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Gender incongruence in primary care

A number of queries have been raised with GPC regarding the management of patients who present at their general practice with gender identity problems, including questions relating to patient records and confidentiality and, in particular, regarding prescribing and monitoring responsibilities in relation to the gender reassignment process. This guidance aims to explain what should be provided in primary care, signposts further sources of guidance, and highlights some of the underpinning ethical and legal considerations.

Our ultimate aim is to ensure high quality service provision is made for this particular group of patients. The advice contained here is not intended to be exhaustive and we would encourage practices to refer to the sources of information and guidance that are referenced throughout and listed at the end of the document. We have also provided links to trans organisations to which GPs may wish to signpost patients.

It is likely that all GPs will be providing Primary Medical Services to this group of patients at some stage. An understanding of the issues involved is therefore necessary to ensure quality care is provided and appropriate referrals are made to specialist services. In our view, there is however a need for a balance between what can justifiably be expected of GPs in providing Primary Medical Services to patients with gender incongruence, those enhanced services which can be provided in primary care, and the knowledge and expertise which should rightly remain within the remit of specialist services.

This guidance makes particular reference to NHS England guidance but the principles described and GMC references included apply to all UK GPs.

 

  • Background

    The terminology used in this area is complex, changing, and can lead to distress if not understood. The ICD-10 defined transsexualism as a ‘Desire to live and be accepted as a member of the opposite sex, usually accompanied by the wish to make one's body as congruent as possible with one's preferred sex through surgery and hormonal treatment‘. This terminology is now regarded as outdated and the draft ICD-11 publication refers to a wider category of ‘gender incongruence’ which is the term used in this document.

    DSM-5 defines the symptom of gender dysphoria, which refers to the discomfort or distress that is caused by a discrepancy between a person’s gender identity, their sex assigned at birth, and their primary/secondary sex characteristics; it also includes the impact of that discrepancy on their gender role and the perceptions of others. When affected individuals meet the specified criteria in DSM-5, they may be formally designated as suffering from a gender dysphoria. Untreated, gender dysphoria can lead to mental ill health and severely affect the individual’s quality of life.

    The prevalence of this condition is difficult to determine and has been, and probably is still being, underestimated. It has been suggested by the Gender Identity Research and Education Society (GIRES) that about 1% of the population may experience some degree of gender incongruence. The House of Commons Women and Equalities Committee report, Transgender Equality, found that there was growing demand for Gender Identity Clinic services, with "referrals increasing by an average of 25-30 per cent a year across all the clinics."

     

  • Commissioning of services

    As of April 2013, NHS England is responsible for commissioning in some specialist areas, which includes gender services. The eight English gender identity clinics (GIC) provide patients with access to a multidisciplinary team, which initiates appropriate assessment and treatment. These services will accept referrals from primary or secondary care, and CCGs should not place barriers in the way of appropriate direct referrals from GPs.

    We are aware there are significant concerns about guidance provided by NHS England and the GMC (referred to below), specifically relating to the advice on prescribing and the potential for this to have broader implications beyond the scope of the treatment of transgender patients. We also have concerns about the lack of specialist service provision, the impact this has on patients and the pressures it can place on practices. In our view, patients with gender incongruence require a holistic approach, addressing their mental health and psychological needs, in addition to their physical response to treatment. NHS England’s guidance fails to recognise this, instead focusing on prescribing and the monitoring of tests.

    In GPC’s view:

    • Confirmation of diagnosis and commencement of initial treatment for gender incongruence should be made by a specialist service to which the patient is referred by the GP. Access to these specialist services should be rapid in order to ensure patients receive safe and timely care.
    • If timely access at a regional centre is not possible, additional intermediate capacity should be commissioned locally to ensure safe and effective care pending specialist involvement.
    • Appropriate ongoing treatment of patients with gender dysphoria should be provided by trained clinicians who have both the resources and experience to provide the necessary standard of care. This can either be through specialist prescribing (facilitated through the electronic prescription service) or through properly funded shared-care arrangements with GPs who have consented to provide this service, or through locally commissioned alternative providers within primary care.
    • NHS England has neglected to commission local services for ongoing care for these patients once they have been discharged from the GIC. We believe a properly commissioned, comprehensive, and quality controlled service is vital to ensure patient safety. NHS England as a public body should consider it’s duties under the Equality Act and provide proper services to patients with gender incongruence.
    • Clinicians in primary care should be supported by medical specialists when prescribing for patients with gender incongruence. Before a patient can be discharged from a GIC, the gender service must confirm what arrangements have been commissioned locally, provide detailed recommendations and guidance to enable clinicians to take over responsibility for ongoing care, and should ensure consent from primary care for that transfer of responsibility. Arrangements must be in place for patients and clinicians to receive rapid specialist advice in future should this be required.

