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10. EQUALITIES AND DIVERSITY

Introduction

1. Diversity (age, disability, gender, race, religion or belief, sexual orientation) can lead to unequal health outcomes for people with particular characteristics, compared to the rest of the population. We need to respond to diversity in a range of ways including: making services more culturally sensitive and accessible; providing a bridge for people to access mainstream services, for example translation and interpreting; providing a different level or type of service for example to address South Asian people's propensity to harm from diabetes, or tackling the societal discrimination and disadvantage some groups face that cause their unequal health outcomes.

2. The Task Force has mainly been looking at health inequalities that relate to life circumstances such as poverty and deprivation. Members expressed a wish at the extended meeting on 21 November to explore health system responses to some of the other determinants of health, including diversity characteristics, which are demonstrated in the Dahlgren & Whitehead model previously considered by the Task Force. (Figure 1). This paper responds to that request.

Figure 1 Determinants of health are multi-layered and range from societal to individual factors

3. Sometimes diversity and life circumstances interact and pose increased and interlinked risks to health. People do not just live in poverty, they may also be a lone parent, may have a long term disability that affects the work they can do, or live with discrimination that impacts on their mental health. Gender, and masculinity in particular, contributes to problems of violence, to the reluctance of men to seek help for problems and may make men more likely to resort to alcohol and drugs than to seek help for a mental health problem.

4. While the Task Force has been primarily interested in health inequalities that result from socioeconomic circumstances, recognising and responding to these multiple and complex determinants of health is important when considering health service responses to health inequalities and identifying gaps in current action where health outcomes for individuals could be improved. This includes action to support people with learning disabilities and people with long term conditions. It also includes encouragement of community-led approaches which address some of the institutional and societal discrimination and resulting sense of alienation experienced by some groups.

The Equality and Human Rights Commission endorses the case made in this paper that the Task Force should consider all the factors that influence unequal health outcomes. The Commission agrees that plans for improvement should take account of the diverse needs of the population, and the multiple discrimination and disadvantage that affect outcomes for many people. Effective equalities impact assessment will be one of the key tools in addressing this. The Commission looks forward to seeing the conclusions of the Task Force and will continue to work with the health service to support its equalities agenda.

The Evidence

5. Inequalities due to some aspects of diversity are well understood, for example coronary heart disease ( CHD) admission rates in Scotland among men are nearly double those of women, ¹⁷ diabetes prevalence is 4 times higher among Pakistani people in Scotland than the general population ( NRCEMH 2004). While data exist on health inequalities by gender and age there are fewer systematic data available in Scotland for health inequalities by ethnicity, disability, sexual orientation, transgender, and religion or belief.

6. Even where we do have data they are either incomplete or are not used. For example while there are good trend data on life expectancy by gender, there is little systematic analysis of variations in clinical outcomes between men and women. This is despite evidence of differences in the symptoms and prognosis of a wide range of diseases and conditions that affect men and women. This is very evident in the case of CHD, for example, which affects more men than women at younger ages. ¹⁸

7. And, although there is very little research on the health of lesbian, gay, bisexual or transgender ( LGBT) people, there is research that suggests the LGBT communities experience lower self esteem and higher rates of mental health problems than in general population, ¹⁹ that impact on health behaviours including higher reported rates of smoking, alcohol and drug use. ²⁰

The mental health and wellbeing of particular groups appears to be worse amongst some specific groups. For example:

• Mental health problems affect more women than men. Specifically, women experience higher rates of depressive disorders than men. However, men are more likely to complete suicide and experience earlier onset of schizophrenia with poorer clinical outcomes than women

• Comparison of teenage and older mothers showed that teenage mothers suffer from poorer mental health in the first three years after their child's birth

• Rates of attempted suicide and self harm have consistently been shown to be higher amongst young and adult LGBT people

8. Where evidence exists it shows that there are important variations in health by ethnic group. Chinese people have better self-reported health and people born in HK/China but living in Scotland have low all-cause mortality. Differences in health between different ethnic groups are at least as large as those between the wealthy and the poor. Compared with the non-South Asian population, the incidence of heart attacks in Scottish South Asians is 45% higher in men and 80% higher in women. ²¹ All cause mortality among people living in Scotland but born in India, Pakistan, Bangladesh and China is lower than those born in Scotland. ²² On the other hand, mortality from cardiovascular disease is higher among South Asian born than Scottish born (Fischbacher et al) and the prevalence of diabetes is much higher ( NRCEMH 2004). As is the case for all groups, the likelihood of ethnic minorities reporting poor health is strongly associated with ageing and deprivation.

9. Evidence highlights the impact of culture on health, the excess of ill health in some minority ethnic communities and the many barriers to access, including the impact of racism on mental health and wellbeing.

Factors Affecting Health and Wellbeing

10. As demonstrated in Figure 1 determinants of health are multi-layered. Particularly important amongst these and a focus for action are social and community influences. Discrimination and prejudice are formed from attitudes and norms in society. Additionally the way people are brought up impacts on their health and health behaviours. An example is the role of gender, and masculinity in particular, in contributing to public health and criminal justice problems. Across the entire spectrum of male violence there are key questions that need to be addressed:

• Why is it predominantly men who engage in this behaviour? There are just as many females growing up in similar circumstances who do not behave in this way.

