‘They thought we were sisters’: Dying LGBT people forced back in the closet

The reality of healthcare for LGBT people is something rarely addressed. In their final years, assistance is needed but so often negative experiences come hand in hand with the need for help.

For Margaret, she says “being a lesbian made an already traumatic experience worse.”

67-year-old Margaret cared for her partner who suffered with dementia and cancer in her final years. Before her partner’s decline in health, Margaret could be private about her life but when her partner was place in a public ward she felt forced to repeatedly come out.

Many healthcare professionals considered her and her partner to be sisters, leading to Margaret feeling like she had to out herself when explaining her role of care. She struggled with the reality that LGBT people aren’t treated the same when it comes to health care.

Speaking as Marie Curie released a report into end-of-life care, she said: “In the hospital, they thought we were sisters. I was always aware of the way people might be reacting to the fact that we were lesbians and felt less comfortable in a public ward.

“Being lesbian made an already traumatic situation worse. I constantly felt in general like I always had to out myself to explain my role in her care.

“I didn’t have any choice who to tell that I was in a lesbian relationship. One of the interesting things was that in hospital –no one ever asked if we were legal partners. And as we had a civil partnership, I was legally her next of kin.

“Our life before this, you could be private about who you were, or you could choose who to tell; now the world and their mother knows you’re a lesbian.”

60-year-old Jonathan from Yorkshire looked after his partner when he was diagnosed with bowel cancer.

During an carer event at their local hospital, a support worker mistook Jonathan’s partner for his father. Jonathan felt like he had to come out multiple times a day “because most of the world is a heteronormative environment.”

After his partner passed away last year Jonathan sought out emotional help but was put off when an advocacy helpline receptionist was nonplussed when she realised Jonathan was gay.

He said: “On one occasion during a Carer’s Week event at the hospital we were approached by a support worker who assumed he was my father. He didn’t like that at all. He was a very private man and he would have preferred to have kept things to himself.

“I went to one of the bereavement groups at the hospice. It took a lot to get myself there, you can’t guarantee that people are not going to be discriminatory or dismissive. It took a lot to go. I felt I had to come out to the group though.

“I got in touch with an advocacy helpline, and the receptionist at the end of the phone was nonplussed when I said that I was gay. She assumed I was calling about my wife.

“I was trying to find any possible way of getting help and support but her reaction – well, it put me off in a way. It did make me want to just not pursue that particular avenue.”

Jonathan and Margaret are just two of the thousands of people who suffer discrimination in the healthcare system.

The Marie Curie study revealed that older LGBT people face difficulty in gaining access to vital health care.

Feeling forced to come out to carers is an added daunting pressure that many people in the community feel pushed into.

The survey polled 237 people and three-quarters of that sample were not confident that sensitive end-of-life care was being provided to them by heath and social care workers.

One in four said they had experienced discrimination from health and social care professionals at some point in their lifetime.

Writing for PinkNews, Stuart Andrew MP warned that many older people were effectively forced back in the closet at a traumatic time.

QI host and Marie Curie patron Sandi Toksvig said the report raised real issues for the sector.

She said: “For many of us who grew up in a time when being LGBT held a heavy stigma and could lead to exclusion, violence, and even arrest, ‘coming out’ to health and social care professionals is not an easy thing.

“Trans people in particular can find the prospect of finding a health and social care professional who respects their gender identity particularly daunting.

“For this reason, many older – and some younger – LGBT people delay accessing social care services, even when they have a terminal illness and are at their very sickest.

“Discrimination has no place in the NHS or social care services, but it is especially unwelcome when someone is at the end of life. This is a time when people should be able to be who they are, with the people that mean the most to them in their 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.”

She added: “This report and others show that LGBT people still worry about experiencing discrimination from health and social care staff and often do also experience it.

“Many health and social care professionals say that they treat everyone the same. This is well-intentioned. However, as this report shows, sometimes for everyone to be equal, differences need to be acknowledged and given space to be celebrated.

“There is still a lot of work that needs to be done to make this a reality for all LGBT people at the end of life.”

“Everybody, regardless of who they are or their personal circumstances, has a right to high-quality care.”

Scott Sinclair, head of public affairs at Marie Curie UK, said: “Learning about the prejudice LGBT people experience as they are dying, when they are at their most vulnerable, is deeply saddening.”

He added: “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.”

Hannah Kibirige, head of policy at Stonewall, said: “Often older LGBT people are extremely vulnerable, particular if in care or terminally ill, and so it’s vital that healthcare staff are aware of the experiences they face.

“We hope that the findings go on to effect practical and positive change for lesbian, gay, bi and trans people.”

If you are concerned about accessing appropriate palliative care for yourself, or a loved one, you can contact Marie Curie’s helpline for free, confidential information and support on 0800 090 2309 (Calls are free from landlines and mobiles)