Mental health: ethnic minority carers’ experiences

Carers advice for support and information services

Many carers said services have improved over the years. There is still, however, some way to go, and for services to meet the needs of carers better, the overall advice was 'listen and learn from carers'.

'Care better for carers'
Some said that gaps in services meant some carers wear themselves out and get ill. Some had felt unprepared for becoming a carer and said it would be very helpful, particularly for new carers, to get practical advice on how they could handle things on a day to day basis. People sometimes felt unsure about 'am I saying the right things? Am I actually making him worse?' They said it would help to have someone to reassure them about the things they did well, while also helping them learn new skills.

Carers advised support services to listen to individual carers to find solutions that suit their situation, rather than a 'one size fits all' approach. Cultural awareness training can help services to be more aware of the different needs of different carers. The other kinds of things people said could help carers included:

  • A counsellor or person for carers to talk to about their feelings.
  • More activities and support offered from community centres and voluntary organisations, especially those offering culturally appropriate services.
  • Easier access to translation services, for example via the internet, so people don't have to 'run around searching for it'.
  • Breaks and respite that suits the individual's situation.
  • Someone to 'stop by' and check on their relative when the carer is at work or away.
  • Workers who could reduce the responsibility for medication that many carers now have.
  • Help with household chores for carers suffering ill health themselves.
  • Regular checks of home carer services by social services.
  • Free travel passes and other ways to overcome barriers to using services.
  • Priority for housing that allows carers to have space to themselves in their own home.
  • Increased financial support for carers.

Information needs
People agreed that getting the right kind of information was essential for caring properly. Many felt they had not been given what they needed when they needed it. Some had found information themselves via libraries, voluntary organisations or the internet. 

One carer said she had by chance spotted a poster about a voluntary organisation and this had been the key to her and her husband getting the help and support they needed from the local African-Caribbean mental health team. People agreed that this kind of information should be given to all new carers because it is 'impossible to know what is out there.'

Carers gave advice about how best to provide information to carer:

  • There is 'masses of information out there' about medication and treatment, (especially on the internet) and health advice keeps changing, so a credible resource needs to 'show us what to trust'.
  • In a crisis, people are less likely to take in information properly, so it is important that carers are followed up to make sure they know how to handle the situation they are in.
  • Good sources of information are: the GP and psychiatrist, social workers, community centres, Temples, Mosques, Churches and other places of worship.
  • Information should be simple and available in different formats and languages. DVDs and leaflets work for some people and are good because carers can take them home and think about it. However, others need one-to-one sessions with support workers.

Many said that carers' information packs should be available for new carers in different languages and formats, and should include things that are difficult to find elsewhere like:

  • Clear information about what a carer is, what support carers can get, and what rights they have to Carers' Assessments, Carer's Allowance and respite services.
  • Information about local services for carers and people with mental health problems, and especially those tailored for different ethnic groups.
  • The stories of other carers to show that carers are not alone and how others deal with things.
  • Information aimed at carers about different mental health problems, medication and side effects, and how sectioning under the Mental Health Act works.
  • Information aimed at carers about the mental health service, including care plans and how carers can be involved in services.

Suggestions for mental health services
Several carers had to chase up a wide range of people dealing with the health, social services and housing of the person they cared for. Instead of having to 'run from one place to another', people said it would be better if they could deal with only one person or agency, who would liaise with all the other services involved. Others, who were in contact with a local Mental Health Team felt they had such support from the key worker, at least to some degree.

Other suggestions for making the mental health service better included:

  • Making it easier for carers to talk to doctors and other professionals.
  • Longer and more frequent consultations to allow proper discussion of complex problems.
  • Continuity of staff to help build better relationships.
  • Regular meetings or reports from psychiatrists and other professionals involved in the care of the person they care for.
  • More family therapy and family involvement in treatment.
  • Culturally appropriate services as the norm.
  • Easier access to 24 hour support services during a crisis.
  • A mediation service that can deal with conflict between carers and services when emotions run high.
  • Proper reviews of prescriptions to avoid over-medication.
  • A stronger focus on 'warmth, love and encouragement' in interactions with people with mental health problems.
  • Easier access to psychotherapy and other 'talking therapies' as well as spiritual care.

Last reviewed June 2015.

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