Lecture to discuss issues faced by the LGBT community in accessing end of life care

Issues faced by the LGBT community in accessing end of life care will be discussed in Wales next week, after a report by Marie Curie found nearly three quarters are not confident that their needs and circumstances will be treated sensitively. 

The report – Hiding who I am:  Exposing the reality of end of life care of LGBT people ‑ was released by the charity, which provides care and support through terminal illness, this summer, and a lecture following hard on its heels will take place on November 15 at the Pierhead building in Cardiff Bay to discuss the issues with experts in the field.

The report found that as a result of the lack of confidence, LGBT people often delay accessing the care they need and are more likely to experience unmanaged symptoms and pain at the end of their lives. 

The report looks at the barriers that prevent LGBT people from accessing end of life care and highlights their real-life experiences, drawing on interviews with LGBT people living with a terminal illness, and their partners.  

Dr Richard Harding, of King’s College London, will give the keynote speech at the Issues Faced by the LGBT Community in Accessing End of Life Care lecture in The Pierhead, Cardiff Bay. 

This will be followed by a panel discussion with Andrew White, director of Stonewall Cymru, Emma Walters, chair of the ABMU LGBT Staff+ Network and Jenny Anne-Bishop, a transgender activist. 

Carried out by the University of Nottingham (The Last Outing) and King’s College London (ACCESSCare), the report includes examples of indirect and direct discrimination, including a dying lady whose doctor refused to see her without a chaperone because she was a lesbian. 

Many people interviewed said they felt anxiety about having to hide who they are when accessing end of life care, with one in four experiencing discrimination from health and social care professionals in their lifetime. Others feared ‘outing’ themselves to care professionals, having grown up at a time when being gay was illegal. 

Dr Harding said: “There have been some really difficult experiences which have coloured people’s experiences of services. 

“IN ACCESScare, we interviewed a transgender woman with advanced disease, who was repeatedly called the wrong gender, while someone else was outed as Trans  by their doctor on a ward in front of all the other patients.

“In ACCESScare we also we interviewed a bereaved lesbian women was told the loss of their partner was not as bad for them, because it was just a friend.” 

During his keynote speech, Dr Harding will introduce the ACCESSCare project he is working on to help improve and avoid such experiences. 

“The work on ACCESS care was twofold,” he said. 

“To improve demand for better end of life care, we are working with community groups to develop three online resources to inform people on palliative and end-of-life care, what to expect, what to ask for and what their rights are. 

“To improve end of life care to LGBT people we are also developing teaching resources for clinicians working with palliative care.”

 He added that by talking to clinicians, it had become apparent that there was a fear of offending, and a struggle to find the right language and communication skills when treating and talking to the LGBT community. 

“What we want to do next is help the clinicians find the right language around sexual identity.” 

Talking about the panel discussion, Dr Harding said: “It will be interesting to hear about experiences in the Welsh context, and see what can be done at a community level and a practice level to ensure experiences get better.” 

Simon Jones, Head of Policy in Wales at Marie Curie, said: “No one should have to hide who they are at the end of their lives. If LGBT people are not confident about services, or have experienced discrimination from healthcare providers in the past, they may not feel able to be open about themselves and the people who are important to them – factors that are all crucial to dying well.

“Learning about the prejudice LGBT people experience as they are dying, when they are at their most vulnerable, is deeply saddening.”   

It is estimated that more than 40,000 LGBT people die each year in the UK. However, it is clear that a significant number miss out on the care and support they need. 

The Marie Curie in Wales lecture series, sponsored by Huw Irranca-Davies AM, aims to explore of issues surrounding end of life care such as those faced by the LGBT community, to give an audience in Wales the opportunity to hear from experts working outside Wales and provide a Welsh perspective on the issues addressed.

The next lecture in the series will take place on February 28, when Professor Allan Kellehear of the University of Bradford will present a lecture on his pioneering work to set up compassionate communities, communities whose whole approach to care and support for dying people is very different from that we are used to.

All lectures begin at 6.30pm, preceded by a drinks reception at 6pm. 

All the lectures are free and open for anyone interested to attend, but registration is essential.   

To register, please visit www.mariecurie.org.uk/WelshLectures