Skip to content


User-led groups in our network

8 March 2023

Did you know that Shaping Our Lives is a user-led organisation? That means we are run by and for the people we support.

In our work on the Future of user-led organisations, with the National Survivor User Network (NSUN), we defined user-led groups in terms of value, power, and knowledge:

  • It is based on clear values of independence, inclusive involvement and peer support.
  • Disabled people and/or people with lived experience of distress control the
  • organisation through leadership of decision-making.
  • It is uniquely identified by the direct lived experience and full inclusion of Disabled
  • people and/or people with lived experience of distress

We have a network of user-led organisations listed on our website. In recent years the number of them has declined, affected by funding cuts, COVID measures, and the cost of living crisis. It hasn’t been an easy time for user-led groups.

We provide a free online listing to user-led organisations, and a blog with regularly updated funding and training opportunities and useful resources, which we hope are helpful in this difficult and challenging climate.

We have created some bar charts to show the different groups of people that the organisations listed on our website serve. The total number of organisations is 329 as of February 2023, and many of the organisations serve more than one group of people, for example, they may offer services to Disabled people and carers. The percentages do not total 100 because of the multiple groups of people many of the organisations serve.

This bar chart represents the types of User Led Organisations hosted on the Shaping Our Lives website. - a total of 329 as of February 2023. The bars are alternating dark purple and dark turquoise.  The total percentages add up to more than 100% because some groups serve multiple groups of people. There are 20 categories listed from left to right they are: All Service Users (11%), Asylum Seekers and Refugees (1%), Black and Minority Ethnic Communities (3%), Carers (45%), Children, Young People, and Families (4%), Deaf People (9%), Disabled People (45%), Gypsy Roma Traveller (1%), LGBTQI+ (3%), Mental Health Service Users and Survivors (25%), Older People (8%), Other (3%), People Living with HIV or AIDS (1%), People who are Neurodivergent (10%), People who have Experienced Violence or Abuse (1%), People who Self-Harm (2%), People with Learning Difficulties or Disabilities (15%), People with Long-Term Health Conditions (15%), Prisoners or People with Experience of the Criminal Justice System (1%), and Users of Alcohol and Substance Services (2%).

We would love to invite more user-led groups to be listed on our website. It’s free and very easy – get in touch with and we can make it happen.

Other useful links: