This report is based on research undertaken between April and July 2006 with Black and Minority Ethnic (BME) Carers and Carers of BME people. The project’s aim was to examine the experiences of carers trying to access local services in Bath and North East Somerset. This research is compared to other local studies and national research.

There are a number of studies that have examined the needs of BME communities and their success in accessing services (Yee, 1992, DOH SSI, 1998, Dominelli et al, 2001 Butt and O’Neil, 2004). This research promotes a clear message. The numbers and proportion of the BME population, although small, will continue to increase. BME people have health and social care needs and these appear at a younger age than their White counterparts. BME communities’ understanding and knowledge of services is minimal and their take up low. The explanation given for low take up has been that BME people ‘look after their own’. The research has shown this idea to be a myth, with less than half living in extended families (Racial Equality Council cited in Yee, 1992).

BME people’s needs are the same as those of other ethnic groups. They are often exacerbated by low income, poor housing, poor health, isolation and the experience of racism. Those Carers of BME people who have experienced racism in the past sometimes find it difficult to use services. Their past experience may bear no relation to the standard of current services. Those carers who have been disappointed by the standard of care they received in the past, should be encouraged to try services again.

BME Carers have reported feeling isolated, having difficulties with communication and accessing appropriate services. The needs of these Carers include advice and information on health, diet, accessing home care  and respite services.

The aim of the research project was to encourage BME Carers to identify the barriers they experienced accessing assessments and services. The report will make recommendations about how to improve access and advance service delivery.

Aims

• To analyse current access to assessment and how this can be improved.
• To examine access to respite/short breaks and carers services locally
• To gather evidence as to the existence of ‘Hidden Carers’ in this group
• To identify reasons why BME Carers may chose not use statutory services
• To establish whether there is a need and or a demand for specialist services to meet the needs of Black or Minority Ethnic clients.

Definitions

There appears to be no widely accepted definition of Black or Minority Ethnic.

Researchers have tended to choose a specific ethnic group to study. This proved problematic in setting the parameters for those who could be included in this study. The Project Worker felt a wide and inclusive definition would produce the richest data.

Therefore, Minority Ethnic for the purpose of this project refers to people from communities in Bath and North East Somerset who may be disadvantaged because of skin colour, race, language, culture or religion.

In preparing to complete this research project it was found that Black and Minority Ethnic people had White British Carers. Additionally, BME carers were supporting White British people.  It was important to include these groups as their experiences have promoted a greater understanding of how BME people access services.

Similarly the project did not want to exclude anyone who identified themselves as a Carer and therefore a wide definition of the term was applied. Carer for the purpose of this project refers to anyone who is undertaking tasks for another individual due to frailty, illness or disability. Carers are often family members, friends or neighbours and caring can include shopping, cleaning, cooking, support to take part in social activities or personal care tasks, such as washing and dressing (this list is not exhaustive). A Carer may live with the person they care for or live elsewhere and visit them regularly to provide care.

The project was limited to Carers of adults.

Methods

This project encompasses the pursuit of personal reasons and experiences and therefore a qualitative approach of semi-structured interviews was undertaken in order to gather the richest forms of data. This gave BME Carers the opportunity to explain their needs and experiences in their own words.

An interview schedule was designed with predominately open questions under the following headings: basic details, needs, assessment process and access, services and support. The interviewer did not stick rigidly to the schedule and allowed discussions to develop as they arose.

Participants were drawn from Carers who were already in contact with Social Services. Attempts were made to reach ‘hidden carers’ via local voluntary and religious organisations supporting the BME communities.

In April 2006 95 Black or Minority Ethnic People were known to Bath & North East Somerset Adult and Health Services. From these, 29 were found to be Carers or to have an informal Carer. It was inappropriate to contact 8 carers because of the feedback received from their Social Workers. (This included carer stress, illness and the death of the carer or cared for person. Some social workers indicated that their work would be jeopardised if the carer participated in the study). Four Carers were unable to be contacted  because their records had not been updated.

