Culturally sensitive health care systems in our multi-

ethnic Europe:insights from Scotland

Raj Bhopal CBE, DSc (hon)Professor of Public Health, University of Edinburgh

Honorary consultant, NHS Lothian

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

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

Core concepts for the lecture

Migration-internal and international Ethnicity Health systems Inequality Inequity

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

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

Ethnicity

The group you belong to, or are perceived to belong to, because of your

culture (language, diet, religion), ancestry, andphysical textures

Ethnicity incorporates race, and country of birth

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

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

Country of birth of mothers of babies born in ScotlandCountry of birth 1991 2007

United Kingdom 63702 51432

EU – pre 2004 countries

770 1100

EU – post 2004 countries

885 2388

Other 2437 3961

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

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?

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

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

Major recent achievements in Scotland

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 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

Six priorities for research-Scottish strategy1. 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

NHS Board level action plans: e.g. main areas of Lothian Health’s plan (2003-2008)1 Mainstreaming minority ethnic health2 Advocacy and action against racism3 Appropriate, culturally sensitive, high quality and

accessible healthcare4 Involving people and communities5 Interpretation and translation services6 Health and healthcare information for minority ethnic

groups7 Provision of advocacy and facilitation services8 Training for staff9 Employment10 Patient profiling; monitoring of ethnicity

http://www.nhslothian.scot.nhs.uk/news/documents/equalitydiversity_strategy.pdf

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

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

Anonymised Linkage of Health Databases to Census Databases:

conceptualising the procedure

Health Database Census Database

Record Linkage

Encrypted CHI Number

Personal Identifiers

Personal Identifiers

EncryptedCensusNumber

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

Directly age standardised incidence ratesper thousand for first AMI (principal diagnosis)Sex/Ethnicity Person

yearsAge

adjusted rate

95% confidence

intervalFemaleNon SA 4,557,730 2.56 2.51 – 2.60SA 24,762 4.86 3.05 – 6.67MaleNon SA 3,905,224 5.00 4.93 – 5.08SA 25,885 7.71 5.68 – 9.75

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

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

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).

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

Patient

Health Professional

Link Worker

MEHIS Link Worker Model

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

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

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.

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

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

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

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

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

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

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

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 board

http://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)