OUTCRY Conference Report:
Part Two - The Need For A User/Survivor Alliance

Chris Wright

Introduction

The original idea here is for me to speak about the need for a user and survivor alliance as a kind of ‘warm up’ for the workshop that will follow this. Please excuse the suit. A suit is a coping mechanism and it is easier for me to present a talk in this gear. Please don’t hold it against me!’

The language I will be using is predominantly ‘user, or ‘survivor’, but I appreciate some people don’t like these ‘tags’. These are solely to simplify this talk.

Why Do We Need A User/Survivor Alliance?

Well, we’ve already got an alliance. We are united in the pain we’ve personally suffered. We are united in being discriminated against, with the stigma of being seen as second class citizens. We are united in being subjected to some of the horrors of a mental health care system. We are united in doing what we can to improve things. I’d suggest that the very fact that we are users and survivors creates the bond that unites us in an alliance.

The issue of user empowerment and involvement has been around for 15 to 20 years. From the outset, at the heart of this has been, that our voice should be heard, taken seriously, involved and empowered, all across the board from local services to the Mental Health Act.

The established Mental Health ‘Care’ System remains firmly entrenched in the medical model. We are faced with many challenges here, and some of these important issues are being raised in other parts of today; so I wont be focusing on the Mental Health Act and compulsion as I would be treading on the toes of my fellow speakers. But I will say that we still have a ‘nanny state’ regards the mental health ‘care’ system, where doctors/nurses/social workers/policy makers, pat us on the head, listen with one ear, nod in all the right places, say all the right things, but when it comes down to it, don’t really take us seriously and end up ‘deciding what is in our best interests’ anyway. This is something we’ve been challenging - and rightly so.

Some changes have been for the good - advocacy as one example (which grew from service users in Holland) - have come about as a DIRECT result of a strengthening user movement.

The ‘user/survivor’ movement has had a very loose basis. I believe the time is right to take the next step to strengthen the bond of unity and our empowerment by establishing a real and tangible user/survivor alliance.

I also suggest, that the same situation of a ‘nanny system’ exists within the mental health organisations ‘charity sector’, apart from a few (for example Mad pride) can they really claim to represent service users? I am not knocking all the work of charities, there has been some good work done on our behalf, and for those successes, I pay tribute to people who have taken us seriously because they genuinely believe our voice is the most important one. But for those successes that have happened we have had to rely on individuals in the organisation, not the organisations themselves. Yes, we have been heard occasionally, often being wheeled out one at a time to give a talk, to run a workshop or meet someone important, but that’s really about it. In very few places are we the majority. I believe that the fundamental base, of having users at the top of the agenda - which includes giving us a REAL voice and giving us the power by putting us in control - has largely been a failure. Any organisation that says it represents users must be able to prove their understanding and commitment of user empowerment. Otherwise, I’d suggest that it’s hollow rhetoric.

A report to the Charity Commissioners, which can be found on their website, said they needed more experts to be involved at the management level. Exactly!! I would suggest that in mental health that’s us, we are the experts!!

The vast majority of mental health organisations are set up in such a way that discriminate and undermine us. Here positive discrimination must be used, guaranteeing a majority of users on ALL decision making bodies - Management Groups, Executive Committee’s etc - and where they say they can’t get enough users - a veto should be given to us. I hear all sorts of excuses as to why this can’t happen, but it’s very simple to do. It’s quite straightforward to change a Constitution.

I’d like to give you some bang up to date examples of what I mean. These have been blatantly lifted from the ‘Hue and Outcry’ article by Liz Main from this months ‘Mental Health Today’ publication.

Firstly, in this article, Paul Corry - Rethink’s Director of Policy (when referring to service users) states that “They found it frustrating to cope with piles of paperwork and the very crowded agenda at meetings”. I say to these groups, make your organisation fit US, NOT try to squeeze us into a box that fits you.

