Trans healthcare: What can we learn from people’s experiences?

We examine what the NHS can do to improve health support for the trans community.
Transgender woman looking at the camera.

Inequality when accessing services is a significant issue for trans people. Based on our evidence and the body of research that exists, we know that some trans men and women still experience issues when it comes to health and care support.1

We have used individual feedback and reviewed ten local Healthwatch reports from across England about people’s experiences of care to help NHS services understand how they can improve support for the trans community.

In brief: What should services focus on?

Feedback from 765 people highlight several recommendations that would help tackle the issues some individuals face when using the NHS:

  • Education - A national effort and investment to develop a curriculum which covers gender dysphoria and gender identity issues in the training programmes for GPs and other healthcare staff.
  • Communication - Encourage staff to ask how an individual likes to be addressed so that the preferred name, pronoun or term is used in communications. 
  • Records - NHS IT should record codes for biological sex and gender identity, while making sure people have the right to express their preferences for how they want to be named and referred to by staff.2
  • Support - Help signpost people to community and peer groups for support during the long waits for formal NHS services.

Staff knowledge of trans issues

A national report published in 2016 found that trans people encounter issues when using the NHS due to the negative attitudes and lack of knowledge or understanding from some healthcare professionals.3

Our evidence suggests that these issues continue – especially when trans people talk to their General Practitioner (GP) about their health issues.

People have told Healthwatch that they felt their GP did not believe they were trans as they lacked understanding about gender identity, often confusing it with sexuality. Some individuals had to help educate their GP, providing up-to-date and correct information so that they could get the help they needed.  

There is little official guidance for GPs on how to treat trans people who look for support. However, the Royal College of Nursing guidance does emphasise the duty to treat trans people with dignity and respect - we believe similar guidance should be developed by other professional bodies.4

Since June 2019, GPs have also been able to access some information about treating trans people, through the Royal College of General Practitioners - a positive step that could help to improve trans people’s experience of healthcare in the future.5

The participant felt there was no understanding or compassion about gender identity and felt disrespected and discriminated against by staff with no dignity given to gender status.
— Story shared with Healthwatch Derbyshire.

Improving communication and language

Under the Gender Recognition Act 2004, it is a criminal offence to tell people about a person’s previous gender without permission from the individual except when made to a health professional for medical purposes.6

Although the experiences trans people have told Healthwatch about do not show that professionals are breaking the law, many have raised concerns about health staff not using trans people’s preferred or correct name, gender or pronouns in written and verbal communication.

People told us how highly distressing and offensive they find this. In some cases, it has also affected their mental health and deterred them from using services because they fear discrimination and prejudice.

Trans people have the right to legally change their gender by applying for a Gender Recognition Certificate (GRC). Not all trans people apply for a GRC and it is not required for protection against discrimination.

However, some people who have legally changed their name and gender have told us that they have had negative experiences when receiving a new NHS number, due to health services confusing the new and old NHS numbers. Poor administration procedures, especially in primary care, have resulted in mistakes with correspondence and the labelling of test results. This has also caused knock-on effects, such as delays in being referred to a Gender Identity Clinic (GIC).

“Obtaining the result has been fraught with difficulties. Her daughter has recently changed to a female name and from Mr to Miss. This has meant that a new NHS number has had to be assigned. Despite this being organised, the wrong title is often used on blood forms e.g. Mr and then the female name, causing upset to her daughter. In addition, NHS numbers do not seem to match as they should and consequently, the results of the blood test are not to be found. Apparently, the problem is due to the merge of records."

