Written submission from Professor Catherine Meads (HSC0014)

 

Executive summary

 

 

1. Introduction

1.1 There is much that we do not know about LGBT health inequalities, but research is gradually increasing and more information is becoming available. UK research gives more useful information than that from outside the UK, but UK research is not available in many topic areas. Non-UK research tends to be mainly from USA, also Canada, Australia and Europe. There are generalisability issues with non-UK research, particularly around experience of health and social care because these services differ so much in the different countries, as do attitudes to LGBT populations. I have indicated in the text where evidence is from the UK*. The terminology I have used in this submission around LGBT populations is explained in Appendix 2.

 

1.2 This submission is based on my recent best evidence review for Public Health England (PHE) on health and experience of healthcare in sexual minority women (see Varney et al 2018), several of my recent publications, and other research that I am familiar with. No one submission can incorporate all possible evidence, so I have tried to include most UK-relevant, recent and best quality evidence.


2. Understanding and addressing LGBT health inequalities:

2.1 In what areas of health do LGBT people experience worse outcomes than the general population?

 

2.1.1. I categorise health here as physical, mental and sexual health.

2.1.2. Physical health inequalities

2.1.3 The leading causes of deaths for women in the UK are dementia and Alzheimer’s, heart disease, cerebrovascular diseases, influenza and pneumonia, lung cancer, breast cancer, bowel cancer, urinary diseases and heart failure (ONS 2016*). We know very little about the rates of these common conditions in sexual minority women. Most of the evidence we have on physical health inequalities are as follows:

  1. More bisexual men and women, lesbians and gay men reporting fair or poor general health status compared to heterosexual men and women (Elliott et al 2014*). Bisexuals tend to report worse health and more disabilities than gay/lesbian people, with heterosexuals reporting the best health and fewest disabilities ((Booker et al 2017*)
  2. Higher cardiovascular disease mortality in same-sex cohabiting women compared to opposite sex cohabiting women. No difference in hypertension rates and no difference in cardiovascular disease prevalence rates, yet higher calculated cardiovascular disease risk in sexual minority women (Meads et al 2018) and in sexual minority men (Caceres et al 2017).
  3. Higher rates of asthma in lesbians and bisexual women. (Meads et al 2018).
  4. No difference in diabetes mellitus prevalence rates in lesbians and bisexual women. (Meads et al 2018).
  5. Higher mortality rate from breast cancer in women with female partners to women with male partners (Cochran and Mays 2012) but no difference in breast cancer rates in lesbians and bisexual women (Meads et al 2013).
  6. A higher rate of cancer diagnosis in the last 5 years in gay and bisexual male GP patients compared to heterosexual men, but no difference in cancer diagnosis rates in lesbian and bisexual women compared to heterosexual women (Saunders et al 2017*)
  7. Gay or bisexual men are over-represented among men with Kaposi’s sarcoma, anal and penile cancer. (Saunders et al 2017*)
  8. Lesbian or bisexual women were over-represented among women with oropharyngeal cancer (Saunders et al 2017*). Bisexual women may have a higher rate of cervical cancer, and lesbians a lower rate of uterine cancer compared to heterosexual women (Robinson et al 2016), but UK evidence is inconclusive (Saunders et al 2017*)

 

2.1.4. This is not an exhaustive list and new findings are published regularly. It does, however, show that there are differences in physical health, and mostly worse physical health for sexual minority people compared to heterosexuals.


2.1.5. Mental health inequalities

2.1.6. The best recent evidence on UK mental health rates is from Semlyen et al (2016*). This showed that adults who identified as lesbian/gay had higher prevalence of common mental disorders when compared to heterosexuals. This was highest in people aged over 55 and in bisexual men. A previous systematic review by people from the same team (King et al 2008) found higher rates of suicide attempts, depression and anxiety rates in sexual minority men and women compared to heterosexuals. There are also higher rates of self-harm (non-suicidal self-injury) (Batejan et al 2014). There are increased rates of eating disorders in LGBT people, particularly gay and bisexual men, and trans students (Castellini et al 2016, Meads et al 2009*).

 

2.1.7. Average personal well-being tends to be worse for bisexual people, slightly better for gay or lesbian people and best in heterosexual people. This applies to all four measures of well-being (life satisfaction, life being worthwhile, feeling happy and feeling anxious) but the difference is particularly large for anxiety (ONS 2017*, Booker et al 2017*).

2.1.8. Sexual health inequalities

2.1.9. As I have not worked in HIV/AIDS or sexual health in men I will not address this.

 

2.1.10. For sexual minority women, the best evidence review I completed for PHE found no recent government-collected statistics of the prevalence of different sexually transmitted infections in UK sexual minority women. I understand that PHE are aware of this lack of data and have started to collect it, but may take several years to collect sufficient information.

