Specialization and minority health care: hormone therapy for trans people in England

Introduction

‘Trans’ is an umbrella term for individuals who do not identify with the gender assigned at birth. ² Health care for trans people includes both specific interventions related to medical gender transition (although not all trans people access such interventions), and more general day-to-day health care interventions. Those who medically transition are typically discharged from gender-identity services once any desired surgical interventions are complete, with ongoing hormone therapy managed in primary care.^3,4 Like other patients, therefore, trans people receive the majority of their health care within primary care. In the UK, it is a legal obligation under the Equality Act 2010 that health care providers should ensure that trans people have equitable access to care.

In 2015–2016, the UK Parliamentary Women and Equalities Committee undertook a review of trans equality. ¹ The report identified systematic problems with health care for trans people throughout the National Health Service (NHS), at both specialized and primary care level, and reported a failure to uphold Equality Act obligations. These findings were supported by a national survey receiving responses from over 14,000 trans people, which in July 2018 reported that 40% of those trans people who had tried to access health care in the preceding 12 months had had a negative experience, most commonly lack of knowledge of their needs, inappropriate curiosity or avoiding care due to fear of discrimination. A full 80% of those who tried to access specialized gender-identity services reported difficulties, with long waiting lists cited as the main barrier. ⁵

The Women and Equalities Committee ¹ findings, quoted at the start of this article, suggest that the main problem within primary care is a lack of general practitioner (GP) understanding. The implication therefore – and this is common within discussions about equality – is that what is required is education. With regard to the specialized gender-identity clinics, the Committee highlight a capacity problem and a need to train more practitioners. While education and capacity are undoubtedly important proximate problems, this paper argues that the construction of ‘specialization’ within health care has strongly influenced debates about the provision of hormone therapy for trans people. Fundamentally, the Women and Equalities Committee review did not challenge assumptions about specialization, and largely dismissed calls from patients that prescribing structures should be substantially reformed. This paper critically outlines contemporary debates regarding hormone prescription both in England and internationally and suggests that there is a need for greater critical analysis of the impact of constructions of ‘specialization’ upon minority and stigmatized health needs.

Structure of gender-identity health care in England

Access to medical transition in the UK and internationally has been subject to ongoing debates about pathologization, power and medical control. While early services were ad hoc and often demand-led, from the 1960s, there was an impetus to formally define diagnostic criteria and develop international Standards of Care.^6,7 Diagnosis offered a clearer rationale for treatment (potentially making it more accessible to patients dependent upon state or insurance-based health systems), but imposed standardized requirements, resulting in patients often feeling obliged to tailor their accounts to the diagnostic criteria.^2,7 The first gender-identity clinic in the UK was established in 1966, around the time of the shift to formal diagnosis and clinician oversight. ⁸ However, NHS provision of interventions related to medical transition remained inconsistent and disputed throughout the remainder of the 20th century. The High Court in R v. North West Lancashire Health Authority, ex parte A, D, & G⁹ ruled that gender-affirming interventions constituted a medical need, and that while health authorities could deem such interventions a low priority, they could not lawfully operate a blanket ban. However, many local health trusts funded medical transition on an exceptional basis only well into the 21st century. ¹⁰

Arguably, de-prioritization of trans health care became harder to justify after the Equality Act (2010), which prohibited discrimination and established a duty to promote equality. More structurally, NHS England reorganization following the Health and Social Care Act 2012 moved commissioning of adult gender-identity services into specialized commissioning, to be funded and commissioned on a national basis, not by local health bodies. A national gender-identity service protocol was introduced for England, originally intended to be an interim document for 2013–2014 but still in place in 2019. ³ This standardized a care pathway and established a list of core commissioned procedures, although there continued to be noticeable inconsistencies between gender-identity clinics.^1–3 The effect of national specialized commissioning was that all trans patients in England were offered access to the same treatments, unaffected by local priority-setting. However, capacity at gender-identity services did not keep pace with demand, with waiting lists at times reaching four or five years, resulting in the Women and Equalities Committee’s findings of ‘deficiencies’.^1,2,4,11

Defining ‘specialized’

Formally, NHS England ¹² has four criteria for deeming a service specialized, none of which relate to the possibility that local commissioning might be inconsistent or discriminatory. The four criteria are:

The number of individuals requiring the service;

Criteria two and four both relate to costs. They appear intended to address issues such as small Clinical Commissioning Groups having to purchase expensive interventions or equipment required by very few patients, resulting in significant or fluctuating costs that would be more efficiently pooled across a larger area. Implicitly, these questions of cost-effectiveness are dependent upon the response to criteria one and three: how many people require the service and who can provide it?

With regard to the first criterion, NHS England does not set a specific threshold population figure. However, the number of individuals seeking to access gender-identity services in England and internationally has increased rapidly. ² Figures from 2015 report that 11,153 adults were either attending a English gender-identity service or waiting for an appointment. ¹¹ In addition, there is an unknown (but cumulatively increasing) number of patients who have already medically transitioned and who may have distinct ongoing health needs (e.g. access to hormone therapy) but who are not current gender-identity service patients. Given the increasing number of patients, and that existing services are already oversubscribed, the arguments for specialization based upon small population size will weaken over time.