• What is it about being male - gender expectations of being 'hard'; conforming to perceived notions about being a man etc - that supports and normalises aggression for boys and men?

11. The same processes, for example, contribute to the reluctance of men to access health services or seek help for problems at an early stage for fear of appearing 'weak'; make men more likely to self-medicate with drink and drugs than accept they have a mental health problem etc. Similarly there are disproportionate levels of disengagement by boys compared to girls from the educational system. The gender difference in relation to violence and abuse is often attributed to 'natural aggression' for males, yet this argument fails to explain the capacity of most men to lead non-violent lives.

12. The impact of prejudice and discrimination on self esteem and the possible impacts on health including mental health, alcohol and drug use are also related to social and community influences as well as more general environmental factors, and indeed living and working conditions.

Diversity Issues and Health Services

13. It is useful to consider these issues from a service redesign perspective of getting in, through and out of services. This is usefully portrayed in Dr Alison McCallum and Professor Mats Brommel's model (fig. 2). This highlights the role of the patient, community and wider factors at all stages of the healthcare pathway.

Getting In

"I can remember going to see a consultant who just told me that I'd be dead by the time I was sixteen - because I had both epilepsy and a learning disability. That stuck with me, that did. I've never forgotten him saying that to me - when I was just young. And you know, I invited that consultant to my 40th birthday party last year - and he came!"

14. In 2006 the Disability Rights Commission ( DRC) conducted a formal investigation into the health of people with mental health problems or learning disabilities in England & Wales. An analysis of more than eight million patient records was backed up by written and oral evidence. The investigation found that people with learning disabilities and people with mental health problems are much more likely than other citizens to have significant health risks and major health problems. For people with learning disabilities, these particularly include obesity and respiratory disease; for people with mental health problems, risks and problems include obesity, smoking, heart disease, high blood pressure, respiratory disease, diabetes and stroke.

15. The DRC investigation also found that these high risk groups were actually less likely to receive some of the expected, evidence-based checks and treatments than other patients and efforts to target their needs specifically were ad hoc. For people with mental health problems some standard treatments and tests, for example cholesterol checks and statins for people with heart disease, and spirometry for respiratory illness, were received less often than for others with heart disease or respiratory illness. For people with learning disabilities, some checks were given less often. People with learning disabilities who have diabetes had fewer measurements of their body mass index than others with diabetes and those with stroke had fewer blood pressure checks than others with a stroke. They also had very low cervical and breast cancer screening rates.

16. Some people face difficulties in accessing services or reporting health problems because they fear discrimination, lack experience, or have low confidence. This includes people whose first language is not English and people who have difficulty accessing information. For example homeless people and people with low literacy levels do not have the same access to information about health risks, signs and symptoms or accessible information on health services.

Getting Through

• 87% of GPs felt they could communicate effectively with deaf people using their service.

• 52% of them could not name any resources they had for communicating with deaf and hard of hearing people.

• 23% of deaf and hard of hearing people had left an appointment unsure of what was wrong with them.

• 1 in 6 avoided going to the doctors because of communication problems.

RNID (2000) Can You Hear Us? Deaf people's experience of social exclusion, isolation and prejudice in Breaking the Sound Barrier

"Mrs B has been living in Scotland for over 20 years, she is in her late 50s. About 5 years ago, she suffered from severe stomach pains so she went to see her GP. Both the GP and the practice nurse were not able to understand Mrs B as she speaks very little English. No interpreter was sought for to assist Mrs B. The pain persisted and Mrs B was treated by the GP for about 2 years as a form of stomach illness. At no time was she referred to the local hospital for further investigations. One day Mrs B found external bleeding and she was rushed to the A&E department immediately. After a thorough investigation, the consultant confirmed that Mrs B was suffering from cancer of the intestine and required an operation at once."

17. The Scottish Government's Multiple and Complex Needs initiative was established in 2006 to investigate effective approaches to understanding and responding to the needs of people with multiple identity or complex needs, recognising that people do not just live in poverty, but may also live with a range of other circumstances that are important to their service needs. The initiative was discussed in Paper 15 for the Task Force on anti-poverty action. Much of the work done to date across the 14 projects funded by this initiative has been on changing NHS staff awareness, attitudes and behaviour towards certain groups and changing staff attitudes towards role 'boundaries', for example more comprehensive needs assessments or making sure domestic abuse victims feel comfortable bringing up substance abuse issues. A number of the projects are experimenting with actual changes in the structure of delivery or support services, in particular through the introduction of peer support workers or Patient Champions.

Getting On

"The nurse just took time to talk to me. She spoke to me, not to the people with me, and told me what was happening, what was wrong. She told me what was to happen to me, every step. I felt safe, I went home knowing that I was going to get better."