 

2.1.11. The best evidence I found was a large survey of LGBT young people aged 16-25 (Baker et al 2014*) that evaluated a variety of aspects associated with health using a convenience sample (n=7,126), including a relatively small heterosexual comparison group. The proportions self-reporting ever having had an STI were 14% lesbians, 11% bisexual women and 4% heterosexual women. The listed STIs were chlamydia, hepatitis B, herpes, gonorrhoea, syphilis and anal or genital warts.

 

2.1.12. Another survey exploring sexual health was conducted with 54 lesbians and bisexual women from the North of England (Formby 2011*). The main findings were that there was considerable invisibility of sexual minority women and a lack of NHS information and advice.

 

2.1.13. There is currently a large survey of SMW being undertaken in the Manchester area by LGBT Foundation, which has had around 1500 responses so far. (I am an academic advisor to this project). The results should be available in early 2019.


2.2 What is known about why this is, and what interventions are effective in improving outcomes? What are the gaps in evidence?

2.2.1. Physical health

2.2.2. It is currently unclear as to why there are physical health differences. For some of these, difference in health behaviours may contribute (see below). UK sexual minority women tend to have a higher body mass index than heterosexual women (personal communication, Dr J Semlyen, August 2018).

 

2.2.3. Regarding cardiovascular disease, it is difficult to explain why there is a higher mortality rate, no difference in cardiovascular disease prevalence rates, yet higher calculated cardiovascular disease risk. The higher mortality might be partly explained by fewer lesbians with health insurance (USA evidence), and delays in seeking medical treatment. Further work is required in this area. Similarly we currently have no explanation as to why there are apparently higher rates of asthma, yet this is consistent across multiple large studies.

 

2.2.4. The breast cancer results above come mainly from USA. The higher mortality rates may partly be explained by fewer lesbians with health insurance (USA), and delays in seeking medical treatment. The higher rates of cancer in gay and bisexual men is likely due to higher HIV/AIDS infection rates.

 

2.2.5. A recent systematic review of lesbian and bisexual women’s likelihood of becoming pregnant (Hodson et al 2016) found that adult lesbians and bisexual women were less likely to have ever been pregnant than heterosexual women. However adolescent lesbians and, particularly, bisexual girls were more likely to have been pregnant than heterosexual girls. This was a surprising finding and the evidence is from USA. There is no equivalent data from the UK. If more young sexual minority girls are having early heterosexual sex, more will be at risk of being infected with human papilloma virus (HPV). This may contribute to higher rates of oro-pharyngeal cancer (Saunders et al 2017*) and cervical cancer (Robinson et al 2017). Up to around 10 years ago, lesbians were being advised not to have cervical smears as it was thought at the time that there was a lower risk of cervical cancer, and some were even turned away (Hunt et al 2008*). We now have evidence that this policy was incorrect.

 

2.2.6. Health behaviour inequalities

In general, people from the UK LGBT community tend to have worse health behaviours.

 

2.2.7. The UK Integrated Household Survey (2014*) reported current smoking by sexual orientation (325,000 respondents). The proportion who smoked cigarettes was higher among adults who identified themselves as gay, lesbian or bisexual (25.3%) compared with those who identified themselves as heterosexual/straight (18.4%). This difference was partly explained by the younger age profile of the lesbian, gay and bisexual population and the higher proportion of younger smokers. The Integrated Household Survey (2013*) investigated current smoking by gender and sexual orientation (n=35,941). The rates of smoking in lesbians was 30.7% (95%Confidence Intervals 23.3% to 38.2%) and in bisexual women was 21.9% (95%CI 12.9% to 30.9%) compared to 17.3% (95%CI 16.6% to 17.9%) in heterosexual women.

 

2.2.8. Other UK research has also found higher rates of smoking in younger men and women (Hagger-Johnson et al 2013*), but this may be confounded by sociodemographic factors (Shahab et al 2017*).

 

2.2.9. UK sexual minority women tend to have higher hazardous alcohol use than heterosexual women (Shahab et al 2017*). I found no information on diet in sexual minority compared to heterosexual women.

 

2.2.10. Bisexual, lesbian and gay respondents to the Scottish National Health Survey have similar levels of sport and physical activity to heterosexuals (Whybrow 2012*). More older LGB people than heterosexuals take exercise (Guasp 2011*). There is very little other comparative information on exercise and physical activity in LGB&T people (Mansfield et al 2014*).

2.2.11. Mental health

2.2.12. The roots of mental health difficulties can lie in childhood experiences. We know little about sexual minority young people but one study has shown a link between alcohol use and depressed mood (Pesola et al 2014*). There is also an unpublished survey of schoolchildren in Cambridgeshire (Balding 2014*) that reported on a variety of topics comparing LGB schoolchildren to all schoolchildren in the area. The children were in year 10 (aged 14-15) and included 92 sexual minority girls (mostly bisexual), 1,916 Cambridgeshire girls 60 sexual minority boys and 2,002 Cambridgeshire boys. The results showed that LGBT young people tended to worry more, particularly about: thinking they are LGBT, relationships between parents/carers in the family, being bullied, relationships with boyfriends/girlfriends, the way they look and relationships with friends. Fewer would consult their family around issues of personal safety. Using a self-esteem measure 61% of LGBT boys and 69% of LGBT girls had medium to low self-esteem compared to 17% of Cambridgeshire boys and 37% of Cambridgeshire girls. 23% of LGBT children felt no satisfaction with their life compared to 6% of Cambridgeshire children, and 19% LGBT children felt there was no adult they could trust compared to 7% of Cambridgeshire children. 13% of LGBT children felt very afraid of going to school because of bullying compared to 2% of Cambridgeshire children, and 42% had been bullied at or near school in the last 12 months, compared to 15% of Cambridgeshire children. There were higher rates of being teased, ignored, called nasty names, pushed or hit for no reason, being threatened, having belongings taken, and sent nasty or threatening messages.

