Acknowledgements

1. Culturally sensitive health care systems in our multi-ethnic Europe:insights from ScotlandRaj BhopalCBE, DSc (hon)Professor of Public Health, University of EdinburghHonorary consultant, NHS Lothian

2. Acknowledgements • Colleagues including Rafik Gardee, Hector MacKenzie, Laurence Gruer, Aziz Sheikh, Gill Matthews, Vincent Laurent • People supplying slides-Smita Grant (MEHIS, Lothian NHS), Judith Sim (Lothian NHS), Michelle Lloyd (Equally Connected) • IOM for migration slide • Members of the Edinburgh Ethnicity and Health Research Group • The conference organisers

3. Objectives of the presentation • Share insights from an 16 year, ongoing journey trying to develop culturally sensitive health systems, 11 in Scotland • Reflect these internationally, especially Europe

4. Core concepts for the lecture • Migration-internal and international • Ethnicity • Health systems • Inequality • Inequity

5. Migration-key to culturally sensitive healthcare systems • Fundamentally human • Reasons – commerce, work, education, ambition, refugecuriosity & change • Europe- progressed with migration • Nothing to be ashamed of-for individuals or nations • Lifting the stigma is a top priority

6. Migrating populations, 1990-2000: 175 m. in 2000 (4-fold increase cf. 1975) 230 m. predicted by 2050 Sources: Population Action International 1994, IOM 2003

7. Ethnicity • The group you belong to, or are perceived to belong to, because of your culture (language, diet, religion), ancestry, and physical textures • Ethnicity incorporates race, and country of birth

8. Scotland’s ethnic composition-not untypical of Europe • Shaped by migration • Emigration historically overshadows immigration • Scotland has recently welcomed migration • 1850-1950 Irish, Lithuanians, Jews, Italians, Poles immigrate • 1950-2000 Indians, Pakistanis, Bangladeshis, Chinese immigrate • 2001-present Asylum seekers, refugees, Eastern Europeans, and students immigrate

9. 2001 Census (non-White populations doubled since 1991) % • White Scottish 88 • Other White 10 • South Asian 1.1 • Chinese 0.3 • African/Caribbean 0.15 • Mixed 0.25 • Other 0.2

10. Country of birth of mothers of babies born in Scotland

11. Forces - ethnic health inequalities • Culture and lifestyle • Social, educational and economic status • Environment before and after migration • Early life development • Generational effects • Genetics • Access to and concordance with health care advice • Quality and quantity of healthcare • Perceived status in society • Discrimination/bias/inequity

12. Inequity and inequality • Consider whether any of the following are inequities: • The lower prevalence of smoking in Chinese women compared to White women • The higher rate of colo-rectal cancer in White people compared to S. Asians • The lower life expectancy of African Americans compared to White Americans • What do you think?

13. Multiplicity of challenges for a culturally sensitive healthcare system • health behaviours, beliefs and attitudes, and diseases varying • diagnosis, treatment, intervention, adherence to the intervention, and outcomes varying • language and cultural barriers • requirements based on religion • lack of information and research • lack of leadership • personal biases, stereotyped views, individual racism • institutional (health system) bias, and laws against it • laws requiring equal opportunities in employment and other walks of public life

14. Legal Framework and Policy Consensus • In 1997 EU Member States approved the Treaty of Amsterdam • Article 13 - powers to combat discrimination on sex, racial or ethnic origin, religion or belief etc • Implemented in each European nation e.g. the UK has: • Race Relations Amendment Act 2000 (building on 1976 act) • Public sector duty to promote equality and to demonstrate this

15. HDL (2002) 51 –Fair for All policy Energising the Organisation Demographics Access and Service Delivery-equity Human Resources-equality in employment Community Development-strengthening communities National Resource Centre for Ethnic Minority Health (NRCEMH) 2002-2008 Major recent achievements in Scotland

16. Major achievements in Scotland 2 • Integration of the equality strands in the Planning and Inequalities Directorate in NHS Health Scotland-2008 • Information-responsibility and funding embedded in ISD: promotion of ethnic coding in routine information systems • Linkage of Census ethnic codes to mortality and hospitalisation databases providing health status by ethnic group • Ethnic Health Research Strategy

