Non-Binary Working Group minutes: June 2021

Attendees and apologies

Attendees:

• Dr Ben Vincent, The Open University (Chair)
• Oceana Maund, Scottish Trans Alliance
• Vic Valentine, Scottish Trans Alliance
• Paul Daly, LGBT Youth Scotland 
• Megan Snedden, Stonewall Scotland
• Katrina Mitchell, LGBT Health and Wellbeing
• Non-Binary Community members
• Dr Carolynn Gray, University of the West of Scotland
• Dr Peter Dunne, University of Bristol
• Louise McCue, Maternal and Infant Health, Scottish Government
• Caitlin Byrne, Primary Care, Scottish Government 
• Ewan Walker, Gender Identity and Healthcare Access, Scottish Government
• Morag Shepherd, Health and Social Care Analysis, Scottish Government

Secretariat:

• Catrina Steenberg, Equality Unit, Scottish Government
• Paul Sloan, Equality Unit, Scottish Government
• Clelia Noirot Baviera, Equality Unit, Scottish Government

Apologies:

• Eilidh Dickson, Engender
• Sarah Anderson, LGBT Youth Scotland
• Emily Green, Equality Unit, Scottish Government
• Craig Graham, Primary Care, Scottish Government 
• Carole Teale, Mental Health, Scottish Government

Items and actions

Welcome and introductions

The Chair welcomed attendees to the second meeting of the Group and invited introductions from each Group member in turn. They explained that the aim of this session was to facilitate an initial discussion around healthcare for non-binary people, in order to inform the recommendations to progress non-binary equality to be submitted to Ministers in March 2022.

They also highlighted that it was important to remain mindful that identity should not be the primary driver for accessing health care if our aim was to ensure equitable access to health services for all. It’s not helpful to have different clinical pathways for non-binary people than for trans men and trans women and we should avoid ‘siloing’ people into specific paths. 

Note of last meeting (23 March 2021)

The suggestion of a rotating Chair had been met positively. Group members were encouraged to put their names forward for this role. However, Dr Ben Vincent was content to continue in the Chair role if no one else volunteered.

Action:

• group members to email the secretariat by 14 July if they were interested in the rotating Chair role

The Secretariat was grateful to all Group members who had commented on the Terms of Reference (ToRs). The revised ToRs would be sent to the Minister for agreement shortly, prior to publication on the Working Group’s Scottish Government webpage. 

The Group had also provided comments on the revised Paper One, which would be circulated shortly. 

Mental health services

The Chair invited members to share their views on access to mental health services for non-binary people.

The Group noted that mental health services available for non-binary needs did not currently exist within the NHS mental health services pathway. It was noted that non-binary people did not have access to specialist counselling outside of the Gender Identity Clinic (GIC) system, where accessing GIC services could sometimes take up to three years following referral. It was emphasised that this delay for accessing GICs also had a significant impact on non-binary people’s mental health. The group also discussed the need for mental health/counselling provision to be available outside of GIC setting – noting that, people may need support around their gender identity or have things they want to explore outside of an assessment model that are unrelated specifically to progressing with other medical interventions

The Group noted that there was a continued need to challenge assumptions of health professionals when interacting with non-binary people.

In some cases, non-binary people have decided to bypass the GIC system and turned to the private system instead in order to access hormones, surgery referrals etc. This resulted in excluding those who could not afford private healthcare. Using the private system was partly due to the significant waiting time to be referred to GICs but also to the lack of trust in the NHS system. Group members expressed the view that the GIC system was based upon inflexible diagnostic outcomes rather than holistic treatment. 

Members highlighted the need for all mental health practitioners to receive dedicated training on non-binary people and their needs, to improve understanding. Such training should also be extended to public facing, administrative staff.

Members noted that cisgender assumptions about what being trans and/or non-binary were created potential for both an ‘economic impact’ (if then accessing private services) and a negative ‘social impact’. 

The Group identified that being open about being non-binary within both the mental health service and GIC system could cause significant barriers, particularly as there is often poorer knowledge and awareness around non-binary people’s identities and needs than those of trans men and trans women. Non-binary people often felt misunderstood and in some cases they portrayed themselves as trans men or trans women to create less confusion for healthcare professionals, and because they felt this would result in a better standard of care.

Group members added that while the Scottish Government had recently increased its activity around mental health, there was still very little focus on LGBTI mental health. The Group called for more specific interventions designed and targeted at LGBTI people within the NHS.

The Group agreed that there should be a baseline understanding amongst all practitioners around non-binary experiences.

Members added that non-binary people experienced barriers within NHS systems that still operated using cisgender logic, which could sometimes lead to further trauma, as well as depression and anxiety.

The Group briefly discussed the potential impact of accessing trans healthcare (e.g. hormone therapy) for individuals who may be detained under the Mental Health (Care and Treatment) (Scotland) Act 2003.

Gender Identity Clinics (GICs)

The Group was then invited to share their views on the barriers for non-binary people to navigate GICs in Scotland.

Members noted that GICs and the Gender Reassignment Protocol often presumed a single unified pathway of care, which failed to reflect the variety of all trans experiences (but may be particularly felt by non-binary people)

In addition, members were clear that the system remained largely under resourced and inadequately designed, leading to significant delays in accessing treatment options. Members expressed the view that GICs were designed in a way that treated “identities” by labelling people, as opposed to adopting a person-informed approach to successfully treat gender dysphoria in all its forms.

