The Future of Social Care – book launch and webinar
A free webinar and book launch for The Future of Social Care: From Problem to Rights-based sustainable solution
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My Voice Matters – a guide for people who want to share their lived experience
September 2023
The My Voice Matters guide is designed to help you understand the power and benefits of sharing your lived experience.
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.
Reaching out to Deaf and Disabled People in Gypsy, Roma and Traveller communities
February 2023
This short guide provides some headline tips for Deaf and Disabled People’s Organisations (DDPOs) who provide services for Deaf and Disabled people from all communities.
Venue accessibility checklist
December 2022
Download our handy checklist for ensuring venue accessibility when organising inclusive events and conferences.
Shaping Our Lives Statement on Involvement payments
January 2023
Shaping Our Lives supports making involvement payments to people who share their experiences of using health and social care services. This is our statement detailing our position on this.
Thinking Outside the (Tick)box November 2022 – Conference outputs
December 2022
In November 2022 Shaping Our Lives held the UK's first user-led inclusive involvement conference. Here you can download the speaker notes and discussion notes.
We are not hard to reach article (Word)Download the speaker notes from the conference (Word)Building trust, making it meaningful discussion notes (Word)Download notes from Zebra Access (PDF)Download Slides from Zebra Access (Powerpoint)Download poetry from the conference (Word)Intersectionality and Involvement article (Word)
An interview with Peter Beresford to mark 20 years of Shaping Our Lives
May 2022
In this interview, our current Co Chair Peter Beresford talks about the history of Shaping Our Lives, our achievements, our challenges, and what we hope for in the future.
Rethinking social care – fixing our broken health and care system
April 2022
Here is the Shaping Our Lives statement on health and social care - what needs to be done to fix a broken system.
Webinar: Why participatory social policy now?
April 2022
Policy Press in association with Peter Beresford of Shaping Our Lives is launching a new series of free webinars on participatory social policy. This first event examines this approach to social policy, questioning traditional ones and looking at what possibilities this offers for the future.
Digital Communication Technology in Social Work
April 2022
This guide aims to give Disabled people advice and information people on using such digital communication technologies to access social work services.
Download practice guide for social workers (PDF)Download guide for Disabled people (PDF, print version)Download guide for Disabled people (PDF, online version)Download guide for Disabled people (PDF, easy read version)Download guide for Disabled people (PDF, large print version)Download the summary of research findings (Word)
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.
Peter Beresford and Colin Slasberg
The social care white paper – Rehashing the glossy brochure with zero change
December 2021
In this article, Peter Beresford and Colin Slasberg critique the latest social care white paper.
Peter Beresford and Colin Slasberg
A New Equalities and Human Rights Commission Report – Harbinger of an Authentic 1948 Moment for Social Care
June 2021
This article was written in response to the The Equalities and Human Rights Commission document regarding Independent Living.
Becki Meakin and Jurgen Grotz
Throwing away the rulebook: Five things you should consider when planning interactive online events, to make them more inclusive.
July 2020
Practical ideas and examples to make online meetings more accessible.
Peter Beresford
Take nothing for granted about volunteering – Volunteering and Ideology event blog post and videos
In this blog post, Peter Beresford, chair of the event, highlights some of the key discussions that took place around volunteering - how do people understand and define volunteering, and what is its impact on volunteers and those they work with.
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.
Peter Beresford, Mark Harrison
Problems with development – beyond the OXFAM crisis
September 2020
This blog looks at the failures of outsourcing service delivery to international non-governmental organisations internationally and to private businesses at home in the UK.
Dr Peter Unwin, Becki Meakin and Alexandra Jones
Mutual Benefits – The Potential of Disabled People as Foster Carers
July 2020
This video supports a pilot project exploring the opportunities and barriers surrounding inclusivity of and accessibility for Disabled people wishing to become foster carers.
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 and Sarah Yiannoullou
The Future of User-led Organisations Event Summary
May 2020
These notes summarise an event to create dialogue between user-led organisations and funders about these issues.
