Who we are and how we can help you
June 2023
If you'd like to know more about Shaping Our Lives, please download our leaflets about what we do and how we can help you.
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Gillian Batty, Gemma Humphrey, Becki Meakin
Tickboxes and Tokenism? Service User Involvement Report 2022
February 2022
This report is the result of a survey we ran in 2021 to explore people's experiences of service user involvement. This user-led research shows the current picture of involvement and explores the barriers that deaf and Disabled people face when wanting to share their lived experience.
Adam Goodall, Joanna Matthews, Becki Meakin
Shaping Our Lives review of the Commission on the Future of Social Security Executive Summary
June 2021
In January 2021, Shaping Our Lives was commissioned to conduct an independent review of the Commission’s work to date. Its purpose is to document the Commission’s genesis and evolution, assess whether the Commission’s current form is ‘fit for purpose’, and make recommendations on actions to ensure the Commission’s future growth and sustainability.
Amanda Warburton-Wynn
A Review into Domestic Homicide and Safeguarding Adults Reviews Relating to Victims with Additional Vulnerablilties
2021
This report reviews Domestic Homicide Reviews and Safeguarding Adults Reviews where the victim had an additional vulnerability with the aim of identifying new ways of protecting those victims of domestic abuse from the additional risks that they face.
Becki Meakin
Locked In or Locked Out?
December 2020
This report reflects on the use of remote technologies by d/Deaf and Disabled people during and beyond the first national COVID-19 lockdown.
Joanna Matthews
Engaged or Ignored? – Reflections from Patient Participation Groups about the Impact of COVID-19
December 2020
This report reflects on how patient groups across England involved their patients during the COVID-19 pandemic, drawing specifically on the experiences of five people who were, before lockdown started, lay members of patient groups.
Joanna Matthews
Crisis, Challenge and Change – Reflections from Deaf and Disabled people’s user led organisations about the impact of COVID-19 on their work in 2020.
December 2020
This report reflects the experiences of Deaf and Disabled People's Organisations (DDPOs) operating in England during the COVID-19 pandemic, and the impact that the pandemic had on their work.
Becki Meakin
Behind Closed Doors
December 2020
This report investigates how the COVID-19 pandemic has impacted d/Deaf and Disabled people's abilities to live independently.
Dr Peter Unwin, Becki Meakin and Alexandra Jones
Including the Missing Voices of Disabled People in Gypsy, Roma and Traveller Communities
November 2020
This report investigates disability within Gypsy, Roma and Traveller (GRT) communities, and explores how the voices of Disabled people within GRT communities can be heard in key policy forums.
Dr Peter Unwin, Becki Meakin and Alexandra Jones
Mutual Benefits – The Potential of Disabled People as Foster Carers
July 2020
This report documents a two-year pilot project exploring the opportunities and barriers surrounding inclusivity of and accessibility for Disabled people wishing to become foster carers.
Becki Meakin
A Refuge for All Project and Findings Report
March 2019
This report provides guidelines for a user-led approach to improving access and service delivery for Disabled women, particularly in the violence and abuse sector.
Becki Meakin, Colin Cameron, Michele Moore, Joanna Matthews
Improving Understanding of Service User Involvement and Identity – Service User Identity Research Findings
November 2017
This report collects the experiences of service users who have become service user representatives, with the aim of understanding the challenges faced by service users in negotiating their dual role of both being a service user representative and recipients of services.
Sarah Carr, Peter Beresford, Tina Coldham
Assisted Dying: Developing the Debate – Exploring the issue of assisted dying and its legislation in the UK
2017
This report gathers the views of people on both sides of the assisted dying debate in order to try and find common ground that can provide the basis for positive policy development.
BASW and Shaping Our Lives
Disabled adults and social workers Appendix and References
June 2015 - November 2016
This document explains the social model of disability, identifies the evidence in support of the position statement, and lists the references used to prepare the position statement.
