Understanding the needs of
lesbian, gay and bisexual
cancer patients and their
partners and carers
Dr Daniel Saunders
Consultant Oncologist
Nottingham University Hospitals NHS Trust
Overview
• Why this project?
• Surveys and data
– National/International
– NUH
• Training programme
• Historical perspective
• Why equality is not enough?
Why this project?
• New patient seen on 2 Jan 2013
– Gay man with localised prostate cancer
– Choices
– Info and support available
• Previous work with GLADD
• Stonewall leadership programme
Data – National/International
• Limited
• NHS does not routinely monitor
• Various ad hoc surveys – possible bias
– Stonewall
– YouGov
• National Cancer patient survey
Data – NUH LGBT Cancer Survey
• Pilot at Nottingham Pride
• Roll-out in cancer-related outpatient areas
• Wide publicity through local LGBT community
Data – Startlingly similar results
The Cancer Patient Experience Survey (2013) found differences
between LGB&T and heterosexual people relating to comms as well as
respect and dignity when receiving cancer treatment. More negative
responses were found from LGB&T people in regard to:
• Doctors and ward nurses never talked in front of patient as if they
were not there
• Never felt treated as a set of cancer symptoms rather than as a
whole person
• Always treated with respect and dignity by hospital staff
• Hospital staff always did everything they could to control their pain
• Patient given privacy when discussing condition and treatment, and
when examined or treated
• Doctors/nurses never deliberately did not tell patient things they
wanted to know
Suggestions for improvement
Research has also identified that lesbian, gay and bisexual
cancer patients have felt that their treatment could have
been improved, by considering their particular needs (to be
explored further). Topics include:
•Environments conducive to ‘coming out’ to health care
professionals
•Including partners and carers
•Access to relevant support
•Access to relevant info (assumed heterosexuality and info
not tailored to different behaviours etc.)
Nottingham data
• Very similar
• (Also matched by data from US and Australasia)
• Two things stand out:
– Comments and concerns about primary care
– LGBT patients attending consultations on their own
NUH LGBT Cancer Training
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Workshops covering over 200 staff
Interactive
Excellent feedback
Too early to know how much this has changed
practice
• Need to consider how we might extend this to
primary care
Lone attenders
• Strikingly different to heterosexual cancer
patients
• We need to understand why:
– Fear of homophobic attitude of staff?
– “Option” to conceal sexual orientation
– Patients not seeing relevance of sexual orientation
– Is the fear of homophobia based on recent or past
experiences of health care?
• Brief case study
A historical
perspective
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Professor David Harvey
Entered clinical training in 1957
Illegal to be gay until 1967
Doctors and medical students
faced being struck of by the
GMC
David achieved great things in
his career including becoming
Professor of Paediatrics and
Neonatal Medicine at the
Hammersmith
He was also the Royal
Paediatrician for many years
including looking after Princes
William and Harry
He was never afraid to be
honest about his sexual
orientation
Healthcare and “Caring”
•
1994 – DSM IV(R) removed
homosexuality as a classified
psychiatric disorder (Robert
Cabaj)
•
Electroaversion therapy still
available in West Mids in 2001
Macmillan Living with Cancer: Focus on
Equality project
• Completed end of November 2014
• Significant feedback from LGBT patients about
lack of understanding/empathy with their
personal situation
To empathise with patients you need to
move beyond equality
Some progress
• Thank you for helping us to make more progress