Finally, seventeen  Carers were identified and sent information about the project. Letters were followed by a telephone call and from this: four carers declined to take part, one carer agreed initially but later declined, one carer wanted to take part but was unable due to illness and one carer agreed to be interviewed but failed to keep the appointment and was later un-contactable. Ten interviewees were identified by this method.  One BME carer who had no previous contact with Social Services was identified through a local voluntary organisation. The carer agreed to be interviewed. A total of eleven interviews were completed.

Each participant was aware that their contribution was voluntary. A consent form was signed by each interviewee.

All names of Carers and the individuals they cared for have been changed to protect anonymity.

All participants were offered a Carers Assessment. Three Carers Assessments were completed as a result of this project.

The Participants

Carers Ethnicity	Bangladeshi/ Bangladeshi British	2
	White British	3
	Russian	1
	Polish	1
	Barbadian Black	1
	Jamaican British	3
Carers Gender	Male	3
	Female	8
Cared for person Ethnicity	Bangladeshi	1
	Polish	2
	Jamaican/Jamaican British	3
	Russian	1
	White British (Scottish)	1
	Black British	3
Cared for person disability	Older Frail person	5
	Mental illness /confusion/dementia in an older person	1
	Adult with Learning Difficulty	5
	Mental Illness in person aged 16-65	2

N.B. some cared for people had multiple disabilities

Summary Carers Views

Needs

Breaks – Three carers interviewed identified the need to get a break from caring as being important. For one carer this need was being met very successfully via Crossroads.

Mrs Smith was receiving six weeks respite a year. The person she cared for was accommodated in a residential home for their respite. Her feedback was that the process to book a weeks respite was complex. Mrs Smith wanted to be able to contact the home and book the respite care direct. The current process for booking involves contacting the Adult Care Duty Team every time it is needed.

Mrs Yashin had reported that her daughter, with learning difficulties, had been frightened by the prospect of residential care. She identified that respite provided in their own home, would be more appropriate for them. This would have enabled Mrs Yashin to have a few days holiday or go away on business.

All of the other carers interviewed reported that getting a break from caring was not a current need and many would not have wanted to be apart from the person they cared for.  Two carers felt that financial support to enable them to go on holiday, with the person they cared for, would be beneficial.

Financial Support – Was the most frequently reported need identified by carers. Five of the carers interviewed raised this as a need. Those receiving the Carers Allowance felt that the amount awarded did not reflect the time they were spending completing tasks. A carer stated that:

‘I think the Carers Allowance should be more at least as much as incapacity benefit. Looking after my father is more than a full time job and yet other people get paid more and spend all day in the pub. Carers Allowance works out at about £1.07 per hour!!’

Another carer reported attempting to get support for the cost of running his car. He needed to provide transport for his daughter who had a Learning Difficulty and his wife who had arthritis. He was unsuccessful in getting financial assistance.

BME Carers Group –Three participants stated that it would be useful to meet with other Black or Minority Ethnic Carers. They felt that communicating their shared experience of being a BME carer would provide support and encouragement. They concluded that it would help, to be able to share experiences and build informal support networks.

‘I would like a group for Black carers, more likely to open up in a group of Black carers as they will understand issues Black people face. If not a specific Black and Minority Ethnic group then a group of carers for people with learning difficulties would be good as I know I found it difficult to accept the diagnosis and it would help to talk to other people going through the same thing’. 

Planning for the Future – Three BME carers interviewed were concerned about the future. Their anxiety was generated by not knowing what would happen when they were unable to provide the care. These carers wanted to feel reassured that support would continue.  A plan that provided advance knowledge of the support available would be reassuring for carers.  

Assessment

BME Carers reported that accessing assessments was not difficult once they were aware of the support offered by Social Services. Three BME Carers reported that they and the person they cared for could have benefited from an earlier assessment. At the time they did not know how to access one.

Carers identified that people from BME communities often found it difficult to access an assessment. They recommended that methods of access should be advertised widely within their communities. Places suggested were: schools, hospitals, Bath Racial Equality Council, GP surgeries and Social Services.

Many BME Carers described experiences of racism either towards themselves or the person they cared for. Two carers described past experiences of racist incidents not being dealt with satisfactorily. The experiences have left people feeling they can not trust those organisations and similar organisations by association. Many BME Carers feel these experiences could cause people from their communities not to seek help when they need it.

