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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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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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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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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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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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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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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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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