The role of primary care nurses in the care of transgender people

With adequate knowledge and a depth of understanding, general practice nurses can play a valuable role in providing lifelong support to people with gender dysphoria

The subject of gender is a hugely important one as it has ethical, legal and moral implications. The term ‘gender dysphoria’ is used to identify a sense of identifying with a gender other than the individual’s birth assigned gender. In this article we will highlight some of the language that is used to describe gender identity issues, identify the routes available to people with gender dysphoria to access information and advice, and consider how GPNs can offer these people lifelong support. By the end of this article you should be able to:

• Understand what gender dysphoria is
• Show an awareness of how and when to refer on
• Recognise the specific health needs of people with gender dysphoria
• Respond appropriately to these needs in a way that is likely to optimise holistic wellbeing for the immediate and long-term outlook.

The information in this article is largely based on the Gender dysphoria services guide for general practitioners and other healthcare staff,¹ and the Royal College of Psychiatrists’ Good practice guidelines for the assessment and treatment of adults with gender dysphoria.²

ASSIGNING GENDER

Almost every child on the planet, with the exception of those with genital anomalies such as aphallia – the absence of a penis in a genetically male child – will, on the day that it is born, be identified as one of the two genders which are recognised in the delivery room. Cries of ‘It’s a girl!’ are a short cut for saying ‘This child appears to have genitalia which most closely resemble standard female genitalia on appearance’. However, we are perhaps only recently beginning to truly recognise the potential implications of those three words on the rest of that individual’s life if the midwife gets it ‘wrong’. In reality, gender is so much more than genitals and for some people being given the ‘wrong’ gender at birth can have a profound impact on their quality of life and well-being; this impact is also likely to extend to their families and loved ones.

GENDER DYSPHORIA

Most people who are given a male or female gender designation at birth will feel that this is the ‘right’ gender for them and will relate to being their allocated gender in a physical and psychological sense throughout their lives. These people may be referred to as ‘cisgender’, meaning that they identify with the gender they have been assigned. The term ‘gender dysphoria’ is given to people who have a sense of identifying with a gender other than their birth-assigned gender, usually the opposite gender. This mismatch between inner feelings and outward manifestations of gender, along with society’s expectations of gender roles, can lead to great distress resulting in emotional and physical ill-health.

Although gender issues might seem to be the remit of specialist services, people working in general practice have an important role to play too. A general practitioner (GP) or general practice nurse (GPN) may be the first person that someone who has gender dysphoria speaks to about their concerns. Clinicians should therefore appreciate the importance of responding appropriately with the aim of offering practical and emotional support in a non-judgemental way. The attitudes of health care professionals can have a significant impact on outcomes for people with gender dysphoria.

TRANSGENDER

The term transgender refers to people who do not identify with their birth-assigned gender. The term may be also be used to cover those who have made the decision to live as the gender with which they more closely identify, although this group may be referred to as being transsexual. For the majority of transgender people, gender dysphoria will mean that they identify more closely with the opposite of the two genders that are normally recognised, i.e. male and female, also known as the ‘binary’ genders as there are two of them. However, other people may feel that they don’t identify with either of the binary genders and that their gender identity feels more fluid than currently recognised by the law and society. It is very difficult to know how many people identify as being other than their birth gender as it is likely that many people feel unable to express their concerns about gender identity, especially in some of the less permissive areas of the world. Even in the UK, it can be a major challenge to come out as transgender to friends and family.

The traditional view of a transgender person, as someone who has had – often extensive – surgery to change their body to one that more closely fits their identity, is not always the reality. Some people will just live outwardly as the gender with which they identify without having hormonal treatment or surgery. Others will be content just to have medical treatment and others will opt for surgery to the chest/breasts and/or genitalia along with facial or other surgery according to personal preference or, more often, availability.

THE START OF THE JOURNEY

For many transgender people, the recognition of the fact that they feel differently about their assigned gender begins early in life – often around the time that children first start to recognise that boys and girls are different. In spite of improvements in the gender stereotypes applied to boys and girls by society, there are still significant expectations of the binary genders. ‘Boys do this, girls look like that’: even the most seemingly inconsequential aspects of gender identity applied by society can lead to confusion and distress in children who feel different. As a result, younger children who may be aware of being uncomfortable with their designated gender may feel this much more acutely as they approach puberty. Parents often say that they are aware that their child is non-cisgender from an early age. However, puberty can significantly catalyse anxieties and distress as bodily changes which are at complete odds with how the person feels begin to become evident. Some children who identify as being male will bind their chests to hide and hinder breast tissue development, for example, leading to skin and respiratory problems. It may be these problems or issues with low mood or withdrawal that bring these children into contact with general practice, so this is where the first important opportunity presents for primary care clinicians to influence the long term outcomes for non-cisgender people.

COMPASSIONATE CARE

Three out of four transgender people report having a negative experience when accessing healthcare services and one in five people will not even try to get help via the usual healthcare services because of bad experiences in the past. As with most health-related issues, the primary care team offers a conduit in and out of more specialised services so it is essential that GPs and GPNs are able to offer non-judgemental support, guidance and understanding throughout the journey – not just the patient’s journey but the family’s too.