Secondly, Paul Farmer - Chair of Mental Health Alliance (MHA) states “..at least ONE service user has spoken at every MHA event we’ve held....”. To that I say ” BIG DEAL!!! That to me is not on, it is patronising and tokenistic. The alliance have arranged meetings between service users and Department of health officials, but the MHA is not user led. The MHA has an overwhelming majority of non-user organisations making the decisions - it includes groups representing Psychiatrists, ASW’s, CPN’s - So how on earth can it claim to represent us???!!! I am not knocking the fact that we should be working together. I just don’t like psychiatrists etc taking it forward and having me, as a service user, on the sideline.

Ok, the next quotes…Rethink is proud of the fact that it has “up to a third” of trustees who are users. BUT the point is that, that TWO THIRDS AREN’T!! So users are in fact in still in the minority!

National MIND claims, and I quote, to be “inclusive and democratic’ and takes user involvement very seriously’. But.....MIND only has ONE guaranteed user/survivor on it’s Management Board.

The Chair of the MHA, Paul Farmer, says this. “We would strongly challenge any suggestions that we do not listen to service user groups”. I accept that challenge. Who is this ‘We’ that says it listens to service user groups?? The user voice should be the MAIN one anyway!! Who does the MHA actually represent? What gives them the right to negotiate, discuss and decide for us?
This from an organisation, that last year, at the last minute, cancelled a march protesting against the proposed M/Health Bill. Do you know the reason for canceling? The reason given, was the MHA linked the tragic murders of Holly Wells and Jessica Chapman in Soham that had occurred a few weeks before and the march, and I quote “couldn’t guarantee the safety of those protesting peacefully.”

How anyone came to that conclusion is beyond me. This reason came from a so-called mental health organisation, and the person has never been called to account. I can’t name names but this is on the overhead, I will let you guess which one.

From this alone we need an alliance!!

What Should an Alliance Do?

That’s not for me to decide. But, whatever we do, and however we do it, we owe it to our fellow user/survivors to make it work. Unity amongst users/survivors is vital and long overdue, rather than us being played against each other. We should be promoting empowerment, not off the back of other organisations.

I believe we should actively promote the empowerment of users/survivors in ALL areas of mental health, in the widest sense of the phrase. It should be the conscience of users, and challenge disempowerment, right across the ‘mental health system’. Knowledge is power, and it should encourage an information sharing base.

I think I’m fairly placid, and would suggest that most users do not want a confrontation. So, instead of reacting we should start running our agenda and I think we should take our initiative now. - we should put our agenda forward, so the mental health system is user driven, not the other way around, as it is now.

I think an alliance should also represent diversity. Not just one voice but reflect al groups that are user led. We’re often played off each other even though we often agree.

I believe we will not be taken seriously enough unless we have real influence and real power. Without any teeth, we will only be able to rely on our powers of persuasion, which unfortunately I believe will not be enough. We should be prepared to ‘snarl’ and if necessary ‘take a bite’. We should be prepared to ‘name and shame’ organisations that are not fully empowering users.

Unfortunately we will be in competition, for funding and an ideas base. I took a look at the MHA, and took a snap check on funding of some of their organisations. The income of these is at LEAST £15 million, which makes them very powerful.

To use analogy, we are at the conception of an alliance, a bit like an embryo.
We’ve got the pregnancy to go through yet. The growth, development and nurturing, and some ‘morning sickness’, in preparation for the birth. It will take commitment, energy and a lot of hard work.

Conclusion

The influence of users/survivors has not been taken as seriously as it should be. In all areas of ‘mental health’ we continue to be in the minority, our involvement and empowerment is, in practice, largely tokenistic. There has been enough rhetoric, mental health organisations have had YEARS to get it right and genuinely empower us. I say their time has run out! Unless we unite in an alliance, the dismissive argument that we are not representative will continue to be used to discredit us.

Unity is strength, and we should unite and fight against the suppression of users/survivors in ALL areas. To do that effectively, we need a user/survivor alliance.

NEXT: Part Two - The Need For A User/Survivor Alliance
Summary of Points From The User/Survivor Workshop