Written evidence submitted by Dr Ben Vincent (HSC0045)

Executive Summary

• Inequality is experienced by trans people when accessing gender-affirming related care, due to extreme waiting times constituting negligence, and lack of training and sensitivity among healthcare practitioners (including from many specialists in Gender Identity Clinic contexts);
• Trans healthcare in the UK is made unnecessarily complex and puts additional pressure on the NHS through assessment in a secondary care context;
• Some practitioners in primary and/or secondary create barriers to trans people accessing gender-affirmative care through uncritical reproduction of stereotypical gender norms, in terms of what they may expect of trans women, trans men, or non-binary people in order to provide diagnosis, prescription of hormones, or support of surgical intervention. Such norms create barriers for non-binary people in particular;
• Trans people’s access to and experience of healthcare unrelated to a gender transition can be negatively impacted by a practitioner’s inappropriate emphasis on trans status (colloquially referred to as ‘trans broken arm syndrome’)

1. Introduction

1.1 I am an academic sociologist at the University of York. My work has focused on trans experiences of healthcare inequality. My background includes a bachelor’s degree in genetics, an MPhil degree in multi-disciplinary gender studies, and a PhD in sociology and social policy. My PhD investigated non-binary people’s identity negotiation in relation to experiences of LGBT communities and medical practice. I am the author of the book Transgender Health: A Practitioner’s Guide to Binary and Non-Binary Trans Patient Care (2018), and multiple academic peer-reviewed papers and articles on the subject of transgender health. I am a member of the World Professional Association for Transgender Health (WPATH) and I am a co-author of the forthcoming next edition of the WPATH Standards of Care, which define international best practice in the provision of trans healthcare. I am also chair of the Gender Identity Research and Education Society (GIRES), however this submission is provided in an individual capacity. The evidence I offer draws from my research and is specific to inequalities experienced by transgender adults in healthcare. My reason for submitting is the high relevance of my work to the inquiry, in conjunction with my commitment to challenging inequality.

2. The needs of trans people

2.1 I use the word ‘trans’ as an umbrella term to refer to anyone whose gender identity is not the same as the assignment of sex/gender made at birth. It is well established that trans people can experience specific and significant distress in the form of gender dysphoria[1]. Mitigation of this distress can necessitate social transition in facilitation of being recognised as the correct (experienced) gender. In many cases access to gender-affirming medical interventions (GAMIs) are also needed in the form of hormone replacement therapy (HRT), any of a range of surgical interventions in relation to a person’s genitals, internal reproductive anatomy, and/or secondary sexual characteristics, or further non-surgical interventions such as hair removal or voice therapy. There has been a history of being a transgender person to be considered to be a mental disorder through older, problematic diagnostic categories. These included ‘Gender Identity Disorder’ in fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), and ‘Transsexualism’ in the 10th edition of the International Classification of Diseases (ICD-10). The 5th edition of the DSM altered their category to Gender Dysphoria to emphasise that pathological distress requires medical support rather than disidentification with assignation at birth in and of itself. Continued mention in the DSM should not be taken to imply trans people are mentally ill[2], but is necessary to allow for continued access to healthcare under insurance-based models. The 11th edition of the ICD has replaced transsexualism with Gender Incongruence, which has been moved out of the mental health section and into sexual health. This does help with reducing the association with mental health, but also risks increasing existing confusion and conflation of gender identity as a sexual health issue rather than a discrete and meaningful health-related phenomenon in its own right. This is to be presented at the World Health Assembly in May 2019 and come into effect on 1st January 2022[3].

2.2 The current system which allows access to GAMIs requires referral to a Gender Identity Clinic (GIC), subsequent diagnosis before ultimately receiving prescription for HRT (where desired) from one’s GP. GICs are overloaded to a dramatic extent, with average waiting times for a first appointment at adult services being over two years[4]. This universally fails to meet requirements of an appointment within 18 weeks of referral. Provision of HRT in a primary care context without prior assessment in a secondary care context is within both the ability and remit of primary care practitioners, as only in very rare cases (such as blood tests showing anomalous results which may indicate hormone-sensitive cancer, for example) is specialised guidance necessary for HRT to be initiated. This is evidenced by the successful primary care provision of trans healthcare in countries such as Canada[5].

2.3 NHS England has recently published its report on the outcome of public consultation on specialised gender identity services for adults[6]. One aspect of the report addresses the insistence from many members of the trans community that an informed consent model of healthcare provision (which involves no psychiatric assessment[7], though may still assess for absolute contraindications to HRT through bloodwork) would be of significant benefit. This was not addressed adequately by NHS England, who in their response[8] did not address how an informed consent model is actually delivered in other national contexts. Instead, NHS England simply quoted that the Clinic Reference Group (CRG) advised there is no generally accepted definition of what informed consent is, and that a minority of people believe ‘informed consent’ means a practitioner must provide access to GAMIs to an informed service user, regardless of if the practitioner has reason to believe this may not be in a person’s best interest. This sidesteps valid calls from the trans community for NHS England to assess informed consent models as they are practiced, rather than a self-acknowledged minority interpretation which does not reflect what international practices are. Such lack of engagement with international best practice development denies trans people in the UK access to timely and respectful interventions relative to other countries. This is a problem specific to transgender healthcare rather than across the NHS more broadly with other areas of medicine, indicating a specific inequality.

