GPs under the DES, bottlenecks would appear at the LGTs. One LGT prescriber reported that they had just reached capacity and so were now starting a waiting list of people passed to them by the specialist service. The as yet handful of service users who could readily be passed on by the LGT included those who had previously been diagnosed and prescribed hormones by a private gender service, and so were already stable:

There was nothing to titrate […] There was nothing really to do for them. But at the minute I’m sort of a babysitter for want of a better term … it’s just how to get that next step up and running.

LGT prescriber

The DES was widely welcomed by clinicians as a mechanism for overcoming GP resistance to taking on seemingly unfamiliar work. However, interviewees indicated that progress has been slow in persuading practices throughout Wales to engage. A figure for one LHB was that just over 10% of practices, or 15 in total, had signed up.

Possible reasons for reluctance to engage with supporting trans patients on hormone therapy included the general pressure on GP workloads, given the tendency for many secondary clinical areas to identify aspects of care that can be managed in primary care. However, a more specific reason was also offered. Many GPs in Wales have been wary of engaging with HRT with cis women following concerns with risks of cancer and thromboembolism with earlier generations of treatments in the 1990s. Particularly in the context of the pressures on primary care during the pandemic, it has been difficult to engage GPs with more recent education about the comparative safety and simplicity of hormone therapy for trans people:

I think that’s the deep-seated, you know, the bad way that HRT was publicised in the 90s. I truly think that’s the actual block is people think hormones cause cancer … if we could get a room full of people I think you would get that out of them.

LGT prescriber

A further operational challenge stems from the fact that data protection rules have so far prevented a service-user data-sharing agreement being put in place between Umbrella Cymru and WGS. WGS has to send people information about the support service with a consent form for Umbrella Cymru to be able to contact them. While this was cumbersome but relatively straightforward for new referrals, it could be problematic to send out a letter from the gender service, using an appropriate current name and title, to people referred prior to the new service opening in 2019. For example, there was a danger that the person concerned had changed their name since the referral and that the name on the letter might ‘out’ them to the people they were living with.

Future developments

Of the service users interviewed, only one had experienced assessment within the WGS clinic – the others had been taken on by a LGT or were receiving HRT at their own GP practice after assessment elsewhere. Several users had strong views that the diagnostic approach in other GICs and private gender services was unnecessary.

Clinicians offered suggestions for the future development of the specialist clinic. This included the idea of a gender nurse specialist taking over many first appointments, for ‘review and endorsement’, with support from the endocrinologist. There was also a view that trans representation within the staff group should be increased, in combination with more consistent trans community representation at internal meetings as well as continuing the regular stakeholder meetings.

At the time of interviewing, some LGTs were planning an arrangement to have common hormone medications available onsite, to avoid the delays involved in first issuing a prescription that the service user needs to take to a pharmacy, and then in some cases make a further appointment for an injection. A further development under consideration in the way of working is that the current widespread use of telephone consultations within LGTs, backed up by e-mail exchanges, will be expanded further, to become the norm, with blood pressure and weight monitoring carried out at the service user’s local GP. This has benefits in terms of reducing travel time and increasing accessibility for service users. Some also anticipated LGTs introducing video consultations.

Several interviewees emphasised the importance of increasing the take-up of the DES among GP surgeries throughout all LHBs. A key mechanism for this would be widespread education on trans health care for practices, emphasising the simplicity of the new referral process to the specialist gender clinic, the straightforward nature of much HRT management, the guidance available and the ease of accessing support from LGTs. One model being considered by one health board was that practices could be put in small clusters, of perhaps seven. A lead practice for each cluster could then take responsibility for HRT patients under the DES, if not all practices signed up. GP education should also cover general health care and topics such as asking about contraception needs in an open way without making assumptions about patients’ relationships or sexuality. Clinicians should also be trained as to how to avoid referring to body parts in a gendered way.

At the time of interviewing, there were plans for making a business case for expanding the capacity for peer support. A related plan concerned facilitating the formation of local mutual support groups for people waiting for one-to-one support while on the WGS waiting list. We have already referred to the likelihood of the need to consider expansion of the capacity of LGTs.

