Safety first: delivering trans-inclusive care is everyone’s responsibility

Much like sexual orientation before it, transgender identity is on the slow but necessary path to depathologisation. Previously considered a mental or sexual health disturbance, we now recognise that being transgender or gender-diverse is a feature of the human experience that affects at least 1% of the population^​1–4​.

Communities around the world have socially and culturally reinforced the reality of gender diversity, including India, Mexico and Canada, which recognise the hijras, the muxe and the two-spirit people, respectively^​5–7​. Not only are these identities acknowledged; in some cases, they have legal protection. These gender-diverse communities have existed for centuries, challenging the erroneous assumption that to be transgender is a novel social phenomenon.

However, if transgender people are not new, why the sudden rise in disclosure? A common comparator used to describe this rise in visibility is with those who are left-handed^​8​. Left-handedness was previously stigmatised, having been associated with ‘evil’, with children forced to learn to use their right hands, along with a right-handed bias in the design of everyday items. This is a succinct example of how pathologisation and negative social attitudes can result in the underreporting of natural human diversity. Just like with left-handedness, as social attitudes become more accepting, disclosure will rise before eventually reaching a plateau^​9​. With the recent rise in the visibility of the transgender community in the UK, it is incumbent on us to reflect upon our healthcare systems and recognise where they may be limiting patient safety and outcomes. 

Unintentional barriers

An example of a systemic barrier within the NHS that commonly affects transgender people is the single marker used to record both sex registered at birth and gender identity — two factors that can differ in those who are transgender. Understanding the roles of both gender and sex in patient health is important for our ability to address interpersonal, social, physiological and medical aspects of care. However, the NHS lacks a routine method of transgender status monitoring and, even if the data were opportunistically collected, many current NHS systems would not be able to record or use it effectively. 

As the NHS links particular blood work, care pathways and screening programmes to a patient’s gender on their record, the lack of transgender status monitoring can cause serious issues for patient safety. For instance, transgender men receive no invitations for cervical or breast screenings and transgender women can face issues when attempting to access a prostate-specific antigen test^​10​. Furthermore, the lack of transgender status monitoring can limit the accuracy of our interpretations and calculations regarding medication safety^​11​. 

There is a need for transgender monitoring data on patient records to reliably report on trends in disease incidence, staging at diagnosis, patients in a pathway, toxicities, outcomes and other factors related to patient experience and safety. Evidence from NHS surveys show that transgender patients have poorer experiences with cancer care^​12​. However, these data alone are limited in their ability to advance change in the system at large, as these surveys reach a relatively small sample of transgender respondents.

Until systemic change is achieved, there is a burden on both the patient and healthcare professionals to overcome these barriers to care. However, the majority of people working in cancer do not feel knowledgeable enough in LGTIBQ+ healthcare, commonly resulting in transgender people educating professionals during their appointments^​13​. To ease this burden, more high-quality education for healthcare professionals oriented to patient safety is needed. 

One such example is our recent ‘TRANScribing’ resource, introduced to address the safe prescribing of anti-cancer therapies in patients on gender-affirming hormone therapy (GAHT)^​14​. This resource has also been expanded upon to include other health considerations beyond the cancer space^​11​.

Person-centred care

Our TRANScribing resource includes a focus on the concept of person-centred care, exploring inclusive communication for transgender patients and recapping these in quick reference flowcharts^​14​. Fundamentally, person-centred care encourages healthcare professionals to build rapport and gather a holistic picture of a patient’s needs. Often, this needs to be done quickly and under work pressures that do not allow for extended consultations. It is complicated further by the current social climate, which has led to transgender patients feeling less safe, less trusting and unable to discuss their concerns^​12​. To support the individual healthcare professional, the TRANScribing resource also cites the importance of using wider networks to support patient safety, including the specialist TransPlus UK Cancer and Transition Service^​15​.

The concept of person-centred care is included as one of the General Pharmaceutical Council’s nine ‘Standards and guidance for pharmacy professionals’^​16​. In particular, the standards state that pharmacists should “take responsibility for ensuring that person-centred care is not compromised because of personal values and beliefs^​16​”. This is a powerful reminder to us as healthcare professionals that it is our duty to meet patients where they are at so that we can provide optimal patient care and safety.

This concept can be applied to the use or desired use of hormone therapies in transgender patients. Although GAHT may seem novel or complex, it can bear similarities to other aspects of patient prescribing that may be more familiar. For example, feminising GAHT may include the use of gonadotropin-releasing hormone analogues and anti-androgens, bearing similarities to androgen deprivation therapy used in prostate cancer^​17​. This similarity has even been shown to reduce prostate cancer risk in transgender women receiving feminising GAHT^​18​.

It should be noted, however, that owing to the incredibly long waiting times at NHS gender identity clinics (see Table), some patients may opt to privately procure their hormonal care. As a result, this hormonal therapy may not be accurately recorded in their patient record and may, in some cases, differ from standard NHS protocols^​17​. This demonstrates the importance of building an open dialogue in healthcare in the interests of patient-centred safety and care.

Where do we go from here?

Sadly, the inequity faced by the transgender population continues to fly under the radar, despite evidence of numerous systemic and interpersonal barriers. Even in the recent Lord Darzi ‘Independent investigation of the NHS in England’, there was no mention of LGBTIQ+ issues in healthcare experiences, access or safety^​19​. It is time to bring our community out of the shadows and support our call to be counted and heard.

The healthcare system must change to reduce the burden on both the patient and the healthcare professional. Transgender people have suffered long enough in battling a system that is systemically resistant to their inclusion and, thus, safe care and management. Until the NHS is able to reliably monitor and track transgender status across patient records in a way that is both functional and protects patient privacy, we will be unprepared for identifying, monitoring and supporting this population group.

Alongside the rise in the visibility of transgender people, we have also seen the development of a broader sense of gender diversity, including non-binary people. In these patients, GAHT desire and use may differ to that of transgender men and women^​20,21​. As a result, we must be mindful to not only include this population in our progress, but also interpret studies on the effects of GAHT on the body with a personalised-care lens to appreciate the individuality of the initiation date, dosage schedule and drugs in use for each trans or gender-diverse person. 

Ultimately, it is time to recognise that trans-inclusive care is person-centred care, and therefore the outcomes and safety of this population are everyone’s responsibility.