 

2.2.13. Given these results, it seems likely that many LGBT young people experience a difficult childhood which could then lead to difficulties with relationships and trust, poor health behaviours and more anxiety and other mental health difficulties.

2.2.14. Interventions

2.2.15. I and a colleague are conducting a systematic review of the evidence around health improvement interventions evaluated in LGBT people and their relative effectiveness compared to heterosexual people (see PROSPERO protocol CRD42018106512). We are excluding sexual health, HIV/AIDS and gender identity transitioning interventions. So far we have found very few interventions from the UK:

  1. A comparison of Improving Access to Psychological Therapies (IAPT) treatment outcomes (Rimes et al 2018*). It found that, compared with heterosexual women, lesbian and bisexual women showed smaller reductions in depression and impairment, controlling for age, ethnicity, employment, baseline symptoms, number of sessions and intervention type. Bisexual women experienced significantly smaller reductions in anxiety than heterosexual women and were less likely to have recovered. There were no significant differences in treatment outcomes between gay, bisexual and heterosexual men.
  2. A case series of targeted smoking cessation in 98 gay men (Harding et al 2004*). This found a 76% quit rate at 7 weeks but there was no heterosexual comparator.
  3. An audit of Hepatitis A vaccination in men who have sex with men (O’Riordan et al 2007*). They concluded that a universal vaccination policy was less expensive than a screening then vaccination policy if the prevalence of hepatitis A was less than 35%, and more expensive if the prevalence was 67%.

 

2.2.16. It would be possible to analyse the results of many randomised controlled trials of a wide range of interventions, including complex interventions, if the investigators collected sexual orientation (using the ONS validated sexual orientation question) and gender identity in the same way that they collect data on gender and ethnicity, then analyse results by subgroup. We have not yet found any trials reporting this.

 

2.2.17. There is a project in Greater Manchester by GMCA and NHS, started in 2018, targeting smoking in the LGBT community (called Making Smoking History), which is orientated around engaging the LGBT community to co-create effective quitting activities. This is very welcome.

 

3. Meeting the needs of LGBT people in health and social care:

3.1 What evidence shows that LGBT people have particular needs as health and social care users? What are these needs?

 

3.1.1. LGBT people need to be able to use health and care services without fear of prejudice. I and colleagues are currently completing a systematic review of sexual minority women’s experiences of UK health and care. We have included 26 UK studies, of which nine have numerical results. Where comparative results were available, they tended to show worse experience for sexual minority women. For example Elliott et al (2014*) published an evaluation of the English General Practice Patient Survey by gender and sexual orientation. The weighted percentages reporting no trust or confidence in the doctor were 5.3% in lesbians and 5.3% in bisexual women, compared to 3.9% in heterosexual women. For men the equivalent percentages were 5.6% and 4.3% compared to 3.6%. These differences were statistically significant and probably also clinically relevant. They may explain, in part, the findings above of higher CVD and breast cancer mortality rates, but no apparent difference in prevalence of the conditions.

 

3.1.2. The main themes from the qualitative research in the systematic review were: having an unhelpful health and social care environment, assumed heterosexuality and heteronormativity, having to make decisions about being ‘out’ or not, negative responses to being ‘out’, ignorance among health and care staff regarding LGBT issues and its impact on sexual minority women, and difficulties around challenging and complaining.  Staff attitudes seem to be hampering some LGBT people from using health and social care services. Where professionals are heard gasping (during a cervical smear), physically recoiling (during a cervical smear), or giving a lecture (during an ultrasound) of the ‘necessity’ for a child to have both a mother and a father, it is very difficult for sexual minority women to access services.

 

3.2 How effectively do health and social care providers take into account the needs of LGBT people? How should provision of specialist services be balanced with a mainstreaming approach?

 

3.2.1. The systematic review mentioned above found numerous instances where health and social care providers had failed to take LGBT people’s needs into account. Examples include medical staff turning away lesbians from cervical screening services, a situation where midwives seemed unable to differentiate between the two women in a couple, treating the one who was pregnant as if she had previously given birth when in fact it was her partner who had done so, and where an older disabled lesbian woman was given leaflets by religious care workers suggesting that she could be ‘saved’.