Story shared with Healthwatch Essex

Trans people have told Healthwatch that the NHS could help solve this problem by introducing digital flags on health records so that staff are aware that they have transitioned. They felt that this could allow the NHS to also monitor and tackle high rates of self-harm and suicide among trans people.7

Referring people to the right services

Gender dysphoria - where a person experiences discomfort or distress because there's a mismatch between their assigned sex and gender identity - is no longer recognised as a mental health condition and is now described as a sexual health condition by the World Health Organisation.8

Since April 2013, updated NHS guidance has also made clear that referrals should be made directly to GICs so that a specialist assessment of an individual’s needs can happen.9

Despite this, our review of trans people’s experiences shows that this protocol is not always being correctly followed, especially by GPs. Both adults and children presenting with gender identity issues have told us about being wrongly referred to mental health services, despite the reforms in diagnostic and referral protocols. This has affected how quickly people have been able to access the specialist support that they need. It also highlights the need to improve the understanding some GPs have of trans health issues and the treatment that trans people are entitled to.

“My GP wouldn't refer me to GIC because of my mental health problems despite me telling [them] a mental health assessment is not needed for referral.”

Story shared with Healthwatch North Somerset

The effect of waiting for treatment

Whether due to an incorrect referral or not, people have told us about their experiences of long waiting times for support and treatment. Trans people have reported that delays in referrals have forced some to pay for treatment privately, such as hormone therapy and hair removal procedures.

Long waiting times can also affect people’s mental health and pose a risk to their physical health. Individuals have told us about experiencing serious effects while waiting for specialist support, including self-harm and suicide. Others have started self-medicating, purchasing hormones online without the expertise or supervision of a medical professional.

Fortunately, people have reported the positive effects of using online platforms during the long waits. For example, people have found support from online forums and communities with others who are experiencing similar things. This peer support and information sharing has improved people’s mental health and helped them to cope better with their health issues during what can be a distressing time.

The wider context:

We first raised concerns about trans people’s experiences with poor communication, lack of information, and long waiting times for gender identity services in 2015. This led NHS England to publish a series of blogs to raise awareness about the work to improve gender identity services and helped secure an additional £4.4 million investment in gender identity services.

Despite an increased focus on transgender equality and continually increasing investment in gender identity services in the intervening years, it’s clear that trans healthcare is still a developing and, at times, challenging area for the NHS.

Staffing issues

In England, GICs have seen a 240% overall increase in referrals over five years. Though investment in GICs has been increasing every year since 2015, there is still not enough capacity in the system to meet patient demand for specialist gender identity services.10

The NHS Constitution includes a guarantee to patients that the maximum waiting time for an initial specialist appointment should be no more than 18 weeks, yet many people are waiting more than 18 months for an initial appointment at a GIC.11

The limited number of appropriate clinical staff in the field of trans health has been a consistent challenge, and the NHS has acknowledged the need to recruit and train new staff. However, there is no recognised training programme in the UK for gender identity healthcare, though the RCGP has highlighted that such a programme is urgently needed.

NHS England has previously brought together key organisations from across the sector to discuss a strategy for resolving workforce issues facing gender identity services, including annoucing the launch of the Gender Workforce Project in 2016, but the outcomes of the project are not clear. 

Gaps in education, training and awareness

In the last National LGBT survey, 21% of trans people who responded said their specific needs were ignored or not considered when they accessed, or tried to access, healthcare services in the 12 months preceding the survey.12
 
A variety of organisations, including NHS England and the Royal College of General Practitioners (RCGP) have recognised the issues that trans people can encounter due to clinicians’ lack of knowledge and understanding of trans identities and clinical pathways.

At a national level, the General Medical Council provides guidance for doctors on making their practice more inclusive, including outlining the use of trans-inclusive language and empowering doctors to update medical records with a new name and gender if requested by patients.

On the ground, there are also instances of good practice. For example Brighton and Hove Clinical Commissioning Group has produced a guide for GPs on supporting trans patients.

However, in an RCGP position statement on the role of the GP in caring for gender-questioning and transgender patients, the royal college points out that gender dysphoria and gender identity issues are not part of the GP curriculum or GP Specialty Training and they have called for these gaps to be “urgently addressed”.

