Getting information about mental health

Sources of information

Many of the people we interviewed had tried to find information about mental health. People got information from a wide variety of sources including books, the internet, leaflets, films, doctors, mental health organisations, support groups and other people with the condition. Some GPs had provided leaflets or printouts from the internet: ‘My GP got things printed for me. That explained everything.’ One man said his children found books for him.

The importance of getting good information

Several people felt information was important in encouraging people to get help or recognise the need for help. One woman thought information for the public could help change views about people with mental health problems and lead to better public understanding. This might not always be the case, however, as one man who felt reassured that he was not alone and that mental health problems were not such a ‘taboo’ subject, still decided not to seek help at that point.

Mae says getting information to people is important because it could encourage them to seek help,…

Age at interview 62

Gender Female

Age at diagnosis 45

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Well I think information for people with mental, you do, you know, I mean it’s all very well giving people leaflets but like this website obviously that is going to be a big help, you know. I mean I know somebody, it’s a man and he is really depressed but because he’s a man he refuses to acknowledge that he could be getting some help. And he’s still locking himself away and plodding on every day. We’ve had discussions about it but I try not to discuss it too much with him because he gets quite angry about it. But yeah what could you, how could you help somebody like that? By this website, can that help? By hearing or seeing other people and realising that it’s no big deal, you know, to put your hand up and say I need help. I mean if you had a pain in your arm or something like that you would say, and it’s the same with the, with alcoholism, at one point you were just called an old drunk but now people recognise, AA, Alcoholics Anonymous and they realise that it’s an illness. So if we can get actually people on board to recognise that not all mental, mentally ill people are violent, psychopathic or whatever that which actually we’re just normal people trying to live our lives every day with the added burden of having a mental heath issue then perhaps, you know, people would get on a lot better. I think some day that, you know, it will be, it’s becoming more and more recognised but how to access it you’ve got me, [pause] it’s something I, I mean I’d really like to be able to say I had the answer and I really don’t, you know, but this is a start, it’s something we didn’t have before.

And did you struggle to get information then?
I did yeah. I mean if I hadn’t have come here [support group] I would have still been exactly where I was those, all those years ago.

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Getting information or knowledge was also seen by some people as a way of taking control of their mental health. One man said: “Information is power, so try and read up as much as possible on whatever it is, whatever diagnosis that one has been given.” Most people who looked for information were trying to find answers to their questions or improve their understanding of their condition. They wanted to know more about their diagnosis, possible treatments, what might happen to them or what might have caused their mental health problems.

Getting information helped people to ‘put a name’ to their experiences and improved their understanding and awareness. It taught them techniques for managing their mental health problems and flagged up other sources of support. One man gathered information so that he could understand his symptoms, find a name for what was happening to him and identify useful treatments. As a result, he was better prepared when he saw his doctor and this helped him to describe his symptoms to the doctor.

Shaukat read lots of different books to try to work out what was happening to him and this helped…

Age at interview 36

Gender Male

Age at diagnosis 30

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And I just went through the self help stuff and I read loads of different books. I didn’t understand, you know, some of the things and what and why it was happening, I tried to work out, you know, what caused it and whatever. And there isn’t any, you know, any particular incident or event that, you know, caused it within me or anything.

So it took I think oh I don’t know probably a couple of years to understand that. And then I was going to the group as well, so on a mostly, you know, every week. So I was hearing stuff from other people and learning about what medications and what things they’d been taking, and what was helpful. And then I think it was in about 2000 when I went to see my GP again because this time I knew, you know, what treatments I wanted and what specific therapy and , you know, what condition I had and what the. And I asked him to refer me to like a cognitive behaviour therapist.

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One woman described how her reading changed her views about what caused her mental health problems and led her to seek out the opinions of Black psychiatrists.

Niabingi read books to find out more about her diagnosis and discovered Black psychiatry; she…

Age at interview 42

Gender Female

Age at diagnosis 25

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Well yes, well not I’ve just, I just’ when I, after the first time I was in hospital when I began to calm down again I grabbed a book and I thought okay look, I’ve been in hospital they’re saying this is, you know, I’ve got this thing called schizophrenia because then, by then I had the diagnosis and I thought to myself well, you know, what is this, what is this mental illness thing, you know, what is this, you know. So I grabbed just any psychiatry book and I began reading and then I went onto, and then I began reading, you know, sort of black and white psychiatry and that’s when I sort of realised that, you know, and the, and realising it’s sort of like well this is what, and, and so the, you know, when I began to read the black psychiatry and listen to black psychiatry I thought well yeah that’s what happened to me yeah I was thinking this or yeah I was thinking that and that’s when it began to dawn on me that racism did have a part on, you know, on my experience, my experience of growing up here and didn’t, and, you know, and, and in the mental health system I realised, you know, that it is, had a part as well Yeah, I didn’t, at first I didn’t specifically seek them but these days I do. If I have an issue I will seek a black opinion because that’s usually the opinion that identifies most with my, what I’m experiencing.

