ACCESSCare

Under several separate project grants, the ACCESSCare research was led by Dr Richard Harding, Kings College London, funded by Marie Curie, and aimed to improve demand for and supply of palliative care for people who identify as lesbian, gay, bisexual and/or trans (LGBT) and are in the later stages of a life-limiting illness.

Research had shown that people who identify as LGBT, and their significant others, may not have received the care they needed when facing a life-limiting illness, despite an increased risk of certain cancers.

The ACCESSCare projects were designed to address this inequity and led in turn to specific focuses as ACCESSCare II and ACCESS C.

ACCESSCare

The original ACCESSCare project involved in-depth qualitative interviews with 40 people from across the UK who identified as LGBT and were in the later stages of a life-limiting illness, their informal caregivers (partners, friends or relatives), as well as with bereaved caregivers of people who died from a progressive illness or condition.

ACCESSCare II

ACCESSCare II Focused on bereavement.  Bereavement impacts heavily on those closest to the deceased, with caregivers 20-50 per cent more at risk of mental health problems than non-caregivers. Bereaved partners are less likely to seek medical attention and have increased odds of worsening/new illness and mortality.

Lesbian, gay, and bisexual (LGB) people constitute minority groups with specific healthcare needs, including: greater all-cause mortality; higher rates of mental illness; more risk behaviours linked to discrimination; increased risk of life-limiting illnesses; increased isolation; and potentially increased palliative care needs. Partners are therefore more likely to be bereaved, and, with higher rates of mental illness, may have worse bereavement outcomes.

Despite protection under the UK Equality Act (2010), experiences of discrimination for LGB people are common in healthcare, resulting in reluctance to access healthcare and share sexual orientation with healthcare professionals. The need to end health disparities/discrimination for LGB people was highlighted in a recent Lancet Editorial.

Many LGB people also expect discrimination in end-of-life care and in bereavement. Our recent systematic review described additional barriers/stressors in bereavement, and an absence of quantitative studies of bereaved LGB partners since 1990s and beyond the context of HIV/AIDS. With poorer mental health outcomes, increased isolation and experiences of discrimination, we hypothesise that LGB bereaved partners have worse bereavement outcomes than heterosexual partners.

ACCESSCare C 
ACCESSCare C explored the experience of communication between health and social care professionals and LGBT+ (lesbian, gay, bisexual and/or trans) people with serious illness about sexual orientation, gender identity and gender history.

The project explored the experiences of three participant groups:
>LGBT+ people with serious illness
>Significant others of LGBT+ people with serious illness (partners, friends, biological and chosen family)
>Health and social care professionals.

Findings from ACCESSCare highlighted the additional barriers and stressors that LGBT people may experience when facing advanced illness and in bereavement. From the interviews we identified 10 simple recommendations for individual healthcare professionals and healthcare institutions to improve care for LGBT people.

Impact on Policy
Findings from the ACCESSCare study informed the Marie Curie publication "Hiding Who I Am": the reality of end-of-life care for LGBT people, and the Care Quality Commission Thematic Review (CQC) A different ending – addressing inequalities in end-of-life care.

ACCESSCare was the subject of a parliamentary question to which the ACCESSCare team and End-of-Life Care Lead for the Department of Health developed a joint response highlighting the importance of the findings from the ACCESSCare study.