Transgender people and healthcare barriers

Under the NHS constitution, 92% of patients should receive elective treatment within 18 weeks of being referred by their GP.¹ However, for people looking to access transgender healthcare, the average wait time is three to five years.²

While the NHS is currently undergoing one of the most challenging periods in its history with around 6 million patients waiting for hospital treatment³, long waiting times for gender-affirming care can elongate feelings of gender dysphoria and have a devastating impact on the mental health and wellbeing of transgender people.

Trans healthcare is offered free on the NHS, but someone wanting to access these services will first have to be referred to a Gender Dysphoria Clinic (GDC) by their GP for an assessment.

At the UK’s largest Gender Identity Clinic (GIC), the Tavistock and Portman clinic, there are currently 10,648 people on the waiting list, and they are only now offering first appointments to people who were referred in December 2017.⁴

Research has shown that there are higher levels of suicidal ideation and suicide attempts in people with gender dysphoria than in the general population, with one study finding almost half (48.3%) of participants with gender dysphoria reported suicidal ideation, while nearly a quarter (23.8%) had attempted suicide.⁵

Furthermore, when trans people seek healthcare for reasons unrelated to their gender, they often experience significant barriers. This delays essential access to healthcare which can exacerbate health risks and result in poorer outcomes.

Nearly half of transgender individuals have had at least one negative experience with a healthcare professional

According to the British Journal of General Practice (BJGP)⁶, GPs play a critical role in providing a safe space for gender-questioning and transgender people to disclose their issues and get access to appropriate support and referral pathways.

However, research shows that health professionals often report discomfort and lack of confidence when providing care to transgender patients, and education on this topic is lacking in medical schools.

A recent study undertaken in New Zealand found that nearly half of transgender individuals have had at least one negative experience with a primary care healthcare professional, and these experiences are associated with an increased risk of psychological distress and suicidal thoughts.⁷

The study, published in the journal Family Practice, used data from the 2018 Counting Ourselves survey, which included 948 transgender individuals over the age of 14.

Participants provided feedback on their negative and positive healthcare experiences and mental health. The researchers then assessed psychological distress levels on the basis of the anxiety and depressive symptoms that the individuals had experienced in the previous four weeks, as well as the number of self-harm attempts and the frequency of suicidal thoughts or behaviours in the previous 12 months.

The results revealed that 47% of participants had to teach a primary care doctor or GP about trans or non-binary people so they could get appropriate care, while over a third (37.1%) said they were asked unnecessary or invasive questions about being trans or non-binary that were not related to the reason for their visit.

Furthermore, roughly a quarter (26.5%) said a provider knowingly referred to them by the wrong gender, while one in five (20.9%) said a provider knowingly used an old name they were no longer comfortable with.

Some participants also struggled to receive gender-affirming healthcare (such as hormone therapy, speech therapy, or genital or breast reconstruction), with 14.2% reporting that a provider refused to discuss or address such care, while nearly one in 10 (9%) were refused a referral.

Negative healthcare experiences appeared to have a knock-on effect on mental health and wellbeing, as the researchers found they were associated with higher levels of psychological distress, non-suicidal self-injury (NSSI) and suicidality.

Each additional negative experience was associated with a 20% increase in likelihood of having a suicide attempt, reaffirming known associations between mental health and healthcare experiences and the importance of positive healthcare interactions.

High-quality gender-affirming and routine primary care for transgender people may improve mental health

However, participants did report positive experiences too, and over half (56.9%) felt they were treated the same as other patients when they consulted primary care doctors for needs unrelated to gender-affirming care.

A similar number (48.2%) also said their primary care doctors were supportive of their needs related to gender-affirming care, while slightly fewer (42.6%) noted that doctors were willing to educate themselves about gender-affirming care.

Encouragingly, participants who had supportive experiences with primary care doctors had lower psychological distress and were less likely to have attempted suicide in the past 12 months, with each additional supportive experience with primary care doctors associated with an 11% decrease in likelihood of having made a suicide attempt.

For this reason, the authors say it is “essential” that GP trainees are taught the basics of transgender healthcare, and that barriers to medical student transgender healthcare teaching are removed.

By doing so, they say “there is potential to further increase these supportive experiences, which may result in further reductions in psychological distress.”