 

3.2.2. A recently published review of the treatment of sexual minority women in UK fertility clinics (Priddle 2015*) found that lesbians were being encouraged to undergo in in-vitro fertilisation (IVF) whereas intra-uterine insemination is more appropriate for fertile women and many lesbians are fertile. IVF is not necessary and can cause medication side-effects, higher rates of ectopic pregnancy and multiple births (with increased risk of premature birth, low birth weight, and life-threatening complications such as neonatal respiratory distress syndrome (NRDS) or long-term disabilities, such as cerebral palsy). Lesbians were continuing to pay for IVF privately whereas recent NICE guidelines recommend funding for intra-uterine insemination for fertile lesbian couples. Priddle (2015*) also found that lesbians’ experiences of fertility clinics were not good. There was perceived or actual heterosexism and heteronormativity by clinic staff and some sub-fertile lesbians were being refused NHS treatment in spite of being eligible. Legal challenges to non-treatment decisions by two lesbians resulted in reversal of the decisions in both cases. Some lesbians tried fertility clinics but the unsuccessful, expensive, discriminatory or dehumanising experiences made them switch to self-insemination using a known donor, with risks of infection and sometimes unwanted interference from the donor.

 

3.2.3. There seem to be mixed views in the LGBT community regarding specialist and generalist services. Most people would agree, however, that health and care staff should be much more skilled in providing their services to LGBT people appropriately.

 

3.3 What should be done to improve, what examples of best practice are there, and what is the evidence about what works?

3.3.1. Please see my response to section 4.3 below.

3.4 What particular challenges do older LGBT people face in accessing social care, housing and end-of-life care?

 

3.4.1. There have been several studies published on the experiences and worries of older people in accessing these services. This is an example:

A survey of 50 care home managers and staff in the Calderdale region (Walker et al 2013*) elicited responses from 6 managers and 15 staff members and showed that, in spite of staff feeling that they give person-centred care to all of their patients or clients including sexual minority people, there was no overt demonstration of this in the care home, in publicity leaflets or by having a nominated member of staff for diversity issues. But an example was given of an elderly lesbian with dementia having been split from her partner, as two separate families had decided that the couple should live in two separate nursing homes. Staff members were aware that she was distressed as she kept calling out a specific name, but were not aware that this was for her partner and did not try to find out who she was calling for. Her lesbian identity and all that it meant had been dismissed.

 

3.5 What evidence is there that LGBT people with other protected characteristics (older people, people from BAME communities, disabled people) face particular problems with discrimination in or access to health services, and what actions could be taken to improve health and social care experiences and outcomes for these different groups?

 

3.5.1. All minorities experience varying forms of discrimination, persecution, and negativity.  There is less evidence available where LGB&T people have other protected characteristics (Varney 2014?). An example of evidence can be found here: https://publichealthmatters.blog.gov.uk/2014/12/19/the-health-and-wellbeing-of-bme-msm-minorities-within-minorities/

 

3.5.2. The actions taken to improve services for LGBT people should also address other protected characteristics and intersectionality issues.

 

4. Discrimination in health and social care:

4.1 What does the evidence show about levels of discrimination against LGBT people when they access health and social care? What types of discrimination are faced and in what areas of health or social care?

 

4.1.1. The Stonewall charity have produced several reports in this area including the ‘Unhealthy Attitudes’ survey (Somerville 2015*). They found that 25% of patient- or client-facing staff had heard colleagues make negative remarks about sexual orientation and 20% make negative remarks about gender identity. Numerous quotes were provided, such as “I was told I should be hanging from a tree by a nurse from Nigeria with strong religious beliefs” and “A transgender nurse [was] often referred to as ‘he-she-it’ by other staff and service users”.

 

4.1.2. It is very likely that the Stonewall submission will give much more detail on types of discrimination and areas of health and social care involved, so I will not expand here.


4.2 What are the causes of that discrimination?

 

4.2.1. Causes of overt discrimination include ignorance, prejudice and misinformation.

 

4.3 What actions have been taken by health and social care providers to reduce levels of discrimination? How effective have these actions been?

 

4.3.1. I and some colleagues are conducting a systematic review of training of UK health and social care staff on LGBT issues, including any teaching materials that have been available (Bates et al 2018*). To date we have found fourteen different sets, the earliest being from 2006 entitled “Core training standards for sexual orientation, making national health services inclusive for LGB people” (Cree et al 2006*). The training materials vary in length from 8 pages (Opening Doors London 2011*) to 142 pages (Pugh et al 2010*).

 

4.3.2. The report by Stonewall entitled ‘Unhealthy Attitudes’ (Somerville 2015*) showed that only 50% of health and care staff reported that they had received equality and diversity training in the previous 12 months, and the majority of this did not address LGBT issues. Therefore, in spite of training materials being available, they are not being used, or if they are being used, they are not sufficient. Given the findings from the ‘Unhealthy Attitudes’ report, more than provision of information may be needed.

