Responding to the Needs of Minority Ethnic Carers Summary - September 2001
The research has found that few services are making specific provision within mainstream services to respond to the specific needs of minority ethnic communities. To describe the services as being guilty of institutional racism is provocative but no amount of literature that talks about the need to ensure that services are provided in an ethnically sensitive way is having any significant impact.
Carers appeared confused about what services were available. Some expressed reluctance to access mainstream health and social care services and voluntary services. The services are seen as inappropriate and bureaucratic. The latter is not peculiar to minority ethnic communities, but the language, religious, gender and cultural barriers they meet make access especially difficult.
A fundamental issue that impacts on the use of services is the ability of staff to respond to diversity, without constantly measuring the minority community with the majority community.
There are resource implications for services. To date, the needs of minority ethnic communities have not been properly met within mainstream services. Those mainstream budgets have been historically allocated and appear frozen. Yet there is no extra money forthcoming.
This is a conundrum, which severely challenges the ability of services to act within the confines of the Amended Race Relations Act (2000) This is now enforceable legislation, which will be used by the Audit Commission and the Social Services Inspectorate when monitoring performance. At some stage, representation may well be made under the Act to the Commission for Racial Equality. Enforcement action could be taken if organisations are not meeting their responsibilities within the General Duty to promote racial equality.
The NHS Plan now recognises that we live in a diverse multi-cultural society (para 2.11). It also states that people from minority ethnic communities are less likely to receive the services they need (para13.8). The latter point has been borne out by the findings of this work.
Services will need to be flexible and prepared to adapt their way of working and current provision to meet the need of this minority ethnic group. The New Carers and Disabled Children's Act could provide the incentive to begin this process, as local authorities are required to reconsider the needs and services to carers in their own right.
'If we can get it right for one individual, we can get it right for the majority' - Tameside Social Services
This summary presents the findings of research undertaken to map the current provision of services for carers of people from the Pakistani population in south Buckinghamshire. In order to understand the needs of carers it was essential to review the provision of health and social care services and how they responded specifically to the needs of a minority ethnic population.
The summary presents the following information:
The report then makes a series of recommendations for improving access to and appropriateness of services.
A key principle of the NHS Plan is that 'the NHS has to be redesigned around the needs of the patient'. The work of the US/UK Collaboration for addressing inequalities in minority ethnic health has shown that a service that starts from a perspective of addressing the needs of its minority groups will move easily to addressing the needs of the majority. Working the other way round, from the majority to the minority, leads to marginalisation and ghettoisation.
A key objective within the research was to identify good service provision and explore what it is that makes that service acceptable. Examples of national good practice where a project has been responsive to the needs of an individual patient or carer have been included in the main report, but not in this summary.
2. Main Findings
2.1 Key Factors Relating to Services
This section of the report outlines a number of common factors that emerged from the interviews with service providers. It is suggested that all these issues have negatively impacted on service provision for minority ethnic populations.
The provision of a professional training for interpreters has improved the quality of the formal interpreter services. Carers using interpreters now feel much more confident about confidentiality.
Staff reported feeling more confident and able to offer a better quality service when they worked with a professional interpreter, as the threat of a professional mistake caused by a language error was eliminated.
However, professionals still act as gatekeepers to the interpreter services. The services, where they exist, are not directly accessible by an individual carer.
2.2 The Professional's Perspective of the Carer's Concerns and Needs.
Some professionals demonstrated considerable understanding of the issues facing people from the Pakistani population using services. But, in the main the following information came from workers who were working very closely with the communities.
2.3 The Carers Perspective of their Situation
Carers from the Asian community like carers from the majority population experience many difficulties as carers, such as recognition, respite and the need for flexible services. But in addition, they also have to face difficulty accessing existing services, have little choice in the services that are available, they frequently have language difference and often have little information about what help is available. All the carers spoken to were women, and for most English was not their preferred language. Loneliness, isolation and stress were all reported by carers. It was quite significant that these women were able to express these views to a 'stranger' and demonstrates the strength of feeling and perhaps despair amongst carers.
3.1 What will make a difference?
Many of these recommendations relate to issues common to all health, social services and voluntary agencies. Solutions for some issues will require partnership, for example on interpreting services.
Many issues relate to the improvement of practice and will need to be addressed under Quality of Service outcomes and Clinical Governance. All relate in some way to the NHS Plan and reflect the views of the SSI for the development of services for minority ethnic groups. Audit and inspection bodies including the Audit Commission will now be monitoring racial discrimination in public bodies when carrying out any of their functions.
3.2 Responding to Specific Needs
The health and social care system is now required 'to shape its services around the needs and preferences of individual patients, their families and their carers', (The NHS Plan). Local NHS action plans need to reflect action to improve access to services for minority ethnic groups.
If people see the services are there for them they will more likely use them and apply for jobs in them. In order to achieve this services need to acknowledge and be sensitive to different needs.
The specific requirements of minority ethnic groups need to be understood and addressed as part of routine service design. Providers need to recognise what makes a service successful. Carers are only using services, which they can easily access and that are flexible in their approach. Other services need to take on the challenge of change and be more flexible. The following issues would help to make the difference.
3.3 Developing Community Capacity
Organisations that attract minority ethnic users in to their services stress the need for greater visibility of staff from minority ethnic groups as this increases the confidence of potential users.
Recruiting staff from the Pakistani community to work as care workers is not an easily achievable task. Nationally, this has been a challenge for many organisations. The successful organisations, mainly those in the Voluntary Sector, have been flexible in the work arrangements (dealing with gender related issues), recruit by word of mouth, and provide support and training for their workers who may previously not have been in paid employment.
With leadership from the public sector there is opportunity to initiate dialogue with members of the Pakistani community to explore partnership opportunities to tackle some of the current barriers in meeting needs eg employment.
There is a need to challenge the traditional orthodoxy evidenced amongst this population. Whilst there is some resistance to change, this is often only the view of male or older members in the community. But if the statutory sector can provide a more flexible service it will help to change this conservative orthodoxy and improve the quality of care. This is a challenging position agencies can find themselves in but the benefits would be significant.
The provision of information via an ongoing and visible outreach programme will help to promote the concept of a 'Carer' to the Mirpuri community. It will also highlight their rights to be supported and the existence of services. By not using services carers and the cared for may be denied rights and choices they are entitled to. This is a challenging task for agencies but a key issue if services are seeking to tackle health and social care needs.
There is a need to support the development of a voluntary sector within this population. Experience from other areas suggests that, with support, a voluntary organisation can become an ideal provider of services. Locally, the Domestic Work Initiative funded by the Carers Special Grant and operated by South Buckinghamshire Carers Centre has demonstrated this.
The concept of volunteering is not a common function in the community. A number of historical factors have been suggested to account for this. A lack of community security and a responsibility to establish financial roots to support families back home. Language difficulties and a lack of understanding of the indigenous community can also account for a reluctance to volunteer one's services. But as the Asian community is undergoing change a middle class community is emerging with potential to take on this role. This is work that could be undertaken in partnership with the REC's and with support from organisations like The Afiya Trust.
3.4 Ensuring Equal Opportunities
There is a need to ensure that all providers have an equal opportunities policy in place that covers service provision as well as employment, and are prepared to tackle discrimination in either employment or service delivery. The Race Relations (Amendment) Act 2000 gives statutory force to the imperative of tackling institutional racism. Within the amendment authorities are now required under a new General Statutory Duty to eliminate unlawful discrimination and promote equality of opportunity and good race relations in carrying out their functions. More specific duties, outlining additional requirements will be published shortly.
Addressing the needs of ethnic minorities and responding to current inequalities will require rigorous compliance with equal opportunities policies in contracts with providers.
Purchasers of services need to undertake direct work with independent and private sector providers to develop their capacity to provide ethno sensitive services. There is considerable experience amongst providers in other areas and opportunity to learn from their ongoing experience. (Further details on this can be found at the end of the report.)
Contracts with providers (statutory, independent and voluntary sector) should require them to demonstrate a commitment to provide for all people in the community equitably, and the mechanism by which this will be put into operation. Basic service standards should include standards for cultural competence. Under the new legislation the duty remains with the public body to ensure that the services are being provided in compliance with the Act.
Operational objectives to increase the usage of in-house and contracted out services by minority ethnic carers/users need to be set and monitored. There is a need to introduce some level of personal accountability from Heads of Departments to ensure that diversity objectives are included in business plans with identified monitoring mechanisms.
The Race Relations Act makes it unlawful for public authorities generally to discriminate in the exercise of its function. In order to avoid doing this unintentionally organisations need to understand the culture of the diverse communities, which they serve. This needs to be targeted at executive board members and senior staff first. This should include training, which enables the services to deliver culturally competent services, and training in anti-racist practice. The NHS Human Resource Framework declared that race and equality training was compulsory for NHS Trust Boards by April 2001. It has not yet happened in Buckinghamshire.
Managers need to be equipped to manage inclusion. Management posts should include the need for competencies reflecting a greater emphasis on leadership and on managing people and services for diversity. Candidates for promotion or new posts need to demonstrate how they will achieve this in employment and service provision. Appraisals need to include evidence of how staff are meeting objectives on diversity.
Key staff working with minority ethnic families/carers need to have their development needs recognised and addressed, as staff from minority ethnic backgrounds can be marginalized into a role defined by their ethnicity.
Ongoing work to promote services to people from different minority ethnic backgrounds. Successful providers are those that maintain an ongoing programme to promote their service to the relevant minority ethnic populations.
3.5 Developing Professional Standards
All staff need to be able to demonstrate that they are applying the same professional standards in every situation. Currently, this is not the case, when professional services are being provided without an interpreter, where English is not the preferred language.
This is the sort of issue that will be seen as part of the obligation of an organisation by the CRE. A key strategic objective for the CRE is to work with the public sector to make full use of new powers under the Race Relations (Amendment) Act 2000 as a driver for change. It will shortly be issuing codes of practice for health and local authorities containing such practical guidance as the Commission thinks fit in relation to the performance by persons of duties imposed on them.
Properly trained interpreters should be available for all consultations/meetings with clients where English is not their preferred language. There is an urgent need to support plans to develop the interpreter service across southern Buckinghamshire. It is also important to ensure that current interpreters have access to ongoing professional development training. Staff using interpreters need to be trained to work with them.
The SSI Report 'They Look After Their Own Don't They' identifies assessors as playing a critical role in ensuring equality of access to services. It urges them to be aware of their own knowledge and skills limitations and where appropriate involve someone else with more specific expertise.
Staff with a flexible attitude could significantly improve the quality of individual patient/client care. Those who are prepared to use their initiative, think about the way a service is currently provided and how it can be improved for individual carers can improve accessibility. Most importantly, they then give clients a sense that the service does welcome them.
Staff need some training to provide appropriate initial information to minority ethnic carers.
There is opportunity to use the expertise of staff working with minority ethnic communities to develop the skills and confidence of all staff. Teams can also share their experiences of good practice thus increasing knowledge of how quality of service can be improved.
Where NHS staff have introduced a more creative approach to appointments, they have identified a drop in DNA's (clients who do not turn up for appointments). Some members of staff use an interpreter to ring their clients on the day or the day before an appointment to remind them to come for appointments. This may initially appear to be a time consuming process but they have found that this has significantly reduced their DNA's. Others organise appointments by the language need of a client and arrange for an interpreter to be available at that time. The concept of patient centred appointment systems is part of the NHS Plan to drive forward quality improvements in patient care.
Ethnic monitoring is an essential process to improve the quality and sensitivity of services to meet the different needs of a multi-ethnic population. All services, statutory, private and voluntary, need to collect service data by ethnicity. Both by overall caseload and by monthly contacts. Services need to be monitored for fairness in service uptake. Data needs to be routinely analysed and circulated so that it is available for use in service planning. This will be a requirement under the Amended Race Relations Act.
Ethnic monitoring needs to be undertaken in primary care and integrated with the development of electronic patient and health records as outlined in the NHS Plan.
As clients and their carers are frequently asked the same questions time and again, services should be encouraged to include information on interpreter need, preferred language and ethnic group within any referral they make to another department / agency.
Staff training in ethnic monitoring will increase understanding and commitment to the process.
3.6 Developing Supportive Relationships
There is a need to ensure that people are consistently offered fair assessment procedures. Assessment procedures are still in use, which disadvantage people from minority ethnic backgrounds. They may be eurocentric and are sometimes undertaken without adequate or no language support for the client or carer.
Whilst there may be a clearly articulated expectation that users and carers are at the centre of the assessment process, it is difficult to see this happening for minority ethnic communities Families need to be involved in the development of the care plan and this needs to be sufficiently flexible for support to be provided in more relevant and appropriate ways.
The family model of care, within which many families operate, may work against the carer and the cared, as it may limit the amount of support accepted by a family. This can place agencies in a very difficult position. Whilst a worker may not feel that the family values are in the best interest of the client, any challenge to this may result in a withdrawal from services. On the other hand the long term interest of the carer and cared may suffer as a consequence of this approach. Agencies need to ensure that appropriate support is available for staff involved in these situations.
There needs to be a constant flow of information out to the community about what services are available and what they can offer. Word of mouth seems to be the preferred option. Primary Care Teams could play a significant role in this area. For example, the Over 75 checks undertaken by district nurses and child development checks carried out by health visitors could be used to increase access to information for carers.
Where a self-referral system is in operation, service providers need to recognise that this process requires self-confidence in order to self-refer. Many people from minority ethnic communities may not have this level of self-confidence, assuming they know the service exists. There is therefore a responsibility on providers to ensure that these barriers are addressed. Within the Health Service this is primarily about improving access to GP's, as most referrals to the Trust come through them.
3.7 Securing Public Involvement / Consultation
Statutory and voluntary sector providers all need to look much more closely at mechanisms for involving users/carers in evaluating services and in the overall quality assurance process. Current mechanisms need also to show how they are getting information from a cross section of the minority communities.
Some professionals perceived that many of those who do decide to use services withdraw after a very short time. This perception needs to be tested out.
A communications strategy between the communities and the public and voluntary services needs to be developed.
User feedback assessments need to demonstrate how the views of minority ethnic groups have been sought.
Informal and more personal methods of consultation are recommended to identify what is good/bad service, and how services should be developed. For example; -
Professionals (particularly link workers and development workers) working closely with minority ethnic communities can play a key role in advising on service development. They have a very full understanding of their clients needs and can act as a proxy for more formal public involvement with communities.
More formal comunication with South Buckinghamshire Carers Centre and other projects successfully providing services to clients and carers will provide a useful source of reliable information.
The Carers Centre can also facilitate direct contact with carers, it is suggested that the process is managed as advised by the Carers Centre.
Individual services could increase contact with parents and carers to get their views and encourage their involvement. This will ensure that carers from minority ethnic groups are not seen as a homogenous group. This will require an appropriate use of interpreters.
Developing the capacity of existing advocacy services (and the proposed PALS Scheme) to advocate on behalf of the minority ethnic population more visibly will provide a mechanism for monitoring the impact of current or proposed policies.
It is anticipated that the monitoring of proposed and existing policies will be required under the specific duties of the Race Relations Act and consultation responses published. These consultations processes will need to be meaningful and effective.
© Copyright Gráinne Suter - jml Training & Consultancy September 2001
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