     

  • Care arrangements and prescribing

    The Gender dysphoria service: a guide for GPs and other healthcare staff sets out five key points for GPs to consider when treating gender incongruent patients:

    1. Refer early and swiftly to a reputable gender service
    2. Support the treatment recommended by the gender service
    3. Get pronouns right; if in doubt, (discreetly) ask
    4. Be particularly mindful of medical confidentiality
    5. Avoid misattributing commonplace health problems to gender

     

    Initial GP consultation, referral and further treatment

    Patients often find it difficult to confide their feelings of gender incongruence to their GP – either through fear of ridicule, or through guilt or shame, and this may prevent them from seeking treatment. Such patients are in genuine distress and are seeking help, so GPs should be mindful of the sensitivity of their condition and how difficult it might have been for the patient to have approached a health care professional in the first place. GPs should be aware that a person’s outward appearance may not correspond to their gender identity, particularly at early stages of the person’s journey, and will need to deal with this situation with understanding.

    The Royal College of Psychiatrists’ document Good practice guidelines for the assessment and treatment of adults with gender dysphoria outlines what GPs should do following diagnosis:

    • Take full history, including mental health assessment.
    • After diagnosis, discuss with patient if they have a preference for a particular way forward.
    • A routine general and sexual health screening should be offered.
    • A full physical examination should be offered either by the hormone-prescribing clinic, or by GP in collaboration with specialist team.
    • When referring patients, the GP should consider whether there are any co-existing conditions, mental or physical health issues, which need to be taken into account4.

    Some difficulties arise over offering disease prevention activities or NHS screening procedures to patients who have completed gender reassignment. These can be overcome by remembering that disease prevention and screening should be organ-specific and not gender-specific, and patients need to understand what screening procedures they should continue to have.

     

    Prescribing, monitoring and follow-up after gender reassignment treatment

    The GPC is aware that GPs being asked to prescribe hormones for patients with gender incongruence both before and after specialist involvement. NHS England have released their Specialised Services Circular SSC1417 which states that GPs are encouraged to collaborate with GIC in the initiation and on-going prescribing of hormone therapy and that there is extensive clinical experience of the use of these products in the treatment of gender dysphoria. The GMC has published Advice on Treating Transgender Patients which includes sections on prescribing “bridging prescriptions” and ongoing prescribing following the recommendation of a specialist. We are aware that there exist concerns that the guidance places further obligations on GPs with regard to prescribing and education which may have broader implications beyond the scope of transgender healthcare.

    In April 2016 the BMA wrote to the GMC to seek clarification about the guidance and raised it’s concerns. The response , in part, informs the information here, although discussions are ongoing. The two circumstances in which GPs may be asked to prescribe for patients with gender incongruence, “bridging prescriptions” and ongoing care following consultation at a GIC, raise different issues and are therefore addressed separately below.

    • Bridging Prescriptions
      As a harm-reduction measure, the Royal College of Psychiatrists (RCPsych) has suggested that GPs may prescribe a bridging prescription to cover the patient’s care until they are able to access specialist services. The report and its recommendations have been endorsed by a range of Royal Colleges, including the Royal College of General Practitioners. The GMC advise that GPs should only consider a bridging prescription for an individual patient when they meet all the following criteria:

      1. the patient is already self-prescribing with hormones obtained from an unregulated source (over the internet or otherwise on the black market)
      2. the bridging prescription is intended to mitigate a risk of self-harm or suicide
      3. the doctor has sought the advice of a gender specialist, and prescribes the lowest acceptable dose in the circumstances.

    In the GPC’s view, although the advice sets out the conditions under which the RCPsych suggestion for harm reduction in a specific subsection of vulnerable patients fits within the GMC’s existing guidance on prescribing, it fails to address the resulting significant medicolegal implications for GPs, and neglects the non-pharmacological needs of these patients.

