LGBT health research – a Catch-22 situationPosted on 16-11-2012 by Sixth Story
Between three and eight percent of the UK population identify as lesbian, gay, bisexual or trans (LGBT), but how do we fare in the NHS? It is assumed that LGBT people attend NHS services but when you go to the GP or hospital, the NHS records gender, age, ethnicity and disability but not sexual orientation and gender identity. So no-one knows whether the NHS is currently providing an adequate service to the local LGBT population because they do not know whether LGBT are attending or not.
Until now, most published health research on gay and bisexual men has been around HIV, AIDS and sexually transmitted diseases and for transgender people has been on the transitioning process only. There has been practically no research published on lesbian health. At the same time the LGBT community has known that that there are a wide variety of other physical and mental health issues that are probably more important. So several pieces of LGBT health research in the West Midlands have been done over the last few years but none found its way into medical publications. As a result, it seems that healthcare commissioners have not been aware of the poor health of the LGBT population and no specialist services have been provided. LGBT people are expected to be attending standard NHS services, but no one knows whether they are. And so it goes on…..
So the question we asked ourselves was how to break this vicious circle?
We found all unpublished research on LGBT health done in the West Midlands between 2000 and 2008, compiled the results and compared them to the little UK LGBT research that has found its way into the medical literature and to data collected routinely in UK government health surveys. This review is now available on the University of Birmingham website. Only UK research was investigated because we had no idea how similar or different the UK LGBT population is to LGBT people abroad, particularly in the USA where more LGBT health research is published. There are different political environments and health systems which might well affect the health of LGBT populations in other countries differently to those in the UK.
We found nine West Midlands surveys on lesbians, gay men and bisexual people since 2002 that ranged in size between 15 and 1,532 people (total number surveyed was 6,816). No research on the transgender population was found. For UK published research we found only 27 LGBT health research papers in the medical press.
However, no LGBT results were found on many common diseases such as lung, digestive or autoimmune diseases. There was practically no information on heart disease and most forms of cancers – two of the biggest UK killers. There seems to be a high rate of breast cancer in lesbians, but we have no idea why this is so and it was not investigated in any of the published papers. Currently it is unclear whether more lesbians and bisexual women report having breast cancer because there is a higher incidence, or because lesbians might be surviving longer and so affecting the figures, or for some other reasons. We have no information on lung cancer yet much higher rates of smoking were found in lesbians, gay men and bisexual people. There were low access rates of cervical screening but no cervical cancer rates in lesbians and bisexual women. This was surprising as we also found in one of the published papers that lesbian and bisexual women were twice as likely to have had heterosexual sex under the age of 16 as heterosexual women so are potentially more at risk of cervical cancer.
There was much more research on mental health which showed worryingly higher rates of anxiety, depression and suicide attempts. It also showed really high rates of eating disorders and self-harming behaviour. Also a high proportion of LGB people accessed mental health counselling but many did not find it helpful. There were also high rates of illegal drug use, particularly cannabis and nitrates. The research on LGB experience of healthcare suggested numerous barriers including homophobia and heterosexism, misunderstandings and lack of knowledge, lack of appropriate protocols, poor confidentiality and the absence of LGBT-friendly resources.
Our research shows that there are so many gaps in knowledge around LGBT health that urgently need addressing. Where we do have information, the health of LGBT people seems to be worse than the general public. We do not know why.
The NHS constitution states that
“ the NHS provides a comprehensive service, available to all irrespective of gender, race, disability, age, religion or belief. It has a duty to each and every individual that it serves and must respect their human rights. At the same time, it has a wider social duty to promote equality through the services it provides and to pay particular attention to groups or sections of society where improvements in health and life expectancy are not keeping pace with the rest of the population.”
The Equality Act (Sexual Orientation) Regulations 2007 (2007 No. 1263) made discrimination against someone in the provision of goods and services on grounds of sexual orientation an unlawful act by any agency, including most public bodies and the NHS.
Therefore there is a duty on the NHS to provide a service appropriate to the health needs of the LGBT community. In order for the NHS to provide this, they need to tailor existing services appropriately. We have developed a list of things to be done, which we urge local NHS service commissioners and providers to consider carefully.
- Compliance of all NHS services with current legislation and The NHS Constitution
- Routine confidential sexual orientation and gender identity monitoring across all health services and use of this monitoring to improve services
- Routine confidential sexual orientation and gender identity data collection in all research, in a similar way to ethnicity, gender and age data collection currently undertaken
- Targeted research into specific areas highlighted
- LGB and transgender focused education of all healthcare workers
- LGBT-specific health service provision where required. Otherwise, explicitly LGBT-friendly mainstream service provision.
Dr Catherine Meads is a former trustee of Birmingham LGBT Community Trust.