Advocacy for Refugees and Asylum Seekers Literature Review

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ANNEX 1

ACCESS TO HEALTH SERVICES BY MINORITY ETHNIC GROUPS ADVOCACY FOR REFUGEES AND ASYLUM SEEKERS LITERATURE REVIEW

This review covers literature within the following themes:

• Advocacy

• Language usage

• Health of ethnic groups

• The 2001 Census, health and immigration

• The new Choice Agenda in the NHS

• Understanding minority ethnic communities

Advocacy

1. Building Bridges for Health – Exploring the potential of advocacy in London, Baljinder Heer, King’s Fund working paper, December 2004

This working paper is part of Putting Health First, a programme of work set up by the King’s Fund to explore the idea of a health system that gives priority to promoting health and reducing inequalities as well as delivering health services.

Disadvantaged individuals and groups need effective ways of linking into such a system to ensure they receive the best possible health maintenance and care. We believe that one way of doing this might be to create a stronger cohort of community based advocates to help disadvantaged and socially excluded groups again access to the knowledge and means to secure good health.

An advocacy standards framework for BME communities was developed and published in March 2002 and has been used by NW London StHA and Croydon PCT.

2. A Standards Framework for Delivering Effective Health and Social Care Advocacy for Black and Minority Ethnic Londoners, Rukshana Kapasi & Mike Silvera, March 2002, funded by the King’s Fund

This is a very detailed report about setting standards for the development of advocacy services for this group of people.

3. Health Advocacy for Minority Ethnic Londoners, Mike Silvera and Rukshana Kapasi, November 2000, King’s Fund

Vulnerable people can be intimidated by the bureaucracy of statutory services, feeling powerless and voiceless. Health advocacy – using spokespeople to help community members to get their views across – is an essential tool in making sure the voices of disadvantaged people are heard so that everyone can access the services and support they are entitled do. But advocacy remains a marginalised and under valued activity that is low in status compared to other health and social care professions. This publication reveals the findings of the first ever mapping of the interface between NHS service and patients from BME communities across London, including refugees and offers recommendations for improving services.

4. Health Advocacy - views of workers and volunteers in London, King’s Fund, July 2005

“The Government’s current emphasis on patient choice and personalisation aims to ensure that people have more opportunity to make choices about their health and social care. But vulnerable people can feel intimidated by statutory services making them feel powerless and voiceless. As a result, the people in greatest need often receive poorer services than those who are more articulate and able to make clear demands.

Advocacy is a way or making sure that the voices of disadvantaged people are heard, so that everyone is included in mainstream provision and can access the services and support that they are entitled to.

The Government is taking an increasing interest in advocacy. Advocacy has featured in a number of its recent strategies including the 2001 Valuing People white paper for people with learning disabilities, new requirements for advocacy for children in care and children with special needs and NHS reforms across England and Wales introducing advocates for people making complaints about the NHS.

The report goes on to describe work at Croydon PCT where bilingual advocates are employed by the Local Authority

5. Action for Advocacy – Advocacy charter listing key elements of advocacy

6. List of advocacy services in the 33 London Boroughs

Kingston – Age Concern Kingston & Kingston Advocacy Group

Advocacy Partners, based in Sutton, is used by Richmond, Merton, Croydon & Sutton.

7. Protocol for PALS and Independent Advocacy Joint working, Kings College Hospital and NHS London Regional Office, January 2002

This draws helpful links between PALS services and advocacy.

8. Newham PCT – Health Advocacy Service

Supporting people whose first language is not English in Primary Health Care. The advocate acts on your instructions and can attend meetings with you to help you plan and speak up for yourself. Advocates can accompany you to GP surgeries, community health services and other meetings with health professionals. They can support you to access information on aspects of your care and treatment and access health services.

9. Information, advice and advocacy for older people – defining and developing services, Andrew Dunning, Joseph Rowntree Foundation, 2005

Whilst this report is aimed at older people much relevant background information is reviewed. For example since the early 1990s the government has increasingly recognised the significance of information, advice and advocacy services. Legislation and policy in health and social care have begun to make explicit rights and reference to such forms of support.

