Gender Dysphoria Services An English Protocol



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Gender Dysphoria Services - An English Protocol

Introduction
This protocol was prepared by representatives of Gender Identity Clinics (GICs) across England, at the request of the Department of Health, to provide an outline of necessary gender services. The information herein is applicable to General Practitioners (GPs) and other healthcare practitioners, Primary Care Trust (PCT) commissioners and all users of Gender Services.
Clinical representatives from GICs in London, Nottingham, Leeds and Sunderland met in April 2012 to agree the basics of a draft common protocol based on best current NHS practice, informed by the 7th edition of the World Professional Association of Transgender Health (WPATH) Standards of Care.
It is intended that the draft protocol will then undergo consultation with a range of users of Gender services, and will be audited 12 months after completion.

General Principles
Gender Dysphoria is a term describing the discomfort or distress caused by the discrepancy between a person’s gender identity (their psychological sense of themselves as male or female) and the sex they were assigned at birth (with the accompanying primary/secondary sexual characteristics and/or expected social gender role).
Sometimes, that distress is sufficiently intense that people undergo transition from one point on a notional gender continuum to another – most commonly from Male-to-Female (MtF) or Female-to-Male (FtM). This typically involves changes to social role and presentation, and may necessitate their taking cross-sex hormones or having gender related surgery.
Transsexualism is an extreme form of Gender Dysphoria. It is the desire to transition and be accepted as a member of the sex other than that assigned at birth, and to make one’s body as congruent with one's sense of gender as possible, typically through hormones and surgery. Transsexualism is coded in the International Classification of Diseases as ICD-10 F64.0.
There may be additional psychosexual problems related to gender. It should be noted, however, that sexual orientation (for example, bisexual or heterosexual) is distinct and independent from gender identity.

Names and Pronouns
Terminology can vary widely, and individual preferences should be respected: people with Gender Dysphoria might identify themselves simply as male or female, but some might view themselves as gender variant, transgender, transsexual, transvestite, genderqueer, androgyne, neutrois or other.
An attempt to define all of all of these terms is potentially controversial and outwith the scope of a single document; however, the Department of Health’s publication Trans: a practical guide for the NHS makes the following point:
Of all the things that could offend a trans person or lead them to feel misunderstood, excluded and distrustful, mistakes involving forms of gender-related speech are perhaps the most upsetting. Potentially they are also easiest to pay attention to getting right.
As a general rule of thumb, GPs and other clinicians should address users of Gender Services as they would wish to be addressed. If in doubt, an opportunity should be found to ask the individual (discreetly) which form of address they prefer. This is not contingent upon any official name change (see Appendix A).
In waiting rooms and other public settings where there is no opportunity to ask beforehand about preferred form of address, a reasonable compromise might be to use initial and pronoun eg. “R Brown”.

Gender services
The most recent WPATH guidelines emphasise the pivotal role of the qualified Mental Health Practitioner: a mental health professional (eg. psychiatrist or psychologist) who specialises in transsexualism/gender dysphoria and has general clinical competence in diagnosis and treatment of mental or emotional disorders.
Gender services typically provide access to a specialist mental health and multidisciplinary team which commences appropriate assessment and treatment for all gender dysphoric people aged 18 years and over (there is no upper age limit).
Available treatments will include specialist assessment and diagnosis, and may include clinical consideration of psychological therapies, speech and language therapy, endocrinology, referral for hair removal, referral for surgical procedures and aftercare.
Gender services provide specialist assessment and treatment of Gender Dysphoria; this often includes related social and physical changes.
People in need of help with psychological functioning to make the transition of social gender role will require additional input from specialist mental health professionals with knowledge, training and experience in the treatment of Gender Dysphoria. This extra input may be available within the GIC or elsewhere.
Who is it appropriate to refer to Adult Gender services?
Within the NHS, healthcare providers may be primary (the GP) or secondary (services accepting referrals from the GP, such as the local mental health team). Some specialist services are tertiary, meaning they accept referrals from secondary providers.
Gender services are tertiary and, as such, usually receive referrals from secondary (but sometimes primary) care. This varies according to local service arrangements, and referrers must familiarise themselves with these arrangements.
Gender services generally accept referrals of adults with symptoms of Gender Dysphoria. They usually require also a full description of the nature and extent of any mental health diagnosis, if present.
The following may all co-exist with Gender Dysphoria, and are not considered contradictions to referral: disorders of mental or physical health, disorders of learning, development (including autistic spectrum) or personality and dependence on alcohol or other substances. It is the responsibility of the referrer to ensure that any such conditions are described and, where appropriate, stabilised. Where there are significant elements of associated risk, these should be well managed by referrers and additional (including forensic) services, involved as appropriate.
Individuals referred to a Gender service are not required to have started living as their preferred gender. Nor is it necessary for them to have undergone psychotherapy prior to referral.