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Getting information from other people with mental health problems

People were also empowered by comparing their experiences with those of other people: this was another way in which people gathered information about a condition, identified symptoms and got practical tips on how to deal with them. For some, making comparisons with others helped them to confirm their diagnosis. One woman thought it was important to see what people with the experience of mental health problems said, especially because she felt she could believe them because they had actually been through the experience. She said she didn’t believe doctors because they didn’t have this experience. One man thought that information on the internet was inaccurate because it did not match his personal experience – probably because it was based on research and not people’s personal experiences.

Patricia says getting information from the internet about other people’s experiences has helped…

Age at interview 25

Gender Female

Age at diagnosis 23

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I’ve recently found a very good way of dealing with this and as a result I’ve felt the benefits. And I’m very, very pleased to say this, but it, that doesn’t mean that I won’t have any panic attacks or I just feel, you know, not anxious, because I still do but the panic attacks certainly decreased a lot. It was basically going on the Internet and finding groups of people that have exactly the same symptoms as I do, have done exactly the same amount of, as, as of, medical tests as I did, and keep going to the hospital with the same symptoms and there’s nothing wrong with them. The same way there is nothing, absolutely nothing wrong with my health. But it’s people that I can see that have the same problems. So going on the Internet is one of them, certainly, because one thing is the doctor saying to you, ‘This is what you have, don’t worry you’ll be fine. I don’t believe in the doctor because the doctor never experienced what I have to experience what I have to deal with every single day.

But the people on the Internet for instance, they, they know exactly, they, they write their stories and their stories sometimes absolutely match my story and that is such a great comfort, that is just, it’s just like taking a pill like I used to and, and just feel fine. So, it’s, it’s, that’s one of the, that’s one of those strategies. Another one is basically, I read this article the other day about this, this, this girl, I think she works on TV, and she, basically she has a very similar personality to mine, she’s, she tries to be a perfectionist and she worries about everything and what she says is, when you’re anxious, when you’re having a panic attack, just think that your body is over-reacting and that’s it. It’s your body, just over-reacting. And that makes it, I say it to myself, ‘Oh, I’m feeling anxious, oh, hang on, no. It’s your body over-reacting. Forget it. And this has been working, this has been working for the past month I think. It’s very recent and that’s why I’m very happy about it.

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Some people, however, said that being aware of other possible diagnoses, learning about their diagnosis or certain treatments led them to develop new concerns.

Medical notes

A few people had looked at their medical notes and thought that having access to them, and being kept informed generally, was an important and positive aspect of mental health services. However for one young man looking at his medical records made him realise how unwell he had been. Another man had been required to get his wife’s permission for him to look at his notes (to say that he was well enough to look at the information). When he looked at his notes, he was pleased to see that they provided an accurate record – partly because he had sent them regular, written updates on his progress. Others felt doctors sometimes kept things secret from them or just didn’t know enough.

Lorenz looked at his medical notes – although his wife had to give her permission – and says the…

Age at interview 50

Gender Male

Age at diagnosis 20

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I was just going to say the best thing that happened with the mental health service now is the communication we get from psychiatrists to say that we are allowed to see what they wrote, they’re writing about us.

Okay

So that is a good improvement, before they have kept everything a secret, I had no, we had to have special permission to see what was written but now you can just sign a piece of paper to say yes you want to see what the psychiatrist write to the doctor or what he puts in your file. And I, saying that when it first came out I think it was probably the ’80s or the late ’90s I immediately, when it, it’s the open policy now, I immediately went to get my file didn’t I, well I wasn’t physically able, I, although I’m able bodied and my mind was right they still wanted to know if I’m well enough to take any information what was written about me. So they had to have my wife to sign for it type of thing although I gave my permission the wife had to say yes he’s in the right frame of mind to take in info. Luckily the information given is correct about me, they got my profile right it’s only because I think I was always writing letters to them to tell them basically how I feel. When I’m in hospital I write notes of how the psychosis happening to me so all that I see the copies of what I wrote, what they write about me. So put them together it formed a good picture.

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Difficulties getting hold of information

Several people felt it was hard to get hold of good, accurate information and would have liked to have been told a lot more. Some people hadn’t seen any information either because they hadn’t looked for it, or hadn’t been offered any, including one woman who said she wanted to know more and planned to ask her key worker at the mental health centre she attended. Knowing what information is available, and how they could access it, sometimes affected what information people got. For some, language and reading ability made it difficult to get information. Not understanding medical terms could be a problem too. One man said he found the information he received difficult to understand. He thought that leaflets were not enough on their own, and that there should be someone to explain things to people on an individual basis.

Rehana says she was given lots of information leaflets and attended a support group, but found it…

Age at interview 49

Gender Female

Age at diagnosis 44

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So when did you actually get this, when did somebody tell you you’ve got severe depression?

Oh, depression, anxiety.

When was this, how long ago?

About five years ago.

Five years, yeah. And did you get any information about what this means?