17. Six priorities for research-Scottish strategy 1. Ethnic coding of health information systems >80% by 2013 2. Data linkage work is developed 3. Ethnically boosted health survey 4. Coordinated research on major problems 5. Audit of health and social care services 6. Coordinating and monitoring research by Implementation group

18. 1 Mainstreaming minority ethnic health 2 Advocacy and action against racism 3 Appropriate, culturally sensitive, high quality and accessible healthcare 4 Involving people and communities 5 Interpretation and translation services 6 Health and healthcare information for minority ethnic groups 7 Provision of advocacy and facilitation services 8 Training for staff 9 Employment 10 Patient profiling; monitoring of ethnicity http://www.nhslothian.scot.nhs.uk/news/documents/equalitydiversity_strategy.pdf NHS Board level action plans: e.g. main areas of Lothian Health’s plan (2003-2008)

19. Research and surveillance-health status of ethnic minorities in Scotland • Ethnicity not recorded on birth and death certificates • Ethnic coding for: • 5-10% of hospital admissions • 18% cancer registration data • Unknown forprimary care data • 60% of Scottish Diabetes Register • So, unable to assess differences in mortality and morbidity routinely • High-level managerial activity to resolve these problems • So country of birth, name search and linkage methods used

20. Using name search, country of birth, and linkage methods • In Tayside • diabetic care for people with South Asian names had equal care but key outcomes poorer • Compared with those born in Scotland, • all-cause mortality lower among those born in England and Wales, Pakistan, Bangladesh, India (men), China, and rest of world • Linkage-heart attacks much more common in those reporting to be South Asian after 2001 census • More work being done on cardiovascular disease, cancer, maternal & child health and mental health

21. Anonymised Linkage of Health Databases to Census Databases: conceptualising the procedure Health Database Census Database Record Linkage Encrypted CHI Number Personal Identifiers Personal Identifiers Encrypted Census Number Encrypted CHI Number Encrypted Census Number (Look-up Table) Death & Hospitalisation from Health databases Ethnicity from Census http://www.biomedcentral.com/1471-2458/7/142/abstract

22. Directly age standardised incidence ratesper thousand for first AMI (principal diagnosis)

23. A trial for primary prevention of type 2 diabetes in South Asians (PODOSA) Principal research questions • does a family-based weight loss and physical activity programme, reduce the incidence of type 2 diabetes in South Asians? • what is the cost effectiveness? • what factors will lead to greater participation in the trial? • the trial will report in 2013 • pending research results we need service action http://www.podosa.org/index.html

24. Practical activities at service delivery level • Interpreting and translation funded for inpatient and outpatient services (including general practice) • Spiritual services in hospital for every religion-by creating multi-faith spaces and facilities • Food in hospitals – appropriate choices • Trained staff support minority patients and communities (Minority Ethnic Health Inclusion Service-MEHIS) • Several community organisations supported to provide appropriate services • Ideas tested out using specific projects

25. Impact of a cardiovascular risk control project for South Asians (Khush Dil) (JPH, 2007) • Khush Dil - Edinburgh 2002 • Create a culturally sensitive service for CHD/risk factors among South Asians • 140 people had screening-6 months after baseline • Risk factor profiles improved, e.g. reduction in cholesterol, and reported changes in behaviour • Khush Dil had an impact • Extremely difficult to continue funding locally • Eventually, national budgets partially rescued it (Keep Well).

26. Minority Ethnic Health Inclusion Service • 1994 Generic Mental Health Worker • 1999 MEHIP (Minority Ethnic Health Inclusion Project, Pilot) • 2001 MEHIP-Core Service • 2006 Keep Well • 2006 Diabetes & Hypertension Pilot-3 practices • 2008 Khush Dil incorporated into MEHIP • 2009 MEHIP to MEHIS / Mental Health / Keep Well

27. MEHIS Link Worker Model

28. Maternity services-some sensitive adaptations are required. • Polish people in Scotland • Medicalised understandings of pregnancy • Simultaneous participation in Polish and UK health systems • ‘Best practice’ may not be perceived to be so • Past experiences and expectations matter • Educational DVD for staff on the experiences/expectations of Polish migrants • Producing culturally sensitive materials on antenatal screening and diagnostic testing for patients

