Non-Binary Equality Working Group: report and recommendations - March 2022

Healthcare

The first substantive meeting of the working group looked at non-binary people's access to healthcare. We identified four key themes:

• Transition-related healthcare
• Mental health
• Primary care
• Fertility preservation

Initially, all four topics were discussed at a full meeting of the working group.^[1] Each theme was then discussed at subgroup meetings, which were attended by members with a particular interest, and by invited participants with relevant expertise. Scottish Trans and LGBT Health and Wellbeing, two of the organisations represented on the working group, also held community engagement events on the topic of healthcare with non-binary people. The views shared at these were fed into discussions of the group.

Transition-related healthcare

For transition-related healthcare to truly meet the needs of trans and non-binary people, its design and delivery must be transformed.

We welcome the review of the current Gender Reassignment Protocol^[2] as part of implementing the NHS Gender Identity Services Strategic Action Framework 2022 – 2024.^[3] These processes will be important levers for achieving transformation. As this work began while the working group was still underway, we were unable to make recommendations to shape the design of the process. Therefore, these healthcare recommendations should be taken as our contribution to the current process.

We refer throughout to "transition-related healthcare" as a general term. Currently, most transition-related healthcare is accessed via Gender Identity Clinics. This approach cannot achieve effective transformation of services. Our recommendations need to be implemented not only in Gender Identity Clinics, but across all healthcare. Our first healthcare recommendation is therefore:

2. Transform the way transition-related healthcare is delivered in Scotland, moving to a system based on informed consent, desegregating services so that they are not exclusively accessed via specialist clinics, and designing services collaboratively with trans and non-binary people

Throughout the working group meetings and community consultations, the overwhelming view was that the current transition-related healthcare system is not fit for purpose. Some of the key issues discussed were long waiting times, arbitrary assessment criteria, negative experiences at Gender Identity Clinics, and the requirement that all trans healthcare be accessed via specialist clinics and psychiatric assessments. The need for change is urgent. These problems cannot be solved simply by providing more resources to the current system, but require a transformation of the way that that transition-related healthcare is delivered.

We welcome the commitments to improve services in both the Programme for Government and the Scottish Government and Scottish Green Party Co-operation Agreement. We also welcome the NHS Gender Identity Services Strategic Action Framework (the strategic action framework).^[4] However, if this opportunity for transformation is not fully embraced, and does not centre and empower trans and non-binary service users, the proposed framework could fail to address existing problems, or might even exacerbate them.

We recommend, in the strongest terms, that the strategic action framework is used to drive a transformation of services that is ambitious, desegregated, led by principles of informed consent, and designed and delivered collaboratively with trans and non-binary people.

Informed consent means that, "instead of a mental health practitioner assessing eligibility for and granting access to services, transgender patients themselves are able to decide on whether they are ready to access transition-related health services. In this model, the role of the health practitioner is to provide transgender patients with information about risks, side effects, benefits, and possible consequences of undergoing gender confirming care, and to obtain informed consent from the patient."^[5] Informed consent is thus compatible with the "Realistic Medicine" approach adopted by the Scottish Government and NHS Scotland, but further empowers the service user within that framework.

Trans and non-binary people need to be able to access the healthcare they need in a timely manner. This healthcare needs to be evidence-based and high quality, and most care should be accessible in community settings, rather than specialist clinics. Services for trans and non-binary people should be desegregated, so that they can be accessed equally to, and in the same way as, cisgender people.

Decisions about transforming services should be made in meaningful collaboration with trans and non-binary people. For example, decisions made about how to allocate the funding commitments in the strategic action framework must empower trans and non-binary people at all stages of the process, including in shaping the criteria used to assess applications for funding, and in making decisions about what is funded.

We urge that the work already underway brings about substantial, long-lasting transformation of transition-related healthcare.

3. Develop national standards for gender identity services that are accountable and enforceable

We welcome the commitment in the strategic action framework to "develop national standards for adult and young people's gender identity services". However, these standards must be accountable and enforceable.

Currently, there are no national standards in Scotland for transition-related healthcare. The existing Gender Reassignment Protocol (protocol) has been in place since 2012, and functions as an outline of the clinical pathway and health interventions available, but does not set standards of care that patients should be able to expect. Many trans and non-binary people experience care that diverges significantly from the pathway outlined in the current protocol.