The NHS and Community Care Act 1990, Disability Discrimination Act 1995 and Carers (Recognition and Services) Act 1995 and Health and Social Care Act 2001 have placed duties on health and local authorities to provide information. Policy developments have sought to augment the availability of advice as well as information service thorough initiatives such as the Community Legal Service, PALS, NHS direct and Care Direct pilots.

The legislative and policy framework for independent advocacy is just beginning to develop. This includes the Health and Social Care Act 2001 which introduced a statutory right for all users of the NHS to access Independent complaints Advocacy Services, the support for the establishment of a range of independent advocacy schemes for people with learning disabilities and the proposed introduction of specialist advocacy for people detained under the mental health legislation.

PALS – aim to provide services users, carers and families with on the spot help and accurate information about the Trust’s services and other health related issues and support to resolve concerns quickly and effectively within the Trust. PALS are also intended to act as a gateway to independent advice and advocacy support from national and local sources including ICAS.

ICAS offers free independent confidential support and information about complaints procedures plus assistance in letter writing support at meetings and listening and acting on behalf of patients. ICAS is an independent body.

Care direct pilots were established by government to provide older people and carers with information about and access to social care, health housing and social security. It was intended to be made up of a telephone helpline staffed and managed by NHS direct and in each local authority area a local help desk and assistance provided by volunteer befrienders with access to independent advocacy if needed.

It lists the following descriptions: • Self advocacy – representing your own needs wishes and interests • Collective advocacy – self advocacy groups and organisations providing mutual support, skill development • Peer advocacy – where one person advocates on behalf of another who shares a common experience difficulty of discrimination • Citizen advocacy – one to one, long-term partnership with a disadvantaged partner. • Volunteer advocacy – independent and unpaid short term case work • Paid advocacy – as above but paid • Professional advocacy – may refer to partial advocacy role of staff in health, social care etc. • Public advocacy – organisations campaigning on behalf of a group or collective issue • Legal advocacy – undertaken by trained lawyers

Other descriptions: • Approach – personal advocacy and case work advocacy • Issue – complaints advocacy • Condition – e.g. mental health advocacy, dementia advocacy • Capacity – instructed advocacy and non-instructed advocacy

10. Are you listening? Current practice in information, advice and advocacy services for older People, Mariotta, Raynes, Pagidas, Lawson & Temple, Joseph Rowntree Foundation, 2003

Although this research is aimed at older people it provides a useful overview of the need for advocacy. It also recommends that: • Further research should be carried out into the efficacy of information provision especially in regard to MEGs • Health and social care practitioners should receive training about advocacy and the role of volunteer advocates and • Calls for national standards and codes of practice with guidelines for recruitment, training and supervision of volunteers.

11. Mental Health Advocacy for BME users and carers, Joseph Rowntree Foundation, March 2002

Overall the team found that services were very underdeveloped and the needs of these users were overlooked. Main findings included:

• BME users and carers felt most empowered when they had an advocate reflecting their culture, gender and ethnicity. • Where mainstream advocacy services existed, they were inaccessible and often inappropriate to the needs of black service users and carers • Users and carers were dissatisfied with mainstream mental health services • Some black service users and project workers especially those providing services for South Asian communities believed that interpretation is a necessary component of advocacy. Others agreed that interpretation and advocacy share the aim of improving communications but saw them as distinct services • Lack of awareness and understanding of the word advocacy contributed to low uptake.

12. Sharing Stories: complex intervention for diabetes education in minority ethnic groups who do not speak English, Greenhalgh, Collard & Begum, BMJ 19 March 2005

This study used trained bi-lingual advocates to lead and support education groups for people with diabetes using personal stories as raw material for learning and action. Findings suggested that positive outcomes are not principally achieved through the acquisition of knowledge by providing a forum in which participants can negotiate the meaning of knowledge and by prompting action. Knowledge was repeatedly discussed, reframed and challenged by the group and only then made meaningful for the participants.

