A4 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. A5 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. A6 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. A7 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. A8 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