BASW and Shaping Our Lives
Disabled adults and social workers Position statement
Nov 2016
This position paper was developed by Disabled adults and social workers working together as equal partners. The paper expresses how these two groups can work together to tackle physical, social, economic and other barriers to independent living.
NSUN
Launch of ‘From Mental Illness Towards a Social Model of Madness and Distress’
June 2016
This report summarises the 2016 NSUN AGM and the launch of the report 'From Mental Illness Towards a Social Model of Madness and Distress'.
Becki Meakin
Meet the Care Quality Commission with Shaping Our Lives
April 2016
This document collects notes from the 16th March 2016 regional workshop between the Care Quality Commission and people with learning difficulties.
Peter Beresford, Rebecca Perring, Mary Nettle, Jan Wallcraft
From Mental Illness to a Social Model of Madness and Distress
2016
This report collects the views of a range of mental health service users and survivors, exploring our social understandings of mental health and offering recommendations for taking forward more social approaches to and understandings of mental health and mental distress.
Becki Meakin, Joanna Matthews
Standards of proficiency for social workers in England – service user and carer input into the review
November 2015
This report collects the views of a number of service users and carers on the Health and Care Professions Council (HCPC) Standards of Proficiency for Social Workers in England.
Becki Meakin, Peter Beresford
Rethinking Disability Policy: Taking the discussion forward with disabled people
2015
These notes outline the discussions had at three seminars held over the summer of 2015 on the future of disability policy.
User Voice and Shaping Our Lives
Engaging people with lived experience of severe and multiple disadvantage
2015
This report explores the barriers to groups, particularly user-involved and user-led organisations, when trying to secure funding and run projects that will make systematic changes. This report also explores how to meaningfully involve service users in funding processes.
Becki Meakin
Campaigning for the Future: How can we work better to secure our rights?
2015
This report documents the views of Disabled people about UK disability policy in 2015 and discusses ways in which disabled people can lead improvements to policy and practice as experts by experience.
Sonia Howe, Becki Meakin, Farah Islam-Barrett
Helplines at the frontline of health and social care
2014
This report explores the challenges facing helplines in 2014, with call volumes and call complexity significantly increasing, and investigates five key themes relating to the modern helpline.
Becki Meakin, Joanna Matthews
Service User and Carer Consultation: Review of the Standards of conduct, performance and ethics of the Health and Care Professions Council
November 2013
This report collects the views of service users and carers regarding the HCPC Standards of conduct, performance and ethics, investigating awareness, accessibility and application of the standards.
Peter Beresford
Beyond the Usual Suspects Findings
2013
This document, based on a national research and development project funded by the Department of Health reports back on why some groups tend to be left out of ‘user’ or ‘public/patient involvement’ and how they may be fully and equally included in the future.
Peter Beresford
Beyond the Usual Suspects Research Report
2013
This report draws on findings from a national research and development project to outline the ways in which service users are excluded from involvement activities and to explore new and innovative ways of involving a diverse range of service users.
Peter Beresford, Bernd Sass
User Driven Commissioning
November 2012
This report sets out the background to and learning from an informal national programme on user-driven commissioning which culminated in a roundtable event in London in December 2011 and has been further developed since.
Peter Beresford, Eamon Andrews
Funding social care: what service users say
March 2012
This report documents the results of a national consultation undertaken in November 2011 of a diverse range of adult social care service users, fielding their responses to the government’s consultation Caring For Our Future: Shared ambitions for care and support.
Peter Beresford, Eamon Andrews
Caring for our future: what service users say
March 2012
This report presents the views of service users on current adult social care and their fears for the future of the service. It discusses proposed changes to the social care system at the time and makes recommendations on the future of adult social care, based on the experiences of service users.
Standards We Expect Consortium
Transforming social care: sustaining person-centred support
May 2011
This report summarises the findings of the Standards We Expect project, the first in-depth examination of the development of person-centred support from the perspectives of service users, carers, face-to-face practitioners and middle managers.