 

4.3.3. In our systematic review of training of UK health and social care staff on LGBT issues, we also found three action research projects evaluating teaching on LGBT issues to UK-based health and/or social care staff, one based in six residential care homes for older people (Hafford-Letchfield et al 2017*, Willis et al 2018*), one to cancer nurses and other health professionals (Fish 2016*) and one with a local branch of a cervical screening programme in NHS Bradford and Airedale (Carter et al 2012*). (There were no evaluations found for any of the fourteen sets of teaching materials described above.)

 

4.3.4. All three action-research projects were successfully completed and reported important gains in understanding and attitudes in participants.  For example, the residential care home project found at the 7-month post-intervention interviews that there were small but important shifts in attitudes and gains in awareness. This then translated into more appropriate behaviour at key points. For the breast cancer project, it resulted in increased staff understanding of the distinctive needs of LGBT cancer service users, influencing of their attitudes and assumptions, the provision of tailored information and support from the two cancer charities involved, and wider dissemination through organisation staff members. For the cervical smear project open discussion of issues in training sessions led to successful countering of inaccurate views that might have hindered progress in the project.

 

4.3.5. Therefore, the evidence suggests that the action research model may be more effective in improving attitudes and behaviour of health and care staff. In order to achieve this, sufficient activists knowledgeable in LGBT issues would be needed. There are large numbers of LGBT people who work in health and social care. Volunteers from this group could be trained in the skills needed, in a similar way to that used in the project by Professor Almack and her team (Hafford-Letchfield et al 2017*, Willis et al 2018*).

 

4.3.6. There was an initiative called the No Outsiders project* which developed strategies and resources to address LGBT equality in primary education settings (see https://www.tandfonline.com/doi/abs/10.1080/19361653.2011.541349). This project was very successful in addressing not just LGBT issues but for other minority groups too, and some resources are still available. Although this is not in health and care, the wider issues around young LGBT people growing up in environments that impact on their mental health need to be addressed early.

 

5. The National Adviser for LGBT healthcare:

5.1 How should the new National Adviser for improving LGBT healthcare go about their work? What needs to happen for this role to be effective?

 

5.1.1. The new National Advisor is a very welcome development. They will need to have the skills and resources to be able to implement the priorities set by the government. Agencies would need to be receptive and have willingness and commitment to support the advisor.

 

5.2 What should the National Adviser’s priorities be, and what would you like them to achieve?

 

5.2.1. My priorities would be:

    1. Have the Office for National Statistics validate a questionnaire and interview schedule of gender identity, in a similar way to their validated questionnaire and interview schedule of sexual orientation identity. (see http://webarchive.nationalarchives.gov.uk/20160106185802/http://www.ons.gov.uk/ons/guide-method/measuring-equality/equality/sexual-identity-project/index.html) This question set must be acceptable to all parts of the trans community.
    2. Require all government funded research (including that funded by Research UK) to record sexual orientation and gender identity as part of their demographic data collection, and to report the results.
    3. Encourage the large UK charities that fund research (such as Wellcome Trust, Cancer Research UK) to require that their funded research records sexual orientation and gender identity as part of their demographic data collection.
    4. Work with existing LGB&T service providers and charities to ensure harmonious working relationships and prevent duplication of effort
    5. Set up a health and social care staff diversity training initiative as described in Section 4.3 above. This would use best evidence on how to encourage staff to work in a professional way to all sections of the community
    6. Set up a national training initiative for schoolteachers on how to teach children about diversity issues along the lines of the ‘No Outsiders’ project.


References (UK evidence marked with *)

*Baker D. Youth Chances First reference report. Metro London 2014. https://eige.europa.eu/resources/YouthChancesSurvey-16-25yearOlds_FirstReferenceReport.pdf

*Balding A. Young people in Cambridgeshire schools, the health-related behaviour survey 2014, a report for LGBT. The Schools Health Education Unit, Exeter 2014. (Hard copy only)

Batejan KL, Jarvi SM, Swenson LP. Sexual Orientation and Non-Suicidal Self-Injury: A Meta-Analytic Review. Archives of Suicide Research 2015;19(2): 131-50 https://www.ncbi.nlm.nih.gov/pubmed/25297459

*Bates C, Walker S, Hunt R, Grierson J, Redsell S, Meads. Education of health and social care professionals in lesbian, gay, bisexual and transgender issues: a systematic review (A summer placement project). Poster. FHEMS Research Conference, ARU, Chelmsford 14th Sept 2018 (see Appendix 3).

*Booker CL, Rieger G, Unger JB. Sexual orientation health inequality: Evidence from Understanding Society, the UK longitudinal household study. Preventive Medicine 2017;101:126-32

Caceres BA, Brody A, Luscombe RE, Primiano JE, Marusca P, Sitts EM, Chyun D. A systematic review of cardiovascular disease in sexual minorities. American Journal of Public Health 2017;107(4):e13-e21. https://www.ncbi.nlm.nih.gov/pubmed/28207331

*Carter L, Hedges L, Congdon S. Using diversity interventions to increase cervical screening of lesbian and bisexual women,. Journal of Psychological Issues in Organizational Culture 2013;3(S1):133–145. https://onlinelibrary.wiley.com/doi/epdf/10.1002/jpoc.20098

Castellini G, Lelli L, Ricca V, Maggi M. Sexuality in eating disorders patients: etiological factors, sexual dysfunction and identity issues. A systematic review. Hormones, Molecular Biology and Clinical Investigation 2016;25(2):71-90. doi: 10.1515/hmbci-2015-0055. https://www.ncbi.nlm.nih.gov/pubmed/26812878

 

Cochran SD, Mays VM. Risk of breast cancer mortality among women cohabiting with same sex partners: findings from the National Health Interview Survey 1997-2003. Journal of Women’s Health 2012;21(5):528-33 https://www.ncbi.nlm.nih.gov/pubmed/22360695

*Cree W, O’Corra S. Core training standards for sexual orientation, making national health services inclusive for LGB people. UK DoH SOGIAG, London, 2006. http://www.lgbt-healthinequalities.scot.nhs.uk/documents/5%20Guidance_educators/Resources/Training_standards_SO_06.pdf

*Elliott MN, Kanouse DE, Burkhart Q, Abel GA, Lyratzopoulos G, Beckett MK, Schuster MA, Roland M. Sexual minorities in England have poorer health and worse health care experiences: a national survey. Journal of General Internal Medicine 2014;30(1):9-16 https://www.ncbi.nlm.nih.gov/pubmed/25190140

*Fish J. Co-producing knowledge about lesbian and bisexual women in breast cancer: messages for nursing professionals from a knowledge exchange project. Journal of Research in Nursing 2016;21(3):225-239. https://www.dora.dmu.ac.uk/xmlui/handle/2086/12223

*Formby E. Sex and relationships education, sexual health, and lesbian, gay and bisexual sexual cultures: Views from young people. Sex Education: sexuality, society and learning, 2011;11 (3), 255-266. https://www.tandfonline.com/doi/abs/10.1080/14681811.2011.590078

*Guasp A. Lesbian gay and bisexual people in later life. Stonewall, London 2011. https://www.stonewall.org.uk/sites/default/files/LGB_people_in_Later_Life__2011_.pdf

*Hafford-Letchfield T, Simpson P, Willis PB, Almack K. Developing inclusive residential care for older lesbian, gay, bisexual and trans (LGBT) people: an evaluation of the Care Home Challenge action research project. Health and Social Care in the Community  2018;26:e312-e320. https://www.ncbi.nlm.nih.gov/pubmed/29181893

*Hagger-Johnson G, Taibjee R, Semlyen J, Fitchie I, Fish J, Meads C, Varney J. Sexual orientation identity in relation to smoking history and alcohol use at age 18/19: cross-sectional associations from the Longitudinal Study of Young People in England (LSYPE). BMJ Open 2013;3:8 e002810 https://bmjopen.bmj.com/content/bmjopen/3/8/e002810.full.pdf

*Harding R, Bensley J, Corrigan N. Targeting smoking cessation to high prevalence communities: outcomes from a pilot intervention for gay men. BMC Public Health 2004;4(43):1-5. https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-4-43

Hodson K, Meads C, Bewley S. Lesbian and bisexual women’s likelihood of becoming pregnant: a systematic review. BJOG 2016 DOI:10.1111/1471-0528.14449 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5299536/

*Hunt R and Fish J Prescription for Change Lesbian and bisexual women’s health check 2008 Stonewall, London 2018. https://www.stonewall.org.uk/sites/default/files/Prescription_for_Change__2008_.pdf

King M, Semlyen J, See Tai S, Killaspy H, Osborn D, Popelyuk D, Nazareth I. A systematic review of mental disorder, suicide, and deliberate self harm in lesbian, gay and bisexual people. BMC Psychiatry 2008;8:70  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2533652/

*Mansfield L, Kay T, Meads C, Caldwell J. Rapid Topic Overview: Physical activity among LGB&T communities in England. Report to Public Health England. London, Brunel University 2014. https://www.brunel.ac.uk/__data/assets/pdf_file/0004/370345/Rapid-Topic-Overview.pdf

Meads C, Martin A, Grierson J, Varney J. Systematic review and meta-analysis of diabetes mellitus, cardiovascular and respiratory condition epidemiology in sexual minority women. BMJ Open 2018;8(4): https://bmjopen.bmj.com/content/8/4/e020776

Meads C, Moore D. Breast cancer in lesbians and bisexual women. BMC Public Health 2013;13(1):1127. https://bmcpublichealth.biomedcentral.com/articles/10.1186/1471-2458-13-1127

*Meads C, Carmona C, Kelly MP. Lesbian, gay and bisexual people’s health in the UK: A theoretical critique and systematic review. Diversity in Health and Care 2012;9(1):19-32. http://diversityhealthcare.imedpub.com/lesbian-gay-and-bisexual-peoples-health-in-the-uk-a-theoretical-critique-and-systematic-review.php?aid=1826

