by Katie Gilchrist

I am an MSc Health Psychology student at UCL. As part of the programme, we are required to attend a clinic for observation. As a brain tumour survivor, a natural choice for me was the Neurosurgery clinic at The Unit of Functional Neurosurgery at The National Hospital for Neurology and Neurosurgery, London.

My sense of tumour

In December 2017 I was diagnosed with a benign brain tumour called acoustic neuroma and in February 2019 I underwent surgery at The Royal Randwick hospital in Sydney, Australia to have the tumour removed. A consequence of the surgery was being left with grade 6 House-Brackman facial paralysis, single sided deafness and one less vestibular nerve. I spent the first month recuperating from the surgery, practicing walking with one balance nerve and adjusting to losing the hearing in one ear and the loss of facial movement on one side of my face. Seven months after the surgery my husband and I packed up our lives after spending seven years in Australia and moved back to the UK where I started my MSc in Health Psychology at UCL. Following my experience, naturally, I was really excited about spending a morning in a hospital clinic (a mandatory part of the course) and even more excited when I saw there was a neuro clinic!

Feeling empathy for patients

So, recently I attended the clinic at The Unit of Functional Neurosurgery at The National Hospital for Neurology and Neurosurgery, London with Prof Ludvic Zrinzo. The clinic specialises in cranial nerve disorders such as hemifacial spasm (involuntary facial twitch) and trigeminal neuralgia (chronic facial pain). What I didn’t realise, when I made my selection, was that the conditions Prof Ludvic Zrinzo works with can present with facial droop or weakness and that for some of the conditions the surgical approach, risks and recovery are very similar to what I had. There were a lot of patients with facial movement issues and their faces looked like mine, asymmetrical smiles and one eye looking frozen open, foreheads not able to move and I felt such empathy for them. It was difficult not to run after them and comfort them but at the same time it was like hearing my own diagnosis over and over again. There were several moments where my eye (only one produces tears) glazed over and I had to concentrate not to show too much emotion as that would have been unprofessional. While it may help the patient to see we are human, it is not good for them to feel our burden which may accidentally transfer to them if we overshare.

Learning from the best

Having met a few surgeons through my own health experience, I was really blown away by Prof Ludvic Zrinzo’s approach to patient care. It was great to see a surgeon putting into practice all the psychology aspects we have learned in class this term; building rapport, explaining in clear language, allowing time for the patient to ask questions as well as all the additional points he covered like asking who was at home to help with care, reminding them to bring partners into appointments and explaining all the options available to them and really emphasising that it was the patients decision. Before each consultation, he explained to the patient who we were (there were three students observing) and he asked if it was ok if we stayed and listened. Only one patient decided at that time it was not ok for us to stay for that appointment and Prof Zrinzo kindly asked us to wait outside. On our return we didn’t ask about the patient and nor did he offer any information. The appointment had taken longer than some and we were playing catch up. I also felt there was an understanding between us that in this instance any discussion was to stay between patient and health professional.

What will I take from this into my future roles?

1. The importance of asking the patient what they want
   • Did they mind having students in the room?
   • What were their thoughts on which treatment?

2. The benefits of open dialog
   • Encouraging patients to include family and friends in the conversation
   • Explaining risks and benefits in layman’s terms without provoking fear
   • Asking about family, other health issues, home/work environment
   • Having open discussion with empathy and patience, even if it has been discussed several times previously

Overall, Prof Ludvic Zrinzo had such a great approach and I am so grateful to be able to have observed this. While it was emotional for me it really reaffirmed my desire to help people with health issues and I just wanted to say thank you to UCL and The National Hospital for Neurology and Neurosurgery for arranging such a great experience.

 

An interview with Dr Julia Bailey by Sandra Medina and Angela Gichane (before the Covid-19 crisis)

Thank you for doing this interview with us.  Can you tell us about your job?

I am a sexual health doctor in South East London, and senior researcher in the eHealth Unit at UCL. I teach medical students, NHS staff and researchers, and am also a Graduate tutor and co-chair of the Equality Action Group.

What is your experience of being out at work?

I came out in 1987, when I was a medical student – 33 years ago! I’ve always been open about my sexuality (lesbian), but it doesn’t feel particularly relevant at work. I’ve never felt that that my sexuality was an issue working in primary care and in sexual health: these specialities tend to attract open-minded people, and I know of quite a few LGBQ (lesbian, gay, bisexual, queer) colleagues. Trans and Intersex people are less visible in academia and the NHS – we have a lot further to go in helping trans and intersex people feel seen, safe, welcome and included.

I haven’t experienced overt discrimination at work, but my sexuality has shaped (and limited) my choices. For example, I live in London to be part of the queer community, rather than risk feeling alienated in a small, conservative community.

Is visibility important?

A very important role model for me in my teens was the conductor of the Brighton Youth Orchestra (David Gray), who was a fantastically inspiring musician who was gay. His sexuality was well known, and there was no fuss about it (40 years ago).

At medical school there weren’t any visibly out members of staff, and no out students either – I found my community outside the medical school. I bumped into someone years later who told me that I had been an important role model for her at medical school, which was lovely to hear. As Dr Ronx (the queer, Black, androgynous A&E doctor) says, ‘You cannot be what you do not see’, and I think being visibly out is important.

How can tutors can support LGBTQIA* students?