ScotPHN's 2016 healthcare needs assessment found that 30% of respondents experienced care that differed from the protocol, most often through additional delays and difficulties in accessing treatment.^[6] People using gender identity services may not know what to expect from the care pathway, with 43% of respondents saying that they were unaware of the protocol before their first appointment at a Gender Identity Clinic.^[7] Relatedly, while the 2012 protocol was initially intended to be revised on a regular basis, it has taken 10 years for a formal review.

Enforceable standards would ensure that trans and non-binary people receive good quality care, and an accountable process would empower trans and non-binary people in a regular revision of the standards.

4. Fund transition-related healthcare sustainably, in the long term, and beyond the existing Gender Identity Clinics

We warmly welcome the commitment to three years centralised funding to urgently improve gender identity services. However, given the current crisis in transition-related healthcare, improvements achieved during this time may be short-lived, and services may regress to the current unacceptable level, particularly if this process results in temporarily increased resourcing of the status quo rather than service transformation.

In the past, improvements at the policy level have not led to material improvements in accessing healthcare on the ground. For example, a previous update to the Gender Reassignment Protocol removed breast augmentation and facial feminisation surgery from the highly-restrictive Adult Exceptional Aesthetic Referral Protocol, and recommended that specific pathways be set up to provide these procedures. However, better access to these interventions has failed to materialise in many areas of Scotland. This is due to a lack of funding from health boards, which means that provision in these areas has decreased, rather than improved.

Whether healthcare is funded and commissioned at national or local health board level, the Scottish Government should ensure that long term sustainable funding enables trans and non-binary people to access the healthcare they need, wherever they live in Scotland.This funding should not be confined to the existing Gender Identity Clinics, but support the delivery of transition-related healthcare across primary care and the community-led sector.

5. Ensure that trans and non-binary people have equal access to transition-related healthcare, regardless of gender identity, gender presentation, race, disability, neurodiversity, financial resources, postcode, or other characteristics

All trans and non-binary people should have equal access to treatment pathways. A large proportion of trans people identify as non-binary,^[8] but medical practitioners still often consider non-binary patients to be inherently more complex, meaning that they experience greater difficulties and delays in accessing treatment.^[9] People of colour and disabled people face racism and ableism when accessing services, and trans people whose presentation does not conform to masculine or feminine gender norms are also likely to be seen as more complex cases.^[10]

We welcome the letter from the Chief Medical Officer recommending better inclusion of non-binary people in the update of the Gender Reassignment Protocol, but further action must be taken to ensure equality of access to transition-related healthcare. Any update to the protocol must ensure that all trans and non-binary people should have equal access to appropriate care, and there should not be pre-determined pathways for transition-related healthcare that assume all patients will need the same care. Medical interventions for trans and non-binary people should be person-centred and focus on the needs of the patient, not on the label that they use to describe their identity. Trans and non-binary people who are marginalised in multiple ways, such as trans people of colour or disabled trans people, should also have equal access to all treatment pathways.

To ensure equality of access, service design and delivery must be in collaboration with trans and non-binary people, including those marginalised in multiple ways. This will also require improved mechanisms of accountability that empower service users who have experienced discrimination to seek redress.

6. Require transition-related healthcare to meet referral-to-treatment standards

Many trans and non-binary people wait for several years simply for a first appointment at a Gender Identity Clinic. At the largest clinic, the Sandyford in Glasgow, people can currently expect to wait longer than 44 months for an initial appointment.^[11] Throughout both working group meetings and community forums, trans and non-binary people highlighted the extreme distress, and detriment to well-being, that such long waiting times cause.

Research has found that the length of waiting times meant that:

• 67% of people experienced poorer mental health
• 62% of people experienced lower self-esteem
• 58% of people felt more isolated and excluded
• 30% of people were less likely to access other services
• 29% of people self-harmed
• 13% of people attempted suicide^[12]

This research was conducted in 2016, when reported waiting times were 260 days for adults and 314 days for young people. As waiting times have significantly lengthened since then, the impact on trans and non-binary people has likely worsened.

Gender identity services are not currently required to meet the referral-to-treatment standards, largely due to recognition that they would be unable to do so. An important step to meet the commitment in the strategic action framework to reduce waiting times and reach referral to treatment standards^[13] would be formally mandate services to meet the standards.