Karen Postle, Suzy Croft, Jennie Fleming, Peter Beresford, Catherine Bewley, Fran Branfield, Michael Glynn
Working Towards Person-Centred Support: a local case study
2011
This report explores how change was managed in a local authority day centre and what helped and hindered making that change towards person-centred support in a person-centred way.
Jennie Fleming, Michael Glynn, Rod Griffin, Peter Beresford, Catherine Bewley, Suzy Croft, Karen Postle
Person-Centred Support: choices for end of life care
2011
This report explores choices in end of life care, with a focus on barriers to person-centred support and how those barriers might be overcome.
Gina Barrett, Maggie Brennan, Dana Brown, Neil Burton, Wenda Gordons and Christina Watkins from People First Lambeth
Supporting People: a summary in easy words and pictures
2011
This document is an easy-read summary of the Standards We Expect project.
Peter Beresford, Mary Nettle, Rebecca Perring
Towards a social model of madness and distress? Exploring what service users say
November 2010
This report explores mental health service users’ views about social approaches to madness and mental distress and their relationship with the social model of disability.
Fran Branfield
Developing User Involvement in Social Work Education
December 2009
This report assesses service user involvement in the education and training of social workers following changes to the social work qualification framework in 2003-2004.
Peter Beresford, Frances Hasler
Transforming Social Care: Changing the future together
April 2009
This report collects the views of service users and policy makers on what service users want for future social care and how they think it can be achieved.
Fran Branfield, Jenny Willis
Assessing future housing need for older people
April 2009
This report investigates how the needs of older people living in Cumbria might affect their the housing and welfare needs as they get older.
Fran Branfield
Proposal for the replacement of six residential care homes in Cumbria: A service user consultation
May 2008
This report collects the views of the residents of six residential care homes in Cumbria - the first of 33 homes that the Cumbria County Council operated to be included in the Council’s modernization plan - on the council’s proposals for change in the provision of their care services.
The House of Commons
User Involvement in Public Services – Report of the House of Commons Public Adminstration Select Committee
April 2008
This Select Committee report considers forms of user involvement in public services and explores the possibilities and implications of greater user involvement.
Shaping Our Lives, National Centre for Independent Living, University of Leeds Centre for Disability Studies
Developing social care – service users driving culture change
November 2007
This review looks at how service users and user-led organisations have brought about changes and improvements to social work and social care.
Fran Branfield, Peter Beresford
Making User Involvement Work: Supporting service user networking and knowledge
2006
This report provides an exploration of the state of service user networking and knowledge in the mid-2000s, with a focus on what impact these activities were having, what problems they faced and what impact they might have had for the future.
Michael Turner, Peter Beresford
Contributing on Equal Terms: Service user involvement and the benefits system
October 2005
This report documented the problems that service users encountered when receiving payments for participating in user involvement initiatives while also receiving state benefits.
Michael Turner, Peter Beresford
User Controlled Research: Its meanings and potential
2005
This report outlines the definition, nature and operation of user-controlled research as practiced at the time.
Michael Turner
From outset to outcome: what people think of the social care services they use
2003
This report collects the overall findings of Shaping Our Lives' early development projects, carried out in conjunction with the Black User Group, Ethnic Disabled Group Emerged (EDGE), Footprints, Waltham Forest Black Mental Health Service User Group, and Service Users' Action Forum.
Michael Turner, Phil Brough, R.B. Williams-Findlay
Our Voice in Our Future: Service users debate the future of the welfare state
2003
This report describes the implementation and results of the Our Voice in Our Future project, set up in 1999 to identify key issues for service users in the future of welfare, rights and entitlement in social care and disability.
Michael Turner
Shaping Our Lives project report 1998
1998
Read this report from 1998, about the origins of Shaping Our Lives. It covers how the project was established and our aims.