On the whole BME Carers reported that their needs were taken into account as part of the Community Care Assessment. Cultural and religious needs were explored with them as part of the assessment. However, many BME carers appeared to be unclear whether they had been offered a Carer’s Assessment. They did not seem clear about the purpose and benefit of having an individual Carer’s Assessment.  

Services

Ten out of the eleven people interviewed had some experiences of direct services.  Almost unanimously the BME Carers felt that cultural and religious needs were being recognised in the provision of services.

Only two carers had experienced respite services in residential or nursing homes. Mrs Mortaza described her husband having to go into a temporary nursing home placement whilst she was in hospital. The nursing home was unable to provide the food her husband liked and the home was too far away from his family for them to visit regularly. Mr Mortaza didn’t settle very well. If Mrs Mortaza was re-admitted into hospital she would like to have the respite care provided  at home or  in a nursing home near her family.

The demand for specialist services appears to be low amongst BME carers. There was a preference to use mainstream services. Three carers identified that they would like to be able to meet other BME Carers in order to build up informal support networks.

Support

More than half the BME Carers interviewed did not have access to informal support from friends or family. Many BME carers interviewed were not aware of the Care Network.

Support from GP surgeries varied dramatically.  Many Carers identified their GP as their first point of contact for support. The GP had brought to their attention the support services that were available in the local area. However, many Carers also said that they did not think their GP was aware that they were a Carer.

Barriers

The BME Carers interviewed identified barriers that they had experienced and overcome in order to receive support. Written English was acknowledged as a difficulty for many BME carers. Reading documents and form filling was often identified as a problem. However, most had a good command of spoken English. Some BME Carers wanted to improve their understanding of written English. They acknowledged that support would be required to achieve this aim.  Many BME Carers did not appear to be aware that they could ask for documents in other formats. They identified the need for more information to be available in their first language.

Some BME carers recognized that pride prevented people accessing services.  Mr de Freitas acknowledged that this was a common problem experienced by all carers.

Many carers did not know that help was available to support them and thought they wouldn’t be entitled to it.

Previous bad experiences, especially of racism prevented people asking for help.

Recommendations

The majority of the project’s findings are relevant for the provision and service delivery to all carers.

Many of the findings in this research echo those of the Short Breaks Review for Learning Difficulties (Curran et al, 2004) and the Short Breaks Review for the  Physically and Sensory Impairment Service (Respite Care/ Short Break Review Sub Group, 2005).

Information/ Communication –

Inline with the previous recommendation of Short Breaks Review for LD and PSIS this project also concludes that an information leaflet/directory on statutory and voluntary support services for carers is needed. The leaflet would detail who to contact and how to access services. It would need to use language that was easily understood. Images could be used to relay the message of the leaflet. This would make information more accessible to BME carers who may struggle with written English. Additionally, it makes information more accessible for people with Learning Difficulties.

Information needs to be distributed in places that BME carers are likely to visit: schools, hospitals, Bath Racial Equality Council, GP surgeries, Social Services and Religious organisations (this list is not exhaustive).

Stronger links need to be built between the statutory services, the voluntary sector and religious organisations that support BME communities. The Project Worker found that community leaders were not always aware of how to refer people for support. They were not clear about services that may be available to assist Black and Minority Ethnic carers. The short breaks review for LD recommended an annual stakeholders forum to include representation from organisations that support BME communities. These organisations should be encouraged to attend all stakeholder groups.

Social Services staff need to ensure they are offering people the opportunity to have information in their first language or in an appropriate format.

Planning – As highlighted by the Short Breaks review for LD it was found that improved emergency planning is needed. It is essential that care plans include an explanation of how a person’s needs should be met in an emergency.  For example, there should be an action plan available if the carer was admitted into hospital.

Where it is foreseen that a carer is unlikely to be able to continue caring indefinitely, planning should start early to establish how their needs could be met in the future. 

Carers Assessments – Social Care Staff need to promote the purpose and benefits of the Carers Assessment. Many of those interviewed assumed a Carers Assessment was used to access benefits i.e. the Carers Allowance.