Some LGT clinicians indicated they had been encouraged to train further in trans health care through a Royal College of Physicians postgraduate diploma. They anticipated that this would increase their expertise and standing, particularly with respect to being able to provide signatures for surgery. Some anticipated that this expanding pool of expertise could provide the basis for establishing a North Wales specialist clinic, thus improving accessibility. Related to this were ideas of increasing the visibility of gender services and care options on health board websites throughout Wales, rather than leaving this awareness-raising to local trans community networks and third-sector organisations. Leaflets or website downloads should be available much more widely across primary care and other NHS services. A video could be used to explain to people what to expect at their assessment appointment.

Introduction: ‘a case study of nothing’

This case study looks at existing services available for the assessment and provision of care related to gender incongruence for adults in Northern Ireland. Since there is currently very limited access to a specialist gender service within Northern Ireland, the case focuses on support provided by third-sector organisations to trans (including non-binary) people, and service-user experiences of waiting for care or healthcare access by other means such as use of private services, or self-medication [do it yourself (DIY)].

Contextualising existing services

Healthcare services in Northern Ireland are free at the point of delivery and provided by HSC, analogous to NHS England. The HSC Board (HSCB) commissions services, with Northern Ireland divided into five HSC Trusts which deliver them (Figure 16).

FIGURE 16.

Map of Northern Irish HSC Trust areas. Based on information from: http://online.hscni.net/hospitals/health-and-social-care-trusts/

Views of the cultural context of trans identities in Northern Ireland

One third-sector participant called Northern Ireland an ‘ethno-nationalist state’ where society is heavily divided into two groups with antagonistic views of national identity. The history of the Troubles has led to emphasis on:

… traditionally masculine behaviours, ideologies, roles … the gender roles have hardened and almost crystalised in these very, very strict almost again soldier roles. You have a purpose in society and that’s really obvious in gender roles.

Third-sector worker

This has implications for the making of transition experiences ‘extremely difficult’, even compared to those in other parts of the UK. Interviewees further pointed out that many within the population remain ‘traumatised by civil war’. Mental health services are severely overstretched as a consequence.

Experiences of the gender identity clinic

Several of our interviewees had found their GP receptive to referring them to the GIC, when it was still taking referrals. Two participants, however, experienced considerable difficulties. When one person went to their GP practice saying they wanted to transition, a GP first of all directed them to an out-of-date list of trans community groups. When this person made an appointment with a different GP in the practice, this GP referred them directly to an endocrinologist. After 2 months waiting for the appointment, the endocrinologist told them that he could not treat them but would have to refer them to the GIC. At that point, the GIC waiting time was 6 months, but this still felt like ‘being left in limbo’. Another (non-binary) person experienced their GP as dissuading them from a referral to the GIC apparently because this GP saw the GIC as only for people who wanted to go through a binary transition.

Of our interviewees, only three had direct experience of assessment and treatment through the GIC – the others had either decided against being referred or were still waiting to be seen, in one case still waiting for a first appointment after 6 years. One person on the waiting list was invited to an information session with a group of others, to hear about the process ahead. They reported that some of the named information sheets given out deadnamed participants. GIC staff were apologetic, citing a systems error, but this still created an impression of lack of caring and was seen as reducing service-user trust in the cultural competence of the service.

Of the three interviewees who had been seen by the GIC, one found the overall experience acceptable. Another described the initial appointment with two clinicians feeling like ‘interrogation to see if I was trans’, and experienced questioning concerning their sexuality as ‘weird and not really related’:

… it was kind of to see like, oh, do you have sex as a man or as a woman? I wasn’t really very clear on what the motive of that was.

Service user

This led to over a year of monthly meetings with a GIC ‘therapist person’, where future treatments were discussed repeatedly, as was the timetable for this service user to come out socially as their gender. They felt that the GIC was waiting for them to transition socially before prescribing hormones, whereas they themselves felt that hormones would make their social transition much easier. After ‘a year of battling’ they were referred back to the same endocrinologist they had seen previously and were prescribed hormones. They told the GIC they were unsure about whether they wanted lower surgery and were told they could ‘come back’ when they were ready to talk further.

