People wanted access to work opportunities wherever they find themselves within the system:  'Hospital-based treatment should be work-skill focused, not a time waster'.   There should be better advice available to inform choices, e.g. at G.P.s’ surgeries, wards, or in the community.  Participants requested access to a greater range of ordinary services, rather than relying wholly on mental health services:  'Not just services for people with a mental health diagnosis – if we always act different they will treat us different'. 

There were differing views about the value of gaining jobs in mental health services:  'It can be a good idea for people with mental health problems to work in the mental health sector.  Can also be difficult'.  In contrast, people wanted access to ordinary jobs:  'Want the choice to do normal work, not just in mental health'. 

To address the need for comprehensive information, one person suggested that:  'There should be a central point locally, dedicated to vocation – any service user who expresses an interest should be able to access this service'.  A printed directory and database of all services was felt to be necessary. 

Suggested changes to existing day care provision included:  'More employment and training services should be available at the day centre', and 'People teaching their skills to others'.

Question 3: What role can service users and user-led organisations play in developing/running new services?

Although government and organisational policies promote user involvement, actual user-led services remain rare.  However, participants described a wide range of roles that they could perform in service provision, if given the chance:  'Users to run a central employment service that has several businesses, e.g. a telephone helpline re. employment opportunities ... Pool of workers to be set up to provide services from a centre'.   

As well as running employment services, some people wanted to provide care for others:  'Users can run safe houses for people in distress (gender, ethnic, sexuality specific)'. 

People are already involved in facilitating/teaching groups and classes at the local college, with considerable success – they are very popular with students.  But it was felt that more of these roles should be available. 

At present, user involvement generally is limited to consultation, sitting on interview panels, etc.  People not only wanted to be paid well for this, but also to move beyond involvement.  A challenge to local providers came in this form:  'Set up a user-led work project funded by [the local NHS Trust]'


Challenges to the system

We found that adopting a user-led approach to consultation within groups enabled people to say what they really felt.  In particular, the destructive psychological impact of material and social inequalities created angry feelings among many participants:  'Get rid of all Council employees and health/social care staff', and 'Change the whole structure'.  The unequal power relations with staff were highlighted:  'Users don't have enough influence or strong enough voice', and 'We should tell them what we want, rather than them telling us'.   

User involvement is often promoted as a way of improving services and addressing inequalities.  However, the way it tends to be structured is in favour of organisational interests, if nothing changes as a result of the involvement.  This can lead to disillusionment with the process:  'This user involvement thing is turning into a bit of an old-style freak show.  Gather the users up like performing seals, feed them, pay them £10, then tell them to fuck off back onto benefits'. 

People said that providers need to be more sensitive and attuned to the person, not the label or diagnosis:  'Just listen to users'.  'To be treated as a human being'.  There are also struggles with poverty:  'We are not allowed to earn enough money'.  Currently people living in hospital have to survive on £15 a week.  There were also concerns about clarifying the rights of people using mental health services:  'Fighting for our rights – but this is frustrating, having to fight all the time'.

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