The authors say the findings therefore “reinforce the urgent need to provide high-quality gender-affirming and routine primary care for transgender people” as it “may help to address the large mental health disparities faced by this population.”

98% of survey respondents do not think that NHS transition related care is completely adequate

While the above study specifically relates to the experiences of trans people living in New Zealand, people with lived experience in the UK report similar experiences.

Fifty-eight-year-old Ann Sawyer was referred to a gender clinic seven years ago, but said she had “problems with GPs” when trying to access gender-affirming care, a process she describes as “very traumatic”.

“I reached the point where I was getting home from work and crying and I felt like I couldn’t do it anymore, so I made an appointment with my GP,” she said. “I told her that I needed a referral to a gender clinic, but she tried to fob me off and refer me to some local counselling.”

“She told me that people would always laugh at me and see me as a man with my big hands. I really had to insist to get the referral I needed.”

Because gender clinics are a tertiary service and can’t prescribe hormone therapy, Ann says it is vital that “all staff in GP practices receive training on how to sensitively handle gender questioning and LGBT people.”

UK research reveals that Ann’s story is not unique, and the Trans Lives Survey 2021 found that 98% of trans people do not think that NHS transition-related care is completely adequate.⁸

Seven in 10 (70%) reported being impacted by transphobia when accessing general healthcare services, while 14% said they had been refused GP care on account of being trans on at least one occasion.

These negative experiences have led to a reluctance among trans people to seek healthcare when they need it, with 57% saying they avoid going to the doctor when unwell.

The survey also revealed Black people, People of Colour (BPOC), and disabled people had typically more negative experiences, with BPOC respondents experiencing transphobia from trans-specific healthcare providers at more than double the rate of White respondents (13% compared to 6%), and trans people with disabilities suffering greater delays at 93% compared to 85% of non-disabled people.

As a result of the study’s findings, the authors of the report asked the NHS to investigate the transphobia, racism and ableism within the NHS, reform the GDC system, review transition-related care pathways, reduce surgical waiting times and waiting lists for appointments, and provide appropriate and timely mental health support for those impacted by delays.

Six months on from the report’s publication, Baroness Natalie Bennett of the Green Party asked the government what progress has been made to ensure healthcare is fully available for transgender people.

In response to her question, Lord Kamall said the NHS is “establishing pilot gender dysphoria clinics”, with clinics now open in London, Cheshire and Merseyside, Manchester and the East of England.

“These clinics will be evaluated shortly, which will establish the viability of the new model. This will reduce waiting times for patients and ensure the availability of these services for transgender people,” he said.

Health and social care for older transgender adults

While research focusing on the health needs of older transgender adults in the UK is scarce, a US study⁹ found that transgender older people were at higher risk of poor physical health, disability and depression compared to their cis-gender peers.

A survey by Age UK¹⁰ has also revealed that while many trans people have experienced transphobia while accessing healthcare, the majority expressed confidence that the NHS would meet their future health needs. However, fear of discrimination was much more significant when it came to accessing social care services; the reasons for this are multifactorial.

The general underfunding of the social care system was a primary concern for trans people, with many worrying that a lack of care provision may see them forced to rely on family members who have not accepted their sexuality or gender.

LGBT older adults are twice as likely to live alone as their heterosexual/cis-gendered counterparts and more than four times as likely to have no children. This reality means that the sort of informal caregiving often assumed to be in place for older adults may not be there for LGBT individuals as they age.

Fear of cognitive decline was also a major concern among the respondents, as many were worried their advocacy and identity may be neglected if they were to be diagnosed with dementia or another form of cognitive decline.

As Age UK explain: “Dementia naturally results in distress and confusion, but this may be exacerbated in LGBT+ people with dementia who may struggle to deal with negative perceptions of their sexuality or gender while in residential care or face issues when they are not able to advocate for themselves. An older transgender person experiencing cognitive decline, for example, may forget who they have come out to, or indeed that they have transitioned.”

A two-year study at Swansea University¹¹ which looked at the health and social care needs of trans adults aged 50 and over revealed similar concerns, including discriminatory treatment from social care staff and from other service users and residents, and what the impact would be if their mental capacity declined and they became heavily reliant on others for assistance with intimate practices, such as dressing and bathing.

