ACCESSCare

This project, led by Dr Richard Harding, Kings College London, and funded by Marie Curie, 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 has shown that people who identify as LGBT, and their significant others, may not receive the care they need when facing a life-limiting illness, despite an increased risk of certain cancers. The ACCESSCare project was designed to address this inequity.

The project involved in-depth qualitative interviews with 40 people from across the UK who identify as LGBT and are 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.

Project timeframe

The ACCESSCare study commenced in May 2014 and recruitment closed in January 2016.

Project aims

The project aimed to:

  • develop and disseminate evidence-based mass media resources co-designed with the LGBT communities to increase the demand for appropriate end-of-life care
  • improve supply of appropriate end-of-life care through the development of training resources for integration within existing end-of-life care curricula for healthcare professionals.

Project findings and impact

Findings highlight 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 recent 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) .

ACCESSCare was the subject of a 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.

The Principal Investigator, Dr Richard Harding, also presented at the Welsh Assembly regarding the findings of the ACCESSCare study in November 2016, and at a parliamentary event in Westminster, in December 2016.

LGBT-resource

Read the Palliative & End-of-Life Care for LGBT People guide

Research team

Professor Katherine Johnson

Output

Peer Reviewed Journal Article

The main paper from ACCESSCare is freely available online from the website.

Resource for LGBT People

The findings from the literature reviews and the qualitative interviews have been used to develop a mass media resource for the LGBT communities. The resource is designed for people who identify as LGBT and are facing advanced illness, and those close to them (partner, friends or relatives). The booklet aims to help individuals to think about:

• why sexual orientation or gender identity may be important in relation to care needs, and preferences

• the care individuals are entitled to receive

• what to do if you think you have been discriminated against, because of your sexuality or gender identity

• where to go for more help and information.

The resource is freely available for download in print and online versions, both of which have links to further support and guidance.

Training and education

Since the completion of the study the ACCESSCare study team have presented the findings to over 1000 healthcare professionals from across the UK working in hospitals and hospices, health services researchers and policy makers.

Partners

The project was led by Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, King’s College London.

Other external partners include:

Dr Kathryn Almack, University of Nottingham

Matthew Hodson, GMFA - the Gay Men's Health Charity/HERO - Health Equality and Rights Organisation

Dr Louis Bailey, Hull Medical School

Dr Bee Wee, Oxford University