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Holti, Richard; Callahan, Evelyn; Fletcher, Jamie; Hope, Sam; Moller, Naomi; Vincent, Ben and Walley, Paul
(2024).
DOI: https://doi.org/10.3310/EWTA4502
Abstract
Background
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.
Objectives
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?
Design, data sources and participants
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.
Results
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.
Limitations
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.
Conclusions and future work
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.
Study registration
This study is registered as Research Registry, no. 5235.
Funding
This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/51/08) and is published in full in Health and Social Care Delivery Research ; Vol. 12, No. 28. See the NIHR Funding and Awards website for further award information.
Plain Language Summary
This research concerns improving the range of National Health Service health services that trans adults need. Trans people have a different gender from that assigned at birth or in early childhood. Not all need to make a medical transition to express their gender, and transition can take many different forms, including hormone therapy, various kinds of surgery, and other procedures such as hair removal. At the time of writing, trans people over 17 who need to make a medical transition can seek care at one of the United Kingdom’s 10 specialist National Health Service Gender Identity Clinics. However, people must wait a very long time before they are seen.
Through 110 in-depth interviews, as well as focus groups attended by 23 people, this research explored recent experiences of trans people receiving various kinds of health care. A further 55 interviews investigated the views of National Health Service and voluntary-sector staff involved in delivering trans health care. All of this has led to insights about how services can be improved, and the development of online courses for healthcare staff and for people who use services or support those who use services.
The research indicates what can lead to experiences of poor care that is not ‘joined up’:
- lack of respectful treatment of trans people by general practitioner practices;
- inadequate funding of services;
- lack of support while waiting;
- the extended and difficult nature of Gender Identity Clinic diagnostic assessments;
- breakdowns in collaboration between Gender Identity Clinics and general practitioner practices over hormone therapy;
- lack of National Health Service psychological support for trans people.
The research indicates some important ways to improve care:
- training in trans health care for general practitioners;
- third-sector peer-support workers for trans people who come to National Health Service 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 assessing them.