The study also drew on responses from 165 health and social care professionals across Wales, and while respondents appeared familiar with trans issues, there were notable gaps in knowledge about trans issues in later life, mainly around medical and legal matters.

For this reason, the report states there is a need for compulsory education and training both in primary and secondary healthcare services as well as in pre-qualifying professional programmes, including social work.

Improving transgender education and training for health and social care professionals

It is clear that a lack of transgender training and education for health and social care professionals act as major barriers for trans people looking to access high quality health and social care.

Social care staff would benefit from LGBT training in order to reduce stigma, improve care and ease the fears of Trans individuals about what will happen to them as they get older. However, involving those with lived experience is essential in the development and delivery of this training, and would help to improve the visibility and inclusion of transgender people in the social work profession.

Both the Royal and Irish College of General Practitioners are advocating for an urgent increase in specialist capacity and increased training needs for GPs. However, this will not address the present needs of the thousands of trans patients currently on the waiting list for gender-affirming care.

To address this immediate need, the BJGP says² more blended approach to treatment provision may be necessary, with some GPs developing a special interest in the field and providing support to their primary care colleagues, an approach that has been successfully developed by the Indigo project in Manchester.

They suggest the approach could be amplified by remote access to specialist services, a model which has already been adopted for community hepatitis C treatment and in the management of Covid-19.

Importantly however, the BJGP add that the medical curricula must ramp up its LGBT training in order to instil confidence in doctors providing gender-affirming care, as this “is the most effective way to improve healthcare delivery to this population.”

LGBT training, they add, must therefore be added to both undergraduate and postgraduate medical GP training and professional development in order to “challenge GPs to question their [potentially] cis-normative and heteronormative assumptions that can negatively impact the care of their LGBT patients.”

For more information and guidance on Trans healthcare, please visit the General Medical Council’s ethical hub. A Transgender rights toolkit and answers to common questions from older Transgender people can be found here.

If you are a trans or non-binary person looking for further information or support, the Terrence Higgins Trust has compiled a list of organisations and online resources which you can access here.

References

NHS England. “Referral to Treatment”. enhs.uk. Undated. Accessed March 2022 at: https://www.england.nhs.uk/rtt/.
Creative Support. “What Is Trans Healthcare?”. co.uk. Undated. Accessed March 2022 at: https://www.creativesupport.co.uk/trans-healthcare/
British Medical Association. “NHS Backlog Data Analysis”. borg.uk, 2022. Accessed March 2022 at: https://www.bma.org.uk/advice-and-support/nhs-delivery-and-workforce/pressures/nhs-backlog-data-analysis.
Gender Identity Clinic. “Waiting Times”. Gender Identity Clinic, GIC, 2022, https://gic.nhs.uk/appointments/waiting-times/
GarcÃa-Vega, Elena et al. Suicidal ideation and suicide attempts in persons with gender dysphoria. Psicothema vol. 30,3 (2018): 283-288. doi:10.7334/psicothema2017.438
Crowley, Des et al. “Transgender Health Care In Primary Care.” British Journal of General Practice, vol 71, no. 709 (2021) 377-378. https://doi.org/10.3399/bjgp21x716753
Treharne, Gareth et al. Supportive interactions with primary care doctors are associated with better mental health among transgender people: results of a nationwide survey in Aotearoa/New Zealand. Family Practice (2022) https://doi.org/10.1093/fampra/cmac005
Transactual. “Trans Lives Survey 2021: Enduring the UK’S Hostile Environment. (2021) accessed March 2022 at: https://www.transactual.org.uk/trans-lives-21
Fredriksen-Goldsen, Karen et al. Physical and mental health of transgender older adults: an at-risk and underserved population. Gerontologist (2014) doi:10.1093/geront/gnt021
Age UK. “The Health and Care Needs Of Older LGBT+ People.” (2021) accessed March 2022 at: https://www.ageuk.org.uk/discover/2021/february/the-health-and-care-needs-of-older-lgbt-people/
Willis, Paul et al. “Ensuring Trans People in Wales Receive Dignified and Inclusive Health And Social Care In Later Life: The Trans Ageing And Care (Trac) Project, 2016-18”. Trans-Ageing. (2018) accessed March 2022 at: https://trans-ageing.swan.ac.uk/wp-content/uploads/2019/04/Trans-ageing-and-care-research-briefing.pdf