The mental health user and survivor movement - what do people get from being involved?

The mental health user and survivor movement - what do people get from being involved? Tamasin Knight & Ciara Kierans University of Liverpool tamasin@doctors.org.uk

The mental health user and survivor movement • British movement began to form in the early 1970’s when ‘groups of diverse self-identified mental patients…began to meet and develop strategies to change their status from powerless victims to agents of change’ (Bassman, 1997). • ‘On Our Own Terms’ – very useful report http://www.centreformentalhealth.org.uk/pdfs/on_our_own_terms.pdf

My research • 5 people self identifying as being part of the mental health user and survivor movement in England: Sally, Robert, Gemma, Claire and Thomas • Narrative interviews • Power imbalances • Reciprocal interviews

Findings

A sense of community • Gaining a sense of community and solidarity from being part of the movement • Finding others with similar experiences and feeling understood by those people • Sally

A sense of community • ...and I got on there, ...everybody had the same feelings as me ... ‘this is wrong, we’ve not been treated properly’, and for me that was so empowering because it was like a whole online community that was together and so there was this sense of community… (Sally)

…it was really vital, it was like a lifeline, actually, being involved at that stage… (Sally)

Personal development • People developed personally as a result of their involvement in the movement • Gemma

… do I stay ‘user’ or this person down here, or do I make major changes, and start looking at this process of stopping being this disabled, disenabled person…and I just went for it, and became self-employed... (Gemma)

Helping others • Through their involvement in the mental health user and survivor movement participants were able to help other people experiencing mental distress / madness

…I quite like relating to distressed people…And occasionally I help people in a really big way, my friend’s life is completely turned around… (Thomas)

Gaining meaning from Causing Change • Consensus is that the mental health system can be unhelpful and even harmful • People were motivated to prevent others experiencing the harm they had experienced and to change the approach of the mental health system

Seeking to challenge and change the mental health system gave people meaning and purpose in their lives - a feeling of being part of something bigger than themselves

…It has been a vital part of my recovery and it’s been a vital part of feeling something, a purpose in life, there is a purpose in my life beyond my immediate family and everything, that there’s, I am actually doing something useful, that really is very, very important…(Sally)

Organisational difficulties • General disorganisation • Lack of funding • Expectation to do a lot of work unpaid, in own free time

Interpersonal difficulties • …and of course, just because people have experiences of mental distress or have a psychiatric diagnosis doesn’t mean they’re nice people...we talk about ourselves as the user survivor movement and its as though we all have to have helmets and shields to protect us from one another (laughs)… (Claire)

Frustration at not being listened to • …they’d listen to you because you’ve got a PhD or whatever and you’re Doctor Tasmin, but I’m just bog shit (Robert). They’d listen to what you say but because I’ve got 25-30 years experience they think ‘you’ve got mental health issues what do you know’… (Robert)

Discussion • Key issue - the mental health system needs to change • Participants rejected the notion of themselves as passive patients who needed to do what psychiatrists and mental health staff told them to do, in favour of a self identity based around self-determination.

This change in participants self perception fits with the ‘empowerment’ approach to health promotion • Naidoo& Wills (2009) describe this as occurring when people ‘recognise and understand their powerlessness; feel strongly enough about their situation that they want to change it; and feel capable of changing the situation by having information, support and life skills.’

Participants were not content to simply get empowerment and personal benefit from taking part in the mental health user and survivor movement, they needed to cause change and improve the mental health system in order to benefit others. • By seeking to challenge the medical model and bring about alternatives, participants are engaging in the ‘social change’ approach to health promotion (Naidoo & Wills, 2009).

Where to go from here? • Recognition of the value of the mental health user and survivor movement • Mental health user and survivor movement promotes ‘health’ at many levels • Consider how ‘negative’ aspects of involvement in the movement could be rectified

References and further info • Bassman, R. (1997). The mental health system: experiences from both sides of the locked doors. Professional Psychology: Research and Practice, 28: 238-242. • Naidoo, J. & Wills, J. (2009). Foundations for Health Promotion. London: Elsevier • Further info: • Asylum magazine http://www.asylumonline.net/ • Peter Lehmann Publishing http://www.peter-lehmann-publishing.com/

The mental health user and survivor movement - what do people get from being involved?