Mental health: ethnic minority carers’ experiences

Support from carers' services

Carers' services 
Many voluntary, community and statutory organisations provide services which can make life easier for carers. Some carers had been recommended to use these kinds of services by health professionals, counsellors, or friends. Others had found such services themselves. 

Several carers commented that many more services exist today than when they started caring many years ago, including services for younger carers and things like free travel passes.

Services and activities for those who are unwell can give carers some free time, and lighten their responsibilities. Also, having the backing of a carer's organisation can be helpful when trying to sort out things for the person who is unwell.

Some carers got one-to-one counselling sessions. Others were supported by carers' support workers. One woman said the support she got from her carers' support worker in a local voluntary organisation was “much better than the NHS” because it was available when she needed it and was more likely to offer culturally appropriate services (see 'Services and minority ethnic communities').

Those who attended support groups took part in a wide range of helpful activities, such as artwork, trips, and sport and relaxation activities. Such activities were enjoyable and provided 'time out' from tension and worry.

Others said drop-in services were particularly good for carers because they are flexible. Some attended computer courses or other training courses while others got help with translations, filling in forms or writing letters, and more general help to 'understand the system'. 

'Sitting services', where someone comes to be with the person who is unwell so the carer gets some time to him or herself, were very useful to several carers. 

Longer term respite services are also available for some. But some found it hard to enjoy themselves when leaving their loved one in a hospital or care home. Several of those caring for someone with dementia worried about the quality of care in these homes.

Carers' support groups
Many voluntary and community organisations (and some statutory agencies) run support group for carers. People had positive experiences of support groups and many attended every week. Some attended a carers' group while the person they cared for went to a service user group at the same centre.

In these groups, people were encouraged to share their experiences and feelings, and some said it made them feel that they were 'not alone.' They felt stronger and they also got new ideas, tips, and sympathy which, they said, made them better carers (see 'Getting the balance right'). 

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Some support groups were for people from particular ethnic communities, which meant people could use their own language. In other groups, some needed a translator to take part fully, and when this was not available, it could be difficult to understand others. 

Most hospitals and GP surgeries now have a list of interpreters who can be contacted to come to an appointment. There are a number of telephone translation services that doctors use. It is hoped with these services people will have fewer problems understanding and talking to doctors.

Barriers to using carers' services
Because of their circumstances, it difficult for some carers to use the different carers' services. Not all services exist everywhere in the UK and some places have more services than others.

Some carers didn't use support groups or carers' services because they didn't have enough time or energy for it or because travel was difficult. One or two felt that they didn't need them.

One carer found a support group 'depressing' because it reminded her that she might have to continue to care for the rest of her life. Others said they hadn't used services because people from their backgrounds were 'expected to be strong' and manage without support.

Some had simply never been offered any services and didn't know what was available. Some said procedures were too complex (this comment was in relation to statutory services) or that the services were not culturally appropriate (see 'Services and minority ethnic communities'). 

A service's catchment areas can sometimes make continuity of services difficult. One woman, for instance, could use a patient liaison service while her father was in a general hospital, but when he was moved to a psychiatric hospital managed by a different Primary Care Trust, this was no longer possible. 

Another carer, who works as a mental health nurse, found it difficult to find a support group where she could receive advice rather than just give it. 

Others said that services, especially those offered by statutory organisations, are not flexible enough, “not there when you need them”, and that when there is a crisis, a waiting list, “is no good to me”.

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When dealing with a mental health crisis, emotions run high. One carer said she had 'fallen out' with several support services during times of crisis and thought that a mediation service should be available.

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Last reviewed September 2018.

Last updated February 2013.


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