It is the third criterion for defining a specialized service that is most significant and most disputed for gender-identity services: the number of professionals able to provide the service. Medical transition encompasses a number of different interventions, and not all individuals access all interventions.^3,4 Some interventions undoubtedly do require specialized skills: there is only one surgical team in the UK that performs genital surgery for trans men, for instance, and there is no suggestion that this procedure could be undertaken in generalist units. In contrast, the question of who is ‘able’ to undertake assessment and hormone prescription is more nuanced. Hormone therapies used by trans people are commonly prescribed to other patients as hormone replacement therapy. Most are self-administered by the patient; some are administered by a practice nurse. ⁴ These are not therefore medications that are unusually difficult or costly to provide, and potential side effects are similar to those that GPs would be managing for other patients taking the same medications. ⁴ The General Medical Council ¹³ states that once the patient has been discharged from the gender-identity service, no special skills are needed to prescribe and monitor hormones for trans people, and this can be safely managed within general practice. On a technical level, therefore, primary care services can and do manage these medications.

The specialized element therefore appears to be the process of assessing trans people’s needs and determining which interventions are appropriate. With regard to assessment, UK gender-identity services work to the World Professional Association for Transgender Health’s standards of care.^3,6 However, these standards do not suggest that a high level of specialism is required in order to assess the needs of trans adults. On the contrary, they indicate that the requirement is ‘basic general clinical competence in the assessment, diagnosis and treatment of mental health concerns’.^6,14 The specific minimum competencies listed are a master’s level clinical qualification; competency to undertake diagnosis; counselling experience; knowledge of gender diversity and ongoing professional development.

Notwithstanding these relatively straightforward competencies (and, indeed, the fact that there is no established training for specialists), the standing position in the NHS has been that the decision to commence hormone therapy for a trans person should ordinarily be taken by a specialist working in a gender clinic.^1,15 However, given the long waiting times, guidance by professional bodies and regulators has suggested that in some instances GPs could initiate hormone prescriptions as an interim harm reduction measure, a practice known as ‘bridging’ prescriptions.^13,16

In practice, the issue of hormone prescribing for trans people is heavily disputed, with a direct impact upon patient treatment. Evidence submitted to the Women and Equality Committee indicated that some health areas prohibit GPs prescribing hormones for trans people, even when hormone therapy had been recommended by the specialized gender services. ¹⁷ A Specialised Services Circular was issued in 2016, highlighting that GPs had a duty to cooperate with specialized gender services in prescribing. ¹⁵ However, the British Medical Association ¹⁸ argued that cooperation needed to be agreed on both sides, and prescribing should only take place where GPs were confident with the medications involved, and satisfied as to a number of other considerations, including that the medication was to the patient benefit. The issue of bridging prescriptions was particularly controversial, with GPs feeling that they were being expected to initiate specialized interventions with little support, potentially opening themselves up for liability claims^18,19

This dispute highlights a conflict between individualized professional medical standards and structural issues of equitable health care for patients. From the medical practitioner’s perspective, it is hard to dispute the principle that doctors should be familiar with the medications they prescribe and certain they are of benefit. However, this may also reinforce inequalities for minority and marginalized populations. As a matter of numbers, GPs are likely to be less familiar with medical treatments used in minority populations. Medical school curricula on Lesbian, Gay, Bisexual and Transgender health have been previously noted to be limited. ²⁰ One commonly cited area of concern is that most hormonal therapies are not licensed for trans patients and are prescribed 'off-label'. ¹⁹ However, there is little economic incentive for pharmaceutical companies to licence medications for small populations: off-label prescribing is also common in paediatric practice.^8,15 The issue of GPs being certain that medication is to a patient's benefit is problematic in the context of social discourses that present trans people as unreliable or incapable, and that suggest that being trans is undesirable.^2,7 As a consequence, medical perceptions of what is to a trans patient's benefit may be coloured by an assumption that it would be preferable to deter patients from medical transition.

Both prejudice and ignorance regarding trans needs undoubtedly still exist with UK health care, with professionals reporting a lack of confidence in meeting trans people's needs, and patients reporting both ignorance and outright discrimination.^5,21 From a patient perspective, it may be practically difficult – and functionally largely irrelevant – to distinguish between medical practitioners who are genuinely concerned that they lack the knowledge to safely prescribe; practitioners who use lack of knowledge as an excuse to discriminate and, even more nuanced, practitioners who do not believe they are prejudiced or ignorant, but who subconsciously apply a higher barrier to trans health care than they would for other health care decisions.