Mental health

Trans and non-binary people need to be well served by mainstream healthcare services, but also to access specific services they can trust to meet their needs. Across our mental health recommendations, we call both for the mainstreaming of understanding about our healthcare needs, and for the development of specific programmes in collaboration with trans and non-binary people.

7. Make person-centred, specialised gender identity counselling services available for trans and non-binary people, separate from the assessment pathway for transition-related healthcare

Scotland lacks specialist mental health services and support for trans and non-binary people. While it is important that mainstream services are able to support trans and non-binary people, there is also an important role for specialist services.

In particular, trans and non-binary people should be able to access support for exploring their gender identity, and for dealing with their distress around gender dysphoria, separately from the assessment pathway for accessing gender-affirming treatment. When therapeutic support is only available as part of the process for accessing treatments like hormones and surgeries, this often prevents the development of a therapeutic relationship, as the patient may not feel they can be open and honest with the clinician for fear of being denied the medical interventions they seek. Research shows that more than half of respondents who have experienced uncertainty about their gender, or who felt emotionally distressed or worried about their mental health, had not discussed this with clinicians at Gender Identity Clinics out of fears that it would delay their access to treatment.^[14] People experiencing distress around their gender should have supportive therapeutic environments to explore their gender identity.

One way to take this forward is the co-commissioning of services delivered jointly by the third sector and the NHS. This would provide trans and non-binary people with specialist, community-based mental healthcare, which they could access confidently and trust to understand their identity.

8. Fund mandatory training for mental health providers on trans and non-binary healthcare needs

Lack of knowledge and understanding in general mental health services is a major barrier to trans and non-binary people receiving competent care, and this was discussed often in community forums. For many, disclosing their trans or non-binary status in mental health settings could derail appointments from a necessary focus on mental health needs. Many people are inappropriately labelled as too complex or referred to specialist services simply because they are trans or non-binary.

Trans and non-binary people who are marginalised in multiple ways often face even greater barriers to accessing competent mental health support. For example, trans people of colour find it difficult to access support that can adequately address their experiences of both racism and transphobia, and how these intersect with one another. Autistic trans people find it difficult to access support that can adequately engage with both their neurodiversity and their trans status, and how these intersect with one another.

Mainstream mental health services should have a high enough baseline knowledge of trans and non-binary people to be able to provide them with care. It is vital that mental health professionals receive training on trans and non-binary healthcare needs, including the knowledge and skills needed to provide support to non-binary people marginalised in multiple ways. Training should be designed and delivered in collaboration with trans and non-binary people.

9. Conduct robust Equality Impact Assessments for mental health policies and actions, ensuring that they address the specific needs of trans and non-binary people

We are glad that the Scottish Government has committed to increase spending on mental health services. However, current national mental health policy often fails to acknowledge the disproportionate mental ill-health experienced by trans and non-binary people (and indeed all LGBTI+ people),^[15] and so the resulting policies could further entrench mental health inequalities.

Where EQIAs are used to ensure that national mental health policies have positive impacts across multiply marginalised groups, such exercises tend to analyse protected characteristics in isolation from each another. This means that policies are often unable to address the potential impacts for people who are marginalised in multiple ways, such as non-binary people of colour, who will experience racism intersecting with transphobia. Without understanding intersecting marginalisation, policies cannot understand multiply marginalised people's barriers to accessing care.

For example, increased funding for suicide prevention is welcome, but needs to take account of specific challenges facing trans and non-binary people. Trans and non-binary people are at increased risk of suicide, but we can experience ignorance of our identities or outright transphobia when accessing mental health support. In some cases, this can lead to a worsening of suicidality. Therefore, suicide prevention and awareness training must equip mental health first aiders to respond to trans and non-binary people appropriately. Mental health policy should also consider targeted interventions for multiply marginalised populations, such as specific suicide prevention support for trans and non-binary people of colour.

Programmes for improving the population's mental health should be subject to robust EQIAs, so that they can target spending and design to improve the mental health of multiply marginalised people, including non-binary people.

Primary care

10. Review the use of a sex code in Community Health Index (CHI) numbers, and enable non-binary people to be recognised in medical records

Sex is currently hard-coded into Scottish patient data through CHI numbers, which raises significant problems for trans and non-binary people.

This recommendation is not about removing sex from medical records. Indeed, it is important that this sex is recorded relevantly in health information, and that trans and non-binary people continue to be able to update their records to reflect their lives. Instead, the issue is with how sex is coded into CHI numbers, and the barriers and problems this causes for accessing healthcare.

