A commissioner’s guide to developing and sustaining local user-led organisations
Understanding ULOs: A brief history
While ULOs may seem like a recent phenomenon, social and health care users have struggled for many years to have their voice heard.
The struggle for a voice and the influence of civil rights movements
Early social and health care users were united by their disempowering experiences of services and desire for greater control over their own lives and the services they used.
The civil rights movements of the 1960s and beyond were hugely influential in shaping modern service user activism. These movements fought for marginalised people’s rights as equal citizens, arguing that mainstream society ignored, excluded and discriminated against them. They contributed to a political and social climate that emphasized rights and citizenship, which in turn helped people who use services fight for their voices to be heard.
‘Nothing about us without us’: the disability movement
Modern ULOs of disabled people started with attempts by disabled people in the early 1970s to leave residential care and live in the community. For example, in Hampshire a group of disabled people (still known as the ‘Escape Committee’) wanted to move from residential care to live in the community, supported by their own personal assistants. With the support of some professionals committed to independent living they eventually succeeded. The Hampshire Centre for Independent Living (HCIL) was set up to support them and others like them. Since then many CILs and other disabled people’s organisations have been established, especially after the passing of the Community Care (Direct Payments) Act in 1996.
In the early days, these organisations mainly involved disabled people with physical and sensory impairments. As direct payments became available to more people with the introduction of the Community Care (Direct Payments) Act 1996, and particularly since the development of personal budgets (since 2006 onwards, starting with the pilots sites work between 2006-8), ULOs have become more inclusive of all people who use services. However, some ULOs continue to represent single impairment groups, such as groups for people with learning disabilities. These groups often focus on networking with other disability organisations in the first instance, but are increasingly expanding their membership to other social care user groups.
A useful history of ULOs can be found in Disability LIB’s publication, ‘Thriving or surviving: challenges for [user-led organisations] in the 21st century”.
‘We’re not mad, we’re angry’: the modern mental health user/survivor movement
The modern mental health service user/survivor movement has grown rapidly – from a few, mainly national groups in the 1970s and 1980s to now include a large number of mainly local groups today, although there are many examples of earlier activism. While members of the mental health service user/survivor movement share many common concerns, there are also a number of differences. This means that the mental health service user/survivor movement cannot form a single voice that represents all users on all issues. This has led to a philosophy that values choice, self-determination and individual and collective empowerment. It also means that there is currently no single model that represents all views (like the social model of disability). Instead, there is a focus on ‘experiential knowledge’, which means that people who use mental health services and survivors believe that the knowledge of people who use services is important and valid, and that it should be interpreted by users themselves.
For more information visit The Survivor History Group website, NSUN (the national network for people who use mental health services/survivors): or purchase 'Some things you should know about user/survivor action' by Mind.
Campaigning by other user groups
Other social care user groups have their own unique history and very often have their own, specific organisations. Some are user-led organisations, but this varies considerably and cannot typically be assumed. Examples of such organisations include:
- local branches of Age UK
- A National Voice: an organisation run by and for young people who are in or have experienced care
- User Voices: an organisation run by people who have experienced the criminal justice system
- National Pensioners’ Convention: a campaigning organisation run by and for pensioners
- the Multiple Sclerosis Society or the Stroke Association.
- Since 2010 and more recently, a new set of campaigning user-led organisations and networks run and controlled by disabled people have emerged. These include, for example:
- DPAC (Disabled People Against the Cuts)
- We Are Spartacus - Pat’s Petition, subsequently the WOW Petition
ULOs share common values
What is common to all of health and social care user groups is that they are based on shared values of:
- the right to choice and control
- the principle of ‘nothing about us without us’
- the struggle for full civil and human rights (Morris, 2006).