Jo Moriarty King’s College London

1. Room for improvement?Experiences of health and social care services among older people from minority ethnic groups Jo Moriarty King’s College London

2. Outline • What are the issues? • These will be familiar! • Inequalities in old age • Evidence on services • Making improvements Age Concern Bristol/Brunelcare Research Forum

3. Background • Race Equality Foundation promotes race equality in social support and social care http://www.reu.org.uk • Funded to develop a national resource to help improve the quality of health and housing provision to black and minority ethnic communities • Includes series of briefing papers containing research evidence, good practice tips, resources, and key messages for practice Age Concern Bristol/Brunelcare Research Forum

4. Presentation uses…. • Asked to do briefing paper on health and social care experiences on black and minority ethnic older people from http://www.reu.org.uk/health/files/health-brief9.pdf • Currently have 13 briefing papers on health and 12 on housing • Presentation today is overview of topic, not a single research project Age Concern Bristol/Brunelcare Research Forum

5. Presentation uses (2) • Evidence from ESRC project on social support and quality of life among older people from different ethnic groups • Work for the former Healthcare Commission • Asked to talk to BME communities as part of a wider review of the National Service Framework for Older People • Practice guide for Social Care Institute of Excellence (SCIE) on user participation • Work with SCIE on depression and BME people • Other literature Age Concern Bristol/Brunelcare Research Forum

6. Why this topic is important (1) • Increase in older population from minority ethnic groups • Projections influenced by migration history and patterns of settlement • Currently 30 per cent people aged 65 and over in Brent and 20 per cent Lambeth and Hackney (Evandrou, 2000) are from BME communities • And in Bristol? • Council’s Improving the Quality of Life of Older People in Bristol Equalities Impact Assessment • BME community in Bristol lower than average overall but very concentrated in certain areas • Currently younger than average but likely to change Age Concern Bristol/Brunelcare Research Forum

7. Why this topic is important (2) • UK (especially England) is becoming increasingly ethnic diverse • Term ‘super diverse’ is increasingly used • Reflected in work for Healthcare Commission (now CQC) • Focus groups with older people from Yemeni, Somali, Bosnian, and Vietnamese backgrounds Age Concern Bristol/Brunelcare Research Forum

8. Impact of ageing on ethnic inequalities • Age accentuates health inequalities • British Household Panel Survey data show that inequalities in self assessed health INCREASE with age (Sacker et al 2005) • May experience ageing process at younger age (Ebrahim et al, 1991) • Prevalence of limiting longstanding illness • Higher among Irish, Black Caribbean, Indian, Pakistani and Bangladeshi communities • Lower among Chinese (Evandrou, 2000) Age Concern Bristol/Brunelcare Research Forum

9. Ageing and health inequalities • Prevalence (frequency) of some age related health problems diseases varies • Coronary heart disease • Diabetes • (Parliamentary Office of Science and Technology, 2007) Age Concern Bristol/Brunelcare Research Forum

10. Inequalities in access to services • Inequalities in access to health care • Over represented in primary care • Under represented in secondary services (Ascheson, 1997) • Inequalities in reports of treatment • Patient surveys suggest older people from BME communities are more likely to report receiving poor care (Healthcare Commission, 2006) Age Concern Bristol/Brunelcare Research Forum

11. Recognised in policy documents • Legislation and policy guidance recognises differences in treatment • Examples include • Race Relations Amendment Act 2000 • National Service Framework for Older People (2001) • New Single Equality Bill (2009) • Public Sector Equality Duty • Dementia strategy (2009) Age Concern Bristol/Brunelcare Research Forum

12. But why don’t we know more? (1) • Still neglected issue in mainstream research • Just eight per cent of articles in two old age psychiatry journals included people form a minority ethnic group (Shah et al, 2008) • Presents methodological challenges • Complexities of separating out multiple factors • e.g. socio-economic status and ageing Age Concern Bristol/Brunelcare Research Forum

13. But why don’t we know more? (2) • Studies of older people still have low numbers of older people from minority ethnic groups • e.g. English Longitudinal Study of Ageing • Studies may fail to report differences by age • e.g. studies of depression and ethnicity Age Concern Bristol/Brunelcare Research Forum

14. But we do know some things…. • Differences in access to information • Knowledge and attitudes of staff • Provision of culturally sensitive services • Need to put this into action! • 'Let's move on': Black and minority ethnic older people's views on research findings (Butt and O’Neill, 2004) Age Concern Bristol/Brunelcare Research Forum

15. Differences in access to information • Access to information about health and social care services is always variable • Studies have shown that BME people are more likely to report they lacked information (Lindesay et al, 1997, Butt and O’Neill 2004) Age Concern Bristol/Brunelcare Research Forum

16. Specific issues • Lack of access to materials in translation • Content of leaflets may not be relevant • Shortage of good quality interpreting services • Reliance on other family members • (Manthorpe et al, 2009) Age Concern Bristol/Brunelcare Research Forum