Who is it appropriate to refer to Specialist Child and Adolescent Gender services?
Currently young people under eighteen should be referred to a child and adolescent psychiatrist or psychologist locally in the first instance, for initial assessment of the gender dysphoria and possible associated psychological difficulties, such as depression or an autistic spectrum condition. This may lead to onward referral to the nationally funded specific Gender Identity Development Service for Children & Adolescents, currently based in London and Leeds. These services work closely with local professional networks.
Child & adolescent Gender services
There is a range of opinion among professionals about the treatment of young people who show atypical gender behaviours.  Child psychological services are necessarily aware of the broad spread of non-problematic behaviours shown by young people that may have, in the past, been deemed to be gender atypical.
There is some variation in the practices of specialist clinics and practitioners but national and international guidelines emphasise the particular importance of a multidisciplinary approach.  Generally speaking, options for adolescents with well established gender dysphoria include access to a series of treatments stages – in order of increasing irreversibility.
These treatments include the option of arresting puberty using a Gonadotrophin Releasing Hormone Analogue (GnRH analogue) to reduce the distress commonly associated with pubertal physical development and to provide a space for the young person to continue to consider whether full transition is their settled objective. There is a particular emphasis on ongoing supportive counselling and psychological input, and any stage of the process can last as long as is deemed necessary by the patient, with input from both the patient's family and treating clinical team.
As an individual approaches eighteen, the treating child & adolescent specialist gender service will liaise with the appropriate adult gender service to ensure a smooth transfer of care.

The role of Gender services
Diagnosis

Anyone referred to a Gender Service will be assessed to ensure that there is a confirmed diagnosis relating to Gender Dysphoria. A diagnosis is medical shorthand for a particular combination of symptoms (what the individual reports) and signs (what the clinician observes). In the UK, diagnoses are generally coded according to version 10 of the International Classification of Diseases (ICD-10).


The most common gender related diagnosis made in such clinics is transsexualism.
The ICD-10 diagnosis of transsexualism (F64.0) in adults requires three criteria to be met:


  • The desire to live and be accepted as a member of the opposite sex, usually accompanied by the wish to make his or her body as congruent as possible with the preferred sex through surgery and hormone treatment

  • The transsexual identity has been present persistently for at least two years

  • The disorder is not a symptom of another mental disorder or a chromosomal abnormality.

Some clinicians might also refer to the USA specific diagnostic system, the fourth edition of the Diagnostic and Statistical Manual (DSM-IVTR), which states that Gender Identity Disorder “is a medical condition in which there is strong and persistent cross-gender identification and a persistent discomfort with the sex or a sense of inappropriateness in the gender role of sex”.


Treatment

Within Gender services, individuals are offered tailored support and intervention in order to best meet their individual needs and circumstances.


The therapeutic goal of a Gender service is to work in partnership with patients to facilitate a clear and realistic understanding of their feelings and aspirations. During this process patients will typically be encouraged by their clinicians to explore options that they may not have considered. Neither the individual patient nor the clinical team should pre-judge the direction of the treatment pathway to be followed. Full gender transition – with or without provision of hormones or surgery – is generally a possible outcome but the individual might also be assisted in considering alternative ways of dealing with their Gender Dysphoria
Individuals discharged from Gender services, with or without having had hormonal, surgical or other interventions, will usually have a stable gender identity and be confident of the decisions they have been supported to make with regard to their treatment pathway.