Becki Meakin and Sarah yiannoullou
The Future of User Led Organisations Briefing
May 2019
This paper sets out the issues fuelling the crisis facing user-led organisations in the hope of prompting positive discussion about potential solutions.
Becki Meakin
Special Care Dentistry Focus Group Report
April 2019
These notes document a focus group event held in April 2019, which heard from Disabled people about how special care dental services could be redesigned to work better for patients.
Becki Meakin
A Refuge for All Practice Toolkit
March 2019
This best practice toolkit has been developed to help services become more accessible and inclusive for disabled women who are seeking support because they are experiencing (or have experienced) violence and abuse.
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.
Win-Win Alliance
Top tips for co-production
2019
This document provides a range of simple, practical ideas for ensuring inclusive and accessible involvement activities.
Win-Win Alliance
Essential elements for effective co-production
2019
This document considers eight essential elements for effective co-production and involvement activities.
Win-Win Alliance
Definition of co-production
2019
This document considers the various definitions of co-production as an approach that is still developing and changing.
Peter Beresford
The future of social care: video by Peter Beresford
November 2018
This video is an interview with Shaping Our Lives Chair Peter Beresford, exploring user involvement and how people can have more equal access to having a say over their lives.
Peter Beresford
From a system of social care in crisis, to a support for independent living and a creative economy
November 2018
Transcript of a presentation given by Peter Beresford at the November 2018 Reclaim Social Care Conference, discussing the failings of the UK's social care system and pointing to new models of support.
Peter Beresford, Mark Harrison
Social care is broken beyond repair – so what should replace it?
November 2017
This blog outlines the dire condition of social care provision in England and Wales and advocates for the establishment of a right to independent living and a universal national independent living service as potential solutions.
Becki Meakin, Colin Cameron, Michele Moore, Joanna Matthews
Improving Understanding of Service User Involvement and Identity – A Guide for Disabled People who are Interested in being a Service User Representative
November 2017
This guide is for Disabled people who are thinking about becoming a service user representative. It provides top tips about how to improve the experience of being a service user representative.
Becki Meakin, Colin Cameron, Michele Moore, Joanna Matthews
A Guide for Service Providers and Practitioners Organising Involvement Activities with Disabled People
November 2017
This guide provides essential information for professionals who want to hear the views of Disabled people and use this knowledge to make services efficient and effective for the people who use them. The advice and tips detailed in this report reflect the principles of the social model of disability.
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.
Consultation: Can it Damage My Health?
2017
In this video, Peter Beresford considers the role of user involvement through consultation.
Peter Beresford
User involvement in professional education and learning (Part Two)
July 2017
This video is the second part of a two-part video about user involvement in professional occupational training and education.
Peter Beresford
Why user involvement in research and evaluation is a bad idea
March 2017
This video satirically presents the case for why user involvement in research and evaluation is a bad thing.
Peter Beresford
User involvement in professional education and learning (Part One)
March 2017
This video is the first part of a two-part video about user involvement in professional occupational training and education.
Peter Beresford
How Not To Involve People in Your Organisation
February 2017
This video satirically illustrates bad examples of user-led processes in order to guide organisations in the implementation of good processes.
Peter Beresford
Regulation and Service User Involvement
January 2017
This video looks at how regulation has backfired as a framework for delivering strong support and services, and how user involvement could undo the damage done by 'regulation'.
Peter Beresford
How Not To Do Service User Involvement
January 2017
This video satirically illustrates bad examples of user involvement in order to guide policy-makers and organisations in the implementation of good processes.
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 Charter Guide
June 2015 - November 2016
This guide explains why the Charter was written and gives an outline of how and when it can be used.
BASW and Shaping Our Lives
Disabled adults and social workers Charter
June 2015 - November 2016
This charter was developed by Disabled adults and social workers working together as equal partners. The charter lays out how these two groups will work together to tackle physical, social, economic and other barriers to independent living.
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
Personal Budgets in Social Care inquiry
March 2016
This document outlines Shaping Our Lives' written evidence given to the Committee of Public Accounts on the use of personal budgets in social care.
