Authors' objectives: This research concerns improving the National Health Service health services trans adults need. These include the national specialist Gender Identity Clinics that support people making a medical transition. Not all trans people need to make a medical transition, and transition can take many different paths. Waits to be seen by Gender Identity Clinics are, however, several years long, and there may be significant problems of co-ordination between different aspects of transition-related care, and between transition-related care and general health care. The main objectives were to understand: Which factors make services more or less accessible and acceptable to the variety of trans adults? How initiatives for providing more person-centred and integrated care can be successfully implemented and further improved? Throughout this report we use the term trans to refer to the diverse people whose gender identities do not correspond to how they were assigned at birth or in early life. The term includes non-binary people. This research concerns improving the range of NHS health services that trans adults need. These include services intended to support people in making a medical transition, and many other services relevant to wider aspects of physical and mental health and well-being. Not all trans people need to make a medical transition, and transition can take many different paths, including hormone therapy, various types of surgery and other procedures such as hair removal. At the time of writing, trans people over 17 years of age who need to make a medical transition can seek care at one of the UK’s 10 specialist NHS Gender Identity Clinics (GICs), sometimes also known as Gender Identity Services (GIS). In recent years, people encounter very long waiting times before they are seen. Further, issues of co-ordination arise between different aspects of transition-related care and also between transition-related care and general health care. Because of the barriers to accessing NHS care they need within an acceptable timescale, many trans people in the UK, who can afford to, turn to private providers of hormone therapy and gender-related surgery, both within the UK and abroad. Many also access private provision of procedures that are important to their transition which are not offered by the NHS, such as facial feminisation surgery. This research has sought to build on initiatives to improve care and its integration, including those involving third-sector lesbian, gay, bisexual, transgender, queer and intersex, plus (LGBTQI+) organisations working in partnership with primary care organisations or with GICs. It has also explored how lessons about the effective integration of trans health care can best be implemented in the context of an NHS that is still coping with the impact and consequences of the coronavirus disease discovered in 2019 (COVID-19) pandemic.

Authors' results and conclusions: The following undermine person-centred co-ordinated care and can lead to experiences of harm: lack of respectful treatment of trans people by general practitioner practices; inadequate funding of services; lack of support during waiting; the extended and challenging nature of Gender Identity Clinic diagnostic assessments, sometimes experienced as adversarial; breakdowns in collaboration between Gender Identity Clinics and general practitioner practices over hormone therapy; lack of National Health Service psychological support for trans people. Case studies indicated ways to improve care, although each has significant unresolved issues: training in trans health care for general practitioners; third-sector peer-support workers for trans people who come to National Health Services; gender services taking a collaborative approach to assessing what people need, clarifying treatment options, benefits and risks; regional general practitioner-led hormone therapy clinics, bringing trans health care into the mainstream; psychology services that support trans people rather than assess them. The findings have significant implications for commissioners and providers of existing National Health Services gender services, including recently established pilot services in primary care. In particular they point to the need for assessments for access to transition care to be more collaborative and culturally aware, implying the value of exploring informed consent models for accessing transition-related care. Further research is needed to investigate how far the findings apply with particular subpopulations. Learning from the national sample of interviews and the case studies of initiatives for improving care has implications for improving care within the established model of trans people accessing transition care through a tertiary GIC service. It also provides insight into how to improve the primary care gender services that were recently established by NHS England (NHSE). The findings suggest that a primary care gender service has great potential for integrating different aspects of transition-related care with each other and with other aspects of health care that a trans person needs. Key directions for future practice include: mandatory trans healthcare standards and training for primary care, as well as for NHS services in general; peer support attached to gender services, with peer workers included within the professional team, able to answer questions from the service users on behalf of the service; psychological support made available to people using gender services, with the separation of therapeutic support from diagnostic assessment; further development of collaborative forms of assessment, including revisiting of the existing diagnostic guidelines in the light of how some areas of questioning can be experienced; fundamental reconsideration of the level of funding of trans health care, to address the egregiously long, damaging waiting times that trans people experience. Increased funding should, however, take account of the findings about effective models for delivering person-centred, co-ordinated care; greater involvement of trans staff in healthcare delivery, and of representatives of trans communities in the management and shaping of gender services and health services more generally. Interviews with trans service users further indicated a widespread view that gender services should move, in the longer term, towards an informed consent model (ICM), which would dispense with the requirement for a psychological or psychiatric diagnosis before gender-affirming treatments can be accessed. Research on ICMs in the USA and Australia suggests ICMs have the potential to combine a person-centred focus on the goals of care with medical diligence and the authorisation of treatment. The findings from our case studies suggest the benefits of care practices consistent with an ICM, as well as issues that would need to be resolved in order to implement one. These potential benefits and issues require further exploration by policy-makers and clinicians, working together with trans communities.

Authors' methods: An online and paper screening survey was used to gather data on demographics and service use of trans people across the United Kingdom, with 2056 responses. Researchers used survey data to construct five purposive subsamples for individual qualitative interviews, identifying groups of people more likely to experience social exclusion or stigma. There were 65 online interviews. In addition, 23 trans Black people and people of colour attended focus groups. Six case studies were completed: four on initiatives to improve care and two on experiences of particular trans populations. Fifty-five service provider staff and 45 service users were interviewed. Some contexts of care and experiences of particular groups of trans people were not addressed sufficiently within the scope of the project. While efforts were made to recruit people subject to multiple forms of stigma, there remained gaps in representation. Drawing on over 160 qualitative interviews, this research sought to understand the dynamics underlying experiences of poor and better care. These findings are of broader relevance to helping a wide range of health services to improve the care they provide for trans people. However, some contexts of care and needs of particular groups of trans people could not be addressed sufficiently. There were some gaps in representation of people who are subjected to multiple forms of social stigma. In particular, further research is needed regarding: The experiences of trans people at clinics that have adopted ICMs, using a similar level of qualitative detail as we were able to pursue during our ICTA interviews. What forms of assessment are appropriate for groups of trans people whom clinicians may regard as having an impaired ability to understand and consent to specific treatments, such as those with mental health conditions, those with learning difficulties, and some autistic people. These are groups who typically experience multiple forms of stigma across many settings, including health care. Research should also seek to explore what kinds of additional social and psychological support should be provided to accompany gender-affirming medical care for such groups.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/17/51/08

Year Published: 2024

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/EWTA4502

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: United Kingdom

DOI: 10.3310/EWTA4502

Organisation Name: NIHR Health and Social Care Delivery Program

Contact Name: Rhiannon Miller

Contact Email: rhiannon.m@prepress-projects.co.uk