*Meads C, Pennant M, McManus J, Bayliss S. A systematic review of lesbian, gay, bisexual and transgender health in the West Midlands region of the UK compared to published UK research. Report number 71, March 2009. WMHTAC, Department of Public Health and Epidemiology, University of Birmingham. 2009 https://www.birmingham.ac.uk/Documents/college-mds/haps/projects/WMHTAC/REPreports/2009/LGBThealth030409finalversion.pdf

*ONS (Office for National Statistics) Statistical Bulletin. Personal well-being and sexual identity in the UK: 2013 to 2015. https://www.ons.gov.uk/peoplepopulationandcommunity/wellbeing/bulletins/measuringnationalwellbeing/2013to2015 accessed Sept 2018

*ONS. What are the top causes of death by age and gender? http://visual.ons.gov.uk/what-are-the-top-causes-of-death-by-age-and-gender/ accessed Dec 2016.

*ONS Statistical bulletin: Integrated Household Survey (Experimental statistics): January to December 2014. Sexual identity, smoking prevalence and perceived general health using data from the Integrated Household Survey. https://www.ons.gov.uk/peoplepopulationandcommunity/culturalidentity/sexuality/bulletins/integratedhouseholdsurvey/2015-10-01

*Opening Doors London. Supporting older lesbian, gay, bisexual & transgender people, a checklist for social care providers. Camden AgeUK, London, 2011. http://openingdoorslondon.org.uk/wp-content/uploads/2014/04/older_lgbt_checklist_for_adult_social_care.pdfv

*O’Riordan M, Goh L, Lamba H. Increasing hepatitis A IgG prevalence rate in men who have sex with men attending a sexual health clinic in London: implications for immunization policy. International Journal of STD and AIDS 2007;18:707-10. https://www.ncbi.nlm.nih.gov/pubmed/17945051

*Pesola F, Shelton KH, van den Bree MB. Sexual orientation and alcohol problem use among UK adolsecents: an indirect link through depressed mood. Addiction 2014;109:1072-80

*Priddle H. How well are lesbians treated in UK fertility clinics? Human Fertility 2015;18:3, 194-199. https://www.ncbi.nlm.nih.gov/pubmed/26083621

*Pugh S, McCartney W, Ryan J. Moving forward: working with & for older lesbians, gay men, bisexuals and transgendered people, training and resource pack. University of Salford 2010. (Hard copy only)

*Rimes KA, Broadbent M, Holden R, Rahman Q, Hambrook D, Hatch SL, Wingrove J. Comparison of treatment outcomes between lesbian, gay, bisexual and heterosexual individuals receiving a Primary Care psychological intervention. Behavior and Cognitive Psychotherapy 2018;46(3):332-349. doi: 10.1017/S1352465817000583. Epub 2017 Oct 5. https://www.ncbi.nlm.nih.gov/pubmed/28978366

Robinson C, Galloway KY, Bewley S, Meads C. Lesbian and Bisexual Women’s Gynaecological Conditions: A Systematic Review. BJOG 2016 DOI: 10.1111/1471-0528.14414 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5363366/

*Saunders CL, Mendonca S, Lyratzopoulos Y, Abel GA, Meads C. Associations between sexual orientation, and overall and site-specific diagnosis of cancer: evidence from two national patient surveys in England. Journal of Clinical Oncology 2017 (Sept) DOI: https://doi.org/10.1200/JCO.2017.72.5465

*Semlyen J, King M, Varney J, Hagger-Johnson G. Sexual orientation and symptoms of common mental disorder or low wellbeing: combined meta-analysis of 12 UK population health surveys. BMC Psychiatry (2016) 16:67. https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-016-0767-z

*Shahab L, Brown J, Hagger-Johnson G, Michie S, Semlyen J, West R, Meads C. Sexual orientation identity and tobacco and hazardous alcohol use: findings from a cross-sectional English population survey. BMJ Open 2017;7:e015058. doi:10.1136/bmjopen-2016-015058. https://bmjopen.bmj.com/content/7/10/e015058

*Somerville C. Unhealthy Attitudes. Stonewall, London, 2015. https://www.stonewall.org.uk/sites/default/files/unhealthy_attitudes.pdf

*Varney J, Newton E, Meads C. Improving the health and wellbeing of lesbian and bisexual women and other women who have sex with women. Public Health England, London May 2018. Available from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/689713/Improving_health_and_wellbeing_LBWSW.pdf

Varney J. Minorities within minorities – the evidence base relating to minority groups within the LGB&T community. Unpublished report, 2014? (Hard copy only)

*Walker R, Hughes C, Ives D, Jardine Y. The impact of sexuality on the assessment of care needs and the delivery of care to older lesbians living in residential care homes in Bradford and Calderdale. Labrys Trust Calderdale 2013. https://www.thelabrystrust.com/uploads/1/1/7/4/11743016/labrys_trust_research_report_march_2013_v3_for_pdf-1.pdf