A third interviewee reflected that the GIC process had felt adversarial and unsupportive:

The service right now is designed so that a cisgender person doesn’t accidentally transition … It’s not made for trans people or to support trans people […] And I think overall it’s so infantilising … And I really take issue with having to convince a cisgender person that I’m trans when their understanding of what trans is really hasn’t progressed past the 90s. I just feel like their psychiatric assessment is there to trip you up rather than actually encourage you into what you think and what you feel. It’s not a safe space. It’s not therapy by any mention.

Service user

A number of third-sector workers interviewed reported that people who had been through the GIC assessment had told them of experiences of pressure to conform to binary stereotypes. Their gender identity became ‘unexplored and solidified’.

People still have the GIC suit, the GIC dress that they wear to their appointments.

Third-sector worker

Third-sector interviewees also recounted reports from trans people of a stringent policy regarding mental health within the GIC. People who disclosed any mental health condition were likely to have their assessment suspended, apparently without recognition that living in a transphobic culture as a trans person, whether openly or not, is damaging to mental health.

They make mental health care and hormone care inaccessible at the same time […] There are still people who are still patients who were seen way before, who are scared to talk about their mental ill health. Because they’re worried about their hormone treatment is going to be taken away from them …

Third-sector worker

There was a variety of experiences of care following assessment at the GIC. Some reported that the system for regular prescribing of hormones through their GP, with periodic blood tests and reviews by the endocrinologist, had worked well. Others had less consistent experiences. Participants stated that their endocrinology reviews had become up to 2 years apart, apparently because of the demand for the endocrinologist, and questioned whether there were any succession plans for the single endocrinologist who supports the GIC. There appeared to be ‘no formal strategy, care package, intention for looking after trans people long term’. One person was left reflecting on the degree to which they had persistently to advocate for their own care as a trans person.

And it is truly exhausting to try and advocate for yourself, and also to have so many doors closed in your face.

Service user

Experiences of private gender services and self-medication

In response to long or indefinite GIC waiting times, or a perceived lack of a possibility of referral, both the third-sector workers and service users interviewed indicated widespread use of private services for accessing assessment, hormones, hair removal, voice coaching and gender-related surgery.

The cheapest private provider commonly used charged £30–£40 per month for hormone prescribing, in addition to the costs of initial assessment. Some people were able to fund this, but those with insecure or no employment found this ‘a huge burden’. Many resorted to crowd funding.

General practitioners were widely cited as refusing to enter into shared care arrangements with private gender services, for prescribing hormones or carrying out blood tests for monitoring. There were a few exceptions reported. Three participants had found their GPs were willing to work with a private service to monitor and prescribe hormones, as well as administer injections when needed. One person, however, chose to continue paying their private provider to monitor and prescribe on the basis of blood tests carried out at the GP surgery, ‘because they’re just a lot more reliable’.

Several interviewees referred to an emerging pattern where trans men with sufficient funds obtained a referral from a private gender service and then paid for private top surgery in Poland. We were told that there were no surgeons performing top surgery in Northern Ireland at the time of interviewing, and that, in any case, the only way to access this through the NHS would have been through the blocked GIC route.

Several interviewees described their experiences of private gender services as accepting of their own views on being trans and taking a pragmatic approach to finding out what they needed. One service user likened this to:

[an] informed consent approach … Trusting the patient I think was the biggest thing for me. The fact that they trusted what I said. And trusted that this is what I needed, rather than being interrogated for it all.

Service user

Another felt that private clinicians made it clear that intrusive questions needed to be asked to cover diagnostic guidelines, and that this contextualisation of the questioning had reduced the distress of answering. Private gender services were also experienced as prompt and reliable in correspondence.

Other interviewees recounted how they had decided to self-medicate with hormones, or relayed the experiences of others. The reasons in all cases were lack of access to the GIC and not being able to afford a private gender service. The remaining option for affirming their gender was buying hormones from internet pharmacies, or else receiving them through friends or networks who had found ways of accessing or sharing supplies.