Direct Payments – Both Short breaks reviews have highlighted the need to continue working towards the increase in the take up of Direct Payments. This should provide a means of providing greater flexibility and choice.

Respite – Alternatives to residential and nursing home placements for the provision of respite care. Feasibility of providing respite care within peoples’ own homes for emergencies and planned breaks should be considered.

Examine whether the process of booking regularly commissioned respite can be made easier.

BME Carers Group – Consultation with voluntary sector organisations to provide a forum for BME carers to meet. For any group to be successful it will need to be well advertised and consideration given to location.  Carers interviewed for this project would like a BME carer’s group to be held in Bath.

Training and Development – All workers need to continue to develop and build on the good practice that has been evidenced by the findings of the report.

Conclusions

Due to the limitations of this project: time, resources and methods it can only claim to give a glimpse into the needs of BME Carers in Bath and North East Somerset. Therefore, the findings of this report need to be considered alongside those of other local research, national research and current policy.

The decision to include non BME carers was vital to gain an accurate understanding of the diverse needs of BME peoples in Bath & North East Somerset. This project acknowledges that simple definitions that try to map our communities inevitably exclude the contribution that White British people make to our BME communities. The original title does not encapsulate the range of participants interviewed for this project. Further research into this area will need to give careful consideration to the definition and inclusion of its participants.   

Many of the needs, difficulties and wishes of BME Carers reflect the views of all carers. Carers from all backgrounds experience difficulties in accessing a break and often lack knowledge of services and support available locally. Equally the financial cost of caring and of paying for services is a concern for carers of all backgrounds. Generally carers report that organising a holiday and arranging emergency provision is difficult.  There is a desire for more choice and flexibility of service provision. An area identified for great flexibility and choice is the provision of breaks organised within their own homes.

The significant difference between BME carers and White British Carers was the experience of racism. These experiences exacerbate the problems faced by carers. All carers can experience problems understanding the systems of Community Care, but for BME carers this can be exacerbated by language difficulties. The BME carers interviewed indicated that understanding written English can be difficult. They also reported that misunderstandings can occur because of misinterpretation of dialect and language.

Experiences of the assessment process were generally positive. More work needs to be done to ensure BME Carers are aware of their rights  and how to access an assessment. The purpose and benefit of a Carer’s Assessment should be explained to all Carers.   

Very few BME carers interviewed have experience of respite/ short breaks services.  Therefore it has been difficult to assess the effectiveness of these services at meeting the needs of BME Carers.

The Crossroad’s service was working extremely well for one carer and the person they cared for.

It is clear that respite services provided within their own homes is desirable for many BME carers. This would minimise disruption for the person they cared for.

Identifying the existence of ‘hidden Carers’ has been difficult in the short time available.  The BME carers interviewed indicated that it is likely that some BME carers do not feel able to seek help from statutory services.

Barriers to BME carers accessing statutory services have been identified and all services need to work together to build trust and understanding with the BME community.

This project has not identified a need or demand for specialist services beyond the provision of a Carers group or forum for BME Carers.     

References

Butt, J and O’Neil A (2004) ‘Let’s Move on’ Black and Minority Ethnic Older People’s Views on research Findings York: Joseph Rowntree Foundation

Curan, G. Brinkhurst, L. Inker, A. Wood, G. Organ, B. and Hedges, L. (2004) The Provision of Short Breaks for Adults with Learning Difficulties in Bath & North East Somerset  Bath & North east Somerset

Department of Health social services inspectorate (1998) They Look After Their Own, Don’t They? Inspection of Community Care Services for Black and Ethnic Minority Older People Great Britain: Department of Health

Dominelli, L. Lorenz, W. and Soydan, H. (2001) Beyond Racial Divides Aldershot: Ashgate

Respite Care/ Short Break review Sub Group (2005) Report of the Bath & North East Somerset Respite Care/ Short Break Services Review Bath & North East Somerset

Yee, L.(1992) Improving Support for Black Carers  London: Kings Fund

Louise Downes – Carers Research Project Worker