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A study was recently completed called ACCESSCare, funded by Marie Curie, in collaboration with GMFA.

In the ACCESSCare study, lesbian, gay, bisexual and/or trans* (LGBT) people around the UK who are facing advanced illness were asked their experiences and preferences for palliative and end-of-life care. This has been hugely successful, and participants have shared some very difficult stories in relation to their sexual and/or gender identity and their care needs and experiences.

A resource for LGBT people is being currently piloted in collaboration with GMFA, and a large number of heath care professionals have now received additional training through the ACCESSCare study. In addition, the findings from our study were used to inform the recent ‘Hiding who I am’ document by Marie Curie about the needs  and experiences of LGBT people facing life limiting illness.

Having listened to patients and health professionals,  a new proposal to better understand how clinicians should communicate and work with LGBT people with serious illness is now being developed. There will be a specific investigation into how to ask patients about these issues, what language to use, and how to work in a patient-centred way with LGBT people and their significant others.

ACCESSCare is keen to ensure that we have strong community involvement in the co-design of this proposal, and will have named individuals as Steering Group members as well as Co-Applicants on this project. They would very much like to hear from you about your potential participation, and would be very happy to talk this through further in terms of what that would involve and timescales for this proposal. For further information please contact Richard or Katherine at: [email protected] / [email protected]

Give us your feedback on the ACCESSCare End of Life Care booklet >> Click here