General practitioners were widely experienced as refusing to provide blood tests or monitoring in such cases, or to prescribe as a harm-reduction measure, usually giving as a reason that they could not ‘take on liability’ for a person’s health if they were self-medicating. The choice to self-medicate meant bearing the associated health risks oneself. One person was told by a GP who they felt was ‘on side’ that the practice policy would only allow a one-off blood test. This person then felt in a state of constant anxiety about their health. However:

… it was very much I balanced the risk and the reward and on the whole, it has been a positive thing for me.

Service user

While wanting professional monitoring of hormone treatment, this person was also wary of giving up control of their dose to a cis doctor. They feared that a doctor would rigidly follow hormone ranges specified as normal for male and female bodies, rather than a trans person’s perceptions of what felt right to their own sense of their body and their gender.

Others expressed anger with GP refusals to prescribe as a harm-reduction measure, aware there is provision for this in medical guidelines:

… there are times when you need to stick your neck out for your patients. If there is harm coming to your patients, you need to implement supports for them, and inaction is harm.

Third-sector worker

Experiences of general health care within general practitioner practices

One interviewee reported positive experiences of staying with a small-town GP practice they had grown up with, where the GP was willing to engage positively when they came out as trans. Arguably the distance from an urban centre and a wider choice of GP practice made this the most viable option. This person had worked with the staff to improve their understanding of trans health care, and the use of appropriate pronouns. They felt that their continuing good relationship with their GP also meant that they continued to use health services in general with confidence.

Many more of the experiences of primary care were negative, however. We heard further accounts of trans people being treated dismissively by practice staff. There were examples of name changes and requests to change pronouns not being followed through on medical records and one example of reception staff apparently deliberately and repeatedly misgendering someone who felt that they had a good relationship with the GP themself. This person felt compelled to move to a different practice.

A number of interviewees reported accounts from other trans people that GPs had attempted to refer them to the GIC for health issues that were not connected with a medical transition, simply because they felt something like a skin condition might be hormone-related. A related development was that, with the GIC not functioning, some GPs had taken to referring people to third-sector LGBTQI+ or trans organisations, sometimes with physical health problems, sometimes because people wanted to transition and there was nowhere else to refer them. Third-sector staff felt placed in an impossible position by such referrals – they were unable to provide the help being sought.

Several interviewees reported that they lacked trust in GPs and other medical professionals, because of their health concerns as trans people not being taken seriously. In particular, there were concerns that most GPs did not know about the health conditions that trans people with different histories might be at risk of:

… what are things you can watch out for as a trans person? What are they more at risk for? Because the onus is very much on the trans person to know that … Because they absolutely know less than I know.

Service user

Several people reported there were a small number of trans-affirming and trans-inclusive practices in Belfast. However, even with these, third-sector workers reported that trans people had experienced huge variability between different practice staff – for example, in how much attention they paid to which health screenings are relevant to trans people with different anatomies. This added to the stress of navigating health care as a trans person and also in effect created disparities in the health care available to different trans individuals depending on which staff they saw.

Experiences of third-sector support

Several service users reported how they had received formal counselling or informal advice from LGBTQI+ or trans community organisations, as well as from trans friends. This had helped them decide how to move forward with private care or self-medication. One person, however, felt that there needed to be more options in terms of trans community support, recounting an experience of not fitting in with the views of others in a particular context.

One interviewee reported that they had benefited hugely from attending a week-long ‘trans training’ residential. This had included a variety of workshops, including on how to manage a name change. Above all, it had been valuable and also fun to meet and spend time with trans people.

Experiences of other health services

Two interviewees reported distressing experiences of NHS sexual health clinics. One received normative comments about the possibilities of becoming pregnant in the future, which they felt were irrelevant and impertinent. Another found that the rigid separation of binary male and female services led to them having to explain that their anatomy, identity and needs did not conform to either template. They experienced the clinical staff as not listening to or taking in important information, with one member of staff ignoring complaints about pain involved in a procedure, and another spending time asking ‘nosey’ questions about their history as a trans person. This led the person concerned to avoid NHS sexual health clinics, and also fed into a pattern of avoiding disclosing their trans status in other clinical settings, to avoid curious questioning.

Both these individuals contrasted their experience of NHS sexual health services with the respect shown when they attended sexual health screening clinics run by a LGBTQI+ organisation. They were, for example, asked for their pronouns as they registered with the latter.