*Willis P, Almack K, Hafford-Letchfield T, Simpson P, Billings B, Mall N. Turning the co-production corner: methodological reflections from an action research project to promote LGBT inclusion in care homes for older people. International Journal of Environmental research and Public Health 2018;15:695. https://www.ncbi.nlm.nih.gov/pubmed/29642460

*Whybrow P, Ramsay J, MacNee K. The Scottish Health Survey: Equality groups. Edinburgh, The Scottish Government, 2012. https://www.gov.scot/Publications/2012/10/8988/0

 


Appendix 1. Professor Catherine Meads’ biography

I am a senior systematic reviewer and have over 120 publications on a wide variety of topics (see https://www.anglia.ac.uk/health-social-care-and-education/about/school-of-nursing-and-midwifery/our-staff/catherine-meads ). I have worked extensively with the National Institute for Health and Care Excellence (NICE) and have led teams of systematic reviewers producing health technology assessments and evidence reviews for a variety of funders.

 

I first started researching into sexual orientation and health in the early 1990s, working with a lesbian public health group in Birmingham called Lesbewell. Since then I have produced a number of journal articles and reports on LGBT health and wellbeing, including a recent report to PHE about health and experience of healthcare in UK sexual minority women. Many of these publications and reports are referred to in the submission.

 

I have been involved with a number of LGBT Health Summits and meetings around LGBT health, for example a meeting with Department of Health staff on LGBT Public Health Strategy for England in 2012, and a Roundtable Discussion with the Deputy Chief Medical Officer in 2016. I have actively promoted issues around LGBT health where possible.

 

I have also been active in the LGBT community for many years, having had leadership roles with Lincoln Gay Group and Lincoln Gay Switchboard, Boot Women walking group (Birmingham), Birmingham Lesbian Line and Lesbewell public health group (Birmingham).  More recently I have been a trustee, first for the Birmingham LGBT Community Trust, then the LGBT Consortium, and currently I am a trustee of the Encompass Network charity in Cambridge. I led the Brunel University Staff LGBT network for a year and currently lead the Anglia Ruskin University LGBT staff network.

My experience of publishing research over the last 20 years has shown that the LGBT health research that I have been able to do receives more rejections pre-peer review, has more intensive peer review, takes 2-3 times as long to get through the publication process, and usually gets into journals with lower impact factors than my non-LGBT research. Therefore, I congratulate all researchers who have managed to get their LGBT research published. There is also a lot of very useful material in grey literature (ie unpublished reports available on various websites). Care needs to be taken around conflicts of interest with non-peer reviewed unpublished material.

 

 


Appendix 2. Terminology

People can be categorised by identity, attraction, behaviour and cohabitation status. Some of the most common terms are explained below, along with some associated issues.

 

1a. LGBT refers to lesbian, gay, bisexual and transgender and is a term about identity (rather than behaviour). There is quite a bit of evidence now that identity and behaviour do not correlate well. A woman can identify as heterosexual, yet have a sexual relationship with another woman, or can identify as lesbian but not have had a sexual relationship with a woman for 20 years.

 

1b. In LGB, the G usually refers to gay men but some women also refer to themselves as gay, also queer and other terms.

 

1c. Transgender is a gender minority not a sexual minority - a transgender woman could identify as lesbian, bisexual or heterosexual, depending on the gender of the person she would identify as having a relationship with in the past, present or future. So if she was seen as a man before transitioning and had a relationship with a woman she was heterosexual, but after transitioning if she is in a relationship with the same woman she would be lesbian. Alternatively she might see herself as bisexual as, over her lifetime, she has identified as having a relationship with an opposite sex, then a same sex partner.

 

1d. Lesbian is also seen as a bit of an ‘older woman’ category by younger sexual minority women. Younger women can describe themselves as queer, but that term is seen as insulting within the heterosexual world. Also lesbian is seen as a feminist term by some sexual minority women who regard themselves as gay women rather than feminist lesbians.

 

1e. Another way of categorising is by whether people are married, in a civil partnership or co-habiting with another person of the same sex. Many LGBT people are not currently in regular partnerships so that would miss a lot out. And some of this categorisation also assumes 2-person relationships, rather than 3-person relationships, etc.

 

1e. Another way of categorising is by sexual behaviour – women who have sex with women (WSW) and women who have sex with men and women (WSMW) etc. This categorisation tends to be used for sexual health research, as researchers there are interested in sexual behaviour, usually within the last 5 years. However, some lesbians are not sexual active, and may not have had sex for more than 5 years, but wouldn’t revert to being WSM or heterosexual. Some married/Civil Partnership sexual minority women together are not sexually active either.

 

1f. Another possibility is using non-heterosexual women compared to heterosexual women, etc, but this is a negative categorisation (ie not being …).

 

1g. So in order to provide a positive description of an umbrella term for a single sex sexual minority group I have used the term sexual minority women/sexual minority men. Although many in the LGBT community do not like this term, it is difficult to know what else to use and it is increasingly being used in publications.


Appendix 3.