3. Specific Examples of Inequality[9]

3.1 The following section includes quotation from original research data. In conducting doctoral research, multiple non-binary participants were explicit about how they felt it was necessary to alter the narrative they provided to medical staff in order to ensure they were taken seriously, and able to access the GAMIs they needed. An example passage from one interview was as follows:

3.2 [participant]: I think it is [different for non-binary people to access GICs]. Because when you go into an exchange with a medical professional who’s assessing you for some sort of treatment, you… probably have if not a certainty about what you want to do, at least the idea that you don’t want to actively cut off your options by admitting that you’re not a trans binary person. Because once they decide that they’ve assessed you and you’re not transsexual you definitely won’t get any hormones etc. so there’s a defensiveness and a realisation that if you go in and let them know how uncertain you are or how non-binary you are that you’ll just cut off all your options for the future. I think a lot of us, if we don’t lie we really deliberately present all the stuff that makes a good case for treatment because that’s what we want to do, and we can always change our mind and not have the treatment. But once they’ve said no to the treatment we can’t change our minds about that, not too easily. So that’s what makes it difficult to be honest.

3.3 [me]: So do you think people try to keep their options open by presenting more binary than they maybe are?

3.4 [participant]: Yes I think so. More binary, more certain. More… yeah. Absolutely. More like… the narrative of ‘typical transsexual’ experiences known to have worked.

3.5 Some individuals expressed a sense that their (specialist, GIC) clinicians communicated that non-binary people are ‘harder’ to treat, without this reflecting any definable medical complexity. Clinician comfort with service user self-description risks being a deciding factor in how long assessment and access to care may take:

3.6 [participant]: That I was moving (I think the words he used were ‘slowly drifting’) towards a place that was much easier to ‘treat’ from the GIC’s greater NHS perspectives because it had a treatment history. Much as I can understand this, it’s a bit of a blow to hear it put like that.

3.7 The thing I’ve noticed most is pronouns. He uses the pronouns he thinks are appropriate not that I think are appropriate.

3.8 [participant]: I haven’t self-defined as non-binary to the NHS. When I say I picked [clinic] because [participant] says they’re non-binary friendly, I mean I won’t worry about going in in flowery shirts and earrings in both ears; that’s all. That’s the limit of my honesty – I’m just going to tell them I’m not female; that’s not a lie.

3.9 Some non-binary people can experience fear and discomfort in primary care settings through a sense that the environment may be hostile to them:

3.10 [participant] I realised it’s not just the stress and workload that is keeping me from booking an appointment with my doctor. It is also the fact that he is very conservative… His nurses and staff also make me uneasy. Uneasy enough that I have to prepare myself mentally before I go to the clinic; make sure that there are no traces of nail polish or mascara visible on me and dress carefully in what I call my “office drag”. It doesn’t make me feel good. It actually feels awful to be so afraid of these people judging me at a moment when I feel pretty vulnerable already.

3.11 One participant recounted their experience working as staff in an NHS context, and experiencing explicit transphobia in the workplace in relation to patients:

3.12 We had on one placement I was on… there was someone who, certainly on records was a man, and who was presenting male, but who had somewhat effeminate mannerisms and a little bit of a high pitched feminine tone of voice and pattern of speech. Which – so what? And as soon as they [the patient] were gone out the room [nursing colleagues said] – “do you think that’s a woman? I bet that’s a woman! I bet it’s a woman that’s just like – being a man, or it’s a tranny!” And I was like “No, if it was someone who was transitioned and was on hormones as you’re suggesting then their voice would be lower, surely?” I was trying to like, logic it, because telling your boss that they’re a bigot doesn’t work. And they were like “oh maybe they forgot to take their medication this morning” I was like, you can’t change someone’s voice box in a day by missing your medication!

3.13 The concept of ‘trans broken arm syndrome’ has been previously described to the Women and Equalities committee[10]. This is underscored by the following example from primary care:

3.14 I have had a sore arm for around 4 years. It actually started before I first took testosterone. I went to see a doctor about the pain after a couple of years… and was told that the muscles in my arm were growing, due to the testosterone, and that these were essentially ‘growing pains’. “But why just in one arm?” I queried. The reply was that as I am right handed, I was using the ‘new’ muscles more frequently, so wasn’t experiencing pain. In my poor, slovenly left arm, I had pain due to my body not being used to the muscle growth. At that point I gave up.

3.15 The intersection of trans status and disability/chronic ill health was shown through participant accounts to result in unequal experiences of care, due to the lack of cultural competency around trans healthcare the can construct a culture of fear around seeking help:

3.16 My GP wants to put me on estrogen as currently I don’t have much. When I have tried it before, I felt suicidal. There is a chance my abnormal hormone levels are contributing to my other disabling symptoms. I take 51 tablets per day. My physical dysphoria is pretty much gone when I take opiates – which is every day right now.

3.17 This excerpt shows how this participant’s experiences of chronic illness and their experiences of gender cannot be disentangled, in terms of medical treatment as well as social interactions. The opiates which they were taking during the research period served to relieve their gender dysphoria, though were not prescribed in relation to this. The participant explained how they did not wish to discuss gender with their doctors because of the potential to disrupt their other carefully managed and highly necessary healthcare interventions.

4. Recommendations

• 4.1 NHS England has included a headline change of “Extension of model for delivery of care to multi-disciplinary teams in primary care, subject to positive early adopter evaluation from 2019/20, including evaluation of value and affordability”[11]. Due to the precedent of improved trans healthcare through primary care provision and the solution to the inequality of waiting times for secondary care assessment, I call on the government to guarantee allocation of resources specifically to facilitate trans-specific healthcare service restructuring.
• 4.2 That it be recognised that an informed consent approach is consistent with international best practice in trans healthcare, and as such a detailed and specific review of service provision in relation to how such a model may be optimally operated in a UK context.
• 4.3 That NHS England consult more widely with trans communities on the particular issues of non-binary issues and barriers to adequate healthcare for disabled and chronically ill trans people.

Submitted October 2018