17. Dementia • Research has shown that knowledge about dementia is less among Asian and Black Caribbean communities • (Adamson, 2001, 2005, Bowes and Wilkinson, 2003) • Image from Dementia Strategy Age Concern Bristol/Brunelcare Research Forum

18. Consequences are…. • May contribute to poorer outcomes • Later access to dementia services • Prevents benefits of early intervention • Can lead to increased carer stress (Bowes and Wilkinson, 2003) • Dementia strategy Age Concern Bristol/Brunelcare Research Forum

19. Improving access to information (1) • There are many ways in which improvements can be made • Why reinvent the wheel? • Costs of preparing and translating leaflets are high • But there are many resources that exist already Age Concern Bristol/Brunelcare Research Forum

20. Resources may already exist Alzheimer Scotland has a set of translated leaflets on dementia which can be downloaded free from their website Age Concern Bristol/Brunelcare Research Forum

21. Improving access to information (2) • Different media formats may work better • DVD may work better than leaflets for some communities, especially if they are not literate in their own language • Consider content – using simple language and avoiding jargon • SCIE guide – use of ‘jargon busters’ from community groups Age Concern Bristol/Brunelcare Research Forum

22. Improving access to information (3) • Health and social care services are making increasing use of advice lines • May actually INCREASE inequalities • “There is lack of information in Gujarati on benefits, social and health care services to this particular over-50s women’s group. The women say that there is no system where they can just pick up the phone and get help from services.” • (Manthorpe et al, 2009) Age Concern Bristol/Brunelcare Research Forum

23. Also remember that… • Access to information varies • History of migration meant many older people worked in health and social care • Older Black Caribbean women had better levels of knowledge (Moriarty and Butt, 2004) • Experience of member of advisory group at Carers’ Group very negative Age Concern Bristol/Brunelcare Research Forum

24. What role do our expectations play? • Differing expectations may influence help we seek/expect (Chahal and Temple, 2005) • Existence of stigma? • Preferences for different types of treatment? • Lack of cross cultural studies in this area Age Concern Bristol/Brunelcare Research Forum

25. Attitudes of professionals • Professionals may also create barriers to accessing and using services • Stereotyped expectations about extent of family support (Katbamna et al, 2004) • ‘They look after their own’ classic phrase • Existence of racism (Butt and O’Neill, 2004) • Unspoken issue (Culley, 2006) Age Concern Bristol/Brunelcare Research Forum

26. Diversity among workforce • Workforce may not share same cultural backgrounds • Image from Simon Rawle’s photographs taken for International Migrant Workers’ day for UNISON http://www.unison.org.uk/file/MWphotoexhib.pdf Katrzyna Lichwala Poland Age Concern Bristol/Brunelcare Research Forum

27. Increasing professionals’ knowledge • Consider content of professional qualifying programmes • Role of guidelines for measuring ‘cultural competence’ as in the US? • Training across the workforce • Access to training among (non professionally qualified) care workforce Age Concern Bristol/Brunelcare Research Forum

28. Emphasising that it is an important component of the work… • 2006 Social Work recruitment campaign featured older Black Caribbean man • (But celebrity culture in 2009!) Age Concern Bristol/Brunelcare Research Forum

29. Making services more accessible • ‘Link workers’ can improve experiences of GP services, hospital appointments • Role of community groups providing advocacy and outreach • (Moriarty & Butt, 2004, Manthorpe et al, 2009) Age Concern Bristol/Brunelcare Research Forum

30. However…. • Relationships with ‘link’ people and/interpreters may be ambivalent (Chau, 2007) • Benefits of improving workforce diversity • Importance of recruiting bilingual workers • ‘El Portal’ Age Concern Bristol/Brunelcare Research Forum

31. Providing culturally specific services • Role of culturally specific services? • Most often for day care/lunch clubs • Sometimes for home care Image from Age Concern Lewisham and Southwark Black Elders Mental Health Day Centre Age Concern Bristol/Brunelcare Research Forum

32. However…. • How can we bring culturally sensitive services into the mainstream? • Issues about funding (Butt and Mirza, 1996) • Groups may be in competition with each other (Bowes, 2006) Age Concern Bristol/Brunelcare Research Forum

33. Making mainstream services more culturally sensitive • In addition to using knowledge of workforce…. • Learn from expertise of people using services • Dietary advice from Black Caribbeans (Brown et al. 2007) Age Concern Bristol/Brunelcare Research Forum

34. Increasing public engagement • Different methods of consultation are needed for different communities • Events versus surveys may get better response • Photograph from ‘Listening event’ for Healthcare Commission Age Concern Bristol/Brunelcare Research Forum

35. New challenges? • Increasing diversity • Presentation for Making Research Count • London borough high proportion of bilingual/bicultural workers – challenges of new languages • Effects of personalisation? • Will it improve services or increase inequalities? Age Concern Bristol/Brunelcare Research Forum