The University of Nottingham

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. This information will be used to inform and improve policy surrounding end of life care for these groups in the future.

The first step 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 the first of its kind in the UK and is funded by the Marie Curie Cancer Care Research Programme.

Improving policy regarding LGBT end of life care

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. The Sue Ryder Care Centre is very committed to ensuring that our research improves service delivery and goes out to policy makers and practitioners — and we’ve had a lot of success in that. So our research is grounded in improving policy as well as feeding into academic papers.”

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 Almack said: “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.”

LGBT people aged 60 and over

The project will run for two years (until August 2014) and the first port of call is 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 survey is now open: https://www.surveymonkey.com/s/thelastouting. Alternatively, contact thelastouting@nottingham.ac.uk for a hard copy.

Issues facing older LGBT people

Dr Almack has been working in this area for over five years and has encountered a range of different issues faced by older LGBT people when accessing healthcare.

She said: “There are different issues for people who have already disclosed sexual orientation fairly confidently and those who haven’t. But I think the overall message we got from earlier discussion groups was that organisations need to put a lot more work in so that LGBT people can know that there are services they can approach confidently and know that they’ll be treated with dignity and respect and their gender identity and sexual orientation will be understood.

“One woman told us she tended to put photographs of her and her same sex partner away when new carers came in because she wasn’t sure how they were going to respond. She didn’t feel safe initially and I think that’s a key thing that comes through: people not feeling safe about their needs as an LGBT person being understood.”

The future

Following on from the survey, the next stage of The Last Outing is in-depth interviews with 60 of the survey respondents 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.