Sources of information on psychosis

Many of the people we spoke to wanted to find out more information about mental health, or their diagnosis, so that they could better understand what they were going through. People got information from a wide range of sources including: books, the internet, leaflets, films, doctors, mental health organisations, support groups, and other people with similar experiences. Especially at first, booklets and leaflets produced by the NHS or mental health charities were helpful sources of information. However, over time people wanted to know more and accessed other kinds of sources e.g. the internet and books. It had taken most of them time to find the sources that were right for them.
Many got their information from leaflets produced by organisations such as Mind, Rethink, or the Scottish Association for Mental Health. It was often through such leaflets that people learnt more about mental health and their own diagnosis.

Stuart describes the shock he felt when he was first diagnosed with schizophrenia.

Age at interview 45

Gender Male

Age at diagnosis 31

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People also gathered information about housing and benefits from other types of leaflets, such as those in job centres. However, over time people wanted more detailed information, including about people’s experiences and different ways of coping with mental distress.
People found information in many other places, such as the local library or women’s magazines. A few mentioned self-help books as a good way of reading about techniques and strategies such as meditation that could help them cope with experiences (see ‘Strategies for everyday coping’).

Toms psychiatrist recommended the book Coping with Schizophrenia.

Age at interview 39

Gender Male

Age at diagnosis 21

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Graham learnt from others and through fictional and real accounts of personal experiences.

Age at interview 47

Gender Male

Age at diagnosis 22

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Pete describes his long journey trying to make sense out of his confusing experiences.

Age at interview 48

Gender Male

Age at diagnosis 30

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Gary had read ‘An Unquiet Mind’ by Kay Redfield Jamison and strongly identified with it. Before the days of the internet, people had relied more upon other sources, including support groups, GPs and psychiatrists. Margaret felt that she had received the most useful information from a spiritualist church. Many people who had been diagnosed in the last few years had found a good amount of information on the internet. Arwen said at first information on the Internet had helped, but later it seemed a bit ‘basic’ and ‘condescending’. However, others found internet sites highly useful. Some people had tried using chat rooms or Facebook as a way of talking about their experiences with some degree of anonymity. However Arwen had been abused on an internet site when she disclosed that she had been diagnosed with schizophrenia.
Some people had also read about religious interpretations of experiences, particularly Buddhism. Others chose to educate themselves in other ways, through studying on a course or reading about mental health.

Education helped David to understand why he felt as he did, and how the world around him worked.

Age at interview 31

Gender Male

Age at diagnosis 17

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David became involved in research produced by service users and found more information by going to conferences about issues that affect service users.
Many learnt more about their diagnosis and medication from health professionals such as their GP, psychiatrist or mental health nurse. Others got helpful information (e.g. positive ways to cope) from service users in hospital wards or in support groups (for more see ‘Support groups, service user groups and charities’). Some people got their information from therapists outside the NHS who practised different forms of medicine or healing.

Naveed regularly consults a herbalist about his health. He receives advice about his physical and…

Age at interview 42

Gender Male

Age at diagnosis 15

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A couple of people had consulted spiritual guides or mediums to learn more about the spiritual world (see ‘Spirituality and religion’ for further information).
Some people had begun to put together information about their experiences and thoughts for others to use. Dolly, for example, wrote a book about her experiences called “The World is Full of Laughter”. Ron has written several books and handbooks for those working with voices and working towards recovery.

Ron describes learning to live with his own voices, and how this became the start of a…

Age at interview 51

Gender Male

Age at diagnosis 23

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For more information about approaches to recovery, see ‘Recovery’.

Spirituality and religion

Spirituality and religion mattered to many of the people we spoke to. Spirituality means different things to different people, but is concerned with experiencing and...