Experiences of psychosis

Support groups, service user groups and charities

Some people we spoke to attended support groups;  others were involved in campaigning or political groups, or attended groups where they learnt a new skill. A few people were involved in user-led research and were involved in their local Mental Health trusts. Charities and other organisations (e.g. Mind and Rethink) run local support groups throughout the UK. Mental health support groups for service users and carers can provide a forum for people who have experienced psychosis to meet, talk, share experiences, gain emotional support, and talk about ‘what works’. Some people also used internet-based support groups and chat rooms to find information about psychosis or talk about their mental distress in confidence (for more information see ‘Sources of information’ and 'Mental health & wellbeing resources').

Other groups people went to provided useful, creative and relaxing activities such as cooking, gardening, poetry, creative writing, assertiveness training, art and music. Most groups people spoke about aimed to improve their participants’ general well-being. Many people had been to a support group, centre or organisation - some at their GP’s suggestion. A few people got help via their carer to attend, or went along with their carer. People were also involved in service-user groups that' campaigned for political change; tackled the stigma associated with mental health problems (e.g. the Time to Change campaign); or offered alternatives to psychiatric ways of understanding mental well-being and illness (e.g. The Hearing Voices Network). People additionally took part in service-user-led organisations that produced reports and research about service-user experiences and mental health policy (e.g. Suresearch).
Support
Many people appreciated the support and kindness from individual healthcare workers and fellow service users who wanted to share their experiences. Some people found it helpful to attend support groups to gain coping strategies (see ‘Strategies for everyday coping’ for more
A few people were involved in doing service-user research such as that done by Suresearch, as they wanted to have more of a ‘voice’. They felt that part of their recovery was connected to owning their story with others in a group with similar experiences. Often people had had no information when they were first diagnosed or unwell, and wished they had had more information and support. Rachel went to a group for people who had experienced sexual abuse which helped her to understand and overcome her experiences. At first it was frightening for a few people to talk to others about their experiences, but they built up their confidence over time. Carers too found information hard to get at first. Carers' groups could sometimes tell them about a range of things such as finances, symptoms, side effects of medication and coping with everyday life.
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Another carer couldn’t relate to a number of groups she went to, but then found a Rethink group where she could speak to relatives and carers of people with schizophrenia.
Activities
Some people liked groups that were specifically for talking about mental health, others wanted to learn, participate in some activity, get more confidence, or just enjoy themselves.
One man we spoke to, Devon, said that ‘playing Scrabble and cards’ at a day centre wasn’t for him. He started a music project for service users, a centre called ‘Sound Minds’.
Learning a new skill with others
Some people got help with particular difficult areas in their life or learnt a new skill.
A couple of people had taken social skills classes like ‘assertiveness’ training. (For more information on recovery see ‘Recovery’).
 
Personalised help from social services and charities
A few people were starting to use the Direct Payments scheme to enable them to go to classes, or pay for a carer to accompany them to different places. A carer employed a PA (personal assistant) for her son through this scheme. Robert had got specialist help from a drug charity that helped him with drug abuse issues and money problems. His housing officer helped him organise a Debt Relief Order to sort out his finances.
 
Difficulties with using support groups
Going to a group didn’t suit some people because they didn’t want to talk about their problems with others and didn’t want to have only friends in touch with mental health services. Margaret particularly wanted anonymity - she didn’t want anybody at work to know she had schizophrenia, so didn’t attend.
Tom had been to an art group, but wanted to paint privately in his own studio and not with others. One person said they already had enough support at home, whilst Tim didn’t want to go to a Rethink group as he thought it was too depressing, such as when he heard about people who had committed suicide.

Last reviewed April 2014.
Last updated April 2014.

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