There are significant limitations of having sex embedded into CHI numbers, and inaccurate recording of trans and non-binary people's sex leads to situations where access to healthcare can be restricted. Often, your sex code is used to determine how a health service interacts with you, such as in which cancer screening programmes you are invited to, how labs interpret your test results, and what kinds of referrals are made for you.

For example, some transfeminine people may not be automatically invited to breast cancer screenings, though they are at increased risk, and some transmasculine people have experienced labs refusing to analyse their pap smears, as their system had no way of accounting for a male-coded pap smear. Similarly, some trans and non-binary people were initially unable to access COVID-19 vaccines, due to discrepancies between the sex recorded with their GP, and the sex coded into their CHI numbers.

These problems cannot be solved by preventing trans and non-binary people from updating the sex on their medical records. This would breach privacy of gender history, and create records that conflicted with trans and non-binary identities. In any case, trans and non-binary people have diverse bodies, and usually do not have healthcare needs that can be captured by being coded as their sex assigned at birth. Being unable to update sex records would still result in inappropriate treatment.

Presuming medical needs based on sex codes has an impact beyond trans and non-binary people. For example, women who have previously undergone a mastectomy may be inappropriately called for breast screening. We recommend an alternative approach in which all patients are encouraged to opt in and out of screenings and similar programmes. This could include an automatic opt-in of patients on the basis of the sex recorded on their medical records, but with the ability to opt-out for those who no longer need to be called, and to opt-in those who have been excluded based on the sex on their record but who do require that specific screening. A similar approach could be taken across the NHS administrative system. This way the system could still make sex-based assumptions at the broadest population level, but these assumptions would not create barriers to anyone receiving appropriate care.

Because sex is coded into CHI numbers, when a trans or non-binary patient changes the sex on their medical record they are given a new CHI number. In some cases, this creates problems around access to their medical records: some trans and non-binary people have lost all access to previous records held on their previous CHI number, and others have continued to receive notifications for two different CHI numbers, as if they were two different people.

Medical records should also be able to describe patients as non-binary. Being recorded as male or female can create barriers to accessing all forms of healthcare for non-binary people. Some healthcare professionals take non-binary identity less seriously as a result, and many non-binary patients feel they are forced to make a choice between two imperfect options in order to be able to access healthcare.

The CHI number system should be reviewed, and sex should no longer be hard-coded within patient numbers. Instead, sex should simply be included on medical records, should continue to be updateable by trans and non-binary people, and should include an option to record patients as non-binary. The sex on a medical record should not then place limitations on how individual patients are able to interact with healthcare services due to this being hard-coded into IT systems and patient markers, nor should changing the sex on a medical record require the creation of a new CHI number for a patient.

11. Fund mandatory training for primary care providers on trans and non-binary healthcare needs

Throughout the working group meetings and community forums, participants highlighted the lack of knowledge of trans and non-binary healthcare needs among primary care providers. Many reported that GPs often have poor knowledge, and that, while knowledge of trans people is generally low, understanding of non-binary needs is particularly lacking.

The need for GP referral to access Gender Identity Clinics in some areas of Scotland can provide a significant barrier to accessing transition-related healthcare, particularly if a GP is ignorant of trans and non-binary healthcare needs, or resistant to meeting them.^[16] Many trans and non-binary people lack confidence in approaching their primary care providers for support. For example, in one survey of non-binary people's experiences, 50% of respondents said they "never" felt comfortable sharing their non-binary identity with their GP.^[17]

Community members often raised the issue of "trans broken arm syndrome". This is when healthcare providers, particularly GPs, assume that trans people's healthcare needs are always specialised, and always require referral to Gender Identity Clinics, even when the issue is not related to transition.

Training for primary care providers must include adequate information on trans and non-binary healthcare needs, and funding should be available to improve existing training programmes. Training must provide the knowledge and skills needed to support trans and non-binary people marginalised in multiple ways, and it should be designed and delivered in collaboration with trans and non-binary people.

12. Desegregate treatment pathways so that interventions that are available via a GP referral for cisgender patients are similarly available via a GP referral for trans patients

As part of transforming transition-related healthcare in Scotland, trans and non-binary people should be able to access medical interventions via a GP referral in the same way that cisgender people are able to access equivalent interventions.