Language Usage

13. Why the next census needs to ask about language, Peter J Aspinal, BMJ 13 August 2005

Estimates of the number of people in England who have difficulties with the English language vary from 0.4M to 1.7M and surveys show that 16% of Bengalis, 44% of Gujaratis, 29% of Punjabis, 41% of Chinese and 32% of refugees would reach a survival level of competence. Unmet language need is on of the key drivers of social exclusion, barriers to unemployment, education and training and inequity in access to service. Information on this area is therefore urgently needed to plan interpretation and translation services and the delivery of culturally competent health care. Although the 2001 census asked about the main language spoken at home it did not ask about ability in English.

Health Needs of Ethnic Groups

Looking at health of ethnic groups helps to raise general understanding of specific health needs and begin to tailorise services to meet these needs and to be accessible so that these particular illnesses can be treated.

14. Medical Needs of immigrant populations, Shahid Anis Khan, Partha Ghosh, BMJ, 20 August 2005

In the UK the over the past decade the ethnic minority population has grown by 53% and now comprises 7.9%. South Asians the largest group now number 2.5M and account for 50% of the EMGs. South Asians have the highest rates of coronary heart disease, diabetes, hypertension, stroke, hip fractures and renal failure

15. Health Survey of England 2004 - Health of ethnic minorities

• Prevalence of angina and heart attack was highest in Pakistani men and Indian men and women and lowest in black African and Chinese. Nearly one third of Pakistani men have angina compared with 13% in the general population • Prevalence of heart attacks and strokes is much higher for Pakistani men and women than the general population. • Prevalence of doctor-diagnosed diabetes was significantly higher in Black Caribbean, (10% for men) Indian (10%) Pakistani (7.3) and Bangladeshi (8.2%) (less in each case for women) and higher than in the general population

2001 Census Data

16. Health and the 2001 Census, SWL STHA and PCTs

Many studies of health in BME communities have reported higher incidence of illness than in the British white community. This is probably partly due to different cultural beliefs and perceptions of illness, although research has shown different patterns of illness such as diabetes and heart disease amongst people from the Indian sub- continent.

The SWL Pakistani and Bangladeshi groups had the poorest self reported health, with women in those groups being as twice as likely as the average to report their health as not good. The next poorest health was reported in the Indian, Black Caribbean and the mixed white, black and black Caribbean groups. People in the Chinese and Black African groups rated their health the best with the lowest rates reported by black African men. Pakistani and Bangladeshi groups also had the highest rate of limiting long term illnesses.

Genetic and cultural differences are key determinants of health

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1991 census and 20001 census data are not directly comparable due to different ethnicity classifications.

All boroughs in SW London have a higher proportion of BME groups than for England and Wales. The highest proportions of non-white communities are in Croydon 30%, Merton 25% and Wandsworth 22%. The lowest proportions are Richmond 9%, Sutton 11% and Kingston 16%.

Understanding the locations of ethnic communities is important so that services can be planned to meet the needs of residents and consider factors which can influence the access to services such as interpreters and female doctors

Information on country of birth provides important additional information. Immigrants will often need different services from people born in the UK regardless of ethnic group. Although many people from ethnic minorities are fluent in English, others have language difficulties when dealing with statutory agencies. Data on country of birth can help determine future provision of interpreting services.

This report also includes a number of demographic tables and provides data for the South West London Boroughs – Croydon, Kingston, Richmond, Sutton Merton, Wandsworth plus London and England and Wales.

Whilst Croydon has the highest proportion of people from minority ethnic groups, it is the second lowest for the number of people who moved into the area from outside the UK in the 12 months prior to the census. Kingston and Richmond, who have smaller proportions of minority ethnic groups both had a higher proportion of people moving into the borough from outside the UK. The Census data reveals that for Kingston 2,749 migrants moved into the borough from outside the UK and 999 were from ethnic groups other than white. We have no information about country of origin at a local level although this is available nationally. There is also no information on language.

However, in terms of providing services for new arrivals on perhaps an annual basis, a proportion of whom may have English as a second language; this indicates a level of need which requires consideration.

Croydon Kingston Richmond Sutton Merton Wands SWL E&W % MEG 29.8 15.5 9.0 10.9 25.0 22.1 20.5 8.7 %Moves* 0.9 1.9 2.4 0.6 1.9 2.4 1.6 0.7

* People who moved into the area from outside the UK in the 12 months before the Census as a percentage of the total borough population (or SWL or England and Wales).

