A commissioner’s guide to developing and sustaining user-led organisations

About this guide


This guide is based on the policy directive that by December 2010, all local authorities should have ensured that they have a user-led organisation (ULO). The work was undertaken in consultation with those responsible at the Department of Health (DH) for leading this policy.

Scoping and searching

A background scope was conducted in July 2009, and further searches and analysis were undertaken up to spring 2010. Research literature was sparse: a thematic framework based on available literature, informed by policy and organisational material formed the basis of an outline of the guidance.

Stakeholder involvement and consultation

The Project Advisory Group consulted widely with people who use services. This information then formed the brief for the Guide authors, who were topic experts (including a policy specialist on secondment to the DHin order to work on this policy).

NICE accreditation

NICE accreditedNICE has accredited the process used by SCIE to produce guidelines. Accreditation is valid for 5 years from July 2011 and is applicable to guidance produced using the processes described in the SCIE Guide Production Toolkit.

For full details on our accreditation visit: NICE Accreditation.


This guide was originally written in June 2010 by Sue Bott of NCIL (National Centre for Independent Living – now Disability Rights UK, www.disabilityrightsuk.org.uk), Dr Angela Sweeney of SCIE (Social Care Institute for Excellence) and Rich Watts of ECDP (Essex Coalition of Disabled People www.ecdp.org.uk) with support from the SCIE project team. The guide was edited by Catherine Ross.

The following people and organisations provided additional support: Fran Branfield, Jenny Willis and members of Shaping Our Lives, Ben Hockliffe (NCIL); Steve Carey (ECDP); and the staff at ADKC (Action Disability Kensington and Chelsea).

We would like to thank Anthony Avery for filming and producing all videos. We would also like to thank the following for their contribution to those videos:

Peter Beresford OBE (Chair of Shaping Our Lives and Professor of Social Policy and Director of the Centre for Citizen Participation, Brunel University).

Thanks also go to all those involved in the good practice videos: Christina Fortune (Mercian Ability Partnership); Rodger Read (Stoke Disability Solutions); Maxine Riley (Mercian Ability Partnership); Nigel Griffiths (Mercian Ability Partnership); Helen Gill (Commissioner with Staffordshire County Council); and Christine Whitehead (Commissioner with Staffordshire County Council); Tina Coldham (mental health consultant and video interviewer/coordinator); Robert Droy (Southampton Centre for Independent Living, now Spectrum Centre for Independent Living); Iain Speed (All Inclusive Disability Consultants CIC); and Kate Gurner (Commissioner Hampshire County Council).

The guide was reviewed and updated in April 2013 by Rich Watts.