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.
Emily doesn't want to be away from her family for long periods, so takes short breaks at the...
Emily doesn't want to be away from her family for long periods, so takes short breaks at the...
She thinks every carer should get respite that suits their needs.
She thinks every carer should get respite that suits their needs.
The lack of suitable transport services makes it hard for her husband to attend community centres.

The lack of suitable transport services makes it hard for her husband to attend community centres.
There was another centre, like a day centre and it was maintained by Punjabi people and I wanted to go there for a change but when we applied to go there they said that you can come but we can not give any transport service to you.
No transport service?
They have a transport service but they did not give it to us. He does not go alone. It has to be two people. Like in this centre, it's me who would come and go with him all the time. At times they send the transport but it can not wait longer for us and he would not go alone. In the end he just refused to go like that. There was also a concern from me that if I would have to come and drop him at the centre and than pick him back it would mean losing double time.
Carers should be given priority for adequate housing.

Carers should be given priority for adequate housing.
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.
Sarah found out most of what she knows about schizophrenia on the internet (played by an actor).
Sarah found out most of what she knows about schizophrenia on the internet (played by an actor).
She suggests professionals should work with carers to help them identify what information they need.

She suggests professionals should work with carers to help them identify what information they need.
Where did you get information?
Nowhere.
The hard way?
I think, yeah it is the hard way really but, for me, I think as things have turned out, that I just slotted into the mental health services in, so I've just picked up things from my work basically. Other carers I think, nowadays if they're computer literate, they have to use the Internet service, there's so much information. But, perhaps if they're given a bit more direction it would be helpful because there's so much information you could get, -become a bit over awed or, you know, over confused with various things that are coming to you. But also libraries, ask for, -be a bit more specific because sometimes we just, as carers we might just say we want information but we're not very clear in our mind what information you want. But if the professionals worked with us and helped us to identify what information we wanted, then we could say OK, I want information about medication, about what exactly this illness is, whether it's schizophrenia, or, you know, bipolar, or depression, or eating disorder, or addiction or whatever. And then we could be saying, what are the choices of medication? What are the choices around therapies? So trying to formulate our concerns, so this would be more in a specific way. What are the side effects? Because quite often there are horrific side effects of medication.
The information Aiko got came late, and without any guidance or direction.

The information Aiko got came late, and without any guidance or direction.
I struggled a lot to find the right information for myself' about carers and mental illness, what kind of support we could have etc. Also, I needed a clear guidance about benefit system which I was sent from one place to another (many times) by the local authority. At that time, the local Carers Support Service was not functioning like now - I was given information pack (more than a year after my husband fell ill) which was a good selection of useful organisations and contact details, but I had no idea which would be suitable. It is almost impossible for any carers to go around to find information by themselves when the person they care for are in crisis. Many telephone numbers, organisations, booklets or websites etc. etc. -It is too much, it is information but they do not give you a clear guidance or direction.
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.
Non-technical language and information in writing can make it easier to understand (recording in...
Non-technical language and information in writing can make it easier to understand (recording in...
If they explained to you would that be better for you?
Then it would be good, good. What it is about whatever, interview dates or appointment. If you can talk to that person, if they give us a letter and we can show that letter then it is better. If it's not in writing and we there will be some words we don't understand. So we get confused at those times.
If you had the chance or the opportunity to change things to improve them, how would you do it? Can you explain to me again?
I would like it, I do not want an interpreter, but the conversation that takes place there, if it was in writing and you can get it, then we can keep it and talk to somebody about it. If someone, asks me, that you went today, diabetes nurse's appointment. She talked to me face to face. It wasn't such a big point that we didn't understand. My Mrs right now has a bladder weakness and she cannot control urine. She wets herself. So they are going to put a pelvis ring inside. Somebody asked me, what is it? So I said they are going put a ring but we do not understand the word pelvis. If they send us a letter on the doctor's report, and if they give to us, then we can keep it on our records and try and understand a bit.
She says information must be made available to make sure people get help quicker than they did.

She says information must be made available to make sure people get help quicker than they did.
How could you have known about such services earlier?
Through our doctors or hospital because that is where we went in the first place. That is where we were told about the benefits. If information about such centres would have been available with our doctor or at the hospital than we could have contacted this centre at an earlier time.
Right.
Or it could have been made available at temples or community centres.
Some information must be with community centres.
Yes there is very little information available with the community centres.
What other institutions do you think should be set up to help with the caring?
There are plenty of institutions already available; all that matters is the amount of finances with each individual. If someone is living on benefits how much one can afford, I mean spend from one's own pocket. They provide pick and drop and take them away for day out but it should have been more frequent.
Looking back at the last 12 years, is there anything that you would like to emphasise most, something that you have wanted to say during all this period of 12 years?
Yes, I would like to say that the bad time I have been through become longer because of lack of information. This lack of information must be tackled so that other people might not suffer that long, they might find a way out much quickly.
Tina says information should be available in different languages (played by an actor).
Tina says information should be available in different languages (played by an actor).
Well, funny enough the primary care trust person, when I was visiting one of the clients in the hospital and they tried to put that client under the section, and I don't understand those sections, so I asked the chap that what they do this and what they, -how it works, then he explained to me that if you, -and funny enough he is an Asian guy so he speaks my language, and he explained to me very simply that this is the thing that happens in society and they can, if you don't agree they can put under the section.
So information in different languages?
Exactly, because if they simplify then we should not [need to] ask any other people. If the information is available in the local people's language then they can read and they understand what is the problem, how their children or child or the patient are behaving in that manner, so they can find out that what is happening in their family or relative or in [cared for] people. So the language is the most important issue, and it's a barrier to combine the two communities together.
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.
He thinks fewer changes of doctors, longer consultations and clearer packaging of medicine would...
He thinks fewer changes of doctors, longer consultations and clearer packaging of medicine would...
So you want more time?
Want more time and the same consultant all the time would be good.
Anything else?
The other thing is the medicine that they give, the capsules. In some things, my Mrs has metformin, a diabetes medicine, it comes in a packet and a bottle. If it comes in a packet she will say that this medicine is different. So if the same packaging every time- what has happened is that in their mind is that the medicine has changed. Often her capsules that come, the colour is different so she will say they have given the wrong medicine. So the if the same package came continuously, that would be good too.
He suggests that new cares should be given carers' packs, that they should be kept informed and...

He suggests that new cares should be given carers' packs, that they should be kept informed and...
She thinks it would be helpful to have someone to mediate when there is conflict between carers...
She thinks it would be helpful to have someone to mediate when there is conflict between carers...
She thinks health care workers should show their patients more warmth and encouragement.

She thinks health care workers should show their patients more warmth and encouragement.
I want to say to them, I hope they give more love when treating their patients, especially patients like my daughter, because depressed people needs others to care for them and talk to them. Because without talk or appropriate treatment, or when they don't have a psychotherapist to talk to them they would feel more depressed and more like wanting to die. If you help her more, talk more, help her more they would at least not go down that path, right? If you give them more love and make them feel that there is warmth in this world and make them feel there are people who care for them in this world. They would not want to die because so many people help them and care for them. Because depressed people are not happy and if people do not care about them that is why they go this path. In my daughter's case, she likes to talk to people who are professionally trained. Usually daughters refuse to talk to their mothers but I try to learn from you lot. But sometimes I am able to learn and sometimes not. Sometimes it does not work.

Last reviewed September 2018.