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The Choice Agenda for the NHS and Implications for Less Advantaged Groups

17. Nanny or Steward? The role of government in Public Health, Karen Jochelson, King’s Fund Working Paper, October 2005

This report suggests that stewardship may be a more appropriate term to understand public health interventions that governments use to shape behaviour. It also highlights that economic insecurity, social isolation and lack of optimism about personal health and future prospects make it more difficult for individuals from disadvantaged backgrounds to make positive health choices and change lifestyles.

18. Public Views On Choices In Health And Healthcare – A Qualitative Study, Rebeca Fosen, Natasha Curry and Dominique Florin, King’s Fund, 2005

Extending patient choice is central to the government’s reform of the NHS. Patients will be offered a choice of hospitals for planned operations from December 2005 and will soon be offered choice in other areas of health care. This paper presents key findings from ten focus groups held to explore public views about choice in health and health care and aims particularly to describe attitudes to choice among people living with a long-term condition. It concludes with a discussion about the implications of findings for emerging policy. The findings will inform the design of a larger quantitative survey about choice to be conducted towards the end of 2005.

Findings are grouped under 5 themes:

1. General attitudes to choice 2. Recent experiences of choice in health and health care 3. Future choices in health and health care 4. Professional support and information for choice 5. Choices about long term conditions.

Theme 4 – the majority of focus group participants felt that they did not have access to sufficient information to allow them to make choices

“only if we have more information to make these decisions (do we want more choice). They have a lot of specialist knowledge in that profession and without that specialise knowledge you can’t make an informed decision and it is a massive responsibility for us to make our own decisions and not know what we are doing.”

Most people cited their GP as their principal source of information, with most relying completely on the GP or consultant to provide the information they need. In addition there was a significant group of people – usually though not exclusively, older – who said they would not know where to go to obtain more information.

Some said they would feel comfortable using the internet, medical journals and PALS to access information to support their choices but there was marked variation in people’s level of confidence in seeking out information for themselves. A12

Where people had experienced a choice of hospital or procedure, most had relied on word of mouth to judge the reputation of a hospital, along with GP advice rather than undertaking any internet-based or other research themselves. The experiences of family and friends along with information available in the media appeared to have mot influence on the choices people made.

Although most participants were keen to access more information they still emphasised the important role of the health care professional. A clear message from all the focus groups was that information on its own is not sufficient and that there cannot be more choice without better means of interpreting it. Informed advice was seen as key to the effectiveness of the choice agenda

Some people thought that some sort of advocate working between the GP and themselves would have enough time and an understanding of the patient’s personal circumstances to help them make the optimum decision.

19. Equitable choices for health, Joe Farrington-Douglas and Jessica Allen, Institute for Public Policy Research, 2005

Patients from minority ethnic backgrounds have worse health outcomes than the rest of society. One factor compounding health inequality is language barriers. As more choice is offered in the NHS it will become increasingly important to ensure that information and communication is available in a range of languages. NHS direct has made a framework agreement with a universal written and spoken translation and interpreting service that NHS organisations can commission. This needs to be used by PCTs to help communication throughout the care pathway.

The specific choice needs of minority ethnic patients also need to be met and greater access to advice and advocacy including translation and interpreting. The report describes current work underway to improve interpreting services for health by voluntary organisations e.g. CEMVO and FaithRegen.

(Review of this book incomplete as recently received).

Understanding Minority Ethnic Communities

20. Black Families Survival Strategies: ways of coping in UK Society, Social Policy Research, November 1997

This paper summarises a project which listened to individuals and groups of African, African-Caribbean, Bangladeshi, Indian and Pakistani respondents in London and Luton discussing the ways in which they coped with exclusion and other difficulties in British society. This study went beyond the problems and looked at how people developed positive ways of life. Some of the key findings were:

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• People preferred where possible to solve problems for themselves or within their families and to not use statutory and mainstream voluntary family service provisions • Holding on to their own cultural identity and values enabled them to cope better with most problems • Those who had tried to adopt UK values had been more vulnerable to confusion over their cultural ideates

Marian Morrison Health Scrutiny Project Officer 8 January 2006