Others reported avoiding NHS health care in general, because they expected to encounter either or both of an insensitive and inappropriate curiosity about their history as a trans person, or else a lack of cultural understanding of:

What trans means, knowing what kind of people and bodies and physiology is covered by the term woman and man … constantly using terms like male and female and referring to body parts.

Service user

Some of our interviewees had found NHS counselling for anxiety or depression helpful, although limited in what it could achieve given the short programmes on offer. A third-sector worker reported very negative experiences of trans people who had been referred to their local NHS mental health services – for example, being asked questions about how they have sex as part of a mental health assessment. Others considered that there was no effective mental health support for trans people.

Views on overall co-ordination of services

Several interviewees conveyed the view that the various services involved in trans health care work in a disconnected way, with separate appointment systems and lack of awareness of what is happening for a person elsewhere in the system. This applied to the GIC, the fertility clinic, the endocrinology clinic and the speech and language clinic, with the surgeons all being based in England. Service users living in other parts of Northern Ireland also pointed out that all of the transition-related services were concentrated in Belfast. They had to travel an hour or more to access each service.

Interviewees cited instances of young people discharged from the youth gender service, being told that they would have to wait 5 years before being seen by the adult service. Typically, they would be on a prescription for hormone blockers from the youth service, and their only option for continued treatment was to pay for care through a private adult gender service.

The experience of one interviewee illustrated a lack of co-ordination between GICs across the UK. This person, in their 20s, found unco-ordinated GICs unable to respond to their pattern of periodic relocations, which would be a normal expectation for many people at this stage of life:

Every time I move, I go to the back of the surgery list.

Service user

Community action to improve services

One third-sector interviewee felt that NHS services lack the capacity and funding to engage with trans communities and find out about their needs. Increasing awareness of trans health care seemed to be down to the initiative of individual members of staff. Many interviewees shared a view, often expressed angrily, that ‘the mainstream doesn’t want to know’, meaning that addressing the deficiencies in trans health care appeared not to be a consistent priority for the devolved administration or for the HSC service, in spite of the costs of not providing adequate care. These included, above all, the mental health burden carried by those unable to access any treatment, often leading to chronic suicidality as well as actual instances of suicide. There was also the increased burden placed on other NHS and third-sector services:

… it actually costs more to not fund the service because we’re seeing the impact on voluntary community sectors like ourselves or other healthcare providers or back into the NHS in primary mental health teams where people are self-harming …

Third-sector worker

Some pointed out the difficulties of gaining widespread public support for adequate services, in contrast to the recent successful campaigns for abortion rights and for equal marriage. Misleading coverage in the media implying that it is too easy for young people to transition was also damaging.

I’m constantly talking about the waiting list, the denial of service, the impact that that has on trans people’s mental health. So, we are trying to put that message out there you know with stakeholders … whether it be the police, whether it’s housing associations.

Third-sector worker

Summary and implications

The key features of this case are: a trans healthcare crisis with hundreds of people denied access to gender-affirming care on the NHS; for individuals, consequent use of private services and self-medication; and for the trans community the development of campaigning and support forums and services. Some trans individuals and LGBTQI+ organisations are involved in reviewing the current GIC and in planning future services, albeit within a context of needing to campaign for adequate funding, as well as for a greater degree of involvement of trans organisations. The context of the GIC not functioning has sharpened perceptions that trans healthcare needs to be accepted by government, and indeed the population, as a much greater priority, and that trans people need to be involved in the design and delivery of services.

All of our interviewees held the view that much transition-related care could in principle be delivered through primary care, with suitably trained GPs. Many also expressed a strong view that trans people need to be able to access suitably skilled counselling, but that this needs to be entirely separate from the system for accessing gender-affirming care. People need a space to explore feelings, including doubts and confusions about their gender identity, but this requires a removal of the fear that what they say will affect their access to hormones or other treatment. Chapters 5 and 6 of this report include a wider discussion of the issues raised by such views.

In the shorter term, priorities also emerged for improving the competency of GPs with the monitoring and prescribing of hormones, as well as improving the willingness of GPs to recognise their responsibilities for effective care of trans people. This would reduce the financial and mental health burden on trans people unable to access a GIC.