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
Valuing direct experience: a basis for renewing research
June 2013
This paper explores first hand experience and its potential role and central importance in the construction of knowledge.
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
Beyond the Usual Suspects Guide
2013
The purpose of this guide is to offer practical help to develop more inclusive involvement for the future so that everyone who wants to be involved has equal opportunities to do so.
Peter Beresford
Beyond the Usual Suspects Electronic Guide 6 Access check list
2013
This check list offers a template that can be used to help meeting or event planners create and run a meeting that is accessible to everyone in order to support the inclusive involvement of disabled people and service users ‘public/patient involvement'.
Peter Beresford
Beyond the Usual Suspects Electronic Guide 5 Ground Rules
2013
This simple and practical guide details the behavior that's expected of all meeting participants in order to support the inclusive involvement of disabled people and service users ‘public/patient involvement'
Peter Beresford
Beyond The Usual Suspects Electronic Guide 3 Positive meetings and get togethers
2013
This guide to positive meetings and get togethers forms part of a collection of practical resources to support the inclusive involvement of disabled people and service users ‘public/patient involvement'
Peter Beresford
Beyond the Usual Suspects Electronic Guide 2 Making Activities Accessible
2013
This guide to making activities accessible forms part of a collection of practical resources to support the inclusive involvement of disabled people and service users in ‘public/patient involvement’
Peter Beresford
Beyond the Usual Suspects Electronic Guide 1 Some key questions
2013
This guide to key questions forms part of a collection of practical resources to support the inclusive involvement of disabled people and service users in ‘public/patient involvement’.
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: Towards a person-centred approach
2011
This book explores with service users, practitioners, carers and managers what person-centred support means to them, what barriers stand in its way and how these can 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.
Suzy Croft, Catherine Bewley, Peter Beresford, Fran Branfield, Jennie Fleming, Michael Glynn, Karen Postle.
Person-Centred Support: a guide to person-centred working for practitioners
This guide provides service users with useful information and practical advice about person-centred support for practitioners.
Catherine Bewley, Fran Branfield, Michael Glynn, Peter Beresford,Suzy Croft, Jennie Fleming, Karen Postle
Person Centred Support- a guide for service users
2011
This guide provides service users with useful information and practical advice about seeking person-centred support.
Michael Glynn, Fran Branfield, Peter Beresford, Catherine Bewley, Suzy Croft, Jennie Fleming, Karen Postle
Making a Change: A guide to running successful and accessible workshops and training
2011
This guide is designed to help people who are setting up training for service users, providing them with quick and easy guidance on how to make that training accessible and inclusive.
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.
Peter Beresford, Vicky Nicholls, Michael Turner
Examples Of User Controlled Research
2009
This review summarises examples of user-controlled research circa 2009, with the aim of facilitating a better national understanding of the diverse nature of user-controlled research projects concerning health and social care research in England.
Peter Beresford
What future for care?
September 2008
This paper explores a new conceptual framework for care built on the idea of person-centred support, or 'personalisation'.
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.
Commission for Social Care Inspection
Benefit barriers to involvement: finding solutions
October 2007
This report outlines the key themes from a 2007 seminar on the benefit barriers to involvement - that is, the ways in which the current benefit system discourages or prevents people in receipt of benefits from getting involved.
Peter Beresford
The Changing Roles and Tasks Of Social Work From Service Users’ Perspectives
March 2007
This paper provides collects the views of service users about social work roles and tasks.
Fran Branfield, Peter Beresford, Enid Levin
Common Aims: A strategy to support service user involvement in social work education
February 2007
This paper explores how service user and care organisations can develop their involvement in the undergraduate and post graduate social work degree and drawing on successes of the first two years, identifying existing barriers to successful partnership and possible ways forward.
Jennifer Taylor, Vanessa Williams, Raymond Johnson, Ian Hiscutt, Maggie Brennan
We are not stupid
2007
This book explores the experiences of people with learning difficulties, how they are treated and what needs to change.
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.