The British Medical Association ¹⁸ and the Royal College of General Practitioners ¹⁹ highlight another consideration for doctors: fear of litigation if patients later regret medical transition or are unhappy with the interventions received. In an ideal world, medical liability would align with patient outcomes. In practice, with trans health care, there is a tendency to focus upon the perceived risks of intervention – despite the fact that rates of regret are low – and underestimate the benefits.^14,22 As Serano ²³ points out, there is an underlying structural prejudice (‘cissexism’) in the presumption that prescribing hormones to someone who is not trans is fundamentally worse than causing a trans person harm through limiting access to care they need, despite the fact that the latter appears to be far more common than the former. Pearce ² observes that independent private UK practitioners who have reduced barriers to care for trans patients have frequently faced regulatory action, compared to relatively little reaction to incidents of health care discrimination against trans people. NHS failings may contribute to unsafe patient actions such as self-medication, but this does not necessarily incur medical liability. In addition, despite recent reforms, the regulation of doctors is still predominantly based on self-regulation within the profession, applying a standard based upon what is considered acceptable by one’s peers, with relatively little reference to patient input.^24–26 The expectation that doctors will be regulated in line with the standards of their professional bodies offers little scope for addressing situations where the established practices of the medical profession are structurally discriminatory.

Alternative options

Consultations with UK users of gender-identity services report support for significant structural change to such services.^1,27 In particular, patients have called for ‘informed consent’ approaches, such as those operating in Canada and the United States.^6,22,28 Informed consent models vary in practice, but the key feature is that the involvement of mental health professionals is primarily therapeutic and at the request of the patient, rather than as a ‘gatekeeping’ assessment.^6,22,27 Although not strictly central to the model itself, informed consent approaches typically operate within community health settings, often with an emphasis on the involvement of trans people in service design and delivery.^6,28 Hence, there may be some conflation between calls for informed consent as a model for decision-making and calls for localized, community-led services. The ‘informed consent' model has, however, been resisted by medical professionals and politicians in the UK, who typically perceive a need to retain explicit professional oversight of medical intervention, in part due to issues of resource allocation within the NHS.^1,17,19,27

A compromise option, put forward in the NHS England consultation and receiving support from both patients and doctors, was the suggestion that ‘GPs with special interests’ should be offered additional training to allow them to undertake the prescription of hormone therapy. ²⁷ The intention is that GPs with special interests will provide more localized, easier to access care, while also having more expertise than the average GP. Although not explicitly stated, there may be an expectation that additional training and regular interaction with trans patients would help to make GPs with special interests more comfortable working with trans patients and less prone to prejudice. The danger is that without adequate resourcing, GPs with special interests could also develop ballooning waiting lists, may still be some distance from patient’s homes and could expedite the process of other GPs refusing to engage with trans health care at all, resulting in fragmentation and a loss of continuity of care. In addition, given NHS England’s rejection of an informed care model, the implication is that GPs with special interests will be engaging in an assessment process, albeit one that is closer to home and led by a primary care practitioner. Existing informed consent trans health clinics emphasize the importance of integrating patient-focused service delivery with advocacy and education activities throughout the organization and within the wider community. ²⁸ If structural reforms are attempted without also addressing broader contextual issues such as lack of knowledge and residual cissexism, this may result in quality and accessibility of care falling in some areas, potentially reintroducing the 'postcode lottery' situation that existed prior to 2012.

Conclusion

It is well established that it is beneficial for trans adults to have prompt access to hormone therapy. ⁶ It is largely undisputed that the current situation in England is failing to deliver this. What is disputed is the solution. GPs want specialized services to assume responsibility; specialized services want to retain authority while ensuring primary care follows their directions; patients want localized and timely access to care. The proposed move towards primary care services is in line with broader English health policy and appears to now have reached consensus from different parties. However, commissioners and providers introducing the new model need to maintain a critical focus upon what they hope to achieve.

This paper has highlighted that the concept of ‘specialization’ has often been invoked in this debate, but that there has been a failure to critically consider what specialization is intended to achieve. As a consequence, specialization with regard to trans health care has often been invoked in the context of power dynamics and prejudice, at times acting as a mechanism for counteracting geographic variation, and at other times being used as an excuse for failing to critically address structural inequity. For the new model to work, there is a need for providers and commissioners to reflect upon why particular services are perceived as specialized, and to challenge underlying presumptions and prejudices.

This paper has focused upon gender-identity services. However, similar questions about the function and operation of specialization may apply to other aspects of health care where there are intersections between small patient numbers, a genuine need for medical intervention and a history of stigma. If primary care is perceived to be reserved for health needs that affect a large number of patients and that practitioners see as familiar, comfortable and uncontroversial, then primary care will tend to exclude or underserve marginalized minorities.

This paper also points to a need to critically consider how issues of inequity and exclusion in health care are tackled. When it has been noted by a government committee that health services are routinely failing to meet legal equality obligations, professional consensus is unlikely to provide sufficient impetus for improvement. Legal or regulatory remedy may be socially normative and skewed towards penalizing active bad practice rather than tackling subtler questions of ignorance and exclusion. Challenging preconceptions that trans health care is necessarily specialized may assist with shifting decision-making towards a community level, allowing trans people to be integrally involved in planning, designing, delivering and holding to account the services they use.