At Thoughtworks we wanted to look deeper into the User Experience challenge of getting healthcare when a person is non-binary. We set up an open event and invited widely across our networks. 25 people attended, and there was a wide age range, and experience of Non-Binary representation, although we had limited Black, Asian and Minority Ethnic (BAME) representation in the room.
We acknowledge this limited intersectionality means that some experiences were not captured. We’d appreciate feedback on this problem from BAME people who are either non-binary, or interested in technology and healthcare, or both!
GenderFluid was a fishbowl discussion on the challenges of being non-binary and accessing healthcare systems and software.
The focus was on talking about problems, and focussing on healthcare as a trans person, not trans healthcare.
We ran a fishbowl style panel, where everyone was invited to share, and we had input from the majority of the room - with people ranging from healthcare professionals, trainee doctors, and NHS professionals, to technologists and patients. A range of gender identities gave their experience as patients, from people who were in the process of changing their gender, to people who transitioned many years ago.
The general observations as patients were:
“Computer says no” - the software was used as an excuse to discriminate and exclude users based on their gender identity
Getting names correct in the NHS makes a big difference to experience - but can take time to happen (and this is not just a problem faced by non-binary and trans people, it happens to anyone who changes their name)
There are good experiences - there are good people out there - who work hard to make sure that non-binary individuals are seen as people and accorded respect and dignity
Interaction with trans people tends to make healthcare professionals better (check out this article - though it’s American the sentiment is generalised enough and supported by what was said by healthcare professionals).
There were some instances of “trans broken arm”* where being trans or non-binary trumped any other care needed by an individual.
As healthcare professionals, the observations were:
Generally, colleagues will try and do their best, but are sometimes uncertain what to do at a practical level
Being visibly/noisily LGBT/Ally does reduce instances of prejudice and less-than-professional behaviour
Less-than-professional behaviour does still occur and that needs to be addressed by the complaints processes - both patients and other healthcare professionals can use this process.
Care pathways are sometimes not looking holistically at an individual - this is a systemic issue - and healthcare practitioners need to be reminded to step aside from that if needed
Technology was explained:
NHS England has centralised standards for reporting which insist on a M/F binary for gender. Not having that information can cause a healthcare trust to be fined for missing mandatory targets
GPs and other providers will have their own systems which need to read from the main NHS England system
If you change your gender marker on your NHS records at the GP, a second record will be created (this is part of the requirements of the GRA 2004) and your GP will need to call NHS England and ask for the records to be joined together
NHS England centralised standards are harder to set and will require lobbying for changes to happen.
These combine to create challenges not just for the patients, but for any NHS professional trying to provide a supportive gender-inclusive environment.
* In “trans broken arm”, people are told they need to be seen by a gender clinic when the issue has nothing to do with their gender history or identity, e.g. a broken arm has nothing to do with being trans - none of the treatments given would vary based on gender; the choice of plaster colours offered is usually done in a non-gendered fashion, and everyone can choose from all the colours.
Disclaimer: The statements and opinions expressed in this article are those of the author(s) and do not necessarily reflect the positions of Thoughtworks.