Improving cancer care for LGBTQ+ patients in the UK
While gender and sexual identities continue to be decriminalised and more understood across the world, the health sector is taking a while to catch up. Dr Alison Berner, Medical Oncologist and Gender Identity Clinician, is leading a coalition of clinicians and charities committed to improving the care needs of LGBTQ+ patients with cancer.
Providing good health care is not a one-size-fits-all service. Ensuring good health outcomes requires health professionals to take a holistic approach: one which considers individual identity as central to good health. Poorer health outcomes impacting several minority groups are well known. In January, headlines poured over the shocking evidence revealing black women are four times more likely to die in childbirth than white women. However, the health outcomes and experiences of other minority groups remain largely undepreported
Around three per cent of adults in the UK identify as lesbian, gay or bisexual, and around 0.5 per cent of adults identify as transgender. When Dr Berner saw studies being conducted in the US on cancer care inequalities for LGBTQ+ patients, she decided the UK should follow suit.
“We know LGBTQ+ groups experience increased risk of cancer because of life-style related factors such as smoking, alcohol and substance misuse. Discrimination can also mean these communities are more likely to be of low socioeconomic status.” Dr Berner notes that the Trans community has increased cancer risks in sex-related cancers due gender affirming hormones or surgeries.
“If you don’t count us, we don’t count”: the importance of data collection
A study conducted in 2019 by Dr Berner and her colleagues found that while most clinicians feel comfortable treating LGBTQ+ patients, there are very low rates of routine enquiry into sexual orientation (five per cent), gender identity (three per cent) and preferred pronoun use (two per cent). 68 per cent of respondents argues that LGBTQ+ healthcare needs should be a mandatory part of postgraduate medical training.
“The NHS is a huge body and there is a lot of heterogeneity across it. LGBTQ+ awareness is organisation-dependent and haphazard. Bringing in an expected standard is what the NHS is working towards. I think there is an appetite to learn. Professionals want to know what they should do but aren’t confident in doing it.”
Part of the problem is that data on sexual orientation and gender identity is not routinely collected, as the 2019 study shows. Dr Berner says: “clinicians experience more difficulties with asking those questions than patients do being asked them. Patients usually want to be counted: ‘if you don’t count us we don’t count.’”
Creating an environment where patients feel open to disclose their identities will help to standardise accurate data. “There is a lot of fear of anticipated or experienced discrimination and stigma by minority groups.” Concerns around clinicians misgendering patients, or assuming the partners people bring with them are siblings or friends, are very real. “Needing to correct clinicians, and assumptions about lifestyle and what sexual behaviour people might engage in can prevent patients from disclosing their identities.”
Dr Berner notes that for trans people, disclosing identity can be crucially important. “For many trans patients, where in usual circumstances they would remain anonymous, disclosing identity to a healthcare professional may be essential for their healthcare.”
Creating a culture where LGBTQ+ patients are normalised is essential. “It starts from the beginning. Cancer screening posters and campaigns that show a myriad of identities is a good place to start. We need to make sure posters in waiting rooms include people of ethnic minorities and different sexual orientations, otherwise groups can feel the screening service they are attending – or in fact the whole health service – is not meant for them.”
For older LGBTQ+ patients, who remember a time when their identity was criminalised, the stigma can be even more pervasive. “There is still internalised homophobia and transphobia at times. It is the job of healthcare professionals to facilitate a safe space where all identities feel free to speak up.”
“These relationships must be built upon trust: in building that relationship, patients will impart more information and so other healthcare needs can be picked up more easily.” In many ways, Dr Berner argues this communication is an essential part of the medical need to be met.
“What we want is humility where clinicians know why these factors are important and have a level of empathy for the journey: the key enabler for this is education that involves patients from the community.”
What is next?
Thanks to the tireless efforts of Dr Berner and other leading cancer doctors, tangible progress is being made. In June, a coalition of clinicians and charities made an open commitment to improve education and awareness of the care needs of LGBTQ+ patients with cancer. The Joint Collegiate Council for Oncology – a collaborative advisory group on cancer issues headed by The Royal College of Radiologists (RCR) and the Royal College of Physicians (RCP) – and the Association of Cancer Physicians (ACP) has outlined the need for better understanding of the requirements of patients from sexual and gender minority groups.
As the lead author on this statement, Dr Berner has outlined ten commitments to improve the cancer care community’s understanding of LGBTQ+ patient needs. They range across education and training, data collection, research and valuing diversity. LGBTQ+ support groups endorse the statement include Stonewall, Switchboard and the LGBT Foundation, as well as Live Through This, the UK’s first and only charity specifically for LGBTQ people living with and beyond cancer.
There is now a monitoring standard for sexual orientation, and further work is being done by NHSE and community groups to develop this for gender identity and trans status. “But it is now the challenge to get health and research institutions and clinicians to get that data and it will be years before the numbers catch up” says Dr Berner. LGBT Foundation have recently produced a “Good practice guide to monitoring sexual orientation and trans status”.
Clearly, change is on the horizon. With serious stakeholders within healthcare finally taking note, health inequalities for LGBTQ+ groups can finally begin to be corrected.