The role of the General Practitioner (GP)
Referring patients

When referring patients to gender services, the GP must consider whether there are any co-existing conditions, mental or physical health issues or risk and vulnerability factors which need to be taken into account. These do not necessarily preclude treatment, but the gender service does need to know about them.


Depending on local service arrangements, a mental health assessment may sometimes be required as a matter of course. In this circumstance it is the responsibility of the GP to swiftly refer individuals to the local Community Mental Health Team (CMHT) for assessment. The GP must then include that CMHT assessment in their referral to the Lead Clinician of the receiving gender service.
The GP will be required to carry out a basic physical examination and investigations, as a precursor to those physical treatments which may later be recommended.
Depending on local service arrangements, the GP may also be required to organise funding for steps in treatment, as recommended by the Gender service. These steps might include making applications for necessary elements of their patient's transition, an example being permanent hair removal.
Providing and monitoring treatment

After assessment at the Gender service, the GP is responsible for the initiation and on-going prescribing of endocrine therapy and organising blood and other diagnostic tests as recommended by the specialist gender service clinician. In the longer term, primary care will be responsible for the life-long maintenance of patients' wellbeing, this involving conducting simple monitoring tests, examinations and medication reviews as recommended initially by the discharging Gender specialist and thereafter according to extant best practice. The associated tasks are neither frequent nor taxing.



The role of the CMHT
Referring patients

Depending on local service arrangements, some GPs must include a CMHT assessment in their referral of someone to a Gender service.


The role of the CMHT, in terms of providing the required assessment, is consideration of a diagnosis pertaining to Gender Dysphoria and identifying (or, at least, flagging up) any mental health diagnosis that might be causing apparent gender identity issues. People with co-morbid conditions (including, but not restricted to, disorders of mental or physical health, learning, development, personality, alcohol or substance dependence) are not excluded from referral to Gender services. It is, however, important to ensure that these are stabilised as far as is possible. Where there are significant elements of risk, these should be well managed, using additional (including forensic) services, as appropriate.
Individuals referred to a Gender service are not required to have started living in their preferred gender role, and it is not necessary for them to have undertaken psychotherapy prior to referral.
Ongoing involvement

The CMHT’s involvement will be required in the management of any significant ongoing or new co-morbid condition, but is not otherwise required.



Gender service: initial assessment
Commonly, assessment takes place over at least two appointments, usually with two separate clinicians, effectively forming two parts of a whole. Occasionally, individuals with complex circumstances or with a history of having earlier de-transitioned (returned to a gender role in accordance with their birth sex) will require further assessment.
Sometimes, as in the case of individuals who were previously known to the gender service or to other gender services, a second appointment may not be necessary in identifying and addressing their specific needs.
Typically, there is an intervening gap between initial appointments. This allows for reflection and, if appropriate, consolidation of a social gender role change, interpretation of the results of blood and other investigations, etc. Ideally, there should be no more than four months between the first two appointments.
Blood tests

If required, routine blood tests are carried out in advance of the first appointment, by the GP.


Those blood tests consist of the following.
MtF (phenotypic males transitioning to female): serum lipids, LFTs, bone metabolism, LH, FSH, SHBG, oestradiol, testosterone, dihydrotestosterone, prolactin, prostate specific antigen.
FtM (phenotypic females transitioning to male): serum lipids, LFTs, bone metabolism, LH, FSH, SHBG, oestradiol, testosterone, dihydrotestosterone, FBC.
It is important for the Gender service to review results of blood tests (preferably with the assistance of a specialist Endocrinologist) before endorsing hormones.
Smoking

Smokers are advised to stop. This is to minimise the risk of thromboembolism and polycythaemia, which which are increased by oestrogens and testosterone, respectively. As a general rule, hormones are not initiated, or dosage increased, while patients continue to smoke.


Alcohol & substance use

Alcohol consumption must be within recommended weekly limits, to further lower the risk of hepatoxicity. Substance use must be stabilised and, where possible, stopped.


Obesity

Obese individuals are advised that their weight increases thromboembolic and surgical risks, and may indeed prove a contraindication to surgery. They are encouraged at an early stage to lose weight.