29. Maternity service projects-some sensitive adaptations are required. • Scottish guidance - male partners welcomed in parenthood education sessions to help reduce inequalities (McInnes, 2005). • Urdu, Bengali and Arabic-speaking women - presence of men was the prime reason given for not attending • A policy to reduce social inequalities can increase ethnic inequalities

30. Equally connected community project • Community development approaches to learn from minority ethnic communities about attitudes to, and experiences of, mental health • Gypsy/Traveller women – collecting individual case-studies and running a programme of exercise and wellbeing workshops.

31. Some obstacles on the culturally sensitive healthcare pathway • Implementation • Insufficient monitoring • Sparse budgets • Competing priorities • Insufficient information • Mainstreaming projects into routine service problematic • Maintaining engagement between the statutory and voluntary sectors difficult • Altering service delivery • Winning hearts and minds

32. Examples of obstacles • People haven’t heard of/read law or policy • Key recommendation of Fair For All HDL-an Ethnic Health Forum within each health board-scarcely applied • Ethnic coding- largely ignored • Training events- attendance abysmal • Practitioners not confident • Patients not served properly

33. One exemplary obstacle-end of life study “Policy directives aimed at improving access to services and standards of care for ethnic minority groups in Scotland are laudable. It seems, however, that end of life services for South Asian Sikh and Muslim patients remain wanting in many key areas”. Worth et al BMJ http://ukpmc.ac.uk/articlerender.cgi?accid=PMC2636416

34. Conclusions 1 • Scotland’s progress incremental, incomplete and difficult, but still comparatively strong • Comparing policies to tackle ethnic inequalities in health: Belgium 1 Scotland 4 • Built on partnership by a government and institutions promoting equality, and justice • Achieved within a strong NHS • Underpinned by research and information • Involving ethnic minoritiy groups and individuals as instigators, leaders, service personnel and users

35. Conclusions in international context 2 • USA: health systems consume vast resources-despite long recognition, culturally sensitive healthcare not achieved • Europe: patchy progress, subject to political change. Progress largely in service delivery, rather than governmental policy. • New Zealand: innovative, and effective work in relation to Maoris- political power and will has been instrumental • Australian work on aboriginal health-challenge has been somewhat overwhelming. • Multi-ethnic countries in Middle East, China, India etc: much to do, but issue seems mostly unrecognised

36. Conclusions 3: the future in Europe • Health systems in our multi-ethnic societies-challenging, interesting, with potential for great advances • Sharing experience across Europe means faster progress. • We must remember our ultimate goal-a healthy society

38. Further reading • Gill PS, Kai J, Bhopal RS, Wild SH. Health Needs Assessment for Black and Ethnic Minority Groups 2002 (online) and 2007 (in print) (book chapter –PDF available online at http://www.hcna.bham.ac.uk/documents/04_HCNA3_D4.pdf • Bhopal RS. Ethnicity, race, and health in multicultural societies; foundations for better epidemiology, public health, and health care. Oxford: Oxford University Press, 2007, pp 357. http://www.oup.com/uk/catalogue/?ci=9780198568179

39. Some URLs for organisations/policies • National resource centre for ethnic minority healthhttp://www.healthscotland.com/about/equalities/raceresources.aspx • Planning and Equalities Directorate integrating equality strands http://www.healthscotland.com/about/equalities/raceresources.aspx • Information http://www.isdscotland.org/isd/5826.html • Fair for All http://www.sehd.scot.nhs.uk/mels/HDL2002_51.pdf • Ethnicity and health research strategy http://www.healthscotland.com/documents/3768.aspx • Lothian NHS boardhttp://www.nhslothian.scot.nhs.uk/news/documents/equalitydiversity_strategy.pdf • MEHIS http://www.saferedinburgh.org.uk/DOSDetails.cfm?ID=75 • Equally connected http://www.healthscotland.com/equalities/mentalhealth/equally-connected • Comparing Belgium and Scotland policies http://eurpub.oxfordjournals.org/cgi/content/full/ckq061)