18. Better Health, Better Care affirms the Scottish Government's focus on people as partners in their health and health care. Supporting and empowering those who are traditionally excluded or disadvantaged and ensuring they have accessible and appropriate information about their health and wellbeing is central to ensuring everyone can accept their rights as partners in their own health. By tackling societal factors that impact negatively on health, for example prejudice and discrimination; or the negative effects of masculinity, including violence, we can create safer, supportive communities where people can sustain good health and thrive. The Equalities Review ²³ clearly states the role public policy has to play:

"No-one, in the final analysis, can compel anyone in a free society to be more motivated or to have higher aspirations. Public policy can help in two ways. First, policy can make it easier for people who suffer disadvantage to find paths out of that disadvantage. Here the role of mentors, role models and good practice can be crucial … But the second and crucial role of public policy is to remove barriers to such aspirations."

Effectiveness of Approaches to Date

19. There are some Government health policies and strategies to tackle the issues highlighted above, in particular Fair for All, as outlined in Paper 6 for the Task Force on Healthier Scotland action. Much of this has been in response to legal requirements, in particular relating to the public sector duties on race (2002), disability (2005) and gender (2006). These duties require public services to involve communities in setting equality objectives, publish equality schemes and assess the likely impact of all policies and functions on these groups. However there is little evidence to date of improved health outcomes or a change in patient experience resulting from effective implementation of these strategies.

20. A national programme of service improvement work, focusing on patient experience and equalities in the design, development and delivery of cancer services has been established with a specific focus on measuring outcomes. This initiative is closely linked to the recently launched Better Together patient experience initiative, which will survey a quarter of a million patients per year, disaggregated by equality 'strand'. It will improve or redesign services in areas such as chemotherapy, screening services and different tumour pathways based on patients' experiences and existing evidence of the barriers different communities face. Effective practice will be rolled out across all NHS cancer services. This approach will then be developed across CHD and mental health services, thereby tackling the main areas of NHS activity, which correspond to significant Task Force priorities.

21. Of particular importance is improved data collection. Over 90% of healthcare is provided in primary care. Yet almost no data are available about primary care services for particular groups, with the result that it is not possible to assess whether primary care services are adequately meeting the specific needs of different populations, a requirement of equalities legislation. The situation is little better in secondary care. As a result it is not possible to use routine data to identify variations or trends in health and health care or to guide quality improvement initiatives.

22.NHS National Services Scotland has developed a range of initiatives, e.g. new datasets, training programmes and communications advice to support data collection by NHS Boards across equality strands. However, there are few incentives for NHS Boards to collect these data and no targets have been set for equality data collection.

Using information to promote equality

Mrs Singh has received an audiotape and letter in Punjabi inviting her to attend for Breast Screening. Both tell Mrs Singh that a Punjabi interpreter trained in Breast Screening will be present to help her.

Action The clinic arrange for a Punjabi interpreter to meet Mrs Singh when she arrives for her appointment and stay with her throughout her screening.

Outcome Mrs Singh feels less anxious about the examination and confident in asking questions in Punjabi knowing that she is understood.

23. A new e-Health Strategy is being developed in Scotland. It is crucial that any new systems include, along with date of birth and gender, the requirement to record ethnicity and disability. The Government also needs to consider how best to collect data on sexual orientation and religion and belief. Better data collection is essential to inform strategies to improve health across all the diversity groups.

Tools for the Job

24. A range of tools and approaches are available to support the implementation of equalities sensitive design, development and delivery of services. Many of these are complementary to those being considered to tackle other aspects of health inequalities, including:

24.1 Equality Impact Assessment ( EQIA) has been a requirement on NHS Boards since 2005 and if implemented effectively, will promote equality and tackle the adverse impacts many people experience in our health services.

24.2 Fair for AllGuidance has been developed for NHS Scotland covering all equality strands, this now needs to be implemented effectively.

24.3 HEAT, the Government's performance framework for NHS Boards provides a focused set of performance targets for NHS Boards that could be disaggregated by age, disability and other diversity factors.

24.4 Patient Focus Public Involvement ( PFPI) frameworks exist across all NHS Boards and the Scottish Health Council was established in 2005 to assess Boards' progress against agreed PFPI targets.

24.5 The recently launched Better Together Patient Experience programme will survey 250,000 patients' experiences per year, disaggregated by age, disability, gender, race, sexual orientation and religion or belief and will use these experiences to develop a national service improvements.

25. Additionally the merging of the 3 previous Equality Commissions (Disability, Equal Opportunities and Race) into a new integrated Commission for Equality and Human Rights will work to encourage, enable and (as a last resort) enforce public services to promote equality and tackle discrimination. The integration of Human Rights into the work of the Commission is significant and something that will need to be considered further.

Conclusion

26. While NHSScotland has been complimented by the 3 previous Equality Commissions for being at the leading edge of public sector responses to issues of equality and diversity. But there are still significant challenges ahead. By encompassing an equalities dimension to their considerations and recommendations the Task Force can provide a significant lever for health service responses to the needs of discriminated and disadvantaged communities in Scotland.

April 2008

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