Firstly, an awareness of the possibility of gender identity issues is important. A readiness to talk about these issues should be shown along with sensitive use of vocabulary.

Vocabulary and terminology can be a minefield and it is easy to get confused about how to address a non-cisgender person. This simplest approach is to ask them how they prefer to be addressed – as either he or she, for example – and whether they would prefer you to use their birth name or any adopted name that they may have chosen. This can begin before any legal name changes have been made and may once again reassure the person that their concerns are being taken seriously. Some people will choose names which are gender specific for their preferred gender, whereas others will choose a name which is gender non-specific. Name changes are seen to be a significant part of making the transition from male to female and becoming a transwoman or from female to male, thus becoming a transman. However, it is important to also recognise that family members and others may not be aware of any gender dysphoria and verbal and written addresses should take account of this. It does highlight the somewhat arcane practice we all have of calling people Mr. Miss, Ms. or Mrs. rather than simply using their name or writing ‘J. White’ on a letter.

CHILDREN

As mentioned above, feelings of being different in terms of gender identity often present in childhood. However, gender identity disorder of childhood isn’t the same as being a tomboy girl or a gentler, more ‘feminine’ boy. Children (defined in this context as anyone under the age of 18) with gender dysphoria need expert help and early referral is particularly important in order to ascertain the best way forward. Suitable interventions will depend on the age of the child and how close they are to puberty; for example, Gonadotrophin Releasing Hormone analogue therapy may be offered to delay the onset of puberty and to allow some room for further assessment and consideration of possible options. A child who has gone through puberty will have secondary sexual characteristics which may require more extensive management in the future, including surgical procedures. For example, a male who wishes to transition to female may be taller and have bigger hands and feet and much of this cannot be successfully corrected with surgery, meaning that the results of any transition may be less than ideal. However, the government has concerns about allowing children under the age of 16 to make decisions about gender reassignment and this subject causes much legal debate. Have a look at these pages for a clearer idea of the challenges: http://www.hrc.org/resources/transgender-children-and-youth-understanding-the-basics and http://cdn0.genderedintelligence.co.uk/2013/01/24/00-20-31-parents2013.pdf

REFERRING ON

It is important to know how and when to refer on – either to the GP, or ideally to local specialist services. However, it is not necessary for the person, adult or child, to be sure that they are non-cisgender for a referral to be made. In many cases, the decision to reveal gender identity concerns will have come after much soul-searching and deliberation so any delay in referring while they ‘have a think about it’ will be counter-productive and may suggest that their concerns are not being taken seriously.

As mentioned above, gender dysphoria should be referred to a specialist as soon as possible after concerns have been verbalised. Adults should be referred to the regional gender service or, in the case of children, to the child and adolescent mental health services (CAMHS). It should be recognised, however, that even this referral can cause distress: someone who feels that they are stuck in the wrong body will quite possibly not consider themselves to have a mental health problem but a physiological one and being referred for psychiatric assessment may just fuel feelings of anger, distress and resentment. Contrary to a commonly held belief, people who request referral for gender dysphoria do not have to be living as their preferred gender and do not have to undertake psychological assessment prior to referral.

Blood tests which may be carried out prior to referral include: full blood count, liver and renal function, lipids, bone profile, luteinising hormone, follicle stimulating hormone, sex hormone binding globulin, oestradiol, testosterone and dihydrotestosterone. Patients seeking male-to-female transition may also require prolactin and prostate specific antigen levels.

Lifestyle advice is important, especially if surgery and lifelong hormone therapy is being considered. Advice on healthy eating, activity levels, alcohol intake and smoking cessation should be offered where needed.

FOLLOWING REFERRAL

Following referral, a multi-disciplinary team, including a specialist psychologist or psychiatrist will carry out a detailed assessment and consider the most appropriate diagnosis. Treatment options to be considered will include hormone therapy and surgery, but the team will also offer psychological support, speech therapy and advice on hair removal.

GENDER REASSIGNMENT

Transgender people who decide that they need to transition to a body that is aligned to their gender identity are often referred to as being transsexual. Transition may include hormone therapy, surgery or both. The diagnosis of transsexualism is made based on three criteria:

• The individual wants to live and be accepted as a member of the opposite sex, usually with the support of surgery and hormone treatment
• The person has had gender dysphoria for at least two years
• The gender dysphoria is not the result of another mental disorder or a chromosomal abnormality.

HORMONE TREATMENT

Hormone treatments may include oestrogens and testosterone; other drugs may also be required.³ Some patients may have accessed hormone treatments illicitly via the Internet before seeking help. These are potentially dangerous and people should be discouraged from doing this, not least as they cannot be sure what they are buying, swallowing or injecting. The Royal College of Psychiatrists encourages the prescription of bridging therapies prior to referral if necessary.² Hormone treatments may need ongoing monitoring via blood tests. Patients should be advised of the possible short and long term effects and side effects of treatment. These may include:

Oestrogens: starting low and increasing the dose slowly seems to lead to better breast development but side effects include thromboembolic disease

Androgens: desired side effects might include voice change, but these may be irreversible quite soon after treatment commences. Similarly irreversible clitoral enlargement may occur.

