Do you have a life limiting illness?

Gary Hart September 22, 2015

ACCESSCare conduct new study to impove care for LGBT people with life-limiting illnesses.


ACCESSCare: what is the study about?

Many lesbian, gay, bisexual and/or trans people do not receive the support they need when facing a life-limiting illness.  A project is currently being carried by out researchers at the Cicely Saunders Institute, King’s College London, to find out why this may be, and what can be done to improve the care that LGBT people receive.

The ACCESSCare study, which is funded by Marie Curie and being carried out by in collaboration with GMFA, is currently interviewing LGBT people facing advanced illness to try to understand what their challenges are, and what can be done to improve their care.

They are interviewing people living with the illness themselves, their partner or chosen family, as well as those who have recently lost a partner, friend or relative to a life limiting illness.  The experiences people are sharing will be used to develop supportive materials for LGBT people facing a life limiting illness, and their partners, friends, and family, as well as training and education for health care professionals.

ACCESSCare: What has been found so far?

The research is progressing well, and currently the team have talked with over 30 lesbian, gay, bisexual and trans people who have shared their experiences in interviews.  Some participants have shared positive experiences, feeling comfortable to share their sexual identity or gender history with the health care team, and being treated with respect and understanding.  However, other participants have described more challenging experiences, healthcare professionals refusing to acknowledge a same-sex partner, making visitors feel unwelcome, or assuming heterosexuality, as described by James.

“There was complete lack of recognition. The consultant even, on the tenth or twentieth time of being told I was his partner still referred to me as his brother. There’s no official next of kin because it’s same sex, and there’s a lot less desire to be flexible.”

Similar experiences were also shared by trans participants, with health care professionals refusing to acknowledge their gender identity, and using the wrong pronoun (for example ‘he’ rather than ‘she’).

Many participants also shared feelings of isolation, as they became less well and therefore less able to socialise. Colin, who lives with a chronic lung condition, also described feelings of exclusion, and a lack of thought about his specific care needs.

“With the COPD [Chronic Obstructive Pulmonary Disease] I’ve felt very, very excluded… they don’t get patients like me…  So when I’ve had pulmonary rehab, it’s me and a class of eighty year old women… I can’t be the only 44-year-old out there with bad lungs.”

Participants have also shared challenges in bereavement, with experiences of isolation and a lack of sensitivity for their loss, as described by Rebecca who recently lost her partner to breast cancer.

“It feels that society doesn’t validate the loss of a civil partner quite as much as they would understand and validate the loss of a husband.  It’s more complicated, and a lot of people don’t have the imagination to understand that it’s the same kind of relationship.” 

Currently, the majority of those who have volunteered to share their experiences have been gay men and lesbian women.  However, researchers want to ensure that this research is also representative of the views of the bisexual and trans communities.

ACCESSCare: Want to share your experiences?

If you are facing the later stages of a life limiting illness (such as cancer, neurological conditions, heart, lung or liver disease), and identify as lesbian, bisexual, trans or gay, and would be willing to share your care experiences, get in touch with the King’s College London ACCESSCare research team (details below).

Alternatively, if you are the partner, friend or relative of someone who identifies as LGBT, and is approaching the later stages of a life-limiting illness, researchers would like to hear your experiences of the care they, and you, have received.

They are also looking to hear experiences from people who have recently lost an LGBT partner, friend or relative to a life-limiting illness.

ACCESScare: Want to find out more?

For more information about the project, and the research team, click here:

Or email the dedicated research team: 

Or telephone: 020 7848 5521.