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What is Inclusive Involvement?

Involvement activities enable people to have a say in policies and services that affect their lives. It can mean sharing experiences of using services, of being part of a diverse community or of having an impairment or long-term health condition. There are many different types of involvement including consultation, engagement and co-production.

You may complete a survey about a local health service, take part in a focus group with your local authority, or share your lived experiences with students on a social work degree course. Involvement may be a one-off consultation, a series of engagement events, or an equal partnership of service users and service providers to co-produce a service or research study.

However, not everyone has an equal chance to be heard in involvement activities. People who face inequalities in life also face additional barriers to getting involved. If the barriers are not removed then views, needs and perspectives may routinely go unheard…

Person from Shaping Our Lives at a march. The banner besides them has the words 'Social Workers and Service Users against Austerity. Side by Side for Social Justice'. The banner has several organisation logos, one of which is Shaping Our Lives.'
Person from Shaping Our Lives holding a banner with the words 'Our History'

History of Shaping Our Lives

Shaping Our Lives is a non-profit making user-led organisation specialising in the inclusive involvement of Disabled people and people from other marginalised communities.

Shaping Our Lives enables individuals to have a stronger voice. Our work has demonstrated that by removing barriers and promoting inclusion, the value of lived experience can be equal to other professional competencies.

Shaping Our Lives started as a user-led project in 1996 and was registered as a non-profit making company in 2002. In 2021 we registered as a Community Interest Company to emphasise the social impact of our work.

Read about our people.

Person from Shaping Our Lives holding a banner with the words 'Our Work'

Current Work

Shaping Our Lives promotes system and social change through the voices of those people most often excluded. Our work has been instrumental in supporting national policy development and we provide practical support for user groups and others.

We work to promote the voices of different equality groups who use health and social care services, and other services provided by the public and voluntary sectors.

We call those people service users and with them we tackle the issues they face and needs they have. Most – but not all – of our work is with Disabled people because 70% of health spend and most of adult social care spend is on Disabled people. Our expertise, however, is of working with people with multiple identities and disadvantages.

We recognise not everyone likes the term ‘service user’. Our members have agreed to use this term. Read more about definitions and meanings, and what we mean by them.

Person from Shaping Our Lives holding a banner with the words 'Our Impact'

Our Impact

Some of our successes:

  • Secured a ministerial commitment to recognising and rewarding user involvement in policy and provision for social care
  • Researched and documented the longer term impacts of COVID-19 and national and regional lockdowns on deaf and Disabled people, Deaf and Disabled People’s Organisations (DDPOs) and patient groups. This resulted in four groundbreaking reports investigating the use of remote technology by deaf and Disabled people during and beyond the pandemic; the experiences of DDPOs and patient groups during the pandemic; and the longer term impacts of COVID-19, and resulting lockdown measures, on independent living for deaf and Disabled people.
  • Influenced the introduction of central government provisions for user and carer involvement in all stages of social work education; and central funding to support it.
  • Advised government on what approach service users would like to see in future social care funding through representation on the Dalton Commission external committee.
  • Secured government commitments to user involvement in research funding allocation in health, mental health and social care, through representation on government and research committees.
  • Developed the evidence base leading to personalisation policies and personal budgets. This was instrumental in Disabled people having choice and control of the services they use and how they live their lives.
  • Improving Department of Work and Pensions (DWP) policy regarding the involvement of people currently receiving non-contributory benefits.
  • Reviewed the Health and Care Professions Council (HCPC) Standards of Conduct, Performance and Ethics. Our recommendations led to the standards being re-written prior to public consultation, and re-structured with a focus on service user and carer outcomes.
  • With international partners, developed a European model for social work education entitled ‘Mend the Gap’. We started PowerUs, an international network of service users and academic leaders which continues to have substantial presence.
  • Developed ‘A Refuge for All; Best Practice Toolkit’, a user-led approach to improving access for Disabled women experiencing domestic violence, piloted in Birmingham and Bromley. Our General Manager was featured in the BBC’s 100 Women Series for this influential work, which was used in the Domestic Abuse Bill.

Vision

A society in which everyone has equal life chances and support for independent living; a society which prioritises inclusion.

Mission

We work with people, especially those facing the biggest barriers, to build better, more inclusive services and support.

Our Core Beliefs

  1. We believe that everyone should have an equal opportunity to be listened to by policy makers.
  2. We believe in treating diversity with equality in everything – so that no one is left out.
  3. We believe in being honest and always working openly.
  4. We believe in respecting and representing everyone’s ideas.
  5. We believe in influencing policy so people have more say and control over their lives and support.