While GPs have little access to specialist training around gender dysphoria and gender identity issues, the RCGP points out that they are increasingly expected to deliver services related to trans health, as exponentially rising demand means that many patients must wait for specialist support.

GPs are also struggling to access advice from experienced gender specialists and there is little provision of continuing professional development for GPs surrounding trans health.

Improving specialist services

Gender identity services are commissioned directly by NHS England, though some stakeholders have argued for the benefits of a new model of care with less ‘clinical gatekeeping’, which could include shifting assessment into primary care. NHS England has responded to the need to provide more joined-up care and interim support for people waiting for specialist assessment.

In 2018, NHS England published two new service specifications for adult gender dysphoria services, after a process of extensive stakeholder engagement and public consultation. The new service specifications include some important changes aimed at making it easier for people to access support when experiencing gender dysphoria.

People now have the right to refer themselves to a Gender Dysphoria Clinic, a step which will help to deal with the problems that some trans people have experienced when it comes to being referred to specialist services. NHS England has also set out its intention to explore and evaluate new models of care for gender identity services, including through multi-disciplinary teams in primary care.

Updating NHS systems to prevent health inequalities

The IT systems used by the NHS can create barriers to trans or non-binary people trying to access care. For example, a trans male cannot be referred for a cervical smear or to a gynaecology clinic if they are recorded as male in the practice database, despite still having female reproductive organs.

If a patient is issued with a new NHS number which has no reference to their sex at birth, there is no way of contacting them regarding current or future screening programmes associated with their sex at birth.

GPs can also face confusion about when to update patient records if someone wants to change their name or gender. Though GMC guidance states that GPs do not need to wait for a Gender Recognition Certificate or updated birth certificate to change the sex recorded on someone’s medical records, not all GPs feel empowered to do this.

References

National LGBT Survey: Research report, 2018 https://www.gov.uk/government/publications/national-lgbt-survey-summary-report/national-lgbt-survey-summary-report#the-results

Royal College of General Practitioners Position Statement on the role of the GP in caring for gender-questioning and transgender patients: 
https://www.rcgp.org.uk/-/media/Files/Policy/A-Z-policy/2019/RCGP-position-statement-providing-care-for-gender-transgender-patients-june-2019.ashx?la=en

House of Commons Women and Equalities Committee, Transgender Equality Report 2016: https://publications.parliament.uk/pa/cm201516/cmselect/cmwomeq/390/390.pdf

NMC Code, 2015: https://www.nmc.org.uk/globalassets/sitedocuments/nmc-publications/nmc-code.pdf

Royal College of General Practitioners Position Statement on the role of the GP in caring for gender-questioning and transgender patients: hhttps://www.rcgp.org.uk/-/media/Files/Policy/A-Z-policy/2019/RCGP-position-statement-providing-care-for-gender-transgender-patients-june-2019.ashx?la=en

Gender Recognition Act 2004: http://www.legislation.gov.uk/ukpga/2004/7

NHS Long Term Plan Engagement, Healthwatch Gloucestershire 2019: 
www.healthwatch.co.uk/reports-library/long-term-plan-gloucestershire-report

World Health Organisation ICD-11: https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f411470068

House of Commons Women and Equalities Committee, Transgender Equality Report: https://publications.parliament.uk/pa/cm201516/cmselect/cmwomeq/390/390.pdf

10 Royal College of General Practitioners Position Statement on the role of the GP in caring for gender-questioning and transgender patients: hhttps://www.rcgp.org.uk/-/media/Files/Policy/A-Z-policy/2019/RCGP-position-statement-providing-care-for-gender-transgender-patients-june-2019.ashx?la=en

11 BBC News, Transgender people face two-year wait for NHS appointment: https://www.bbc.co.uk/news/uk-england-42774750

12 National LGBT Survey, Research report 2018: 
https://www.gov.uk/government/publications/national-lgbt-survey-summary-report/national-lgbt-survey-summary-report#the-results

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