Yes, I got a lot of leaflets and they sent me a lot of places like a centre, a lot of, you know, knowledge, talk to someone who, you know, they used to send me people like anxiety people, go there. It’s like a therapy, you know, a lot of similar group. I mean they were telling their experience, I was telling my experience, which is, I know my English is not very good like them. The English people speaks, some words I don’t understand. It’s new to me, you know, and’

What kind of words can you remember? What language you had to learn to

No, no it’s still English.

Yeah, but I mean sometimes the words that are linked to depression like

Yeah

Like earlier we were talking about prognosis and

Medical

medical words.

Medical words

What kind of new words did you learn?

Like palpitation, side effects, a lot of side effects, you know. Tinnitus.

Yes, so these are new words.

These are new to me now. And a lot of other things, you know, but then I used to take my mum-in-law to hospital as well and every day I’d learn new words. Even though I didn’t know even my ABC when I came to England.

And the leaflets that you got, did you find them easy to understand or not?

Yes.

They were OK?

Yeah, yeah

Did you look for any information yourself or did your children help you look for information on the internet or?

No, I did it myself. I do it myself.

Where did you get information from?

Wherever I go, you know, where I can, you know, you know the daily thing to the [name]. In there is a lot of leaflets about it as well. Stress and everything. So when I go to doctor, because I like reading. I like reading. If there’s a word I don’t understand I just underline it and I did a computer course as well for two years. It was before my anxiety attack. Now I can’t even think about it yet. I’d love to go again because I’ve forgotten a bit of it. When I am on it, it’s coming back slowly but if I don’t. I don’t know, I don’t want to do it yet. I’d really love to it, yeah I did a beautician course for two years. I did a sewing course as well. That’s my hobby to learn everything.

So what’s stopping you now, what are you worried about?

I just get so confused. Even a leaflet, you know, this one I can read it just like that. It’s like I understand every single word on it. It’s just something is stopping me.

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Not everyone always wanted more information – one young man said he was ‘not bothered’ about whether he got any more information about his condition or not. Another man said that when his doctor recommended that he look on the internet for information about Electro-convulsive treatment (ECT). He would have liked him to make the decision whether to try the treatment on his behalf, especially because he found it difficult to make a decision when opinions varied a great deal.

Anton was given conflicting opinions about treatment and when his doctor suggested he look for…

Age at interview 64

Gender Male

Age at diagnosis 45

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Then they told me electric shock treatment. Previously I asked all the psychiatrists and no one wanted to give it to me. They said you’re not as bad as you think and we don’t agree with you. So when I went to [psychiatric hospital] they said, ‘Well if you are really suffering like that this, you can try it.

Then I belong to a research group in Institute of Psychiatry called CRAG, Consumer Research something, a group, and then I met some members and some said to me, ‘Oh yes, I have taken it. It was a quick cure. Or quick relief. I recommend it. Then another lady sort of said, ‘No, no, no, it caused me memory loss. I went through hell and I wouldn’t touch it with a barge pole. So that’s the sort of difference of opinion.

So when I asked this Professor, they said to me, ‘Look on the net and make your mind up. I wish somebody would tell me, ‘Look go and do it.

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As well as information about their condition and possible treatments, several people would have liked more information about what support services were available and how to obtain them. For example, one man talked about the problems he had finding out about social security benefits and carer support.

Raj didn’t get enough information and found things out for himself; he would have liked more…

Age at interview 55

Gender Male

Age at diagnosis 54

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Have you been given information regarding depression, books, leaflets?

I haven’t received information, but I did receive a letter from the doctor, it said post-operation depression [section removed] I found out after reading books that if you take vitamins B6 you can take yourself and I took them and I slowly stopped taking the doctors’ tablets. Now I take St John’s Wort capsules 250mg.

So you did it yourself?

Yes I self-treat, my children too, they would buy a book and study it and then try vitamins and we get our own tablets and if we stayed with on doctors tablets we would have got worse

If you have to give advice to somebody what they would have to do if they face this kind of situation, then what will you suggest?

I will always say first thing find your claim and how can you file it. Anyway, any person who comes out of hospital, they know this person is not able to do work. Leaflets should be given in the hospital. Starting should be there. After that, when you come to see the doctor, then the doctor should give this information. Doctors should tell you that you should being the forms with these numbers and I will fill my part and you fill your part. Common people are scared if the doctor will fill it or not then we don’t know about the carer. We used to see leaflets for carers in the doctor’s surgery but we didn’t know its meaning.

What is carer?

Yes, what does carer mean? And carer cares who? We used to think in our mind that it is for 65 plus who have no children to look after them but carer and these who advertise it, they should make it clear that it’s for all sort of ages. This advert here, about carers, they don’t write that it’s [for] all ages concerned.

So it confuses?

Yes, there is no clarity that it is your medical condition that we look for, not your age. It should be like this. It was not clear to us so we were unable to contact a carer or ask a doctor and even the doctor hasn’t told us that why we are not going to [get a] carer.

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