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...
Age at interview: 36
Sex: Female
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Well, at times, yes you might feel that way but as for me, I do get the break. But it's just as if you have got a normal family, you haven't, -you've got your children, can you take time off from them. No, you've got to be with them, but this is my family, I do, -I can remember last year I got a break, I got a break, but you get so -love and addicted to your family, like you're not no matter that you, you do not want to leave them, -that's for me, I don't want to leave my family because as I said, I've got this understanding now about what I am dealing with, my husband's sickness and the situation. So it's just like, -I just live a normal life with my family. I don't want, this is my husband, I just want to be there, not that if I don't take the break, but this is just how I feel. Because it's important to get breaks at times because you are human being, no matter how spiritual you might be but at times, yes, we need that break. So they have got the break in -the breaks at the centres, yes.
She thinks every carer should get respite that suits their needs.
She thinks every carer should get respite that suits their needs.
Age at interview: 72
Sex: Female
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Every carer should have adequate respite. And by respite, -it's very difficult because there are obstacles in the way of, obstacles on money. But if I could design it without any considerations I would say, yeah, good respite every, I don't know whether every week or every month, but you should have some clear days in which for 24 hour period you do not have responsibility for the person that you are caring for. And moreover, sometimes, -you know when people come here and sit with Larry for three hours or five hours, like they do now, I don't have the house to myself, I never have the house to myself. And I miss that. Because I used to really love closing the door, maybe putting a piece of music on and pottering around and doing. -And these are the things that you miss so much in your life really. So you don't have the, so it would be nice to have, I mean this a utopia but it would be nice a place where it would be going from 8 o'clock in one morning until maybe 8 o'clock the next morning. Just go and you have your space and your time to yourself, and that would be fantastic. Maybe, you know, every fortnight, every month, but it's really a human need, that you need to, -I know it sounds cruel, but you need to be free, even visually, of the person you care for. Because it's becoming, it's become so intense now, the relationship, because you are so, you're always together and his needs are, you're always aware of his needs, but nobody's aware of my needs. Yeah. So there is that need of, -even if you don't have anybody here to comfort you, but at least your space is yours and it's quite'
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.
Age at interview: 52
Sex: Female
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There are institutions like this centre from where you can get some help. Do you go any where else other than this centre?
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.
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Carers who live with their caree should be able to have their own space indoors. Two bedrooms priority should be available (the law does not give it at present). It will give us a space of peace, safety and relaxation. Many carers own their homes, but also, many of us don't.
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).
Age at interview: 59
Sex: Female
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And so anyway, I'd got to know about Rethink, and I don't know who told me and I can only imagine it must have been either the psychiatrist or the CPN otherwise I would never have known about them. So I contacted someone and I used to go to a monthly meeting in the evening, which was quite useful, and. But then I still didn't know much about schizophrenia, and really where -I learnt everything I know now is on the internet. There is a very good website, schizophrenia.com, and I just went, and then when you go to different websites and I just learnt, you know, I didn't know there were several types of schizophrenias, I thought everybody with schizophrenia was, you know the same, had the symptoms, so it was really time to, I mean, to understand what was happening to him, because obviously he had no insight of his illness at that time. So it was trying to make sense of, you know, and what to do to move forward, basically.
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.
Age at interview: 56
Sex: Female
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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.
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An agent at the Trust mentioned about me being a carer first and a local organisation also explained to me about 'carer' but out situation did not move on. The local authority did not recognised 'carer' at all.
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...
Age at interview: 55
Sex: Male
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In that when we go to the doctor, we talk to the doctor. The doctor should listen to what we say, if the doctor explains to her and to us, then its feels good. If the doctor tells her something but does not listen us then it does feel not right. If we go to the consultant at the hospital, then the doctor talks to her and if we explain to her, and so we understand a lot about some things. But if they talk on medical grounds then we don't understand.
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.
Age at interview: 52
Sex: Female
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It took us a long while to know about all such things.
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).
Age at interview: 59
Sex: Female
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What kind of information do you think should be available to carers?
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...
Age at interview: 55
Sex: Male
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In that there is one big problem. In NHS the doctors, the psychiatric doctor, every few months they keep changing. They are on this training course or that one. They keep changing. So far, my Mrs has had a change of three to four psychiatrists. The last appointment the psychiatrist I am going someone new will be coming. So if a new one comes, he will work in a new way, so it keeps changing a lot. If it stayed with consultant psychiatrist then it would be better. The changing of psychiatrists and the appointment that they give is time limited. If they spent a lot more time only then can they understand about their mental health and about their mind. They give just 10-15 minutes appointment how are they going to know anything?
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...
Age at interview: 74
Sex: Male
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Carers' packs are now being made available. These packs should contain as much helpful information and tips in dealing with difficult and unusual situations. Some of us have years of experience but consider the plight of anyone who became carers last week for example. How will they deal with a crisis at two o'clock in the morning? Have they the knowledge and the expertise to carry out the all consuming task of caring at home for a mentally ill person? Before a patient is discharged into the community, there ought to be some preparatory work organised by clinicians to help relatives continue the work of caring at home. Psycho- education and other pertinent help should be considered. In fact, carers should be part of the treatment team from the time the patient enters the ward because mental illness affects the whole family.
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...
Age at interview: 60
Sex: Female
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Someone to help mediate with the doctors and the nurses. Someone to have stepped in to support me to get the medics to acknowledge that my father wasn't fit enough to be moved from the general hospital, to stand up to the Section Order. Because I didn't, -later on my solicitor said, 'Oh why didn't I discharge my father from the section order?' I said, 'because I didn't know how. I didn't know what to do'. So yeah, I needed someone, I think people in this sort of situation, they need somebody independent of the NHS, and the PALS workers are still employed by the NHS and I think they only seem to want to go so far anyway. That was my experience. And the more, you know, I was just really upset. I mean, I can see why I wasn't, why I was, why was I falling out with people but I kept saying to them, 'but this is a hospital. Aren't you used to people having, being in traumatic states like this?' And this is my dad who can't speak up for himself. So it wasn't just about my dad's physical situation, was it?
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.
Age at interview: 50
Sex: Female
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Is there anything you would like the hospital, NHS or hospital staff, mental health staff to know or to tell them?
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.
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