Occupation

Although it is recommended that people are in an occupation (paid, voluntary or full-time study) this is typically a requirement for genital surgery rather than starting hormones - although individuals should be living full time in their preferred gender role. A patient could be started on hormones without fulfilling occupational criteria but if their intention is to seek genital surgery in the longer term, they need to address the issue of occupation.


In the case of chest surgery for FtM individuals, it is generally not a requirement that the person be in steady occupation – although, obviously, this is desirable. It is, however, necessary to establish a degree of social stability and functioning in the male gender role over a minimum period of 12 months prior to referral.

Social gender role change

If an official name change has not been made, the individual should be advised on how to go about this. It is possible for people of UK nationality to make an official name change at any time. An information sheet from the Gender Recognition Panel sets out three ways of doing so.


(See Appendix A)
Sometimes it is not possible for people to make an official name change – non-UK nationals, for example, may find it very difficult to change their name in their country of origin.
Clinicians may seek to confirm name change by asking to see relevant documentation.
Hormones

As a general rule, the prescription of cross-sex hormones (testosterone, oestrogens) is not endorsed until initial assessment is completed (and this will take more than one appointment) – unless the individual is transferring from an appropriate child and adolescent or other gender service in which case hormone treatment decisions may be managed in shared care with the other gender service until the second appointment.


If the individual is already taking hormones (having been started by a private gender specialist or through self-medication), it is generally not stipulated that they stop altogether – although there is evidence that self medication can lead to a poorer outcome. The focus is on the safe use of hormones, and blood investigations inform this. If someone is taking doses or combinations which represent a risk, they will be advised of this and appropriate guidance given.
Dependent on whether an individual has socially transitioned in the sense of living full time in their preferred gender role (or is felt by the specialist gender clinician to be likely to do so very imminently), it may be reasonable to recommend that the GP prescribe cross-sex hormones possibly in combination with a GnRH analogue. It is important to note that there is every indication that these are safe and effective treatments. Before starting either it is important to explore implications for fertility. This might include discussion of gamete storage. The GP is usually best placed to advise on local availability of such services.
Oestrogens: the patient must be made aware of likely effects and side-effects, that some of these may be irreversible and warned of the signs of deep venous thrombosis. It is also useful to discuss the rationale for starting on a low dose and increasing in staged increments (this appears to lead to better outcomes in terms of breast growth).
Androgens: the patient must be made aware of likely effects and side-effects, that some of these (voice change, clitoral enlargement) may be irreversible and happen fairly soon after treatment starts.

Other recommendations

If it seems appropriate, the gender service clinician might make a referral to Speech & Language Therapy, either local to the individual or based at the gender service. Referrals will depend on the patients having begun living full-time in their preferred gender role, as they cannot practise the new vocal techniques consistently if switching between roles.


Facial hair removal by laser or electrolysis is not always funded but, in accordance with local arrangements, the GP can be asked to apply for funding, especially for those individuals with particularly troublesome facial hair.
Gender service: ongoing assessments

People are required to attend the Gender service regularly (ideally, at least three times yearly) for review with one or more specialist Gender clinicians. This ongoing contact is likely to include discussions about hormone treatment, referrals to other services (for example, speech therapy, surgery, etc.) and support as necessary with social, occupational, family and relationship changes or developments.


Some Gender services are able to offer more frequent follow-up where required, including periods of more intensive input from other therapists – usually with a defined aim and timescale. Other possibilities include one-off workshops (often focused on a particular subject or aspect of transition) and therapeutic group work.

Gender service: surgical eligibility
In general:

Sometimes, when an individual first comes to a Gender service having already lived in their preferred gender role for the requisite length of time, suitability for surgery might reasonably be considered. It is important to establish understanding of surgical technique, and realistic expectations of outcome.


It must be noted that Gender services, being tertiary, have no direct influence over funding for surgical procedures.
There is no set requirement for people to undergo surgical procedures in a particular pattern or order or, indeed, at all. The following are, however, commonly requested.
FtM chest reconstruction surgery

typically, patients are eligible for this after having lived for at least one year as male and having taken androgens for at least six months. Full-time occupation in the male role is desirable but not required where more general social functioning and stability in a male role can be otherwise demonstrated.


