LGBTQ+ people unfairly continue to encounter bias and discrimination daily, but what is not talked about enough is their unequal experience in healthcare settings and especially when facing cancer, says Stewart O’Callaghan. He heads up Live Through This, the UK’s only LGBTQ+ cancer charity.
LGBTQ+ people face a healthcare system that isn’t built for their needs. “We’re not adequately monitored in the data”, says O’Callaghan. “Nor is healthcare built with us in mind so that we can access it, especially if someone transitions.
“It’s the fact that the healthcare system in our country was built with very typical cisgender white men and women in mind.”
To combat this accessibility deficit, Live Through This offers a mixed-gender person-focused community to help LGBTQ+ cancer patients across the UK access peer support and share their experiences, both good and bad.
O’Callaghan uses the example of a cervical cancer screening to outline the exclusionary nature of healthcare for LGBTQ+ groups, “if you transition and change the gender on your records to male, you won’t get invited, and it becomes your responsibility to advocate for that. Even when they do access that service, letters, if they get any at all, are still often female coded.”
An exclusionary system
O’Callaghan has met many LGBTQ+ cancer patients through their work, and despite the diversity of experiences, the common thread is that they don’t feel understood. Whether it’s a non-binary cancer patient sent a long wig when they’ve never had long hair or someone with breast cancer whose surgeons purposefully left extra tissue assuming they’d want a breast reconstruction, “it’s those small things that make you feel like this person didn’t see me,” O’Callaghan explains.
Diagnosed with incurable chronic myeloid leukaemia, O’Callaghan understands how other LGBTQ+ cancer patients feel. When they sought support, they found “hundreds of leaflets and booklets that said nothing about me or anyone in my community” and online forums devoid of activity. Later, there was an incident when they wanted to join a cancer support art group but were told it was for women only and advised to join a men’s sports team instead.
While O’Callaghan agrees that we should be encouraging the upskilling of more LGBTQ+ talent to enter and diversify healthcare, being minorities, they believe the community can’t make the sector more inclusive on its own.
For O’Callaghan, it’s really about acknowledging the lack of “LGBT-specific medical education” in the curriculum, as when LGBTQ+ patients present, many medical staff don’t know how to react. After their diagnosis, O’Callaghan personally faced this from medical professionals, with their LGBTQ+ specific medical questions, such as whether they could take pre-exposure prophylaxis (PrEP) medicine which reduces the risk of getting HIV on their treatment, left unanswered. They were told to look online, “every time I had a question, I would get no answer.”
During the conversation, they also felt assumptions were made based on their sexuality, “I had one doctor assume I was HIV positive because I have blood cancer when I’m not.”
The knock-on effect for LGBTQ+ health
The aim of Live Through This is to change the hearts and minds of the public, says O’Callaghan, and to make them understand the potentially life-saving value of a “timely diagnosis”, especially for LGBTQ+ people who face barriers in accessing the care and answers they need.
They talk of a friend who went to an LGBT clinic for cervical screening, but because they are a trans man, they didn’t receive their results as they got stuck in the system. They ended up contacting O’Callaghan out of desperation after receiving no news for five months. “Luckily, through my work and influence, I was able to get those results released in an hour.”
In addition to providing interpersonal support that can help LGBTQ+ patients feel seen and heard, Live Through This is offering more inclusive cancer information, including “screening campaigns and awareness building to make sure people are well informed about their health, make the correct decisions, and monitor their health correctly.”
Empowering LGBTQ+ groups through resources
Live Through This also provides accessible learning resources for LGBTQ+ people beyond what O’Callaghan calls the “standard mode” of healthcare information.
Recently, a Live Through This community member helped O’Callaghan develop a gender-neutral chest checking guidance; “before we came along, they had to cherry-pick between men’s and women’s guidance and sort of figure it out. But now, they’ve given something back to the community and created a resource that didn’t exist before.” Such is the impact of these new resources that O’Callaghan has seen people from beyond the UK get in touch about them.
From their evident passion for LGBTQ+ cancer care, it could be easy to assume that O’Callaghan is a seasoned charity leader. However, they are still relatively new to the world and was a tattoo artist before they were inspired to help their community following their cancer diagnosis.
Recently, they received mentorship and funding support from pharmaceutical giant Roche through winning the Lead2030 Challenge, founded by One Young World, the global community for young leaders. This will see them get sector-specific guidance from the healthcare pioneer and long-term charity sector business that “really wants to see us grow in the way that we envisage it.”
O’Callaghan is confident that this support will allow them to continue to get “community buy-in” as “the innovation is still led by and for us despite receiving additional resources.” One project that the funding will go towards is creating a cancer screening awareness video with the help of trans creators and queer-led agencies.
The five-year goal for Live Through This is about awareness for O’Callaghan and is grounded in the hope that LGBTQ+ people will no longer have to suffer alone and unequipped for their cancer battle, “hopefully people will know who we are and will see us as resilient and reliable. So, they know that when they’re going through that rough time, they can come to our door.”
To find out more about Live Through This, click here.