Friday, 8 February 2013

what does it mean to be 'user led'?

I've been a community development worker for over 30 years, mainly grassroots project development, led by the people on the ground.  It's what we did.  Identified a need then set up a project to meet the need eg playschemes in the school holidays for our children, visiting the housebound in the village where we lived, youth events on a weekend in our community hall.

We came up with the ideas and statutory agencies supported us financially and practically to bring about positive improvement and change.  We were the instigators of change and this was welcomed by the powers that be.  It wasn't about focus groups or being pawns of government.  It seemed like we were all working together in terms of community empowerment.

However this hasn't been my experience of mental health user involvement since getting involved in 2008.  I expected the same sort of process.  Equal partners, grassroots activism and strong user voices.  Instead it's been more like focus groups, government led activities and user leaders compromised in positions of power.  A gently gently approach that does nothing to change the balance of power in the psychiatric system.

And for me it's all about changing the balance of power.  So that there is no recourse to force or dehumanising treatment in the name of psychiatry.  The dilemma with having compulsory treatment is that for some paid workers this is an excuse or reason to use force and degradation.  I find this unacceptable, always have done, whatever situation, society or system.

Therefore national user led mental health groups have to set the agenda, be proactive and challenge the use of force and human rights issues in psychiatric treatment.  Otherwise they are colluding with the system and the perpetrators of abuse.  Turning a blind eye just isn't good enough, in my opinion.


  1. the problem is that all volunteering has been taken over by government and bureaucracy and all sorts of rules and regulations and by health and safety. It has taken the heart out of everything. If I spontanously went in to talk to patients without being screened etc, I wouldn't be allowed no matter how good my intentions...A.V.

    1. and yet we could talk to people who used to be patients by holding meetings or get-togethers or starting a campaigning group. However it might be difficult getting folk to turn up. I agree that the rules and regulations have taken a lot of the 'heart' out of volunteering.

      I remember, twenty years ago, running a day centre for the elderly. The members helped cook the dinner, peel the potatoes, make the soup and salad. One member, a retired master joiner even put up new cupboards in the kitchen. You wouldn't be able to do that nowadays. We all went on a week's holiday, not too much to organise, now it would be a nightmare to arrange.

  2. Successfully out of thew clutches of psychiatry into an anti-stigma group,into the clutches of "some really not very nice person didn't like me",user and management,mind games,after 6 months I eventually realized I wasn't the crazy one.

    But the bullies always win,hope not....