SURGERY

Surgery for male to female transition may include phonosurgery or vocal cord surgery or facial feminisation surgery if required; however, funding is not always available for this and expectations should be managed and support given as needed. Male to female genital surgery may be considered after approximately 2 years of living as a woman although not all transwomen will want this.

Female to male surgery may include chest reconstruction and/or phalloplasty although the latter is chosen by a minority of transmen.

LONG-TERM HEALTH NEEDS OF TRANSGENDER PEOPLE

After an appropriate time and in the right circumstances, the gender clinic will arrange for the individual to be discharged back to primary care.

Follow up care should be tailored to each individual and will take account of the hormonal treatment and/or surgery that each person has had. For example, transwomen may still require prostate cancer checks and transmen will need cervical screening if they still have a cervix. Pelvic scans may be carried out to assess for any pathology in transmen too. Obviously the invitations for screening and the procedures themselves should be carried out with dignity and respect. For example, a transman may still be offered breast screening as there is still a breast cancer risk; however, a transman may not refer to his chest as his breasts and this should be recognised when discussing the need for mammography. Some transmen may prefer to be removed from the mammography screening list post mastectomy. Transwomen should be offered breast screening if they are taking high doses of oestrogen. It is important that people having gender reassignment treatments are aware that these tests will be needed in the future.

GENDER DYSPHORIA AND SEXUALITY

It is important to understand that sexuality and gender identity are separate entities. It is quite possible to be a transwoman – i.e. someone born male who has transitioned to being female and still prefer same sex relationships – in the case of a transwoman, this would mean having sexual relationships with cisgender women. There is no reason why a transgender person should be heterosexual.

Transgender people should be offered advice on sexually transmitted infections and it should be noted that there appears to be a higher risk of HIV in this group, especially transwomen.⁴

MENTAL HEALTH ISSUES

There is a high incidence of mental health issues, substance abuse and suicide in people with gender dysphoria, which are often related to the individual’s refusal to accept their own feelings or experiences of being rejected by others because of their gender dysphoria. As noted above, many transgender people will have had negative experiences when dealing with healthcare services in the past and this may make them less likely to seek help and more vulnerable to self-harm. However, although mental health issues may be related to gender dysphoria, it is important not to link the two automatically as they may exist independently of each other. For example, depression may be a separate problem from the gender dysphoria and may require treatment with drugs and talking therapy or counselling first before starting any gender reassignment interventions in order to maximise the benefits; conversely depression may be the result of gender dysphoria and may improve once gender reassignment has begun. As well as offering treatment for depression, people can be signposted to local support organisations for transgender and transsexual people. An interactive map showing local services can be accessed here http://www.gires.org.uk/the-wiki and people may also like to join the Beaumont Society which is an online transgender community http://www.beaumontsociety.org.uk/

LEGAL ASPECTS

Transgender people are protected from discrimination by law and should be able to access healthcare as the gender they identify as and have equal access to appropriate healthcare.⁵ Disclosure of gender history may constitute a criminal offence so clinicians should be careful in this respect and should always obtain the patient’s consent before sharing any information which might lead to an inadvertent disclosure. The delivery of care to transgender people is the subject of much moral and legal debate, particularly when it comes to children and adolescents.

KEY POINTS

All those working in general practice have an important role to play in supporting people with gender dysphoria from the very first conversations they might have about their feelings through gender reassignment and to lifelong support and follow up of their mental and physical health. Many transpeople report negative experiences in their interactions with healthcare professionals and this can have a significant impact on their readiness to seek help and engage in monitoring and screening tests in the future. GPNs have a responsibility to provide non-judgemental information and support throughout the life of transgender and transsexual people and ensure that they are offered the level of care and compassion that befits this condition in order to optimise long term outcomes.

REFERENCES

1. Ahmad S, Barret J, Beaini A, et al. Gender dysphoria services guide for General Practitioners and other healthcare staff. Sexual and Relationship Therapy 2013;28:172-185 http://www.tandfonline.com/doi/abs/10.1080/14681994.2013.808884

2. Royal College of Psychiatrists (2013) Good practice guidelines for the assessment and treatment of adults with gender dysphoria, 2013 http://www.rcpsych.ac.uk/files/pdfversion/CR181_Nov15.pdf

3. Dean J. Pharmacological treatment of gender dysphoria, 2015 https://www.devonpartnership.nhs.uk/fileadmin/user_upload/MedsMan/InternetDocs/PG12-GenderDysphoria.pdf

4. Centres for Disease Control. HIV amongst transgender people, 2016. http://www.cdc.gov/hiv/group/gender/transgender/index.html

5. NHS Choices. Gender dysphoria guidelines, 2016 http://www.nhs.uk/Conditions/Gender-dysphoria/Pages/policy-guidelines.aspx