Marie Curie LGBT report
10th June 2016
Researchers based at the Cicely Saunders Institute and the University of Nottingham, funded by the charity Marie Curie, have produced a report entitled ‘Hiding Who I Am‘ highlighting that many dying gay people face “significant barriers” to accessing end-of-life care.
Some lesbian, gay, bisexual and transgender (LGBT) people fear they will be discriminated against by healthcare workers, according to the report. The charity said as a result, many people delay accessing the care they need and are more likely to experience unmanaged symptoms and pain at the end of their lives.
Writing the foreword for the report, broadcaster Sandi Toksvig said: “Discrimination has no place in the NHS or social care services, but it is especially unwelcome when someone is at the end of life.
“Prejudice and discrimination at the end of life have a devastating impact on LGBT people. At its very worst, it means someone will spend their last days feeling isolated, alone, angry and unwelcome. For those who lose a loved one, not being able to say goodbye in a respectful and peaceful environment can make grief and bereavement that much harder to bear.”
The AccessCare project, funded by the charity Marie Curie, is led by Dr Richard Harding, Lead for the ACCESSCare study and Reader at the Cicely Saunders Institute and Dr Katherine Bristowe, Research Associate, Cicely Saunders Institute. The project aims to develop mass media resources with the LGB and/or T communities to increase the demand for appropriate end-of-life care; and improve the supply of appropriate end-of-life care through the development of training resources for health care professionals.
Dr Richard Harding said: “The evidence from the ACCESScare study has highlighted the importance of undertaking research to identify, and reduce, social exclusion in end of life care. The powerful descriptions of poor care shared with us by LGB and/or T people with a range of diagnoses across the UK prove that poor practice persists. The study provides important evidence to health care professionals who may believe that such discrimination and suboptimal care do not persist in the UK’s health care services for people with advanced disease. The ACCESScare data is now informing evidence-based resources for LGB and/or T communities to enable them to demand better care. It is also being used in clinical training programmes to assist providers of palliative and end of life care to be more confident in communicating and working with LGB and/or T patients and their loved ones. This important research theme must now continue to ensure that change in practice is being achieved and that good care and support continue into bereavement”
You can view Dr Richard Harding talking about the ACCESSCare project: http://www.youtube.com/watch?v=QHEeSag2y40