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Terminally ill LGBT people delay seeking help because of health service fears

Terminally ill LGBT people delay seeking help because of health service fears

The Marie Curie charity says that many LGBT people with terminal illness are anxious about the care they will receive

UK-based terminal illness charity Marie Curie has published a policy report into the discrimination faced by lesbian, gay, bisexual and trans people with terminal illnesses.

It says that a lack of confidence in health services is causing many LGBT people to delay consulting a doctor when they think that something may be wrong with their health.

The report has been based on separate research conducted by University of Nottingham (The Last Outing) and King’s College London (ACCESSCare).

‘It seemed I had to come out every day – multiple times a day sometimes’

Researchers at both institutes spoke to a number of people affected by terminal illness. In one example, the doctor of one woman refused to see her without a chaperone because she was a lesbian.

The Nottingham report asked 237 LGBT people if they felt confident that health and social care services provided appropriate end-of-life care for LGBT people. Only 1 in five expressed confidence, while 74% said they were not confident.

Because of this lack of confidence, some delay in accessing services that might benefit them or help them manage their symptoms.

Many said they felt anxious about having to hide who they were when accessing end of life care, and one in four said that they had experienced discrimination from health and social care professionals at some point in their lifetime.

One man interviewed was named as Jonathan, aged 60. His partner was diagnosed with bowel cancer in 2005 and died in August 2015.

‘It seemed I had to come out every day – multiple times a day sometimes – because most of the world is a heteronormative environment.

‘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.’

‘No one should have to hide who they are at the end of their lives.’

The report says that the hospice and palliative care sector risks lagging behind the rest of the health and social care system when it comes to providing appropriate services for LGBT people, and urges greater training for staff around LGBT awareness.

Commenting on the report, entitled ‘Hiding who I am: Exposing the reality of end of life care for LGBT people’, Scott Sinclair, Head of Policy and Public Affairs for England, at Marie Curie said in a statement: ‘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.’

In a press release for the report, Hannah Kibirige, Head of Policy, at Stonewall said: ‘Lesbian, gay, bi and trans people in later life often experience specific forms of discrimination that go unnoticed by others around them.

‘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. It is a great step to see Marie Curie address this in their research and we hope that the findings go on to effect practical and positive change for lesbian, gay, bi and trans people.’

Opening Doors London, a project launched by Age UK Camden to provide services to London LGBT population over 50, also welcomed news of the report.

‘It is great that Marie Curie have undertaken this research,’ said Opening Doors manager Alice Wallace. ‘Hopefully it will encourage providers to be more aware of our anxieties and our needs, thereby ensuring that we are one step closer to LGBT people being able to be all that we are – in all aspects of our lives, including tackling major life crises with dignity and support.’