    It must be remembered that prescribers take individual ethical, clinical and legal responsibility for their actions, and when deciding on appropriate management GPs should keep accurate records of their reasoning and decisions. While awaiting specialist assessment, GPs should attend to their patients general mental and physical health needs in the same way as they would for other patients, but are not obliged to prescribe bridging prescriptions. Patients should not have to resort to self-medicating due to a failure to commission a timely specialist service, and this problem must be solved by NHSE making proper commissioning arrangements rather than by GP-prescribing before initial assessment and diagnosis. If the delay for specialist assessment is excessive GPs do have a role as their patient’s advocate in making representation to the commissioning organisation to help ensure timely provision.

    • Collaboration with a specialist and ongoing prescribing
      The GMC advice states that “You must co-operate with GICs and gender specialists in the same way that you would co-operate with other specialists, collaborating with them to provide effective and timely treatment for trans and non-binary people. This includes prescribing medicines recommended by a gender specialist, following recommendations for safety and treatment monitoring, and making referrals as recommended by a specialist”.

      In our view, this advice reaffirms that GPs should approach shared care and collaboration with gender identity specialists in the same way as they would any other specialist. The advice should therefore be read in conjunction with the principles which underpin shared care as set out by the GMC in Good practice in prescribing and managing medicines and devices.

      Participating in a shared care agreement is voluntary, subject to a self-assessment of personal competence, and requires the agreement of all parties, including the patient. This will necessitate NHS England arranging additional local services to meet the prescribing and related needs for the patients of those GPs not commissioned to provide these services.

     

    A full list of monitoring tests and medication required is available in Appendix 4 Hormonal treatment: a suggested collaborative care protocol in the RCPsych guidance document.

     

  • Confidentiality and medical records

    Forms of address and confidentiality

    As we have seen, terminology is complex and it is important that individual preference should be respected. GPs and other practice staff should address patients with gender incongruence as they would prefer to be addressed. This is not dependent on any official name change. If in doubt, an opportunity should be found to discreetly ask the individual which form of address they prefer, and how they see their own gender-identity. Written correspondence should take into account the fact that others in the household may be unaware of the individual’s gender circumstances.

    All practice staff should receive training in trans-awareness as part of their equality and diversity education, and should respect the dignity of patients with respect to pronouns and gender-markers on communications. A person’s gender past should not be divulged to anyone without their consent, and particular care needs to be taken over electronic forms of communication such as e-referrals which might make reference to past medical history which is of no relevance to the current medical situation. Disclosures of information about patients with gender incongruence is covered below.

     

    Changing medical records and disclosures of information

    The Gender Recognition Act 2004 provides safeguards for the privacy of individuals with gender incongruence and restricts the disclosure of certain information. The Act makes it an offence to disclose ‘protected information’ (i.e. a person’s gender history after that person has changed gender under the Act) when that information is acquired in an official capacity.

    This means that the ‘protected information’ can only be disclosed when:

    • it is to another health professional; and
    • it is for a medical purpose; and
    • there is a reasonable belief that the patient has consented to the disclosure.

    Guidance from the PDS NHAIS states that patients who are undergoing the transition process are also entitled to the same special protection against disclosure of their gender history.

    Sometimes GPs are asked by patients with gender incongruence to change their name and gender on the practice medical record, and patients do have this right to change their personal details direct with the practice. Patients also have the right to change the name and gender on their official NHS registration documents without obtaining a Gender Recognition Certificate. All that is needed is a letter of confirmation from the specialist that the patient is undergoing or has undergone gender transition change.

     

    This guidance sets out in more detail all the steps involved in changing the patient’s name and gender on the patient record.

  • Further resources for GPs

  • Trans organisations to which GPs may want to signpost patients

    Gendered Intelligence – Resources for the trans community

    GIRES (Gender Identity Research and Education Society) – Transgender Experiences: Information and Support

    GIRES (Gender Identity Research and Education Society) – Health-related resources

    Stonewall – First Steps to Trans Inclusion

    The Gender Trust – support groups for signposting patients

     

    Please note that the content of external websites listed above, to which GPs may wish to signpost patients, is the responsibility of the respective organisation, and reference to that website does not imply that GPC endorses the content of the website.

  • Download this guidance

    For a full list of references cited, download the guidance.

    Download guidance