LGBT

Open to All? Meeting the needs of lesbian, gay, bisexual and trans people nearing the end of life

 

NCPC work to remove inequalities in access to and experience of palliative and end of life care wherever they exist.

There are several organisations and projects which look at the needs of older gay, lesbian, bisexual and transgender (LGB&T) people generally, but little work has been done around access to and provision of services at the end of life in particular. With more than 3.7 million LGB people and at least 12,500 trans people in the UK, and approximately 22,200 LGB&T people dying every year, it is important that these communities’ needs are explored and any gaps in provision addressed.

In response to this, the NCPC and the Consortium of Lesbian, Gay, Bisexual and Transgendered Voluntary and Community Organisations decided to explore current practice and experience form both LGB&T people who have or will need to use palliative care services and also the services providing end of life care to this community. A short survey was produced and disseminated through our two organisations’ networks in Spring 2010, to which we received a total of 739 responses, representing both services providers and users.

The findings from the survey reveal that some LGB&T people do not feel that end of life care services are open to them and/or are concerned that they will face discrimination and a lack of understanding from health and social care providers when they are dying, resulting in them not disclosing their sexual or gender identity. Not being able to be open about who you are in the last few months of life can be hugely upsetting and may mean that LGB&T people are not surrounded by their loved ones during their last few months of life and at the time of their death. The use of language was identified as a key concern, with some LGB&T people reporting that end of life care services did not use appropriate language. Indeed, although many end of life care providers were confident that there was no active discrimination against LGB&T people, the report concludes that more action is needed to ensure that indirect discrimination, such as inappropriate language, is avoided.

The NHS Constitution clearly states that services must be offered to all people and that:

“You have the right not to be unlawfully discriminated against in the provision of NHS services including on grounds of gender, race, religion or belief, sexual orientation, disability (including learning disability or mental illness) or age” (NHS Constitution, 2010, DH, London)

Key themes:

  • 93% LGBT respondents thought more needed to be done to open up end of life care services to LGBT people
  • Singling out needs, not people - eliminating unconscious assumptions and behaviours which may make LGBT people feel less inclined to approach, use or feel comfortable using palliative care services
  • Practical changes can make all the difference – changing language & avoiding the heterosexual assumption
  • An absence of discrimination is not equality.
  • Not everyone is ‘out’ – particularly older people
  • Misunderstanding about ‘next of kin’
  • More work needed on trans issues at the end of life in particular

The report makes a number of key recommendations for both end of life care providers and LGB&T organisations. For more information or to order a copy of the full report Open to All? and the accompanying DVD, please click here. Publications and other matierials are free to NCPC subscribers. For more information on how to become a subsciber, click here.

Links:

Age UK Camden – www.openingdoorslondon.org.uk

Alzheimer’s Society – www.alzheimers.org.uk/gaycarers

Gires (Gender Identity Research and Education Society) - www.gires.org.uk

Spectrum London – www.spectrumlondon.org.uk

Stonewall - www.stonewall.org.uk/what_we_do/research_and_policy/health_and_healthcare/default.asp

Stonewall Housing – www.stonewallhousing.org

Gay Men and Lesbians affected by Multiple Sclerosis (GLAMS) – www.mssociety.org.uk