It is really important that students can trust tutors, and that students feel able to talk about life beyond their studies (if they want to). I don’t proactively ask students about their personal lives, but I do tell them that I’m happy to discuss anything that affects their learning or wellbeing.

* LGBTQIA – lesbian, gay, bisexual, trans, queer, intersex, asexual/aromantic

Many people are quite confused about gender, sexuality, pronouns…. can you give us a summary?

Ah yes – I’ve written an e-learning module on this, and I train GP registrars and sexual health clinic staff. There is a lot of confusion, and concepts and language are changing over time …

Gender

In most societies worldwide people are seen as either ‘male’ or ‘female’ (i.e. binary categories).  These categories are decided (assigned) at birth, usually on the basis of genital appearance. A proportion of the population are intersex – i.e. their genetics, genitals and/or hormones are more complex than neat binary ‘male’ or ‘female’ categories.

Whilst sex and sex variation (male, female, intersex) are defined by genetics, gender identity is someone’s internal sense of gender (e.g. masculine, feminine, intersex, non-binary). Gender expression is the way that gender is expressed to others (e.g. through clothes, the body, behaviour…). Cis gender means that a person’s gender identity is the same as the gender they were assigned at birth (e.g. someone who was assumed to be female at birth, and who identifies as a woman). The terms Assigned Male at Birth (AMAB) and Assigned Female at Birth (AFAB) acknowledge someone’s gender history.

Non-binary or genderqueer people are those whose gender identity does not align with either ‘male’ or ‘female’, and who do not subscribe to conventional gender distinctions. Non-binary and genderqueer identities may be static or fluid. Some people may include aspects of ‘male’ and ‘female’ into their identities, others may reject binary gender categories entirely. Non-binary and genderqueer people may or may not look androgynous (not looking typically masculine or feminine).

Transgender or trans is a term for people who have a gender identity or gender expression that differs from their assigned gender. For example this could be someone who was assumed to be female at birth whose gender identity is male.

Pronouns (such as he, she, they) are very important in affirming someone’s gender identity.

Non-binary people may choose the pronoun ‘they’ as a gender neutral pronoun which is neither male nor female.  There are other gender neutral pronouns (e.g. ze, sie, hir, co, per, ey), and terminology concerning gender identity is evolving. It is important not to just guess or assume someone’s gender identity and pronouns.

Gender is distinct from sexuality. For example, ‘gay’, ‘lesbian’ or ‘bisexual’ are sexualities (sexual orientations), i.e. expressions of sexual attraction.  Gay men are typically attracted to male sexual partners; lesbians to female sexual partners; bisexual people are attracted to people of the same or different genders to them. LGBTQIA stands for Lesbian, Gay, Bisexual, Transgender, Queer, Intersex and Asexual/Aromantic.  There are many, many other ways of expressing sexuality.

What would help trans and non-binary people feel welcome and included?

Getting people’s gender correct is really important, and it makes a huge difference to be asked rather than just guessing gender and pronouns (he, she, they) from someone’s appearance. This is especially important for trans and non-binary people, for whom mis-gendering can be relentless and horribly undermining.

My pronoun is ‘she’, but I also feel non-binary/genderqueer – I find it liberating to move away from the assumptions and expectations that go with being either male or female. It grates to be identified as a lady: e.g. “Good evening ladies and gentlemen…”. ‘Lady’ does not describe me, and it feels irrelevant and distracting – what does my gender have to do with being in a lecture, meeting, restaurant etc.? I feel that the assumptions and expectations of ‘men’ and ‘women’ can be profoundly harmful and limiting, and we should all be free to express ourselves however we like. We’re a long way from that vision, and expression can be especially hard for people who are marginalised in more than one way (e.g. trans women of colour). We have a lot of work to do to ensure that trans, non-binary and intersex people feel safe to be themselves at work.

As tutors and colleagues, we can demonstrate inclusive attitudes to gender and sexuality by displaying LGB, trans, non-binary and intersex stickers, badges or lanyards, and including logos and our own pronouns in email signatures for example.

For email footers:

Out@UCL logo which acknowledges people of colour and trans people:

How can we create a more inclusive workplace?

I think that social events are a good idea, to help people get to know each other. We need to check whether there barriers to being involved:

• Equality. can everyone afford to come?
• Diversity: is the invitation genuinely open to everyone?
• Inclusion: are there factors that will exclude some people, such as alcohol, caring responsibilities, noise levels, access…..

‘Core competence’ in gender and sexuality is important, so that all staff are familiar with issues that LGBTQIA staff and students may face. It’s important to avoid assumptions, and check people’s preferences in terms of gender, pronouns, and confidentiality for example.

We need to avoid assuming heterosexuality, and avoid the gender binary – for example, ask say “Good afternoon everyone” instead of ‘Good afternoon ladies and gentlemen’. You can’t guess someone’s gender or sexuality by appearance, and there are far more LGBTQIA people than widely assumed.

Thank you, do you have anything more to add?

Thank you Angela and Sandra, it has been really interesting talking to you. It has reminded me how important these issues are!

Sources of support for LGBTQIA staff and students

• Out at UCL
• Friends of Out at UCL
• UCL Online Diversity Training
• Trans 101 – The Basics
• What It’s Like To Be Intersex
• UCL Central EDI team
• LGBTQ+ Equality Advisory Group
• Equality Action Group