LGBT+ History Month 2025: Shaping the future of palliative care

This LGBT+ History Month, we interviewed Dr Katherine Bristowe, who has been at the forefront of the ACCESSCare projects at King’s College London since 2014. ACCESSCare aims to improve palliative care for LGBTQ+ people navigating serious illness and bereavement.

Championing inclusive care through research

In the UK, sexual orientation and gender reassignment have been protected characteristics since 2010, thanks to the Equality Act. But despite these legal protections, some LGBTQ+ people still experience fears about accessing healthcare, which may lead to delays in seeking medical help.

The ACCESSCare journey began with a systematic review in 2012, which highlighted significant health disparities for LGBT+ people, including higher incidences of some life-limiting conditions and a greater risk of certain cancers, as well as inequities in access to palliative care for LGBTQ+ people. Since then, it has expanded into several groundbreaking studies:

ACCESSCare-A

ACCESSCare-A explored the experiences of LGBTQ+ people in palliative care through a national qualitative study, identifying both challenges and opportunities for inclusive support.

Some participants felt supported and respected when they disclosed their LGBTQ+ identities to clinicians. Katherine reflects, “The people we spoke to particularly valued when clinicians acknowledged their identities, and when questions about sexual orientation or gender identity were made relevant to their care.”

However, others faced barriers such as a lack of recognition of their relationships and assumptions of heterosexuality. “Unfortunately, these experiences make people feel apprehensive about sharing their identities,” Katherine notes.

This study emphasised the pivotal role of sensitive communication in building trust during advanced illness and bereavement. From this work, 10 evidence-based recommendations for inclusive care were developed:

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A second systematic review focused on bereavement found a lack of research into bereavement outcomes and experiences for LGBTQ+ bereaved partners outside of the context of HIV and sexual health.

Seeking to address this gap, this novel population-based study examined bereavement experiences, revealing heightened psychological distress among those grieving same-gender partners. “Irrespective of sexual orientation, the loss of a person you intended to spend your life with causes an immense amount of grief,” says Dr Bristowe. “But when the depth of that loss is not acknowledged, it adds another layer of distress.”

The study also highlighted the complexities of relationship disclosure, Katherine states, “Some people choose to hide their relationship from their biological family, who may not find it acceptable. When providing bereavement support, it is important to recognise diverse relationships, and the role intersectionality can play in relationship disclosures.”

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Focusing on communication, this study led to the development of ‘ABC’ guidance for inclusive interactions:

• Approach all interactions using inclusive language.
• Be aware of self and surroundings.
• Create inclusive opportunities for sharing.

This work was also selected for an NIHR Alert which showcases studies with novel findings, and implications for practice. “We found that simple changes, like choosing gender-neutral terms such as ‘partner’ or ‘spouse’, and echoing the terms individuals use to describe themselves, their relationships and identities, can profoundly impact individuals’ experiences,” notes Katherine.

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This sister study in Zimbabwe provided vital insights into the experiences of LGBTQ+ people in hostile socio-political climates.

Participants described being blamed for their illnesses, rather than being treated with compassion, having to conceal their LGBTQ+ identity to access care, and experiencing care that was dictated by personal attitudes rather than professional ethics.

“This study underscored the importance of addressing global disparities in healthcare, and the importance of understanding the complex interplay between culture and LGBTQ+ identities” Dr Bristowe emphasises.

Shifting attitudes

Katherine has witnessed shifts in societal attitudes toward LGBTQ+ healthcare over the past decade: “Clinicians overwhelmingly want to deliver high-quality care that recognises the individual and is sensitive to their needs and identities. Often, our work involves drawing on their existing communication skills – they already manage extremely hard discussions about death and dying – and encouraging subtle, inclusive changes.”

Katherine and her team have trained thousands of clinicians across the UK, Europe and the US on inclusive care. Insights from their work have also been incorporated into King’s undergraduate and postgraduate programmes, including the MSc in Palliative Care.

“We have an increasingly international student community, so students experience vastly different legal and cultural situations for LGBTQ+ people in their own countries. Our training is therefore grounded in sharing evidence from our work whilst simultaneously creating a safe, supportive and respectful environment for all.”

Despite significant progress for LGBTQ+ rights in recent decades, there are still challenges to eliminating discrimination in healthcare settings. Katherine emphasises: “Recent regressive trends are emerging in some countries, and we are seeing anti-LGBTQ+ legislation, and increased hostility and violence. This highlights the necessity of our work; everyone deserves to access care and support without fear.”

Looking ahead

ACCESSCare is committed to addressing gaps in research and policy related to healthcare inclusivity. One current project involves developing a Patient Reported Experience Measure (PREM) for LGBT+ inclusive care.

Additionally, the team aims to examine how health policy recognises LGBTQ+ needs and addresses intersectional challenges faced by individuals from minoritised ethnic groups.

A recent analysis of Lancet Commission reports (which guide policymakers at international, national, and regional levels) identified LGBTQ+ people were rarely included in the Commissions, resulting in marginalisation of their health needs. Our next focus will be to turn our lens to NHS health policy.

“We’re proud of what we’ve achieved, but the work isn’t done,” Katherine continues. “Health policy is poised to shape and influence care delivery, so ensuring marginalised groups are included appropriately and respectfully is key.”

For more information visit the ACCESSCare webpages, where there are a number of freely available resources, and watch this short animation about ACCESSCare to hear more from our community members about why they have been involved in this work.

With thanks to the broader ACCESSCare team: Co-Principal Investigator Professor Richard Harding, Dr Debbie Braybrook, Dr Steve Marshall, and Professor Katherine Sleeman, King’s College London; Dr Liadh Timmins, Swansea University; and the ACCESSCare charity and community members.