What we’ve achieved

8 March 2022

20 years

2002 –the year of the Queen’s Golden Jubilee, and when the Euro became the official currency of 12 EU members. It was also the year Shaping Our Lives was officially constituted. Our constitution didn’t make front page news, but nevertheless, we have spent the last two decades (and more) working hard to ensure the voices of Disabled people and others from diverse and marginalized communities are heard.

 We have been humble about our impact in the past two decades, but we wanted to take a moment to celebrate some of the things we have achieved, especially for a small, user-led organization. Like most user-led groups, we’ve struggled with funding challenges and sustainability, not to mention the ongoing battle to be recognized and heard amongst larger, non-user led, national charities. Despite that, we’ve always punched above our weight, continually making the case for meaningful, inclusive service user involvement, which can make for better services for everyone.

Here are some of the things we’re proud of:

We’ve made the case for listening to people with lived experience at the highest levels

• We campaigned for and contributed to the introduction of central government provisions for user and carer involvement in all stages of social work education; and central funding to support it.

• We secured a ministerial document and commitment to recognising and rewarding user involvement in policy and provision for social care (under New Labour).

• We influenced improvements in Department of Work and Pensions (DWP) policy regarding the involvement of people receiving non- contributory benefits at the time.
  
  
• We helped secure government commitments to user involvement in research funding allocation in health, mental health and social care
  
  
• Recommendations from our review of the Health and Care Professions Council (HCPC) Standards of Conduct, Performance and Ethics led to the standards being re-written prior to public consultation, and re-structured with a focus on service user and carer outcomes.

We’ve conducted groundbreaking research with real-life impacts

• We 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.

• We created ‘A Refuge for All; Best Practice Toolkit’, a user-led approach to improving access for disabled women experiencing violence and abuse, piloted in Birmingham and Bromley. Our General Manager was featured in the BBC’s 100 Women Series for this influential work, which was used to shape better provision in the Domestic Abuse Bill.

• Our Mutual Benefits project (in partnership with University of Worcester) has enabled more Disabled people to become foster carers for the disproportionate number of Disabled children needing foster homes. Ofsted have made policy changes and the work is detailed in a practice note for social care professionals by CoramBAAF (the successor organisation to the British Association for Adoption and Fostering).

• Our research ‘Including the Missing Voices of Disabled People in Gypsy, Roma and Traveller Communities’ resulted in four films highlighting the exclusion of Disabled people from these communities in policy and delivery of health and social care services.

• We have researched 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, resulting in four groundbreaking reports – Locked in or locked out?, Behind Closed Doors, Crisis, Challenge and Change, and Engaged or Ignored?

Working in partnership

We are currently working in partnership with King’s College London, University of Hertfordshire, London School of Hygiene and Tropical Medicine, and Southend-on-Sea Borough Council.

We are one of three international partners to develop a European model for social work education entitled ‘Mend the Gap’, and started an international network of service users and academic leaders called PowerUs. PowerUs now has an independent, substantial presence at international social work conferences, promoting the ‘Mend the Gap’ model of service user involvement in social work education.

This is but a small snapshot of our achievements. It’s hard for us to quantify the number of lives our work has impacted so we don’t have any big stats to share with you. But we know that making sure service users are heard, valued, and involved is absolutely vital to better, fairer services for everyone. And that is what we will continue to strive for in the years to come.