Bid to improve end of life care for LGBT people

Besi Besemar March 6, 2013

The University of Nottingham’s Last Outing project is looking to turn around the discovery that LGBT people have been identified as the most likely group to face discrimination when it comes to end of life care.

This finding from consultation for the English End of Life Care Strategy is why The Last Outing project, led by researchers at The University of Nottingham, wants to gather the experiences and concerns of LGBT people 60 and over regarding end of life care, which will be used to inform and improve policy affecting these groups in the future.

The first step of the project, which is funded by Marie Curie Cancer Care Research Programme and is the first of its kind in the UK, is to recruit participants for a survey regarding both positive and negative experiences of support and access to health and social care, as well as the concerns they have about doing so.

The project is particularly important as very little previous research has been done in this area. This is reflected by a lack of awareness that end of life care for LGBT people is even an issue.

Dr Kathryn Almack

Dr Kathryn Almack, who is leading the project, said:

“This is a chance for people who have felt invisible a lot of the time to have their voice heard. Our research is grounded in improving policy as well as feeding into academic papers.

“Very often we’ve found, talking to care providers, they would say ‘oh we don’t have any LGBT clients’. But statistics say 5-7 per cent of the population is LGBT. They must be using care services — that suggests to us they’re not disclosing sexual orientation or their needs are not being met.

“It’s been suggested to us that this generation — the 60s and over — will be the only generation to have these struggles. But if you look at the debates about gay marriage, bullying in schools — there’s still a lot of intolerance to address. And I think as you age you become potentially less assertive, confident and able to demand that services meet your needs and it’s an issue that needs to be addressed.”

At first, the project needs to recruit participants to fill out a survey regarding their experiences and concerns about accessing healthcare in the UK, as well as information about their support networks.

The researchers are looking for:

Lesbian, Gay, Bisexual or Trans people aged 60 or over
People under 60 who have LGBT partners aged 60 or over
Participants must be currently living in the UK

The project will run for two years (until August 2014). Following on from the survey, in-depth interviews with 60 of those surveyed will take place to examine the issues raised. There will then be a public engagement workshop to feedback findings and to collaboratively develop recommendations to contribute to outcomes of the study.

To complete the survey, click here:

For a hard copy email: