Fact
File 
Responding
to the Needs of Minority Ethnic Carers Summary - September 2001
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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
1.
Introduction
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:
-
Issues relating to the provision of services to a minority ethnic population.
-
The professionals' perspective of the carers needs.
-
The carer's perspective of their needs.
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.
-
Whilst there is an awareness that the needs of dependants and their carers from
minority ethnic communities need to be addressed, the response is reactive rather
than proactive. The pursuit of diversity and equal opportunities does not rest
with other priorities on the agenda. There are no coherent organisational strategies
for improving services to people from minority ethnic communities. Improvements
in service provision appear dependant on concerned managers within a service taking
the initiative.
-
Despite numerous reports, from different agencies over time highlighting unmet
needs and recommendations for action, some service planners still seem unaware
of what is deemed as appropriate service provision or unconfident in their ability
to develop services for minority ethnic people in the planning process.
-
Some providers feel that they are making efforts to adapt to meet different community
needs, but that there is no reciprocal response from the communities. This can
develop into 'they ought to be grateful, look what we are doing' mind set which
can permeate a service or organisation. Thus minority ethnic people are labelled
as deviant, as their behaviour does not fit in with the accepted way of 'doing
things'.
-
Staff
shortages, due to recruitment and retention problems, are critical in some organisations,
and the demands on individuals remaining are considerable. This impacts on service
planning for minority ethnic needs as this area is seen as problematic and difficult
to tackle.
-
Where
changes are being made to services, their impact for minority ethnic carers needs
to be considered. For example, it is increasingly common for carers of patients
with diabetes to be asked to give them their insulin. Some minority ethnic carers
are not comfortable with this, they are concerned that should the patient die,
the carer (his wife) will carry a stigma in the community "she didn't want to
look after him".
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.
-
The
use of bilingual staff, pulled away from their work to translate for patients
was reported. Assessments, which are done in this way, cannot be comprehensive
nor can they provide the dependant and carer with the service they are entitled
to.
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.
- The professional
model adapted by health and social care services is a client centred model of
care. This may create a cultural clash where families operate within a family
model.
-
Reported changes in family structures and lifestyles would indicate that it is
no longer the case that there are always relatives to provide support and care.
This challenges the still widely held stereotypical perception that 'Asian families
look after their own'. Parents of children with disabilities are expressing concern
about what will happen to their children after they die if relatives do not want
them.
-
The responsibility of caring for frail elderly or disabled adults lies almost
always with the women in a family and often the daughter-in-law. The difficulties
of this situation can be compounded by the insensitivity of male members of the
family to the needs of the women carers.
-
Many Asian people do not perceive themselves as "carers" in the Western meaning
of the word. As far as they are concerned, they are just looking after a family
member. They can therefore lose out on welfare benefits and support, if a welfare
assessment is not provided by a well trained professional who is aware of this
difference in cultural perspective.
-
Workers report that there is little flexibility in the way current services are
provided, so families who do not "like to make a fuss" may well decide to do with
out.
-
Some families on low incomes where there is only one earner and many dependants
see benefits as an income and are not in a position to use this 'extra money'
for 'comforts' i.e. paid practical help within the home.
- The concept
of day care is not acceptable to some people from the Pakistani community. It
is perceived as abdicating "responsibility " to someone else.
- The role
of day care is a misnomer to some people in the Pakistani community, as it is
perceived neither to educate nor rehabilitate.
- Some people
feel there is a stigma associated with attending a day centre. Families feel this
may label them negatively within their community.
- However,
some carers who would otherwise use day care services were disinclined because
the service would not be able to provide for the dietary, cultural and linguistic
needs of a family member.
- Fear of
racial discrimination from staff or other users of a day care facility was also
expressed as a reason for not using a service.
- Respite
care usually includes an overnight or weekend stay away from the family to give
the carer a break. But for the communities in Wycombe and Chesham, their preference
is for help within the home, within the structure of the family.
- Some carers
of children with disability have expressed anxiety about the safety of their child
in a day care situation. Anxiety about sexual abuse is not uncommon.
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.
-
Some of the carers, particularly those who were less educated, felt very guilty
about accepting external help with the caring role. However, if this help were
provided in a more appropriate way it would help to breakdown those barriers.
-
The appearances of day care centres was criticised, 'they needed to be more home
like', one carer described a centre as looking a bit like a prison. This only
increased carer's guilt if they used them.
-
One young woman with children reported that her mother had a month's stay in Amersham
Hospital after a fall. She spent each day there, often till about 10.00pm at night,
as there was no one who could communicate with the mother. Regular interpreter
provision did not appear to be available
3.
Recommendations
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.
-
Residential care, which meets the religious, cultural and dietary, needs and there
must also be other people of the same ethnicity and language around.
-
All services should be able to offer access to interpreter provision. Clients
should be able to directly access the interpreter services. Arrangements need
to be in place for 'out of hours' cover. This is a key issue, as many of the problems
that arise appear to be associated with poor communication.
-
Carers would appreciate information about the illness, what to expect, what to
do, and what to look for and information about the medication. This, it was felt,
would help to reduce the sense of powerlessness experienced by some carers.
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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