Mental health: ethnic minority carers’ experiences
Becoming a mental health carer
What is a 'carer'?
A carer is someone who provides unpaid help and support to a family member or relative, partner, friend or neighbour who needs help because of their age, physical or mental illness, addiction or disability. Families and friends have always helped each other in this way, but in the last couple of decades, services have started to use the word 'carer' to refer to the person who gives such help.
The contribution carers make is now part of the government's policies. Carers save the government an enormous amount of money by doing what they do. In return, many carers can claim a Carer's Allowance, and most carers have the right to a needs assessment to see if they need any other support, such as proper respite or holiday (see 'Carer's assessment'). There are several laws about carers' rights and how they should be supported. But many carer organisations think carers need more help, and the people we interviewed agreed.
Caring for someone with a mental health problem can be particularly challenging for many reasons such as:
- Difficult behaviour or changes in the unwell person
- Finding support that suits carers and the person cared for
- The attitude others have to mental health
- Information sharing with professionals because of patient confidentiality
- Being a carer and from a minority ethnic community can mean people face discrimination or have difficulty in getting their cultural needs met.
This page explains what it was like when people first began caring for someone.
'I didn't know I was a carer'
Many languages have no word for 'carer' the way it is used in the UK. Many of the carers said that at first they didn't know what being a carer meant, or they didn't think of themselves as carers. Some had only come across the word 'carer' once they got in touch with services, and for some that had taken many years - even up to 20 years.
It had helped some to be told that they were a carer and could access support and services.
Aiko was helped by a support worker and searched the internet to understand what 'carer' meant.
Well when that, when first the time I heard the name, "oh Aiko, you are a carer", first time I actually looked into dictionary what that really means, although I could imagine what that means, I didn't, my, just to, I didn't register the actual situation in this country, 'carer', what really it means to people. And also I didn't think mental health issues, it would be so, how can I say? -A huge problem for people. But on the other hand it's been recognised and there is a treatment, and the support, but all the things I had no idea I could get. But because Jim was out of work, and he wasn't, wasn't able to go to work, we had to claim for benefit, but that was really chaotic. And the local, sort of a benefit support agent, one of their advisors said, Aiko you are a carer because your husband is receiving benefit, and he's got a psychiatrist, he's waiting for treatment, so that means you are the carer, you are looking after him. Yeah, and then I then started looking for some support for myself. I think the advisor gave me some information, which related to this carer's support service. And then I made contact a few month later. And things sort of started opening a lot clearer. And then I made lots of questions but also I didn't know what to ask still what 'carers' means. It's, 'carer' is one word but then it has got so much different meanings, and individuals has got different lifestyles, and circumstances, and diagnoses are different. I was still confused actually after I was said you, “Aiko, you're a carer”, I was really confused again even more. I think I was doing a lot of research by myself. Luckily we had a computer always at home, just keep typing and research.
Knowing how to care for people with mental health problems
People said there was a lack of information and preparation for becoming a mental health carer. Before becoming a carer, many had known little about mental illness. Some had 'wrong perceptions' about mental health problems, for instance thinking people could just 'pull themselves together' if they wanted.
Jane felt distressed and had no knowledge of schizophrenia when her daughter was first diagnosed ...
Kiran did not know about depression and didn't know where to look for help other than medicine ...
Where did you hope to get help from?
We did not know, we did not have hope that we will get help not heard anything about depression. Not heard anything about depression or epileptic not heard anything. No help and we had not heard about this at all. All we did was go to the doctor and doctor writes us prescription and we come back home and back again. That's all.
So after these specialists came and we were sent to them and brain scans were done. They told us that these epileptic fits are happening due to depression. Then they sent us to a psychologist and then we got to know a lot more. Five years later we got to know that this is due to depression.
People complained that doctors, nurses or other people working in services had not given them much information. Some said what they got was 'too little too late', others said they had to 'go out and get it' themselves. In the end, people found helpful information in books, on the internet, via carers' groups or community centres.
Some carers pointed out the dangers of leaving the care of people with serious mental health problems to carers unless they were given the information and training they needed. One woman had told health professionals that 'you are trained in this and I am not', but still didn't get the information she needed to care. People commented that 'if you have a broken leg, no one would expect an untrained person to treat you.' Yet carers we spoke to felt they were given lots of responsibility with no other option than to 'pick it up as you go along'.
Nick was unprepared for looking after his son when he was released to his care.
So he didn't want to take the medication?
Exactly, so that is why the registrar said he's not right to go home. So knowing all these things, clinician to discharge a patient in my care who are completely oblivious to any mental illnesses or what it involves, that's the type of people you have. You see, they were going by the book. What I'm saying is, most people in this business, if they use their common sense, even about confidentiality, use the common sense, what is a carer? A carer has to look after this patient. That means that they do the same things or more, than what a nurse did in a ward, but at home. Now there is no training for these people -at least a little bit of advice, or a gentle, you know, make them aware of what his mental illness is, that he could become violent. Now later on the violence also came in but we were not warned of that.
Several people had not known what to look out for, what to expect or how to address difficult situations when they arose. Others said they initially had not known how important it is for people with a mental health problem to stick to their medication. Others said they had not been informed about their powers as next of kin to stop some involuntary treatments. Still others felt information about benefits would have helped because they struggled financially.
Support services for new carers
Some carers said they had felt distressed and confused and said they'd had 'the confidence knocked out of me' when they first began caring. Many emphasised that having someone to talk to may be especially important for new carers, but said that at first they had not known where they could go for support.
If people don't see themselves as carers they probably will not look for carers' support services either. In many cases it had taken years before carers realised such services existed for carers and families affected by mental illness. Eventually, many got great support from a range of services (see 'Support from carer services').
Jane had been a carer for many years before her doctor told her about a centre which had services...
Some hadn't known where to turn for help. Others had felt dismissed by the health service and so had not looked for any further support.
Sarah says the professionals must have known how hard it was to look after her son, but offered...
So I got involved with Rethink and then somehow I must have heard, been told I was entitled to a carers assessment, and which I had, and I didn't find it very useful because what he suggested was for Max to go somewhere, like for people with mental health problems for a week, to give me a break, and I had said, had told him Max was not going to go anywhere because he didn't want to have anything to do with people with mental health problems, as he was adamant that he was not mentally ill. So basically that was it. Either my son had to fit in what was offered, or there was nothing.
Some had been helped by voluntary organisations; one woman said a health professional had told her about a voluntary organisation, 'otherwise I never would have known about it'.
For some, their greatest need had initially been getting support in their own language. One woman who didn't speak English and who didn't read or write said it had been almost impossible for her to understand the system because 'being illiterate is like being blind', and 'you don't know anything if no one is there to help'. Many people said that when new to both caring and to mental health issues, 'you don't know where to begin' to find help.
Last reviewed September 2018.
Last updated February 2013.