MtF throat surgery

generally speaking, individuals might reasonably be referred to a specialist Ear, Nose & Throat (ENT) surgeon after a year or so of living as female. With cricothyroid approximation (sometimes called phonosurgery or vocal cord surgery) ENT surgeons require both psychological or psychiatric and Speech and Language Therapist (SLT) referral, so it is important to ensure that those pursuing phonosurgery have actively engaged with and are supported by a SLT both before and after surgery.


Facial feminisation surgery

This is not, generally speaking, funded within the NHS.


MtF genital surgery

Social gender role transition is usually considered to have started from the point that the individual makes an official name change – assuming they have also established a changed social gender role.


It is standard practice for people to be considered eligible for genital surgery after a set period (usually two years) of social gender role transition. This means living full time in the female gender role, including official name change and documentary evidence of some sort of occupation, for at least twelve months. Some flexibility may be necessary around this latter, particularly where disability is present, or with less conventional occupations.
Individuals will not be required to disclose their birth-assigned sex to employers who know them only as female (a reference can be marked To Whom It May Concern and state only that Ms X has worked at Company Y since Date Z). Alternatively, contracts and payslips may be acceptable, if in the female name (and with gender signifier, if relevant), showing a span of dates.
Sometimes, if social gender role change appears to have been straightforward (and particularly in cases where the individual has been in occupation as a woman from the outset, and can demonstrate this clearly), it is reasonable to plan a first surgical eligibility assessment at 18 months.
FtM genital surgery

In essence, the same eligibility requirements pertain as with MtF genital surgery, which is to say a set period of social gender role transition, living full time, including official name change and proof of some sort of occupation in the male role for at least twelve months and usually two years.


Female-to-male genital surgery is typically multi-stage, over a period of one to two years.
Gender service: aftercare
Patients should be followed up by the Gender service at least once, at 4-6 months post genital reconstruction surgery, to review outcome and make recommendations for the ongoing prescribing and monitoring of their life-long treatment by their GP, in a primary care setting.
Patients are discharged from Gender services in the following circumstances:


  • they have a stable gender identity in which they feel content

  • following endocrine and/or surgical interventions, when their care can be transferred wholly to their GP

  • they request discharge

  • they fail to attend appointments

  • they are repeatedly unable to engage constructively with services

Upon discharge, the Gender service will provide detailed recommendations and guidance to enable primary care to take full responsibility thereafter.



Ongoing health
It is the responsibility of the GP to monitor and manage the ongoing healthcare of previous users of gender services in exactly the same way as they would look after any other patient. Former users of gender services are just as likely as any other person to become physically or psychologically unwell, and it must not be assumed that commonplace conditions (such as a urinary tract infection or a brief depressive episode) automatically necessitate re-referral to tertiary gender services.
Each GIC generally provides its own recommendations on long term monitoring. The following are a generally featured:
MtF (post genital surgery):

  • Annual lipids, LFTs, prolactin, oestradiol, blood pressure

  • Routine breast screening

  • GnRH analogues are not required post-surgery, but oestrogen must be continued indefinitely to prevent osteoporosis

FtM (post genital surgery):



  • Annual lipids, LFTs, FBC, testosterone, blood pressure

In FtM individuals who have not undergone hysterectomy, pelvic ultrasound scanning is recommended every two years, to exclude uterine/ovarian pathology.


In FtM individuals who retain a cervix, routine cervical screening is recommended.
It is important to appreciate that some individuals feel sufficiently dysphoric about their genitalia, particularly, that they choose to avoid pelvic/cervical screening altogether.

References
American Psychiatric Association (APA). (2000). Diagnostic and statistical manual of mental disorders 4-TR. Washington DC: American Psychiatric Association.

Asscheman, H., Giltay, E. J., Megens, J. A., de Ronde, W. P., van Trotsenburg, M. A., & Gooren, L. J. (2011). A long-term follow-up study of mortality in transsexuals receiving treatment with cross-sex hormones. Eur J Endocrinol, 164 (4). 635-42.