For example, speech and language therapy for trans and non-binary people should be accessible via primary care. Currently, some trans and non-binary people can be referred for speech and language therapy via their GP, but this depends on where you are in the country and whether your GP is willing to provide a referral. For many, this intervention can only be accessed via a referral from a Gender Identity Clinic, with all of the issues this raises around excessive waiting times and barriers to being referred. However, a cisgender person who needed to access speech and language therapy would be able to do so via a referral from their GP. Although the two people may require speech and language therapy for similar reasons – mental distress related to voice, and barriers to participation in public life – a trans or non-binary person first needs to be referred by a GP to a Gender Identity Clinic, then wait to be assessed by this clinic, then wait for an additional referral to therapy. This causes a difference in waiting times of several years, as well as an unnecessary and distressing administrative burden. This is unequal access to care.

As much transition-related healthcare as possible should be removed from a specialist pathway and integrated into primary care. This is so that trans and non-binary people do not face additional barriers to accessing medical interventions that are much more readily available to cisgender people. While in some cases, such as hormone therapy, this will require considerable work with GP groups to build the capacity for taking on additional responsibilities, in other areas, such as speech and language therapy, or hair removal, where the only responsibility of the GP need be referral, significant change could be made relatively quickly to drastically improve trans and non-binary people's access to healthcare.

Fertility preservation

13. Ensure that trans and non-binary people have equal access to fertility preservation treatments, including access to the information needed to make informed choices

Fertility preservation is often poorly-handled for trans and non-binary people. Some clinicians in Gender Identity Clinics can be very focussed on fertility preservation, particularly for young trans and non-binary people, which leads to unnecessary delays in accessing other medical interventions. On the other hand, some clinicians can pay too little attention to fertility preservation. There are issues concerning not raising the possibility of fertility preservation with trans patients in a timely manner, particularly for transfeminine people. Overall, information about the impacts of transition-related healthcare on fertility is poor, and poorly available.

Only being able to access fertility preservation via a Gender Identity Clinic is a significant barrier, and means that trans and non-binary people do not have equal access to treatments. Not all trans and non-binary people access transition-related healthcare via a Gender Identity Clinic, and so may be unable to access fertility preservation before beginning treatments that affect fertility. Some trans and non-binary people may have been discharged from a Gender Identity Clinic before accessing fertility preservation, and so need to be re-referred in order to access treatment.

Trans and non-binary people should be able to be referred for fertility preservation directly by a GP. Additionally, healthcare providers should have clear guidance on fertility preservation options for trans and non-binary people.

14. Work with the UK Government to provide clarity to trans and non-binary people about their legal rights regarding fertility preservation, access to assisted reproduction services, and status when creating families, and work to prevent discrimination in realising these rights

Trans and non-binary people face uncertainty about fertility preservation options and their rights as potential parents. Services and laws across birth registration, assisted reproductive technology, and legal recognition, rarely recognise non-binary people, or diverse parents and families in general.^[18] The legal uncertainty around trans and non-binary people's rights to access assisted reproductive technologies forms more barriers to creating families.

The Scottish Government should liaise with the UK Government around reserved legislation, such as the Human Fertilisation and Embryology Act 1990 (HFEA 1990), to seek clarity on trans and non-binary people's legal rights relating to assisted reproductive technologies and creating families. Recent litigation and legal commentary has raised important concerns about the legality of trans and non-binary access to such treatment services intended to help in carrying children, and about their legal status as a parent of their children post-birth.^[19] This could hinder the capacity of trans and non-binary people in Scotland to found a family.

While acknowledging the reserved nature of the "subject-matter of the Human Fertilisation and Embryology Act 1990" (Scotland Act 1998, Schedule 5, Pt.II), we nevertheless encourage the Scottish Government to give these issues appropriate attention. This should include working with the UK Government, in order to ensure clarity for trans and non-binary people in Scotland about their ability to access fertility services, and their ability to create in law parent-child relationships that reflect the reality of their family life.

15. Fund mandatory training for fertility preservation providers on trans and non-binary healthcare needs

As in mental health and primary care settings, fertility preservation providers – including counsellors, nurses and doctors providing care – often do not understand trans and non-binary healthcare needs.^[20] The Scottish Government should fund mandatory training for healthcare providers in fertility preservation on trans healthcare needs. As with mental health and primary care, training must provide the knowledge and skills needed to support to trans and non-binary people marginalised in multiple ways, and it should be designed and delivered in collaboration with trans and non-binary people.