Lesbian, gay, bisexual and transgender (LGBT) people feel let down by end of life care services, according to a new report by the National Council for Palliative Care (NCPC) and the Consortium of Lesbian, Gay, Bisexual and Transgender Voluntary and Community Organisations.
NCPC, the lead charity of the Dying Matters Coalition, and the Consortium have put together a report, ‘Open to all? Meeting the needs of lesbian, gay, bisexual and transgender people nearing the end of life’. The report draws on a survey of more than 700 hospices, care homes and hospitals, as well as clinicians and service users. Endorsed by Stonewall and human rights campaigner Peter Tatchell, it provides a unique insight into perceptions of end of life care for the 22,000 LGBT people who die each year.
With more than 3.7 million lesbian, gay and bisexual people and at least 12,500 transgender people in Britain, the report expresses concerns that a significant proportion of the population are not accessing appropriate care when they are dying because of their sexuality or gender identity.
Many LGBT people do not feel that end of life care services are open to them and fear they will face discrimination and a lack of understanding from health and social care providers when they are dying.
The report highlights that older LGBT people may face particular problems, especially if they have not felt able to be open about their identity previously. The use of language was also identified as a key concern, with 70 per cent of LGBT people saying that end of life services did not use appropriate language. Although many end of life care providers were confident that there was no active discrimination against LGBT people, the report concludes that more active steps are needed to ensure indirect discrimination is avoided.
The report makes a number of key recommendations for both end of life care providers and LGBT organisations. These include more work to include LGBT people and their loved ones into end of life care services, making better links between care providers and the LBGT community, reviewing staff training, ensuring language is appropriate, using positive images of LGBT people in promotional material and ensuring a good complaints procedure is in place to deal with homophobic and transphobic behaviour from staff and from other service users.
LGBT report Human rights campaigner Peter Tatchell said:
“How we treat people who are dying is a test of our understanding, acceptance and compassion. Becoming seriously ill and knowing you are dying is distressing enough without the added stress of worrying that your carers may not accept you if they know you are lesbian, gay, bisexual or transgender.
Fear of homophobic prejudice, rejection and neglect is very real. Many terminally ill lesbian, gay, bisexual and transgender people feel doubly vulnerable – on account of their illnesses and on account of homophobia. We still have a long way to go to ensure treatment and support without prejudice.”
Sam Turner, Director of Public Engagement for the National Council for Palliative Care, said:
“Older LGBT people are more likely to have faced discrimination, have little if any contact with family and often live alone. When people have lived their lives having to hide who they are it can be an incredibly brave act to open up to those caring for you about your sexual or gender identity. Good end of life care should be about doing all we can to make people feel safe and secure to talk about their lives and the people who are important to them without worrying they may be discriminated against”
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The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
- Freephone 08000 21 44 66