Gender Recognition Panel (GRP). (2012). Gender recognition panel tribunal guidance. Retrieved 13th March 2012 from: http://www.justice.gov.uk/tribunals/gender-recognition-panel.

Gooren, L. J., Giltay, E. J., Bunck, M. C. (2008). Long-term treatment of transsexuals with cross-sex hormones: extensive personal experience. J Clin Endocrinol Metab, 93 (1), 19-25.

Hembree, W. C., Cohen-Kettenis, P., Delemarre-van de Waal, H. A., Gooren, L. J., Meyer III, W. J., Spack, N. P., Tangpricha, V., & Montori, V. M. (2009). Endocrine treatment of transsexual persons: An endocrine society clinical practice guideline. J Clin Endocrinol Metab 94 (9), 3132–3154.

World Health Organisation. (1992). International Classification of Diseases 10 (2nd ed). Geneva: WHO.

World Professional Association of Transgender Health (WPATH). (2011). Standards of care for the health of transsexual, transgender, and gender nonconforming people. Retrieved 13th March 2012 from: http://www.wpath.org/publications_standards.cfm

Appendix A

In practice, many individuals embarking on social gender transition subsequently wish to change their birth certificate, using the Gender Recognition Act (2005). The following statement outlines the varieties of name change acceptable under the Gender Recognition Act.


Change of name for the purposes of the Gender Recognition Act (2005)

The Gender Recognition Act 2005 requires a person to have lived exclusively in his/her acquired gender for at least 2 years prior to his/her application for a Gender Recognition Certificate (GRC). A key element to the evidence of the persons acquired gender and living exclusively in that gender is that he/she has adopted an appropriate name. There is no legal requirement for the change of name to be documented. However, for practical purposes to change a name with official bodies, a document evidencing the change of name is required. The Gender Recognition Panel (GRP) would normally expect to see such a document.


The documentary evidence of a change of name can take several forms. The simplest and most common form is a Change of Name Document. This is a document confirming that the person making the document relinquishes his/her former name and in its place assumes a new name from the date of the document. The document has to be signed by the person changing his/her name, in the presence of a witness. The witness then signs to confirm that he/she has witnessed the person signing the document in his/her presence and add an address where they can be contacted in case there is a query over when or how the document was signed. There are no specific requirements as to who can and cannot be a witness. The document can be prepared by a solicitor or a blank form can be obtained from the internet or a stationers.
A slightly more formal approach would be for the change of name to be evidenced by a Statutory Declaration. This will usually be drafted by a solicitor (although again blank forms can be obtained from the internet or a stationer). In this case the Declaration has to be sworn in front of a person authorised to administer Oaths, which will be a solicitor, Commissioner for Oaths, Notary Public, or a Legal Executives authorised to administer Oaths; all of whom are available through a solicitor's office. Alternatively the Declaration can be made before a Magistrate (also called a Justice of the Peace) or some Magistrates Clerks at a Magistrates Court. Abroad, Consular officials are allowed to administer oaths. A small fee will be payable when swearing an Oath.
The GRP would normally expect to see one of these two types of documents. A more formal version of the Statutory Declaration is a Deed Poll. They are formally registered and are more costly to produce. A solicitor would advise when a Deed Poll was legally required instead of a Statutory Declaration. Deed Polls are rarely used these days and the GRP certainly does not require one.
Some applicants changed their names so long ago that they have either lost their document evidencing the change of name, or did it informally without a document to evidence the change. In these exceptional circumstances the GRP would require other forms of documentary proof of the change of name such as a statement from someone who has know the individual in their previous and current names. Where the GRP does not consider there is sufficient evidence of the change of name, directions can be given to highlight the additional evidence that needs to be produced. If an applicant is aware that he/she lacks the necessary evidence of the change of name he/she can seek general guidance from the GRP before lodging his/her application and supporting documentation.
The GRP needs to be satisfied that the person making the application for a GRC is the same person as appears on the birth certificate. It is, therefore, necessary to produce evidence of all changes of name if there has been more than one during the individual's lifetime.


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