A general observation was a lack of equality when accessing care, with restrictions on treatment options where transgender and cisgender people were assessed on different terms to access similar treatments within the NHS e.g. forms of hormone therapy. Even when treatments were available beyond a psychiatric diagnosis, both GPs and patients were often unaware of various options available to them e.g. speech and language therapy teams.

The Group agreed that there was still much confusion and potential misinformation amongst professionals as to non-binary identities. Pathways to access GICs remained very hard to navigate and impacted negatively on non-binary people, particularly around waiting times following referral.

Non-binary people were sometimes unsure whether they could access GICs and whether these were equipped to help them. Members noted it was difficult for non-binary people to access basic information on the work of the GICs and what to expect when accessing these services if they were non-binary and wishing to explore gender identity. The Group noted that non-binary people were not receiving reassurance that they would be treated. 

The potential rigidity of the current service model made it very difficult for people to access interventions throughout different parts of the health service without first accessing a GIC, which reinforced the argument and the need to streamline trans and non-binary care throughout NHS Scotland.

Group members noted that GICs had the potential to drive evidence based research in the field of gender identity. Some members noted there was, at times, a poor understanding of evidence base for hormone therapies, with non-binary individuals continuing to have to be their own advocates to access the healthcare they needed.

The Group also noted that the current Gender Reassignment Protocol for Scotland (GRP) was outdated and not inclusive of non-binary people, which created further anxiety and low expectations amongst the non-binary community. This contributed to the lack of mainstreaming trans and/or non-binary health across NHS services.

It was expressed that some clinicians within the GICs did not have a baseline understanding of non-binary identity, which could delay diagnosis and treatment.  

It was noted that the Scottish Government would be writing to the National Gender Identity Clinical Network for Scotland, asking them to review and update the GRP. It was expected that an updated GRP would be inclusive for non-binary people. 

Primary care

The Primary Care team within the Scottish Government was invited to provide a short overview of their work.

Several SG Primary Care colleagues were members of the Health Inequalities in Primary Care Short Life Working Group (SLWG), but noted that there had been no specific discussions about non-binary healthcare thus far. Primary Care includes a wide range of services, including but not limited to dentistry, pharmacy, physiotherapy and optometry.

Action:

• SG Primary Care officials will feedback to the SLWG some of the points that had been made in relation to the barriers that non-binary people experienced when accessing primary care in an upcoming meeting

The Group noted that non-binary people living in rural communities often faced additional barriers, with very little points of access for information. 

Action:

• SG Primary Care officials agreed to check whether the Remote and Rural General Practice Working Group had touched on issues around accessing gender associated healthcare

Gender Identity and Healthcare Access team confirmed rurality was being considered as part of the work to improve GICs in Scotland.  

The Group further indicated that while this would be helpful, they had found it difficult to engage with Scottish Government health teams around trans and/or non-binary specific healthcare in the past. However, they were hopeful for more joined-up conversations going forward. Gender Identity and Healthcare Access team confirmed that they will be working with colleagues across Health and Social Care Directorates. 

Members raised some concerns in relation to the lack of formal recognition of non-binary people within the administrative framework, as currently, you must be recorded as either male or female throughout. This had repercussions on how the information was then recorded into the system, and ultimately impacted on non-binary people’s access to healthcare in an equitable manner e.g. COVID-19 vaccination programme or cancer screening appointments. 

The Group also raised concerns about the NHS Scotland CHI (Community Health Index) number within which a person is coded as part of that record as either male or female. A change to CHI record could cause bureaucratic barriers to a person’s health record correctly reflecting their health needs e.g. appropriate screening options or being able to access GP services in an equitable manner. The group thought that a review of how gender and CHI are interlinked should happen, to more fundamentally consider the benefits/drawbacks of having gender embedded within identity markers on NHS systems, rather than solely including a non-binary option.

The Group reiterated the necessity of moving gender services into primary care, although this would require building greater support amongst GPs who would subsequently be asked to shoulder more of the trans and/or non-binary healthcare. This reinforced the need for further training and support available to GPs.

While the current protocol did not require non-binary people to refer to their GP, some GICs require that you are referred from your GP. This can present a greater barrier, if they lack trust. Additionally, all people require the support of their GP for ongoing prescribing and monitoring of their hormones, and so this, additionally, can be a barrier where a person does not have a good relationship or lacks trust in their GP.

Fertility preservation

The Group noted that trans and/or non-binary people often found the information around fertility preservation difficult to navigate, particularly as to what options were available to them and how this interacted with being trans or non-binary.

The current legal structure also influenced trans and/or non-binary decision making around fertility, as it focussed on cisgender needs.

The Scottish Government’s Maternal and Infant Health Team was currently looking at criteria for fertility preservation, which included access for trans and/or non-binary people. The team indicated that they have been meeting with a wide range of stakeholders, and that they will keep the group updated as things progress.

Action:

• Maternal and Infant Health Team to keep the group updated on the criteria for fertility preservation

The Group noted that access to trans healthcare was still highly dependent on individual patients understanding the system and the processes, which could often be intimidating and anxiety-inducing. This represented an additional barrier when it came to making decisions around fertility preservation. 

Closing comments and AOB

The Group’s next meeting will take place on 16 September 2021 at 2 – 4 pm. Officials will issue further details shortly.

Minutes and actions for this meeting will be issued within two weeks.

The Group reiterated the need for a shared understanding of how the group will turn these meetings into recommendations given the breadth of topics to cover.

It was agreed that the virtual platform would be progressed for members who had returned their Privacy Notices.

Action:

• secretariat will progress this during the week beginning 28 June 2021

The Group thanked community members for their time, who attend these meetings voluntarily.

The Group underscored the need for transparency of accountability in the report writing process.