Professor Richard Harding, Dr Katherine Bristowe and their research team have published a new guide aimed at helping LGBT people to understand what they should expect from their care providers, and where they can find further support.

There’s been very limited research conducted regarding the end of life care experiences of lesbian, gay, bisexual and/or trans (LGBT) people. Little is known about the challenges they face or their needs and the support they could benefit from.

That’s why, in 2014, Marie Curie funded researchers from the Cicely Saunders Institute at King’s College London to undertake ACCESSCare  ̶  a large study to explore and understand the care experiences of LBGT people living with a terminal illness in the UK, their informal carers (partners and significant others), as well as bereaved partners. 

What was the reality?

The study, published in 2017, found that some LGBT people described positive experiences, and felt well supported and respected, when accessing the care and support that they need.

However, many others who took part in this study had negative experiences of care in terms of their sexual orientation or gender identity.

Richard says: “Some participants in our study described having fears about revealing their sexual orientation, or gender history, and of being subjected to discrimination. Some also experienced a lack of recognition of the primary relationship they’re in, as well as insensitivity from health and social care professionals looking after them”.

Assumptions of heterosexuality were commonly experienced by lesbian, gay and bisexual participants, particularly when being asked about relationships.  This often resulted in a lack of recognition of the nature and depth of their relationship, making partners feel excluded.  Trans people described insensitivity in language use, including repeated use of the wrong pronoun (for example ‘he’ instead of ‘she’), despite being corrected, and a lack of consideration regarding their preferences for disclosure of their gender history. Previous experiences of negativity, including discrimination, made participants apprehensive about sharing their sexual orientation or gender history with health care professionals in the future.

The research team were surprised by how pervasive these negative experiences were, irrespective of geographical location or age of the participant. 

Addressing the issues

Earlier this year, Katherine and the ACCESSCare research team published a set of evidence-based recommendations  to help health and social care professionals deliver individualised, sensitive care and support to LGBT people and those close to them  ̶  throughout their illness and into bereavement.

To date, the team has delivered training to over 1,200 healthcare professionals across England, and presented their findings to the UK and Welsh Parliaments.  

Katherine says:  “When sharing the findings of ACCESSCare with health and social care professionals, the overwhelming response has been ‘we want to provide high quality care for all people we support – what can we do, as professionals, to provide better care for LGBT people and those close to them?’.  By following the recommendations we published we can help professionals to reduce sources of discrimination, but also, importantly, go that extra step with proactive demonstrations of inclusivity.”

Findings from the study also informed Marie Curie’s report, Hiding who I am, which took an in-depth look at the challenges facing LGBT people at the end of their lives and the support they needed. The report brought the findings of ACCESSCare to the attention of the public through the news media, but also helped draw the attention of politicians and policy makers, who have the potential to shape health care delivery and health services.

A new guide for LGBT people

To help LGBT people to get the right treatment, care and support, the ACCESSCare team has also developed a new resource with support from charity partners, GMFA.  The resource was developed from the evidence collected by the ACCESSCare study, and piloted with the extensive GMFA community networks, who responded very positively to the development of the resource, and refined in line with their recommendations. 

Richard says: “The resource was designed to help LGBT people to know what care they should expect when facing a life-limiting illness.  It also outlines why you may wish to share your sexual orientation or gender history with the professional providing your care, to make sure that the care and support you receive is shaped to meet your needs as an individual”

This guide covers a number of topics, including:

  • Why your sexual orientation or gender history matter when facing life-limiting illness
  • What care you might need when facing life-limiting illness, and what care you should expect
  • What to do if you feel you’ve been treated differently because of your sexual orientation gender history
  • What legal and financial issues you may need to think about
  • What help and support is available for you, and for partners and significant others

The resource also has links to key sources of support and guidance, and quotes from the interview participants throughout. 

For more information about the ACCESSCare study, email [email protected] or visit the study’s website: