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Majority of LGBT community fears discrimination when accessing end of life care

9 June 2016

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Nearly three quarters of lesbian, gay, bisexual and transgender (LGBT) people are not confident that healthcare services can provide them with sensitive end of life care.

The report by Marie Curie found that this lack of confidence meant LGBT people are more likely to delay accessing the care they need, experience unmanaged symptoms and pain at the end of their lives.

Hiding who I am: Exposing the reality of end of life care for LGBT people looks at barriers that prevent LGBT people from accessing end of the life care and highlights their real-life experiences.

Many people said they felt anxious about having to hide who they are when accessing palliative care.

The report said this likely stemmed from the fact that a quarter of the 237 people interviewed having experienced discrimination from health and social care professionals in their lifetime.

Meanwhile, others feared disclosing their sexual orientation to healthcare workers, having grown up during a time when being gay or lesbian was illegal.

The report is a literature review that draws on interviews conducted in studies at the University of Nottingham and King’s College London.

The report estimates that more than 40,000 LGBT people die each year in the UK.

However, it is suggested that a significant number miss out on the care and support they need, despite experiencing higher rates of life-threatening diseases than the national average.

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, particularly if in care or terminally ill, and so it’s vital that healthcare staff are aware of the experiences they face.”

Dr Catherine Millington-Sanders, Royal College of General Practitioners (RCGP) and Marie Curie clinical lead for end of life care, said: “With our patients now living longer than ever, and routinely presenting with multiple health issues, it is imperative that all our patients – LGBT patients included – receive high quality care as they approach the end of their lives, when people and their families are often at their most vulnerable.

“GPs are highly trained to treat the whole person, and LGBT patients should feel assured that they will receive high quality palliative care to suit their needs, when they need it.

Millington-Sanders said the lack of support for LGBT people as they die needs to be addressed “as a matter of urgency”.

She added: “To ensure we can continue to provide the best possible care, we also desperately need more investment and resources for end of life care services in the community.

“NHS England’s recent GP Forward View provides a lifeline for general practice, and we hope that some of the new funding that has been promised will be put towards improving the care provided to our patients nearing or at the end of their life.

“The College has worked with Marie Curie to develop a toolkit to support GPs and other healthcare professionals to deliver the best possible palliative and end of life care for patients.”