WELCOME TO ALL FELLOW CAMPAIGNERS for DISABILITY RIGHTS - a pan disability blog connecting my work with, EQUAL LIVES, the National Survivor User Network (NSUN) and the Survivor History Group.

Protest, Norwich Job Centre

Protest, Norwich Job Centre
Fatso Gets Militant!

Sunday, 11 October 2009

Bouncing on a Cloud

And trampolining over the moon!

And it feels really good to be able to write something positive here - and what is a refreshing antidote to the Time to Change posting I got out of my system (see below):

Last Wednesday I was invited to ‘lunch’ at the National Survivors Users Network (NSUN) headquarters. I wasn’t told if it was a dress occasion but I went in mufti anyway.

It was delightful; a chance to meet a couple of members of the Management Committee and a some of the staff of NSUN and Catch-a-Fiya over a pizza and a coffee. No ceremony. No airs and graces. No side - and lovely people, including Caroline from Kent who arrived in parallel with me and for the same purpose: a chance to look at them and them at us in an affable and informal atmosphere.

Tina (one of my heros) Coldham, MC Chair, Sarah Yiannoullou, NSUN Manager, the lovely Amma Djan - a powerhouse administration and finance officer - the hub of the organisation, Carolyn Anderson from Kent, doing the same as me and Clare Ockwell who is a Training and Research Coordinator from West Sussex. Wonderful chat with each confirming the other’s values and beliefs.

NSUN has had a sometimes thorny gestation with some users/survivors aggressively antipathetic. There were, as far as I could tell, three main sources of criticism and avoidance and for a minority of users, one major reason for sometimes violent comment which verged on abuse. The latter was:

  • An inaugural and long standing member of the Management Committee who was the subject of lurid allegations and talk of having been a collaborator against true user involvement in other spheres (my sources for this are past direct internet communications with those users who expressed these comments).

The other three sources of criticism were:

  • To get off the ground, the embryonic NSUN had to accept being hosted by an existing, well established charitable organisation, Together. Some users have doubts and suspicions about the use of finance in these large organisations and, in spite of NSUN making clear from the start that there was clear space between them and their host - that the host had no influence whatever, the fact of this hosting repelled those people. There were also reservations about links with and the proposal of continuing links with the then National Institute for Mental Health in England (NIMHE).

  • When it was first set up many users were disappointed that the steering group chose London as its base for a national network. There is much feeling against ‘Londoncentricity’ in general in other parts of England and this choice engendered negative feelings.

  • In writing up the drafts of the initial constitution for NSUN, the first steering committee appeared to run roughshod over many of the recommendations from the users at the inaugural Birmingham conference and many of those at what was an excellent conference turned away in disgust and dismay.

I’ve watched NSUN having been a member at arms length from the beginning and have had copies of the meetings minutes from the beginning - passionate about the tenets and ethos of the inaugural conference but, as with others, disappointed with some of the early developments.


Reading between the lines of internal strife, evolution has been sometimes painful. But the people I met last Wednesday were a real team - and a team with masses of expertise and values which now matches the tenets and ethos of the inaugural conference. I think my experience last Wednesday was wonderful. I don’t think there’s a devious feather in all their delightful wings and there’s a concerted enthusiasm and commitment to user/survivor involvement and peer support I’ve never seen elsewhere. It is a massive plus that the NSUN and Catch-a-Fiya teams gel like Clifford Brown and Max Roach.

And now I’m absolutely overjoyed to be part of the NSUN Management Committee


So where are we now. Well, those above sources of doubt and suspicion have gone. NSUN is a fully fit for purpose organisation which, in their words will: “...create a network which will engage and support the wide diversity of mental health service users and survivors across England in order to strengthen the user voice.”

Looking at those four features which bothered some users so much:

  • The person referred to (and I have to say here that I didn’t know that person so I’m unable to comment personally) is no longer there.

  • NSUN is on the point of becoming a separate entity entirely with charitable status.

  • A regional structure is in the process of being developed and part is already working regionally with important projects extant. The NSUN Management Committee currently comprises: Alistair Cameron from Newcastle upon Tyne; Angela Hill from the West Midlands; Kath Lovell from the London area; Carolyn Anderson from Kent; Clare Ockwell from West Sussex; myself, Mike Llywelyn Cox from Norfolk; Anne Beales and Ian Muhammad from Together; Sarah Yiannoullou, NSUN Manager, who has worked across the south east; Amma Djan our Administration and Finance Officer; and Tina Coldham, our Management Committee Chair, from Hampshire. So already there is a good geographical spread and the Regional Development plans are for 8 regional hubs: North East 2009/10; South East 2009/10; South West 2009/10; North West 2010/11; Eastern 2010/11; Midlands 2010/11; Yorkshire and Humber 2010/11 and bringing up the tail, London 2010/11.

Also, in my opinion the NSUN aims and core values are now very much in line with those proposed at the inaugural conference. They are:


  • Facilitating active links between service user groups and individuals;

  • Capacity building for service user groups;

  • Broker and facilitate access to service users for purposes of consultation, attendance on committees of planners and policy makers etc;

  • Develop a training programme in confidence building, committee, interview and staff training skills.


  • Openness and transparency;

  • Support user/survivor organisations - not replace or supersede them;

  • Ensure that currently under-represented groups have a voice;

  • Equality and respect;

  • Valuing diversity;

  • To be of value to the user/survivor movement.

Any comments are most welcome. I’m excitedly looking forward to this role.

N.B. These are my views and not necessarily anyone else’s.

No comments:


The Tough Tenor (when I could walk)!

In a Mellotone

In a Mellotone
Ah sweet Youffff